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Overtreatment?

Forums General Melanoma Community Overtreatment?

  • Post
    Bob B.
    Participant

      Based on a self-diagnosed melanoma (Stage 1b due to Clark IV, Breslow 0.63-.8 (2 reports), mitotic rate zero, regression etc- innocuous) I had excised in 2010 with no recurrence, I have the impression there is widespread:

         (1)  Overuse of medical tools to treat early Stage melanoma.   Biopsies, Scans, SLNB's, blood tests, etc.

         (2)  Reliance on 1960's Clark to stage melanomas.

         (3)  Underuse of Mitotic Rate to stage melanomas.   Lack of standardization of histology parameters.

      Based on a self-diagnosed melanoma (Stage 1b due to Clark IV, Breslow 0.63-.8 (2 reports), mitotic rate zero, regression etc- innocuous) I had excised in 2010 with no recurrence, I have the impression there is widespread:

         (1)  Overuse of medical tools to treat early Stage melanoma.   Biopsies, Scans, SLNB's, blood tests, etc.

         (2)  Reliance on 1960's Clark to stage melanomas.

         (3)  Underuse of Mitotic Rate to stage melanomas.   Lack of standardization of histology parameters.

         (4)  Exaggeration of the effects on melanoma of UV exposure, understating of UV necessity to fix Vitamin D-  protection against melanoma.

      For eight months (since July, 2011)  I have been tracking a second tumor 20 cm from the first (above), self-diagnosed again as melanoma.   About to have it excised WITHOUT a biopsy, pathology to be done afterwards using two independent laboratories.

      Any comments on the uses and disuses of medical science to treat early Stage melanomas?

       

       

       

        

    Viewing 17 reply threads
    • Replies
        Janner
        Participant

          You are stage IA, not stage IB.  Clark's Level is no longer a staging parameter since late 2009.  Mitosis replaced it.  0 mitosis with no ulceration and <1mm makes you stage IA, not stage IB. 

          You said before you self diagnosed your melanoma.  What do you mean by that?  I found my 3 primaries and asked my doctor to remove them.  DId I self diagnose myself?  Who removed your primary?  Who did the pathology?

          1.  Scans are rarely done for stage I.  Certainly not overused.   SNB depends on where you are located.  Some countries do it more than others, and in the US, different depths (and other factors) are used for criteria at different locations.  Scans are rarely done for stage IA or early stage IB unless there are other symptoms.  Blood tests are typically baselines if done at all.

          2-3. Up until late 2009, Clark's Level was still part of staging.  It takes time for all doctor's to make transition.  Mitotic rate replaced Clark's Level so again is new.  Other histological parameters have been studied, but obviously haven't shown statistical significance or they would have been included in the latest staging parameters.   As for UV, research is still inconclusive.  There is no concensus so we all have to make our own choices regarding UV exposure.  We know conclusively it causes the other types of skin cancer.  UV tanning beds also raise the risk for melanoma significantly. 

          As for "monitoring a tumor", are you talking about something subcutaneous or another pigmented lesion?  Are you just doing an excisional biopsy?  Why do you think it is melanoma?  You can "self diagnose" whatever you want, but if you are having a doctor remove it, it sounds a bit strange.  I have self diagnosed my 3 primaries and then asked a dermatologist to remove them.  What's the big deal with that?  I know my body better than anyone and I can monitor change better than anyone.

          I have been stage I for 20 years.  I have helped newly diagnosed early melanoma patients on this board for over 10 years.  I moderate a stage I email list.  I am EXTREMELY familiar with protocols and treatment options for stage I.  I rarely see overuse of medical tools.  Occasionally, you see doctors who seem to be biopsy happy.  It's one reason I push mole mapping photography – remove lesions that change, not those that just look a little funky.  It's why I have caught my 3 primaries.  The other side of the coin is you see patients who demand biopsies because they are worried everything is melanoma.  That behavior typically mellows after each reports shows lesions are not melanoma.   There are basic standards out there, and most stage I people who come through here are treated to the standard.  Not sure why you would think otherwise…

          Janner

            Bob B.
            Participant

              Dear Janner,

               
              Excellent.   I VERY much appreciate your time and insights.   Are you a physician, or simply very involved?
               
              We are, they are, we are ALL "blind Indians" feeling up the Elephant.   Then announce "The Truth".    However, mixing metaphors at will, we seem to be more or less on the same page:   You've read the fine print, I the lazyman's scan.   But since we learn from being wrong, I look forward to a few healthy slaps on the wrist.   Besides, nothing is definitive, especially not in the exciting field of oncology.  
               
              As one of the "blind Indians" I probably overstate what I merely feel:    Treatment of my melanoma(s) seems to have revealed the contours of a "health industry" (sic):  A rough pyramid.    Let's just say the "industry" starts at the top with "wholesale" oncology researchers, clinical studies, research hospitals that broadcast their latest findings through conferences and directly to >>>> National Cancer Associations and other institutions that collate and run the data to create staging and other parameters, then it all filters down to>>>> oncology clinics and independent oncologists at the "retail" end and on to>>> dermatologists (who have their sources, as well).
               
              Obviously it takes time for information from the latest studies to filter down to medical practitioners at the "retail level".   It's hard for a specialist of any kind to keep up with the latest research in a fast-growing field.   It takes time for doctors to try to disregard factors they have always depended on.   Maybe this all sounds like excuses.  Maybe they are, and reasonable ones, too.   
               
               Just that I figure there have to be explanations why such things as vintage 1960's Clark levels are, as I've been repeatedly instructed, "still used".  And why so often when they ARE used, are they still toward the top of the list, just under Breslow thickness?    Why don't all labs provide mitotic rates?    Why aren't standardized procedures to analyze mitotic rares unavailable?   Why do other factors such as regression, ets remain "controversial"?   Why do scans, blood tests, SNLB's have committed adherents at the same time that research statistics suggest they are often overprescribed?    Why do some oncologists insist first on a shave biopsy, others on a punch biopsy, others on neither until after excision, others on an SLNB without excision "to avoid disturbing the lymphatic drain field".   Why was an SLNB, which has no therapeutic value, no worthwhile correlation with survivability, but is useful only for staging purposes and prognosis-  suggested to me by a respected oncologist?   Why…. It's a long, long list.    
               
              You are probably closer to the essence of this particular Elephant .  At least you are more conversant with SOP (standard operating procedure).   Although there are plenty of guidelines, it seems to me that SOP is a myth.   Medical practice seems extremely varied.   Generally, the more we know, the more….
               
                   (1)  We are able to jettison distractions, peripheral 'noise'.    To some extent because cognitive dissonance forces us to choose in order to remain (quote) in control (unquote).
               
                   (2)  We see a lot more trees.  The more we see, the less we see of the forest.   You may have much more of a handle on what counts.   While I am still overly impressed with the plethora of varied, often contradictory diagnostic procedures.   And I'm referring only to the ones I've been offered, without even mentioning so-called 'alternative' treatments.
               
              Clarifying a couple points you've raised:
               
              (1)   Self diagnosis.   Evidently we both self-diagnosed.   We spotted primary tumors and asked to have them removed.  In my case, it turned out to be a plastic surgeon/dermatologist in Salvador, Bahia, Brazil.   A doctor friend had gone to school with him.  He was recommended, it was easy (the first step in Brazil, whether surgeon or plumber).   We used the lab he was used to using in the same building.   After pathology confirmed melanoma, I followed up with the city's leading oncologist who recommended a "second opinion":  pathology from the lab in HIS building.   Result:  both were about the same.
               
              (2)  Your comments, items 1-2.   Far as I can see, you confirm exactly what I've seen:   
                    An amazing variety of diagnostic and prognostic strategies, depending on many things, some of which you've noted.  Some of which you have not. 
                   Athough AJCC Melanoma Staging and Classification 2009, as well as other protocols completely eliminated Clark levels, many doctors have still NOT discontinued its use.  
                   Sometimes they keep Breslow at #1, mitotic rate at #2 (sometimes #1) but at most keep Clark and bump it to #3.   (Can't teach an old dog new tricks?)
                  
                   Despite the so-called elimination of Clark, this has apparently not penetrated (no pun) to all oncologists.  That my first 'primary' was Clark IV (dermal-epidermal) was THE reason an SLNB and PET were
                   counseled.   Breslow, mitotic rate were good (see below, please), but Clark is a "bone" many old dogs appear unwilling to drop.
                   It doesn't matter that Clark has been shown to be less predictive of outcome, less reproducible and more subjective than Breslow.  Nor that it is hard to differentiate between Clark Level II and Level III.

                   However Clark’s levels continue to be used to predict prognosis in patients with thin (less than 1.0 mm) melanoma (like mine) and a Clark’s level IV or V lesion (like mine, which has a worse prognosis).

                   Although the oncologist in fact suggested no formal Stage… the latter cluster of factors appeared to me to bump me to 1b.   And, as I said, he wanted a PET and an SNLB.  
                  I declined, based on my own superficial online research and a phone conversation with a relatively young "star" oncologist with his own clinic in Rio de Janeiro. 

                   
                  Paradoxically, or at least it seems so, you say  "most stage I people who come through here are treated to the standard.  Not sure why you would think otherwise…"   
                  Other than the "stage i" disclaimer I've noted, this seems to contradict both my experience and your previous comments on items 1-2.   No?
               
              (3)   Monitoring a tumor?   Sorry.  Yes, it's a pigmented lesion.   
                     Are you just doing an excisional biopsy?   That is what I am after.   Same as with the first one that was confirmed a melanoma.  
                     Why do you think it is melanoma?   Looks like it, compared to photos.  Besides I've already had one, which can be a precursor to others.
                             The usual:   Asymmetrical, growing (the past 8 months or more), diffuse edges lighter colored than the 'center', etc.
                     You can "self diagnose" whatever you want, but if you are having a doctor remove it, it sounds a bit strange.   "Strange", why?   You spotted yours, had it removed.   I did the same, and will do it again.
               
               
              In counterchronological order (last first)>>>   Second Growth #2 (aka "Melanoma", just my opinion);  Melanoma #1;  and Basal Cell 20 years ago.
               
              Attached:   Melanoma 02/29/2012 (photo) + Mitotic Rate Histology (issue)
                                 Melanoma TNM Staging 2010
               
              Skin cancer history:
              Second growth:     Apparent melanoma (self-diagnosed).
                                           July, 2011, first noticed.     Photo, attached:   right of the penny.
                                           Tracked for 8 months, apparent slow-growth.   Left anterior shoulder.
                                           No biopsy done, nor requested:   Refused.  
                                           Medical goal:   remove tumor, then two, independent pathology reports. 
              Melanoma #1:     Lentigo maligna melanoma, Stage Ib, trapezius, 2.5 cm X 1.5, left side near neck.   15-20 cm distant from "Second growth" (above and photo),
               Excised July 2010 by dermatologist in Salvador Brazil.   No prior biopsy. 
                Pathology (2 independent reports):   Breslow 0.63 (& 0.8);  Clark IV >1.0;  mitotic rate, zero;  regression,  
                other, "controversial" indicators:  innocuous.   SLNB and PET offered by oncologist in follow up
                 consultation.   Declined.   From my point of view, unnecessary, overtreatment.   
                                            No recurrence to date.
               
              Basal Cell:            Removed by MOHS from collar bone, +/- 1.5 cm diameter mid-1991
                                           No recurrence.   (Although melanoma later is consistent with early skin cancers…)
               
              I've attached a recent photo of the current one (#2), plus an abstract re:  mitotic rate histology confusion, etc.   If they don't go through, please let me know and I will resend.
               
              Thanks again VERY much for your assistance.   I'm looking forward to your reply whenever convenient.
               
              Best wishes,
               
              Bob Beadle
               
               
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              Mitotic Rate Histology.rtf Mitotic Rate Histology.rtf
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              Melanoma TNM Staging 2010.pdf Melanoma TNM Staging 2010.pdf
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              Bob B.
              Participant

                Dear Janner,

                 
                Excellent.   I VERY much appreciate your time and insights.   Are you a physician, or simply very involved?
                 
                We are, they are, we are ALL "blind Indians" feeling up the Elephant.   Then announce "The Truth".    However, mixing metaphors at will, we seem to be more or less on the same page:   You've read the fine print, I the lazyman's scan.   But since we learn from being wrong, I look forward to a few healthy slaps on the wrist.   Besides, nothing is definitive, especially not in the exciting field of oncology.  
                 
                As one of the "blind Indians" I probably overstate what I merely feel:    Treatment of my melanoma(s) seems to have revealed the contours of a "health industry" (sic):  A rough pyramid.    Let's just say the "industry" starts at the top with "wholesale" oncology researchers, clinical studies, research hospitals that broadcast their latest findings through conferences and directly to >>>> National Cancer Associations and other institutions that collate and run the data to create staging and other parameters, then it all filters down to>>>> oncology clinics and independent oncologists at the "retail" end and on to>>> dermatologists (who have their sources, as well).
                 
                Obviously it takes time for information from the latest studies to filter down to medical practitioners at the "retail level".   It's hard for a specialist of any kind to keep up with the latest research in a fast-growing field.   It takes time for doctors to try to disregard factors they have always depended on.   Maybe this all sounds like excuses.  Maybe they are, and reasonable ones, too.   
                 
                 Just that I figure there have to be explanations why such things as vintage 1960's Clark levels are, as I've been repeatedly instructed, "still used".  And why so often when they ARE used, are they still toward the top of the list, just under Breslow thickness?    Why don't all labs provide mitotic rates?    Why aren't standardized procedures to analyze mitotic rares unavailable?   Why do other factors such as regression, ets remain "controversial"?   Why do scans, blood tests, SNLB's have committed adherents at the same time that research statistics suggest they are often overprescribed?    Why do some oncologists insist first on a shave biopsy, others on a punch biopsy, others on neither until after excision, others on an SLNB without excision "to avoid disturbing the lymphatic drain field".   Why was an SLNB, which has no therapeutic value, no worthwhile correlation with survivability, but is useful only for staging purposes and prognosis-  suggested to me by a respected oncologist?   Why…. It's a long, long list.    
                 
                You are probably closer to the essence of this particular Elephant .  At least you are more conversant with SOP (standard operating procedure).   Although there are plenty of guidelines, it seems to me that SOP is a myth.   Medical practice seems extremely varied.   Generally, the more we know, the more….
                 
                     (1)  We are able to jettison distractions, peripheral 'noise'.    To some extent because cognitive dissonance forces us to choose in order to remain (quote) in control (unquote).
                 
                     (2)  We see a lot more trees.  The more we see, the less we see of the forest.   You may have much more of a handle on what counts.   While I am still overly impressed with the plethora of varied, often contradictory diagnostic procedures.   And I'm referring only to the ones I've been offered, without even mentioning so-called 'alternative' treatments.
                 
                Clarifying a couple points you've raised:
                 
                (1)   Self diagnosis.   Evidently we both self-diagnosed.   We spotted primary tumors and asked to have them removed.  In my case, it turned out to be a plastic surgeon/dermatologist in Salvador, Bahia, Brazil.   A doctor friend had gone to school with him.  He was recommended, it was easy (the first step in Brazil, whether surgeon or plumber).   We used the lab he was used to using in the same building.   After pathology confirmed melanoma, I followed up with the city's leading oncologist who recommended a "second opinion":  pathology from the lab in HIS building.   Result:  both were about the same.
                 
                (2)  Your comments, items 1-2.   Far as I can see, you confirm exactly what I've seen:   
                      An amazing variety of diagnostic and prognostic strategies, depending on many things, some of which you've noted.  Some of which you have not. 
                     Athough AJCC Melanoma Staging and Classification 2009, as well as other protocols completely eliminated Clark levels, many doctors have still NOT discontinued its use.  
                     Sometimes they keep Breslow at #1, mitotic rate at #2 (sometimes #1) but at most keep Clark and bump it to #3.   (Can't teach an old dog new tricks?)
                    
                     Despite the so-called elimination of Clark, this has apparently not penetrated (no pun) to all oncologists.  That my first 'primary' was Clark IV (dermal-epidermal) was THE reason an SLNB and PET were
                     counseled.   Breslow, mitotic rate were good (see below, please), but Clark is a "bone" many old dogs appear unwilling to drop.
                     It doesn't matter that Clark has been shown to be less predictive of outcome, less reproducible and more subjective than Breslow.  Nor that it is hard to differentiate between Clark Level II and Level III.

                     However Clark’s levels continue to be used to predict prognosis in patients with thin (less than 1.0 mm) melanoma (like mine) and a Clark’s level IV or V lesion (like mine, which has a worse prognosis).

                     Although the oncologist in fact suggested no formal Stage… the latter cluster of factors appeared to me to bump me to 1b.   And, as I said, he wanted a PET and an SNLB.  
                    I declined, based on my own superficial online research and a phone conversation with a relatively young "star" oncologist with his own clinic in Rio de Janeiro. 

                     
                    Paradoxically, or at least it seems so, you say  "most stage I people who come through here are treated to the standard.  Not sure why you would think otherwise…"   
                    Other than the "stage i" disclaimer I've noted, this seems to contradict both my experience and your previous comments on items 1-2.   No?
                 
                (3)   Monitoring a tumor?   Sorry.  Yes, it's a pigmented lesion.   
                       Are you just doing an excisional biopsy?   That is what I am after.   Same as with the first one that was confirmed a melanoma.  
                       Why do you think it is melanoma?   Looks like it, compared to photos.  Besides I've already had one, which can be a precursor to others.
                               The usual:   Asymmetrical, growing (the past 8 months or more), diffuse edges lighter colored than the 'center', etc.
                       You can "self diagnose" whatever you want, but if you are having a doctor remove it, it sounds a bit strange.   "Strange", why?   You spotted yours, had it removed.   I did the same, and will do it again.
                 
                 
                In counterchronological order (last first)>>>   Second Growth #2 (aka "Melanoma", just my opinion);  Melanoma #1;  and Basal Cell 20 years ago.
                 
                Attached:   Melanoma 02/29/2012 (photo) + Mitotic Rate Histology (issue)
                                   Melanoma TNM Staging 2010
                 
                Skin cancer history:
                Second growth:     Apparent melanoma (self-diagnosed).
                                             July, 2011, first noticed.     Photo, attached:   right of the penny.
                                             Tracked for 8 months, apparent slow-growth.   Left anterior shoulder.
                                             No biopsy done, nor requested:   Refused.  
                                             Medical goal:   remove tumor, then two, independent pathology reports. 
                Melanoma #1:     Lentigo maligna melanoma, Stage Ib, trapezius, 2.5 cm X 1.5, left side near neck.   15-20 cm distant from "Second growth" (above and photo),
                 Excised July 2010 by dermatologist in Salvador Brazil.   No prior biopsy. 
                  Pathology (2 independent reports):   Breslow 0.63 (& 0.8);  Clark IV >1.0;  mitotic rate, zero;  regression,  
                  other, "controversial" indicators:  innocuous.   SLNB and PET offered by oncologist in follow up
                   consultation.   Declined.   From my point of view, unnecessary, overtreatment.   
                                              No recurrence to date.
                 
                Basal Cell:            Removed by MOHS from collar bone, +/- 1.5 cm diameter mid-1991
                                             No recurrence.   (Although melanoma later is consistent with early skin cancers…)
                 
                I've attached a recent photo of the current one (#2), plus an abstract re:  mitotic rate histology confusion, etc.   If they don't go through, please let me know and I will resend.
                 
                Thanks again VERY much for your assistance.   I'm looking forward to your reply whenever convenient.
                 
                Best wishes,
                 
                Bob Beadle
                 
                 
                3 attachments — Download all attachments  

                photo.JPG photo.JPG
                1383K   View   Download  
                Mitotic Rate Histology.rtf Mitotic Rate Histology.rtf
                2K   View as HTML   Download  
                Melanoma TNM Staging 2010.pdf Melanoma TNM Staging 2010.pdf
                148K   View   Download  
                 
                 

                Bob B.
                Participant

                  Dear Janner,

                   
                  Excellent.   I VERY much appreciate your time and insights.   Are you a physician, or simply very involved?
                   
                  We are, they are, we are ALL "blind Indians" feeling up the Elephant.   Then announce "The Truth".    However, mixing metaphors at will, we seem to be more or less on the same page:   You've read the fine print, I the lazyman's scan.   But since we learn from being wrong, I look forward to a few healthy slaps on the wrist.   Besides, nothing is definitive, especially not in the exciting field of oncology.  
                   
                  As one of the "blind Indians" I probably overstate what I merely feel:    Treatment of my melanoma(s) seems to have revealed the contours of a "health industry" (sic):  A rough pyramid.    Let's just say the "industry" starts at the top with "wholesale" oncology researchers, clinical studies, research hospitals that broadcast their latest findings through conferences and directly to >>>> National Cancer Associations and other institutions that collate and run the data to create staging and other parameters, then it all filters down to>>>> oncology clinics and independent oncologists at the "retail" end and on to>>> dermatologists (who have their sources, as well).
                   
                  Obviously it takes time for information from the latest studies to filter down to medical practitioners at the "retail level".   It's hard for a specialist of any kind to keep up with the latest research in a fast-growing field.   It takes time for doctors to try to disregard factors they have always depended on.   Maybe this all sounds like excuses.  Maybe they are, and reasonable ones, too.   
                   
                   Just that I figure there have to be explanations why such things as vintage 1960's Clark levels are, as I've been repeatedly instructed, "still used".  And why so often when they ARE used, are they still toward the top of the list, just under Breslow thickness?    Why don't all labs provide mitotic rates?    Why aren't standardized procedures to analyze mitotic rares unavailable?   Why do other factors such as regression, ets remain "controversial"?   Why do scans, blood tests, SNLB's have committed adherents at the same time that research statistics suggest they are often overprescribed?    Why do some oncologists insist first on a shave biopsy, others on a punch biopsy, others on neither until after excision, others on an SLNB without excision "to avoid disturbing the lymphatic drain field".   Why was an SLNB, which has no therapeutic value, no worthwhile correlation with survivability, but is useful only for staging purposes and prognosis-  suggested to me by a respected oncologist?   Why…. It's a long, long list.    
                   
                  You are probably closer to the essence of this particular Elephant .  At least you are more conversant with SOP (standard operating procedure).   Although there are plenty of guidelines, it seems to me that SOP is a myth.   Medical practice seems extremely varied.   Generally, the more we know, the more….
                   
                       (1)  We are able to jettison distractions, peripheral 'noise'.    To some extent because cognitive dissonance forces us to choose in order to remain (quote) in control (unquote).
                   
                       (2)  We see a lot more trees.  The more we see, the less we see of the forest.   You may have much more of a handle on what counts.   While I am still overly impressed with the plethora of varied, often contradictory diagnostic procedures.   And I'm referring only to the ones I've been offered, without even mentioning so-called 'alternative' treatments.
                   
                  Clarifying a couple points you've raised:
                   
                  (1)   Self diagnosis.   Evidently we both self-diagnosed.   We spotted primary tumors and asked to have them removed.  In my case, it turned out to be a plastic surgeon/dermatologist in Salvador, Bahia, Brazil.   A doctor friend had gone to school with him.  He was recommended, it was easy (the first step in Brazil, whether surgeon or plumber).   We used the lab he was used to using in the same building.   After pathology confirmed melanoma, I followed up with the city's leading oncologist who recommended a "second opinion":  pathology from the lab in HIS building.   Result:  both were about the same.
                   
                  (2)  Your comments, items 1-2.   Far as I can see, you confirm exactly what I've seen:   
                        An amazing variety of diagnostic and prognostic strategies, depending on many things, some of which you've noted.  Some of which you have not. 
                       Athough AJCC Melanoma Staging and Classification 2009, as well as other protocols completely eliminated Clark levels, many doctors have still NOT discontinued its use.  
                       Sometimes they keep Breslow at #1, mitotic rate at #2 (sometimes #1) but at most keep Clark and bump it to #3.   (Can't teach an old dog new tricks?)
                      
                       Despite the so-called elimination of Clark, this has apparently not penetrated (no pun) to all oncologists.  That my first 'primary' was Clark IV (dermal-epidermal) was THE reason an SLNB and PET were
                       counseled.   Breslow, mitotic rate were good (see below, please), but Clark is a "bone" many old dogs appear unwilling to drop.
                       It doesn't matter that Clark has been shown to be less predictive of outcome, less reproducible and more subjective than Breslow.  Nor that it is hard to differentiate between Clark Level II and Level III.

                       However Clark’s levels continue to be used to predict prognosis in patients with thin (less than 1.0 mm) melanoma (like mine) and a Clark’s level IV or V lesion (like mine, which has a worse prognosis).

                       Although the oncologist in fact suggested no formal Stage… the latter cluster of factors appeared to me to bump me to 1b.   And, as I said, he wanted a PET and an SNLB.  
                      I declined, based on my own superficial online research and a phone conversation with a relatively young "star" oncologist with his own clinic in Rio de Janeiro. 

                       
                      Paradoxically, or at least it seems so, you say  "most stage I people who come through here are treated to the standard.  Not sure why you would think otherwise…"   
                      Other than the "stage i" disclaimer I've noted, this seems to contradict both my experience and your previous comments on items 1-2.   No?
                   
                  (3)   Monitoring a tumor?   Sorry.  Yes, it's a pigmented lesion.   
                         Are you just doing an excisional biopsy?   That is what I am after.   Same as with the first one that was confirmed a melanoma.  
                         Why do you think it is melanoma?   Looks like it, compared to photos.  Besides I've already had one, which can be a precursor to others.
                                 The usual:   Asymmetrical, growing (the past 8 months or more), diffuse edges lighter colored than the 'center', etc.
                         You can "self diagnose" whatever you want, but if you are having a doctor remove it, it sounds a bit strange.   "Strange", why?   You spotted yours, had it removed.   I did the same, and will do it again.
                   
                   
                  In counterchronological order (last first)>>>   Second Growth #2 (aka "Melanoma", just my opinion);  Melanoma #1;  and Basal Cell 20 years ago.
                   
                  Attached:   Melanoma 02/29/2012 (photo) + Mitotic Rate Histology (issue)
                                     Melanoma TNM Staging 2010
                   
                  Skin cancer history:
                  Second growth:     Apparent melanoma (self-diagnosed).
                                               July, 2011, first noticed.     Photo, attached:   right of the penny.
                                               Tracked for 8 months, apparent slow-growth.   Left anterior shoulder.
                                               No biopsy done, nor requested:   Refused.  
                                               Medical goal:   remove tumor, then two, independent pathology reports. 
                  Melanoma #1:     Lentigo maligna melanoma, Stage Ib, trapezius, 2.5 cm X 1.5, left side near neck.   15-20 cm distant from "Second growth" (above and photo),
                   Excised July 2010 by dermatologist in Salvador Brazil.   No prior biopsy. 
                    Pathology (2 independent reports):   Breslow 0.63 (& 0.8);  Clark IV >1.0;  mitotic rate, zero;  regression,  
                    other, "controversial" indicators:  innocuous.   SLNB and PET offered by oncologist in follow up
                     consultation.   Declined.   From my point of view, unnecessary, overtreatment.   
                                                No recurrence to date.
                   
                  Basal Cell:            Removed by MOHS from collar bone, +/- 1.5 cm diameter mid-1991
                                               No recurrence.   (Although melanoma later is consistent with early skin cancers…)
                   
                  I've attached a recent photo of the current one (#2), plus an abstract re:  mitotic rate histology confusion, etc.   If they don't go through, please let me know and I will resend.
                   
                  Thanks again VERY much for your assistance.   I'm looking forward to your reply whenever convenient.
                   
                  Best wishes,
                   
                  Bob Beadle
                   
                   
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                Janner
                Participant

                  You are stage IA, not stage IB.  Clark's Level is no longer a staging parameter since late 2009.  Mitosis replaced it.  0 mitosis with no ulceration and <1mm makes you stage IA, not stage IB. 

                  You said before you self diagnosed your melanoma.  What do you mean by that?  I found my 3 primaries and asked my doctor to remove them.  DId I self diagnose myself?  Who removed your primary?  Who did the pathology?

                  1.  Scans are rarely done for stage I.  Certainly not overused.   SNB depends on where you are located.  Some countries do it more than others, and in the US, different depths (and other factors) are used for criteria at different locations.  Scans are rarely done for stage IA or early stage IB unless there are other symptoms.  Blood tests are typically baselines if done at all.

                  2-3. Up until late 2009, Clark's Level was still part of staging.  It takes time for all doctor's to make transition.  Mitotic rate replaced Clark's Level so again is new.  Other histological parameters have been studied, but obviously haven't shown statistical significance or they would have been included in the latest staging parameters.   As for UV, research is still inconclusive.  There is no concensus so we all have to make our own choices regarding UV exposure.  We know conclusively it causes the other types of skin cancer.  UV tanning beds also raise the risk for melanoma significantly. 

                  As for "monitoring a tumor", are you talking about something subcutaneous or another pigmented lesion?  Are you just doing an excisional biopsy?  Why do you think it is melanoma?  You can "self diagnose" whatever you want, but if you are having a doctor remove it, it sounds a bit strange.  I have self diagnosed my 3 primaries and then asked a dermatologist to remove them.  What's the big deal with that?  I know my body better than anyone and I can monitor change better than anyone.

                  I have been stage I for 20 years.  I have helped newly diagnosed early melanoma patients on this board for over 10 years.  I moderate a stage I email list.  I am EXTREMELY familiar with protocols and treatment options for stage I.  I rarely see overuse of medical tools.  Occasionally, you see doctors who seem to be biopsy happy.  It's one reason I push mole mapping photography – remove lesions that change, not those that just look a little funky.  It's why I have caught my 3 primaries.  The other side of the coin is you see patients who demand biopsies because they are worried everything is melanoma.  That behavior typically mellows after each reports shows lesions are not melanoma.   There are basic standards out there, and most stage I people who come through here are treated to the standard.  Not sure why you would think otherwise…

                  Janner

                  Janner
                  Participant

                    You are stage IA, not stage IB.  Clark's Level is no longer a staging parameter since late 2009.  Mitosis replaced it.  0 mitosis with no ulceration and <1mm makes you stage IA, not stage IB. 

                    You said before you self diagnosed your melanoma.  What do you mean by that?  I found my 3 primaries and asked my doctor to remove them.  DId I self diagnose myself?  Who removed your primary?  Who did the pathology?

                    1.  Scans are rarely done for stage I.  Certainly not overused.   SNB depends on where you are located.  Some countries do it more than others, and in the US, different depths (and other factors) are used for criteria at different locations.  Scans are rarely done for stage IA or early stage IB unless there are other symptoms.  Blood tests are typically baselines if done at all.

                    2-3. Up until late 2009, Clark's Level was still part of staging.  It takes time for all doctor's to make transition.  Mitotic rate replaced Clark's Level so again is new.  Other histological parameters have been studied, but obviously haven't shown statistical significance or they would have been included in the latest staging parameters.   As for UV, research is still inconclusive.  There is no concensus so we all have to make our own choices regarding UV exposure.  We know conclusively it causes the other types of skin cancer.  UV tanning beds also raise the risk for melanoma significantly. 

                    As for "monitoring a tumor", are you talking about something subcutaneous or another pigmented lesion?  Are you just doing an excisional biopsy?  Why do you think it is melanoma?  You can "self diagnose" whatever you want, but if you are having a doctor remove it, it sounds a bit strange.  I have self diagnosed my 3 primaries and then asked a dermatologist to remove them.  What's the big deal with that?  I know my body better than anyone and I can monitor change better than anyone.

                    I have been stage I for 20 years.  I have helped newly diagnosed early melanoma patients on this board for over 10 years.  I moderate a stage I email list.  I am EXTREMELY familiar with protocols and treatment options for stage I.  I rarely see overuse of medical tools.  Occasionally, you see doctors who seem to be biopsy happy.  It's one reason I push mole mapping photography – remove lesions that change, not those that just look a little funky.  It's why I have caught my 3 primaries.  The other side of the coin is you see patients who demand biopsies because they are worried everything is melanoma.  That behavior typically mellows after each reports shows lesions are not melanoma.   There are basic standards out there, and most stage I people who come through here are treated to the standard.  Not sure why you would think otherwise…

                    Janner

                    Minnesota
                    Participant

                      I am a 1B with a mitotic rate of 5 and negative SLB.

                      I found mine, I didn't diagnose it because I don't have a lab and I'm not into self-mutilation (lol). My derm said he would have given me the option of SLB if my mitotic rate had been 0, even though I was at 1.45mm, this is because my initial excision was done with margins that are now considered okay. 

                      There was concern about my mitotic rate by all the doctors I saw, and there still is. My derm said that he thinks I will have a recurrance in the same limb. I've had no blood tests, no scans. I go in every 3 mos. to get visually checked. That's it. I don't think its overtreatment. With that said, I do feel like a walking time bomb. I'm glad you don't, it's not a good feeling. 

                      As for the exaggeration of UV exposure, one only needs to look at the statistics of the types of people who get melanoma and their location's UV. I was ALWAYS careful in the sun to avoid burning and I have never been tan in my life; however, I live in Minnesota and for the last 20 years I've taken vacations in the winter and was exposed to intense sunlight, even though I was protected. I am fair-skinned and have some red in my hair, I developed many moles since my 20's. 

                      I just returned from the Carribean. I wore a hat outside, wore UPF clothing/swimwear, put sunscreen on my exposed skin, and had a great vacation. It wasn't that hard. Did it decrease my risk for future melanoma recurrance? I doubt it, but my WLE was well protected, which is just plain common sense.

                        Bob B.
                        Participant

                          Minnesota,

                          Janner's and your comments food for thought.   Much apprecited.

                          With a 1.45mm Breslow and mitotic rate 5, an SNLB seems more than reasonable.   I agree, no "overtreatment" there.  

                          In my case (.63/.8 Breslow, mitotic rate 0, the still overused Clark IV ) I've received opinions on treatment ranging from minimal (excision) to no excision and scans and an immediate (sight unseen) SLNB "to avoid distorting the lymphatic drain field".  And a ("likely") lymphadenectomy, to follow.    See what I mean?

                          Re:  Mitotic Rate

                          Although research as an indicator positions it near Breslow thickness, there's a sense that histology remains subject to unstandard approaches.   And the validity of resulting MR values?  Just saying….   No url, quoting recent abstract>>>

                          Melanoma Staging: Implications of Histologic Sectioning Procedures

                          Balch et al1 have stated that proliferation of primary melanoma as defined by the mitotic rate is a powerful and independent predictor of survival. As a result, primary tumor mitotic rate is now a required element for the seventh edition of the American Joint Committee on Cancer melanoma staging system. We suggest that careful serial histologic sectioning of the melanoma is necessary to establish the mitotic rate with confidence. The absence of mitosis may be established with certainty only after total serial sectioning of the paraffin block, which can be laborious to perform. Alternatively, it is necessary to establish guidelines for the number of sections that need to be examined to determine the mitotic rate. Interpretation of the mitotic rate is difficult when the procedure for sectioning the paraffin block is not clearly specified.

                          Re:  Sunlight & Melanoma

                          We all know of people who always went well covered, lived in colder, high latitudes, and were hardly ever in the sun.   Yet they got melanoma and died.  On the other hand, I've spent a lifetime surfing So Cal, Australia, the tropics of Costa Rica, Brazil, always uncovered, w/o a wetsuit;  Norwegian extraction, fair (blue & blond);  never used sunscreen and glad I haven't:  PABA in the '80's was shown to actually cause cancer, and most current sunscreens have carcinogenic components, too.   

                          So… I have to ask why it took until  70 for melanoma to strike?   I know, I know… must be "genetics".  πŸ™‚ 

                          I have some ideas.   Instead, check with Dr. Mercola.  Highly rated.  No quack.   His article on recent studies the appearance of melanoma through LACK of vitamin D-fixing sunlight … interesting.  Turns conventional wisdom about the dangers of sun exposure, time of day (UVB vs UVA), almost exactly on its head>>> 

                          http://articles.mercola.com/sites/articles/archive/2011/11/20/deadly-melanoma-not-due-vitamin-d-deficiency.aspx?e_cid=20111120_SNL_Art_1

                          Every case is different.    There are few hard and fast rules, other than the physicians' "Do no harm" and less is more.  Judgement and patient involvement seem essential.   

                          Thanks again for your comments.

                          Bob B.

                          Janner
                          Participant

                            Clark's Level IV USED TO BE an indication to do a SNB prior to the new staging changes.  It used to differentiate between stage IA and stage IB.  Some sites might still use that as their criteria.

                            Dr. Mercola isn't a quack?  That's a loaded statement and I beg to differ.  He has many theories, but no clinical trials to prove his theories.  He's good at spinning his own stories, but I want to see CLINICAL EVIDENCE (blinded studies, peer reviews, etc) before I'll give his theories much credence.  He is a good salesman, though.

                            Melanoma occurs most often in men over 60.  While the young are getting diagnosed more and more, it is most often the elderly that are diagnosed.  Because of the technology gap in the older population, we don't always see that population represented here.  People who tend to have more constant exposure don't see melanoma as often as people who have intermittent burns and sporadic exposure.  My Dad is of English extraction, blonde and blue eyed, tanned and got melanoma at age 82.  My Mom got melanoma at age 83.  She's also of northern European extraction.  90% of melanomas are considered sporadic – that is – they have no genetic defect to cause them.  I'm the oddball.  I am adopted so my parent's both having melanoma means nothing to me.  I've been tested because of my 3 primaries and I do have one of the genetic defects researched (76% lifetime risk of melanoma).   I do have to wonder about environment given both of my parents with melanoma.  With my genetic tendency, I figure even one stupid sunburn might have tipped my odds.

                            To me, it seems like you are seeing overtreatment conspiracy theories where they really don't exist.  Certainly, some practicians do more than needed, and some patients REQUIRE more than is necessary.  General standards do exist and the majority of people basically follow those general standards in treatment.  Always some outliers.  Australia (highest melanoma incidence in the world) doesn't do things exactly like the US.  There have never been any INTERNATIONAL STANDARDS applied to any stage of the disease.

                            Bob B.
                            Participant

                              As we all know, Clark levels USED TO BE important but were supposed to have been discarded from 2009.   Supposed to have been…   I am also aware that an SLNB  "might  be offered" (?), as it was rather carefully expressed by guidelines-  to patients with Clark IV level.    The point I believe we both made, each in our own way, is that outdated Clark levels CONTINUE TO BE USED by many oncologists.    And not only Clark …

                              Strategies of many kinds are employed, some contradictory, some more controversial than those I mentioned.   This is why my post asked, "Overtreatment?" (question mark).    Certainly not to promote 'conspiracy theories'.   Nor to  ingenuously adhere to diagnostics and treatment guidelines that may be as often observed in the breach.  

                               Instead, I hope to learn from others.   To open a discussion, if it is of interest, that might help us all evaluate treatment options that differ so remarkably.    And to share my own very limited experience interviewing dermotologists in the US, Brazil, Mexico and Australia.   A buffet of approaches, and often not in accord with AJCC TNM STAGING.

                               I happen to think a melanoma patient's interests are not well served by assuming…..

                               1.  Treatment strategies uniformly follow the latest research studies, cancer association guidelines, etc..     Myth.   

                               2.  Doctor knows best.  Sometimes he does, but caveat emptor, get a second opinion can often be as valuable.

                               3.  The patient's involvement is secondary, if not irrelevant.   A patient's best ally is, as this site proposes:   Be informed.  

                              I agree that Dr. Mercola's wall-to-wall sales pitch IS disconcerting.   How much should we credit his numerous articles, his recent book reporting an inverse ratio between the incidence of melanoma and sun exposure?   Or a direct ratio between incidence of melanoma and use of sunscreen?   There is plenty of information out there that is independent of Dr. Mercola.   Suggest you take a look at the studies.  Here is one (of many)>>

                              http://www.ncbi.nlm.nih.gov/pubmed/18406602?ordinalpos=8&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

                              As to the statement that "melanomas occur most often in men over 60".    I'm sure that is true, but inferences are hard to draw from this.   I believe melanomas tend to grow much more slowly in older men.  Correct? 

                              Thanks for your opinions.

                              Bob B.

                              Bob B.
                              Participant

                                As we all know, Clark levels USED TO BE important but were supposed to have been discarded from 2009.   Supposed to have been…   I am also aware that an SLNB  "might  be offered" (?), as it was rather carefully expressed by guidelines-  to patients with Clark IV level.    The point I believe we both made, each in our own way, is that outdated Clark levels CONTINUE TO BE USED by many oncologists.    And not only Clark …

                                Strategies of many kinds are employed, some contradictory, some more controversial than those I mentioned.   This is why my post asked, "Overtreatment?" (question mark).    Certainly not to promote 'conspiracy theories'.   Nor to  ingenuously adhere to diagnostics and treatment guidelines that may be as often observed in the breach.  

                                 Instead, I hope to learn from others.   To open a discussion, if it is of interest, that might help us all evaluate treatment options that differ so remarkably.    And to share my own very limited experience interviewing dermotologists in the US, Brazil, Mexico and Australia.   A buffet of approaches, and often not in accord with AJCC TNM STAGING.

                                 I happen to think a melanoma patient's interests are not well served by assuming…..

                                 1.  Treatment strategies uniformly follow the latest research studies, cancer association guidelines, etc..     Myth.   

                                 2.  Doctor knows best.  Sometimes he does, but caveat emptor, get a second opinion can often be as valuable.

                                 3.  The patient's involvement is secondary, if not irrelevant.   A patient's best ally is, as this site proposes:   Be informed.  

                                I agree that Dr. Mercola's wall-to-wall sales pitch IS disconcerting.   How much should we credit his numerous articles, his recent book reporting an inverse ratio between the incidence of melanoma and sun exposure?   Or a direct ratio between incidence of melanoma and use of sunscreen?   There is plenty of information out there that is independent of Dr. Mercola.   Suggest you take a look at the studies.  Here is one (of many)>>

                                http://www.ncbi.nlm.nih.gov/pubmed/18406602?ordinalpos=8&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

                                As to the statement that "melanomas occur most often in men over 60".    I'm sure that is true, but inferences are hard to draw from this.   I believe melanomas tend to grow much more slowly in older men.  Correct? 

                                Thanks for your opinions.

                                Bob B.

                                Bob B.
                                Participant

                                  As we all know, Clark levels USED TO BE important but were supposed to have been discarded from 2009.   Supposed to have been…   I am also aware that an SLNB  "might  be offered" (?), as it was rather carefully expressed by guidelines-  to patients with Clark IV level.    The point I believe we both made, each in our own way, is that outdated Clark levels CONTINUE TO BE USED by many oncologists.    And not only Clark …

                                  Strategies of many kinds are employed, some contradictory, some more controversial than those I mentioned.   This is why my post asked, "Overtreatment?" (question mark).    Certainly not to promote 'conspiracy theories'.   Nor to  ingenuously adhere to diagnostics and treatment guidelines that may be as often observed in the breach.  

                                   Instead, I hope to learn from others.   To open a discussion, if it is of interest, that might help us all evaluate treatment options that differ so remarkably.    And to share my own very limited experience interviewing dermotologists in the US, Brazil, Mexico and Australia.   A buffet of approaches, and often not in accord with AJCC TNM STAGING.

                                   I happen to think a melanoma patient's interests are not well served by assuming…..

                                   1.  Treatment strategies uniformly follow the latest research studies, cancer association guidelines, etc..     Myth.   

                                   2.  Doctor knows best.  Sometimes he does, but caveat emptor, get a second opinion can often be as valuable.

                                   3.  The patient's involvement is secondary, if not irrelevant.   A patient's best ally is, as this site proposes:   Be informed.  

                                  I agree that Dr. Mercola's wall-to-wall sales pitch IS disconcerting.   How much should we credit his numerous articles, his recent book reporting an inverse ratio between the incidence of melanoma and sun exposure?   Or a direct ratio between incidence of melanoma and use of sunscreen?   There is plenty of information out there that is independent of Dr. Mercola.   Suggest you take a look at the studies.  Here is one (of many)>>

                                  http://www.ncbi.nlm.nih.gov/pubmed/18406602?ordinalpos=8&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

                                  As to the statement that "melanomas occur most often in men over 60".    I'm sure that is true, but inferences are hard to draw from this.   I believe melanomas tend to grow much more slowly in older men.  Correct? 

                                  Thanks for your opinions.

                                  Bob B.

                                  JerryfromFauq
                                  Participant

                                    Janner, you've done a great job of responding to Bob b.  I have toagree with exctly wht you said about Dr. Mercola.  It seems that there might be some variance in the term "self-diagnosis"  as Bob uses the term.  Of course we all do self checks, and come up with what we suspect.  i know of none of us that are truely  capable of a complete self diagnosis.  The only diagnosis I trust is from at least one pathology report. (No problem with having more than one report done.)  As you are aware I have found the path of all my additional tumors (excpt for the lungs) and been correct in what i thought was melanoma and what I wanted checked out  otherwise just to be absolutely sure.  What I didn't think was melanoma wasn't, but I prefer a pathology rport to make tha actual diagnosis.  As you know, according to the general points on who needs to watch for melanoma, I just love the fact that I have no worry about getting mel based on the "profile".  Wish the pathologists reports agreed!

                                    Bob B.
                                    Participant

                                      JerryfromFauq,  

                                      We all know continual observation is paramount.   Excuse the apparent exaggeration:   "Self-checks" are exactly (and only) what I meant by "self-diagnosis".   What may not be so obvious is that dermatologists and oncologists sometimes diagnose and prescribe invasive treatments (SLNB's, and beyond..) for what appear to be early Stage melanomas. Even without pathology reports following excision.   Worse, some prescribe them before excision.  (?)  In an environment of conflicting diagnostics, staging and therapeutic approaches, a true partnership between patient and doctor makes sense.    At the same time, it is just as dangerous to indiscriminately embrace medical procedures simply because the attending physician recommends them-  as it is to reject them out of hand.   I am sure we all agree.

                                      Bob B.
                                      Participant

                                        JerryfromFauq,  

                                        We all know continual observation is paramount.   Excuse the apparent exaggeration:   "Self-checks" are exactly (and only) what I meant by "self-diagnosis".   What may not be so obvious is that dermatologists and oncologists sometimes diagnose and prescribe invasive treatments (SLNB's, and beyond..) for what appear to be early Stage melanomas. Even without pathology reports following excision.   Worse, some prescribe them before excision.  (?)  In an environment of conflicting diagnostics, staging and therapeutic approaches, a true partnership between patient and doctor makes sense.    At the same time, it is just as dangerous to indiscriminately embrace medical procedures simply because the attending physician recommends them-  as it is to reject them out of hand.   I am sure we all agree.

                                        Bob B.
                                        Participant

                                          JerryfromFauq,  

                                          We all know continual observation is paramount.   Excuse the apparent exaggeration:   "Self-checks" are exactly (and only) what I meant by "self-diagnosis".   What may not be so obvious is that dermatologists and oncologists sometimes diagnose and prescribe invasive treatments (SLNB's, and beyond..) for what appear to be early Stage melanomas. Even without pathology reports following excision.   Worse, some prescribe them before excision.  (?)  In an environment of conflicting diagnostics, staging and therapeutic approaches, a true partnership between patient and doctor makes sense.    At the same time, it is just as dangerous to indiscriminately embrace medical procedures simply because the attending physician recommends them-  as it is to reject them out of hand.   I am sure we all agree.

                                          JerryfromFauq
                                          Participant

                                            Janner, you've done a great job of responding to Bob b.  I have toagree with exctly wht you said about Dr. Mercola.  It seems that there might be some variance in the term "self-diagnosis"  as Bob uses the term.  Of course we all do self checks, and come up with what we suspect.  i know of none of us that are truely  capable of a complete self diagnosis.  The only diagnosis I trust is from at least one pathology report. (No problem with having more than one report done.)  As you are aware I have found the path of all my additional tumors (excpt for the lungs) and been correct in what i thought was melanoma and what I wanted checked out  otherwise just to be absolutely sure.  What I didn't think was melanoma wasn't, but I prefer a pathology rport to make tha actual diagnosis.  As you know, according to the general points on who needs to watch for melanoma, I just love the fact that I have no worry about getting mel based on the "profile".  Wish the pathologists reports agreed!

                                            JerryfromFauq
                                            Participant

                                              Janner, you've done a great job of responding to Bob b.  I have toagree with exctly wht you said about Dr. Mercola.  It seems that there might be some variance in the term "self-diagnosis"  as Bob uses the term.  Of course we all do self checks, and come up with what we suspect.  i know of none of us that are truely  capable of a complete self diagnosis.  The only diagnosis I trust is from at least one pathology report. (No problem with having more than one report done.)  As you are aware I have found the path of all my additional tumors (excpt for the lungs) and been correct in what i thought was melanoma and what I wanted checked out  otherwise just to be absolutely sure.  What I didn't think was melanoma wasn't, but I prefer a pathology rport to make tha actual diagnosis.  As you know, according to the general points on who needs to watch for melanoma, I just love the fact that I have no worry about getting mel based on the "profile".  Wish the pathologists reports agreed!

                                              Bob B.
                                              Participant

                                                No "INTERNATIONAL STANDARDS"?  You're right, formally at least…

                                                However, there is much more agreement than disagreement between NATIONAL cancer association and their guidelines for staging, diagnosis and treatment.    It's one world.  

                                                Oncologists attend international symposiums and receive timely information from wherever leading edge research is being done.   It's all good.    And from what I can see, individual medical practice in different countries varies much more for far more complicated reasons than for differing NATIONAL standards.

                                                Bob B.
                                                Participant

                                                  No "INTERNATIONAL STANDARDS"?  You're right, formally at least…

                                                  However, there is much more agreement than disagreement between NATIONAL cancer association and their guidelines for staging, diagnosis and treatment.    It's one world.  

                                                  Oncologists attend international symposiums and receive timely information from wherever leading edge research is being done.   It's all good.    And from what I can see, individual medical practice in different countries varies much more for far more complicated reasons than for differing NATIONAL standards.

                                                  Bob B.
                                                  Participant

                                                    No "INTERNATIONAL STANDARDS"?  You're right, formally at least…

                                                    However, there is much more agreement than disagreement between NATIONAL cancer association and their guidelines for staging, diagnosis and treatment.    It's one world.  

                                                    Oncologists attend international symposiums and receive timely information from wherever leading edge research is being done.   It's all good.    And from what I can see, individual medical practice in different countries varies much more for far more complicated reasons than for differing NATIONAL standards.

                                                    Janner
                                                    Participant

                                                      Clark's Level IV USED TO BE an indication to do a SNB prior to the new staging changes.  It used to differentiate between stage IA and stage IB.  Some sites might still use that as their criteria.

                                                      Dr. Mercola isn't a quack?  That's a loaded statement and I beg to differ.  He has many theories, but no clinical trials to prove his theories.  He's good at spinning his own stories, but I want to see CLINICAL EVIDENCE (blinded studies, peer reviews, etc) before I'll give his theories much credence.  He is a good salesman, though.

                                                      Melanoma occurs most often in men over 60.  While the young are getting diagnosed more and more, it is most often the elderly that are diagnosed.  Because of the technology gap in the older population, we don't always see that population represented here.  People who tend to have more constant exposure don't see melanoma as often as people who have intermittent burns and sporadic exposure.  My Dad is of English extraction, blonde and blue eyed, tanned and got melanoma at age 82.  My Mom got melanoma at age 83.  She's also of northern European extraction.  90% of melanomas are considered sporadic – that is – they have no genetic defect to cause them.  I'm the oddball.  I am adopted so my parent's both having melanoma means nothing to me.  I've been tested because of my 3 primaries and I do have one of the genetic defects researched (76% lifetime risk of melanoma).   I do have to wonder about environment given both of my parents with melanoma.  With my genetic tendency, I figure even one stupid sunburn might have tipped my odds.

                                                      To me, it seems like you are seeing overtreatment conspiracy theories where they really don't exist.  Certainly, some practicians do more than needed, and some patients REQUIRE more than is necessary.  General standards do exist and the majority of people basically follow those general standards in treatment.  Always some outliers.  Australia (highest melanoma incidence in the world) doesn't do things exactly like the US.  There have never been any INTERNATIONAL STANDARDS applied to any stage of the disease.

                                                      Janner
                                                      Participant

                                                        Clark's Level IV USED TO BE an indication to do a SNB prior to the new staging changes.  It used to differentiate between stage IA and stage IB.  Some sites might still use that as their criteria.

                                                        Dr. Mercola isn't a quack?  That's a loaded statement and I beg to differ.  He has many theories, but no clinical trials to prove his theories.  He's good at spinning his own stories, but I want to see CLINICAL EVIDENCE (blinded studies, peer reviews, etc) before I'll give his theories much credence.  He is a good salesman, though.

                                                        Melanoma occurs most often in men over 60.  While the young are getting diagnosed more and more, it is most often the elderly that are diagnosed.  Because of the technology gap in the older population, we don't always see that population represented here.  People who tend to have more constant exposure don't see melanoma as often as people who have intermittent burns and sporadic exposure.  My Dad is of English extraction, blonde and blue eyed, tanned and got melanoma at age 82.  My Mom got melanoma at age 83.  She's also of northern European extraction.  90% of melanomas are considered sporadic – that is – they have no genetic defect to cause them.  I'm the oddball.  I am adopted so my parent's both having melanoma means nothing to me.  I've been tested because of my 3 primaries and I do have one of the genetic defects researched (76% lifetime risk of melanoma).   I do have to wonder about environment given both of my parents with melanoma.  With my genetic tendency, I figure even one stupid sunburn might have tipped my odds.

                                                        To me, it seems like you are seeing overtreatment conspiracy theories where they really don't exist.  Certainly, some practicians do more than needed, and some patients REQUIRE more than is necessary.  General standards do exist and the majority of people basically follow those general standards in treatment.  Always some outliers.  Australia (highest melanoma incidence in the world) doesn't do things exactly like the US.  There have never been any INTERNATIONAL STANDARDS applied to any stage of the disease.

                                                        Minnesota
                                                        Participant

                                                          I have some personal history with vitamin D..

                                                          My level was and is fine – I was interested in vitamin D deficiency several years ago because I developed pregnancy-related autoimmune disease, so I jumped at any explanation or possible cure. I got melanoma.

                                                          My mother was tested last year as part of a yearly physical and found out she had dangerously low levels, possibly for years. She's never been ill in her life. She's 70.

                                                          My brother had severe depression and was hospitalized 6 years ago. He was put on powerful antidepressants that did not help. A doctor later discovered he had vitamin D deficiency. Now he is fine and doesn't need antidepressants.

                                                          Nobody in my family has ever had melanoma.

                                                          I think if you read through the posts here, you wouldn't find anyone who has been overtreated. Just the word bothers me in relation to melanoma because I want to say, "what treatment?" That isn't fair to the stage 4 people receiving treatment though.

                                                          I'm sorry you have melanoma. I'm sorry for all of us who have it. I really wish I would have been any age older than I am before I got it. Maybe all your surfing did protect you for another 20-30 years. You'll never know. Maybe I should have been out in the sun more. I'll never know.

                                                          Since you've seen so many doctors, it's no wonder you've gotten so many opinions, but its your life and you need to do what you have to do. I really don't know why I've spent the time replying (no offense) because I sense that you might be some kind of apologist for Dr. Mercola. I would hope that nobody would come to a forum like this for that, but one never knows. I myself feel like a jerk for even posting here because I am just a stage 1B, but I am still trying to deal with my diagnosis.

                                                          Bob B.
                                                          Participant

                                                            Vitamin D.   Sounds like it did your family a lot of good.  Glad to hear it.

                                                            But I'm no apologist for Dr. Mercola, or for medical science, or for anyone or anything.    I try not to hold it against him that he is "selling his fish".   Afterall, if we look around we know an commercial axe to grind does not mean the salesman is wrong.   Nor does it mean he is right.

                                                            "What treatment?"   Check my post and you'll see examples of what I mean.  

                                                            I'm not sorry I have melanoma.  It just is.   Deal with it and move on.   Since there are issues of over- (as well as under-) treatment, I thought someone on the forum would have tips to avoid either one.    I guess not.  

                                                            Everyone seems to have his own axe to grind:  I "wouldn't find anyone who has been overtreated" on the forum.   Of course I wouldn't!   Had they been over treated, I doubt they would know.   And if they knew, I suppose they would prefer to forgive and forget.   Mostly forget…

                                                            As this is only my second primary, I am hoping to avoid the need to forgive or forget.  Make sense?

                                                            Minnesota
                                                            Participant

                                                              I'm not meaning to be rude to you, I guess I just don't understand what you want to talk about. I did see what was offered to you as far as overtreatment and it sounded too extreme, because they just don't do anything in Minnesota until a person is at stage 4. We're offered excision surgery, SLNB if you fit the need (over 1mm, mitotic rate, ulceration), and that's it until or if it explodes.

                                                              I did see some posts here where people had interferon at an earlier stage years ago. People post their treatment history in their profile, so maybe you can decide if someone has been overtreated. I've read nearly every profile here, for most I wish there was more treatment.

                                                              I have a friend with several primaries all under 1mm, now removed, and she is seen every 3 mos. to check for more. That's it. That seems to be the standard for under 1mm. I would trade a few primaries under 1mm for one that is over.

                                                              Bob B.
                                                              Participant

                                                                You can't be rude to me.  Trust me.  πŸ™‚  

                                                                Don't "understand what (I) want to talk about"?    Again, my goals from previous posts >>>>

                                                                "I hope to learn from others.   To open a discussion, if it is of interest, that might help us all evaluate treatment options that differ so remarkably.    And to share my own very limited experience….. I thought someone on the forum would have tips to avoid either (over or undertreatment).   I guess not. " 

                                                                Clearer?  Unless of course these are inappropriate reasons to be posting.    Some on the forum give me the feeling they are.    Inappropriate, that is, and hard to figure.   Do melanoma and crankiness go together?  πŸ™‚   If you would, straighten me out where I've gone wrong.  Thanks.

                                                                I think you are lucky living in Minnesota.   Everything seems crystal clear.    The confusion must be in So Cal, West Oz,  Mexico and Brazil. 

                                                                 

                                                                 

                                                                 

                                                                 

                                                                 

                                                                Minnesota
                                                                Participant

                                                                  I would have guessed you came to teach others.

                                                                  I'm reading this: 

                                                                  (1) The doctors you've seen wished to over-treat early stage melanoma, which must mean that a lot of people in this forum had the same type of doctors and took them up on their offer, and that was wrong. 

                                                                  (2) You believe that melanoma isn't caused by UV because you spent a good share of your life in sun and on the water.

                                                                  What I don't understand is:

                                                                  (1) Are you suggesting people take your advice and watch a possible second primary develop over months/years?

                                                                  (2) Spend more time in the sun and on the water unprotected because the worst that could happen is that they get a tumor under 1mm? and then maybe get another years later?

                                                                  If you want my opinion on where this went wrong, it's the delivery. 

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                  Minnesota
                                                                  Participant

                                                                    I would have guessed you came to teach others.

                                                                    I'm reading this: 

                                                                    (1) The doctors you've seen wished to over-treat early stage melanoma, which must mean that a lot of people in this forum had the same type of doctors and took them up on their offer, and that was wrong. 

                                                                    (2) You believe that melanoma isn't caused by UV because you spent a good share of your life in sun and on the water.

                                                                    What I don't understand is:

                                                                    (1) Are you suggesting people take your advice and watch a possible second primary develop over months/years?

                                                                    (2) Spend more time in the sun and on the water unprotected because the worst that could happen is that they get a tumor under 1mm? and then maybe get another years later?

                                                                    If you want my opinion on where this went wrong, it's the delivery. 

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                    Bob B.
                                                                    Participant

                                                                       

                                                                      Sigh….

                                                                      If you want my opinion on where this went wrong, it's where insufficient humility and handwringing meet inordinate defensiveness.

                                                                      Bob B.
                                                                      Participant

                                                                         

                                                                        Sigh….

                                                                        If you want my opinion on where this went wrong, it's where insufficient humility and handwringing meet inordinate defensiveness.

                                                                        Minnesota
                                                                        Participant

                                                                          Then lets start over. You're very clever in your writing, and it's obvious that you have put a lot of time and energy into researching information for yourself, it just happens to be the opposite of what most here believe. That doesn't make you wrong, but there might be a better way to discuss it. 

                                                                          I truly meant it when I said I was sorry you have melanoma. It's a nasty, sneaky, dirty, rotten cancer. Not many people know anything about it – people ask me if I'm going to have chemo. I say, no, chemo doesn't work. They say oh that's great, you don't have to lose your hair. If it truly was a matter of cutting it out and then skipping away, that would be great, but people sometimes go from stage 1 to stage 4 in a few months, so it's not great.

                                                                          Everyone with melanoma who have children are also feeling bad that they've put their child at risk just by having it. They're worried about their siblings. They hear that the younger you are, the harder it is to survive. 

                                                                          I am one of the fortunate ones and you are in a better position than I am, but while here, on this forum, it comes down to there but for the grace of God, go I. 

                                                                          Minnesota
                                                                          Participant

                                                                            Then lets start over. You're very clever in your writing, and it's obvious that you have put a lot of time and energy into researching information for yourself, it just happens to be the opposite of what most here believe. That doesn't make you wrong, but there might be a better way to discuss it. 

                                                                            I truly meant it when I said I was sorry you have melanoma. It's a nasty, sneaky, dirty, rotten cancer. Not many people know anything about it – people ask me if I'm going to have chemo. I say, no, chemo doesn't work. They say oh that's great, you don't have to lose your hair. If it truly was a matter of cutting it out and then skipping away, that would be great, but people sometimes go from stage 1 to stage 4 in a few months, so it's not great.

                                                                            Everyone with melanoma who have children are also feeling bad that they've put their child at risk just by having it. They're worried about their siblings. They hear that the younger you are, the harder it is to survive. 

                                                                            I am one of the fortunate ones and you are in a better position than I am, but while here, on this forum, it comes down to there but for the grace of God, go I. 

                                                                            Minnesota
                                                                            Participant

                                                                              Then lets start over. You're very clever in your writing, and it's obvious that you have put a lot of time and energy into researching information for yourself, it just happens to be the opposite of what most here believe. That doesn't make you wrong, but there might be a better way to discuss it. 

                                                                              I truly meant it when I said I was sorry you have melanoma. It's a nasty, sneaky, dirty, rotten cancer. Not many people know anything about it – people ask me if I'm going to have chemo. I say, no, chemo doesn't work. They say oh that's great, you don't have to lose your hair. If it truly was a matter of cutting it out and then skipping away, that would be great, but people sometimes go from stage 1 to stage 4 in a few months, so it's not great.

                                                                              Everyone with melanoma who have children are also feeling bad that they've put their child at risk just by having it. They're worried about their siblings. They hear that the younger you are, the harder it is to survive. 

                                                                              I am one of the fortunate ones and you are in a better position than I am, but while here, on this forum, it comes down to there but for the grace of God, go I. 

                                                                              Bob B.
                                                                              Participant

                                                                                 

                                                                                Sigh….

                                                                                If you want my opinion on where this went wrong, it's where insufficient humility and handwringing meet inordinate defensiveness.

                                                                                Minnesota
                                                                                Participant

                                                                                  I would have guessed you came to teach others.

                                                                                  I'm reading this: 

                                                                                  (1) The doctors you've seen wished to over-treat early stage melanoma, which must mean that a lot of people in this forum had the same type of doctors and took them up on their offer, and that was wrong. 

                                                                                  (2) You believe that melanoma isn't caused by UV because you spent a good share of your life in sun and on the water.

                                                                                  What I don't understand is:

                                                                                  (1) Are you suggesting people take your advice and watch a possible second primary develop over months/years?

                                                                                  (2) Spend more time in the sun and on the water unprotected because the worst that could happen is that they get a tumor under 1mm? and then maybe get another years later?

                                                                                  If you want my opinion on where this went wrong, it's the delivery. 

                                                                                   

                                                                                   

                                                                                   

                                                                                   

                                                                                   

                                                                                  Bob B.
                                                                                  Participant

                                                                                    You can't be rude to me.  Trust me.  πŸ™‚  

                                                                                    Don't "understand what (I) want to talk about"?    Again, my goals from previous posts >>>>

                                                                                    "I hope to learn from others.   To open a discussion, if it is of interest, that might help us all evaluate treatment options that differ so remarkably.    And to share my own very limited experience….. I thought someone on the forum would have tips to avoid either (over or undertreatment).   I guess not. " 

                                                                                    Clearer?  Unless of course these are inappropriate reasons to be posting.    Some on the forum give me the feeling they are.    Inappropriate, that is, and hard to figure.   Do melanoma and crankiness go together?  πŸ™‚   If you would, straighten me out where I've gone wrong.  Thanks.

                                                                                    I think you are lucky living in Minnesota.   Everything seems crystal clear.    The confusion must be in So Cal, West Oz,  Mexico and Brazil. 

                                                                                     

                                                                                     

                                                                                     

                                                                                     

                                                                                     

                                                                                    Bob B.
                                                                                    Participant

                                                                                      You can't be rude to me.  Trust me.  πŸ™‚  

                                                                                      Don't "understand what (I) want to talk about"?    Again, my goals from previous posts >>>>

                                                                                      "I hope to learn from others.   To open a discussion, if it is of interest, that might help us all evaluate treatment options that differ so remarkably.    And to share my own very limited experience….. I thought someone on the forum would have tips to avoid either (over or undertreatment).   I guess not. " 

                                                                                      Clearer?  Unless of course these are inappropriate reasons to be posting.    Some on the forum give me the feeling they are.    Inappropriate, that is, and hard to figure.   Do melanoma and crankiness go together?  πŸ™‚   If you would, straighten me out where I've gone wrong.  Thanks.

                                                                                      I think you are lucky living in Minnesota.   Everything seems crystal clear.    The confusion must be in So Cal, West Oz,  Mexico and Brazil. 

                                                                                       

                                                                                       

                                                                                       

                                                                                       

                                                                                       

                                                                                      Cindy33
                                                                                      Participant

                                                                                        Hello All,

                                                                                        I was diagnosed Stage 1b in 2010, recurrence of Stage 1ish 2012. I am still in process. Feel like a pin cushion, shave biopsies, punch, excisions-MIS, severe cytologic atypia X3. My moles do not look suspisious to anyone. Except for the first one which was weeping, the rest have been light brown, symmetrical and small. I recently insisted on biopsiy because they were new moles. I am over 50  and should not have new moles. 

                                                                                        I am worried about undertreatment. Is there nothing better than biopsy everything? Which I am willing to do to keep this from progressing. Janner – ideas? I am new to this board and have no idea what I am doing. 

                                                                                        To everyone, than you for posting. I appreciate all the input and find the conversation informative and hopeful. I am not alone. My docs are freaked out. No one wants that.l

                                                                                         

                                                                                        Zeus

                                                                                        Cindy33
                                                                                        Participant

                                                                                          Hello All,

                                                                                          I was diagnosed Stage 1b in 2010, recurrence of Stage 1ish 2012. I am still in process. Feel like a pin cushion, shave biopsies, punch, excisions-MIS, severe cytologic atypia X3. My moles do not look suspisious to anyone. Except for the first one which was weeping, the rest have been light brown, symmetrical and small. I recently insisted on biopsiy because they were new moles. I am over 50  and should not have new moles. 

                                                                                          I am worried about undertreatment. Is there nothing better than biopsy everything? Which I am willing to do to keep this from progressing. Janner – ideas? I am new to this board and have no idea what I am doing. 

                                                                                          To everyone, than you for posting. I appreciate all the input and find the conversation informative and hopeful. I am not alone. My docs are freaked out. No one wants that.l

                                                                                           

                                                                                          Zeus

                                                                                          Cindy33
                                                                                          Participant

                                                                                            Hello All,

                                                                                            I was diagnosed Stage 1b in 2010, recurrence of Stage 1ish 2012. I am still in process. Feel like a pin cushion, shave biopsies, punch, excisions-MIS, severe cytologic atypia X3. My moles do not look suspisious to anyone. Except for the first one which was weeping, the rest have been light brown, symmetrical and small. I recently insisted on biopsiy because they were new moles. I am over 50  and should not have new moles. 

                                                                                            I am worried about undertreatment. Is there nothing better than biopsy everything? Which I am willing to do to keep this from progressing. Janner – ideas? I am new to this board and have no idea what I am doing. 

                                                                                            To everyone, than you for posting. I appreciate all the input and find the conversation informative and hopeful. I am not alone. My docs are freaked out. No one wants that.l

                                                                                             

                                                                                            Zeus

                                                                                            Minnesota
                                                                                            Participant

                                                                                              I'm not meaning to be rude to you, I guess I just don't understand what you want to talk about. I did see what was offered to you as far as overtreatment and it sounded too extreme, because they just don't do anything in Minnesota until a person is at stage 4. We're offered excision surgery, SLNB if you fit the need (over 1mm, mitotic rate, ulceration), and that's it until or if it explodes.

                                                                                              I did see some posts here where people had interferon at an earlier stage years ago. People post their treatment history in their profile, so maybe you can decide if someone has been overtreated. I've read nearly every profile here, for most I wish there was more treatment.

                                                                                              I have a friend with several primaries all under 1mm, now removed, and she is seen every 3 mos. to check for more. That's it. That seems to be the standard for under 1mm. I would trade a few primaries under 1mm for one that is over.

                                                                                              Minnesota
                                                                                              Participant

                                                                                                I'm not meaning to be rude to you, I guess I just don't understand what you want to talk about. I did see what was offered to you as far as overtreatment and it sounded too extreme, because they just don't do anything in Minnesota until a person is at stage 4. We're offered excision surgery, SLNB if you fit the need (over 1mm, mitotic rate, ulceration), and that's it until or if it explodes.

                                                                                                I did see some posts here where people had interferon at an earlier stage years ago. People post their treatment history in their profile, so maybe you can decide if someone has been overtreated. I've read nearly every profile here, for most I wish there was more treatment.

                                                                                                I have a friend with several primaries all under 1mm, now removed, and she is seen every 3 mos. to check for more. That's it. That seems to be the standard for under 1mm. I would trade a few primaries under 1mm for one that is over.

                                                                                                Bob B.
                                                                                                Participant

                                                                                                  Vitamin D.   Sounds like it did your family a lot of good.  Glad to hear it.

                                                                                                  But I'm no apologist for Dr. Mercola, or for medical science, or for anyone or anything.    I try not to hold it against him that he is "selling his fish".   Afterall, if we look around we know an commercial axe to grind does not mean the salesman is wrong.   Nor does it mean he is right.

                                                                                                  "What treatment?"   Check my post and you'll see examples of what I mean.  

                                                                                                  I'm not sorry I have melanoma.  It just is.   Deal with it and move on.   Since there are issues of over- (as well as under-) treatment, I thought someone on the forum would have tips to avoid either one.    I guess not.  

                                                                                                  Everyone seems to have his own axe to grind:  I "wouldn't find anyone who has been overtreated" on the forum.   Of course I wouldn't!   Had they been over treated, I doubt they would know.   And if they knew, I suppose they would prefer to forgive and forget.   Mostly forget…

                                                                                                  As this is only my second primary, I am hoping to avoid the need to forgive or forget.  Make sense?

                                                                                                  Bob B.
                                                                                                  Participant

                                                                                                    Vitamin D.   Sounds like it did your family a lot of good.  Glad to hear it.

                                                                                                    But I'm no apologist for Dr. Mercola, or for medical science, or for anyone or anything.    I try not to hold it against him that he is "selling his fish".   Afterall, if we look around we know an commercial axe to grind does not mean the salesman is wrong.   Nor does it mean he is right.

                                                                                                    "What treatment?"   Check my post and you'll see examples of what I mean.  

                                                                                                    I'm not sorry I have melanoma.  It just is.   Deal with it and move on.   Since there are issues of over- (as well as under-) treatment, I thought someone on the forum would have tips to avoid either one.    I guess not.  

                                                                                                    Everyone seems to have his own axe to grind:  I "wouldn't find anyone who has been overtreated" on the forum.   Of course I wouldn't!   Had they been over treated, I doubt they would know.   And if they knew, I suppose they would prefer to forgive and forget.   Mostly forget…

                                                                                                    As this is only my second primary, I am hoping to avoid the need to forgive or forget.  Make sense?

                                                                                                    Minnesota
                                                                                                    Participant

                                                                                                      I have some personal history with vitamin D..

                                                                                                      My level was and is fine – I was interested in vitamin D deficiency several years ago because I developed pregnancy-related autoimmune disease, so I jumped at any explanation or possible cure. I got melanoma.

                                                                                                      My mother was tested last year as part of a yearly physical and found out she had dangerously low levels, possibly for years. She's never been ill in her life. She's 70.

                                                                                                      My brother had severe depression and was hospitalized 6 years ago. He was put on powerful antidepressants that did not help. A doctor later discovered he had vitamin D deficiency. Now he is fine and doesn't need antidepressants.

                                                                                                      Nobody in my family has ever had melanoma.

                                                                                                      I think if you read through the posts here, you wouldn't find anyone who has been overtreated. Just the word bothers me in relation to melanoma because I want to say, "what treatment?" That isn't fair to the stage 4 people receiving treatment though.

                                                                                                      I'm sorry you have melanoma. I'm sorry for all of us who have it. I really wish I would have been any age older than I am before I got it. Maybe all your surfing did protect you for another 20-30 years. You'll never know. Maybe I should have been out in the sun more. I'll never know.

                                                                                                      Since you've seen so many doctors, it's no wonder you've gotten so many opinions, but its your life and you need to do what you have to do. I really don't know why I've spent the time replying (no offense) because I sense that you might be some kind of apologist for Dr. Mercola. I would hope that nobody would come to a forum like this for that, but one never knows. I myself feel like a jerk for even posting here because I am just a stage 1B, but I am still trying to deal with my diagnosis.

                                                                                                      Minnesota
                                                                                                      Participant

                                                                                                        I have some personal history with vitamin D..

                                                                                                        My level was and is fine – I was interested in vitamin D deficiency several years ago because I developed pregnancy-related autoimmune disease, so I jumped at any explanation or possible cure. I got melanoma.

                                                                                                        My mother was tested last year as part of a yearly physical and found out she had dangerously low levels, possibly for years. She's never been ill in her life. She's 70.

                                                                                                        My brother had severe depression and was hospitalized 6 years ago. He was put on powerful antidepressants that did not help. A doctor later discovered he had vitamin D deficiency. Now he is fine and doesn't need antidepressants.

                                                                                                        Nobody in my family has ever had melanoma.

                                                                                                        I think if you read through the posts here, you wouldn't find anyone who has been overtreated. Just the word bothers me in relation to melanoma because I want to say, "what treatment?" That isn't fair to the stage 4 people receiving treatment though.

                                                                                                        I'm sorry you have melanoma. I'm sorry for all of us who have it. I really wish I would have been any age older than I am before I got it. Maybe all your surfing did protect you for another 20-30 years. You'll never know. Maybe I should have been out in the sun more. I'll never know.

                                                                                                        Since you've seen so many doctors, it's no wonder you've gotten so many opinions, but its your life and you need to do what you have to do. I really don't know why I've spent the time replying (no offense) because I sense that you might be some kind of apologist for Dr. Mercola. I would hope that nobody would come to a forum like this for that, but one never knows. I myself feel like a jerk for even posting here because I am just a stage 1B, but I am still trying to deal with my diagnosis.

                                                                                                        Bob B.
                                                                                                        Participant

                                                                                                          Minnesota,

                                                                                                          Janner's and your comments food for thought.   Much apprecited.

                                                                                                          With a 1.45mm Breslow and mitotic rate 5, an SNLB seems more than reasonable.   I agree, no "overtreatment" there.  

                                                                                                          In my case (.63/.8 Breslow, mitotic rate 0, the still overused Clark IV ) I've received opinions on treatment ranging from minimal (excision) to no excision and scans and an immediate (sight unseen) SLNB "to avoid distorting the lymphatic drain field".  And a ("likely") lymphadenectomy, to follow.    See what I mean?

                                                                                                          Re:  Mitotic Rate

                                                                                                          Although research as an indicator positions it near Breslow thickness, there's a sense that histology remains subject to unstandard approaches.   And the validity of resulting MR values?  Just saying….   No url, quoting recent abstract>>>

                                                                                                          Melanoma Staging: Implications of Histologic Sectioning Procedures

                                                                                                          Balch et al1 have stated that proliferation of primary melanoma as defined by the mitotic rate is a powerful and independent predictor of survival. As a result, primary tumor mitotic rate is now a required element for the seventh edition of the American Joint Committee on Cancer melanoma staging system. We suggest that careful serial histologic sectioning of the melanoma is necessary to establish the mitotic rate with confidence. The absence of mitosis may be established with certainty only after total serial sectioning of the paraffin block, which can be laborious to perform. Alternatively, it is necessary to establish guidelines for the number of sections that need to be examined to determine the mitotic rate. Interpretation of the mitotic rate is difficult when the procedure for sectioning the paraffin block is not clearly specified.

                                                                                                          Re:  Sunlight & Melanoma

                                                                                                          We all know of people who always went well covered, lived in colder, high latitudes, and were hardly ever in the sun.   Yet they got melanoma and died.  On the other hand, I've spent a lifetime surfing So Cal, Australia, the tropics of Costa Rica, Brazil, always uncovered, w/o a wetsuit;  Norwegian extraction, fair (blue & blond);  never used sunscreen and glad I haven't:  PABA in the '80's was shown to actually cause cancer, and most current sunscreens have carcinogenic components, too.   

                                                                                                          So… I have to ask why it took until  70 for melanoma to strike?   I know, I know… must be "genetics".  πŸ™‚ 

                                                                                                          I have some ideas.   Instead, check with Dr. Mercola.  Highly rated.  No quack.   His article on recent studies the appearance of melanoma through LACK of vitamin D-fixing sunlight … interesting.  Turns conventional wisdom about the dangers of sun exposure, time of day (UVB vs UVA), almost exactly on its head>>> 

                                                                                                          http://articles.mercola.com/sites/articles/archive/2011/11/20/deadly-melanoma-not-due-vitamin-d-deficiency.aspx?e_cid=20111120_SNL_Art_1

                                                                                                          Every case is different.    There are few hard and fast rules, other than the physicians' "Do no harm" and less is more.  Judgement and patient involvement seem essential.   

                                                                                                          Thanks again for your comments.

                                                                                                          Bob B.

                                                                                                          Bob B.
                                                                                                          Participant

                                                                                                            Minnesota,

                                                                                                            Janner's and your comments food for thought.   Much apprecited.

                                                                                                            With a 1.45mm Breslow and mitotic rate 5, an SNLB seems more than reasonable.   I agree, no "overtreatment" there.  

                                                                                                            In my case (.63/.8 Breslow, mitotic rate 0, the still overused Clark IV ) I've received opinions on treatment ranging from minimal (excision) to no excision and scans and an immediate (sight unseen) SLNB "to avoid distorting the lymphatic drain field".  And a ("likely") lymphadenectomy, to follow.    See what I mean?

                                                                                                            Re:  Mitotic Rate

                                                                                                            Although research as an indicator positions it near Breslow thickness, there's a sense that histology remains subject to unstandard approaches.   And the validity of resulting MR values?  Just saying….   No url, quoting recent abstract>>>

                                                                                                            Melanoma Staging: Implications of Histologic Sectioning Procedures

                                                                                                            Balch et al1 have stated that proliferation of primary melanoma as defined by the mitotic rate is a powerful and independent predictor of survival. As a result, primary tumor mitotic rate is now a required element for the seventh edition of the American Joint Committee on Cancer melanoma staging system. We suggest that careful serial histologic sectioning of the melanoma is necessary to establish the mitotic rate with confidence. The absence of mitosis may be established with certainty only after total serial sectioning of the paraffin block, which can be laborious to perform. Alternatively, it is necessary to establish guidelines for the number of sections that need to be examined to determine the mitotic rate. Interpretation of the mitotic rate is difficult when the procedure for sectioning the paraffin block is not clearly specified.

                                                                                                            Re:  Sunlight & Melanoma

                                                                                                            We all know of people who always went well covered, lived in colder, high latitudes, and were hardly ever in the sun.   Yet they got melanoma and died.  On the other hand, I've spent a lifetime surfing So Cal, Australia, the tropics of Costa Rica, Brazil, always uncovered, w/o a wetsuit;  Norwegian extraction, fair (blue & blond);  never used sunscreen and glad I haven't:  PABA in the '80's was shown to actually cause cancer, and most current sunscreens have carcinogenic components, too.   

                                                                                                            So… I have to ask why it took until  70 for melanoma to strike?   I know, I know… must be "genetics".  πŸ™‚ 

                                                                                                            I have some ideas.   Instead, check with Dr. Mercola.  Highly rated.  No quack.   His article on recent studies the appearance of melanoma through LACK of vitamin D-fixing sunlight … interesting.  Turns conventional wisdom about the dangers of sun exposure, time of day (UVB vs UVA), almost exactly on its head>>> 

                                                                                                            http://articles.mercola.com/sites/articles/archive/2011/11/20/deadly-melanoma-not-due-vitamin-d-deficiency.aspx?e_cid=20111120_SNL_Art_1

                                                                                                            Every case is different.    There are few hard and fast rules, other than the physicians' "Do no harm" and less is more.  Judgement and patient involvement seem essential.   

                                                                                                            Thanks again for your comments.

                                                                                                            Bob B.

                                                                                                          Minnesota
                                                                                                          Participant

                                                                                                            I am a 1B with a mitotic rate of 5 and negative SLB.

                                                                                                            I found mine, I didn't diagnose it because I don't have a lab and I'm not into self-mutilation (lol). My derm said he would have given me the option of SLB if my mitotic rate had been 0, even though I was at 1.45mm, this is because my initial excision was done with margins that are now considered okay. 

                                                                                                            There was concern about my mitotic rate by all the doctors I saw, and there still is. My derm said that he thinks I will have a recurrance in the same limb. I've had no blood tests, no scans. I go in every 3 mos. to get visually checked. That's it. I don't think its overtreatment. With that said, I do feel like a walking time bomb. I'm glad you don't, it's not a good feeling. 

                                                                                                            As for the exaggeration of UV exposure, one only needs to look at the statistics of the types of people who get melanoma and their location's UV. I was ALWAYS careful in the sun to avoid burning and I have never been tan in my life; however, I live in Minnesota and for the last 20 years I've taken vacations in the winter and was exposed to intense sunlight, even though I was protected. I am fair-skinned and have some red in my hair, I developed many moles since my 20's. 

                                                                                                            I just returned from the Carribean. I wore a hat outside, wore UPF clothing/swimwear, put sunscreen on my exposed skin, and had a great vacation. It wasn't that hard. Did it decrease my risk for future melanoma recurrance? I doubt it, but my WLE was well protected, which is just plain common sense.

                                                                                                            Minnesota
                                                                                                            Participant

                                                                                                              I am a 1B with a mitotic rate of 5 and negative SLB.

                                                                                                              I found mine, I didn't diagnose it because I don't have a lab and I'm not into self-mutilation (lol). My derm said he would have given me the option of SLB if my mitotic rate had been 0, even though I was at 1.45mm, this is because my initial excision was done with margins that are now considered okay. 

                                                                                                              There was concern about my mitotic rate by all the doctors I saw, and there still is. My derm said that he thinks I will have a recurrance in the same limb. I've had no blood tests, no scans. I go in every 3 mos. to get visually checked. That's it. I don't think its overtreatment. With that said, I do feel like a walking time bomb. I'm glad you don't, it's not a good feeling. 

                                                                                                              As for the exaggeration of UV exposure, one only needs to look at the statistics of the types of people who get melanoma and their location's UV. I was ALWAYS careful in the sun to avoid burning and I have never been tan in my life; however, I live in Minnesota and for the last 20 years I've taken vacations in the winter and was exposed to intense sunlight, even though I was protected. I am fair-skinned and have some red in my hair, I developed many moles since my 20's. 

                                                                                                              I just returned from the Carribean. I wore a hat outside, wore UPF clothing/swimwear, put sunscreen on my exposed skin, and had a great vacation. It wasn't that hard. Did it decrease my risk for future melanoma recurrance? I doubt it, but my WLE was well protected, which is just plain common sense.

                                                                                                              Jamietk
                                                                                                              Participant

                                                                                                                If you feel a physician overuses options, choose another physician that offers options more in line with what you think is appropriate. Pretty simple.

                                                                                                                  Bob B.
                                                                                                                  Participant

                                                                                                                    I agree.    This is exactly what I have been doing.   I've raised the issue of potential overtreatment because there are many conflicting approaches.   And some of us simply leave it to the physician's judgement, and overlook the need to shop around.

                                                                                                                    As you say, we have a choice.   And the need to be informed, ourselves.

                                                                                                                    washoegal
                                                                                                                    Participant

                                                                                                                      You have brought up an interesting topic but maybe not in the most diplimatic way…..

                                                                                                                      I am stage 3a.  All along I was given choices in my treatement, though I must admit in the beginning I felt like I had to make decisions immediately when I maybe should have waited and researched more. I don't think the doctor ever push for an immediate decision, I felt it was necessary.  In hind sight I would have made exactly the same decisions so I suppose the doc gave me good info. 

                                                                                                                      However it is difficult to say, when I have had enough scans and can spread them out or do I continue to trust the doctor.  I am still in the mode of having too many moles removed, I too discovered my own melanoma.  But all these things are lifes little hurdles.  For I am one of the lucky ones …

                                                                                                                      Mary

                                                                                                                      Stage 3

                                                                                                                      washoegal
                                                                                                                      Participant

                                                                                                                        You have brought up an interesting topic but maybe not in the most diplimatic way…..

                                                                                                                        I am stage 3a.  All along I was given choices in my treatement, though I must admit in the beginning I felt like I had to make decisions immediately when I maybe should have waited and researched more. I don't think the doctor ever push for an immediate decision, I felt it was necessary.  In hind sight I would have made exactly the same decisions so I suppose the doc gave me good info. 

                                                                                                                        However it is difficult to say, when I have had enough scans and can spread them out or do I continue to trust the doctor.  I am still in the mode of having too many moles removed, I too discovered my own melanoma.  But all these things are lifes little hurdles.  For I am one of the lucky ones …

                                                                                                                        Mary

                                                                                                                        Stage 3

                                                                                                                        washoegal
                                                                                                                        Participant

                                                                                                                          You have brought up an interesting topic but maybe not in the most diplimatic way…..

                                                                                                                          I am stage 3a.  All along I was given choices in my treatement, though I must admit in the beginning I felt like I had to make decisions immediately when I maybe should have waited and researched more. I don't think the doctor ever push for an immediate decision, I felt it was necessary.  In hind sight I would have made exactly the same decisions so I suppose the doc gave me good info. 

                                                                                                                          However it is difficult to say, when I have had enough scans and can spread them out or do I continue to trust the doctor.  I am still in the mode of having too many moles removed, I too discovered my own melanoma.  But all these things are lifes little hurdles.  For I am one of the lucky ones …

                                                                                                                          Mary

                                                                                                                          Stage 3

                                                                                                                          Bob B.
                                                                                                                          Participant

                                                                                                                            Mary,

                                                                                                                            Although it is hard to see- and seeing, hard to understand-  I will take your word for it.    It's true, I value candor well above diplomacy.    Not everyone does.

                                                                                                                            Clearly, you are one of the lucky ones.    I am still trying to figure it out.

                                                                                                                            Very best wishes,

                                                                                                                            Bob

                                                                                                                            Bob B.
                                                                                                                            Participant

                                                                                                                              Mary,

                                                                                                                              Although it is hard to see- and seeing, hard to understand-  I will take your word for it.    It's true, I value candor well above diplomacy.    Not everyone does.

                                                                                                                              Clearly, you are one of the lucky ones.    I am still trying to figure it out.

                                                                                                                              Very best wishes,

                                                                                                                              Bob

                                                                                                                              Bob B.
                                                                                                                              Participant

                                                                                                                                Mary,

                                                                                                                                Although it is hard to see- and seeing, hard to understand-  I will take your word for it.    It's true, I value candor well above diplomacy.    Not everyone does.

                                                                                                                                Clearly, you are one of the lucky ones.    I am still trying to figure it out.

                                                                                                                                Very best wishes,

                                                                                                                                Bob

                                                                                                                                Cindy33
                                                                                                                                Participant

                                                                                                                                  I also value candor over diplomacy!

                                                                                                                                  Cindy33
                                                                                                                                  Participant

                                                                                                                                    I also value candor over diplomacy!

                                                                                                                                    Cindy33
                                                                                                                                    Participant

                                                                                                                                      I also value candor over diplomacy!

                                                                                                                                      Cindy33
                                                                                                                                      Participant

                                                                                                                                        I also value candor over diplomacy!

                                                                                                                                        Cindy33
                                                                                                                                        Participant

                                                                                                                                          I also value candor over diplomacy!

                                                                                                                                          Cindy33
                                                                                                                                          Participant

                                                                                                                                            I also value candor over diplomacy!

                                                                                                                                            Bob B.
                                                                                                                                            Participant

                                                                                                                                              I agree.    This is exactly what I have been doing.   I've raised the issue of potential overtreatment because there are many conflicting approaches.   And some of us simply leave it to the physician's judgement, and overlook the need to shop around.

                                                                                                                                              As you say, we have a choice.   And the need to be informed, ourselves.

                                                                                                                                              Bob B.
                                                                                                                                              Participant

                                                                                                                                                I agree.    This is exactly what I have been doing.   I've raised the issue of potential overtreatment because there are many conflicting approaches.   And some of us simply leave it to the physician's judgement, and overlook the need to shop around.

                                                                                                                                                As you say, we have a choice.   And the need to be informed, ourselves.

                                                                                                                                              Jamietk
                                                                                                                                              Participant

                                                                                                                                                If you feel a physician overuses options, choose another physician that offers options more in line with what you think is appropriate. Pretty simple.

                                                                                                                                                Jamietk
                                                                                                                                                Participant

                                                                                                                                                  If you feel a physician overuses options, choose another physician that offers options more in line with what you think is appropriate. Pretty simple.

                                                                                                                                                  jmmm
                                                                                                                                                  Participant
                                                                                                                                                    Wow..you sound like you know it all. As a caregiver for my husband, I think all they can do for stage 1 melanoma is important. In 1998, he was diagnosed with stage 1 with surgical excision. Back then, they didn’t do much else. In 2011, he was stage 4 and has had mets all over his body…lungs, bones, brain, GI tract, etc, 4 major surgeries, 3 different treatments, I don’t even remember how many nights in the hospital, with many in the ICU. So, I’m glad you think it’s not necessary to treat stage 1 with all you vast knowledge, but until you’ve watched your spouse so close to death, there’s no way you’re going to convince me that they’re over treating stage 1. Oh, yeah, my husband is 38 and we have 3 young boys that I will be raising by myself. So, continue to stay outside without sunscreen and monitor yourself and tell doctors they don’t know what they’re doing. I will continue to slather my children in sunscreen, take them to the dermatologist, watch my husband die from this horrible disease, and pray that my children never get it. You can bet if they do, I will do anything to get them treated asaggressively as possible so they don’t end up like my husband.
                                                                                                                                                      Bob B.
                                                                                                                                                      Participant

                                                                                                                                                        Anonymouse,  Have I stepped on a hornet's nest?    There must be a PC way to post.   And my way.   Obviously I don't know my place, is that close enough?    We are all on the same team (I thought).     Early choices are as important as later ones (I thought).   I am promoting nothing and have little knowledge.    So what is left?   Just this:   Confusion at the options I've been offered.    Conflicting arguments, procedures, etc.    By sharing the challenges I've found to making the right choices, ones we've all faced one way or another, I thought I could learn a lot.    In return, the place to start on the journey we share- transparency.  

                                                                                                                                                        At least I thought, so.   Instead, an unknown protocol, a dance for which I don't know the steps….  

                                                                                                                                                        Bob B.
                                                                                                                                                        Participant

                                                                                                                                                          Anonymouse,  Have I stepped on a hornet's nest?    There must be a PC way to post.   And my way.   Obviously I don't know my place, is that close enough?    We are all on the same team (I thought).     Early choices are as important as later ones (I thought).   I am promoting nothing and have little knowledge.    So what is left?   Just this:   Confusion at the options I've been offered.    Conflicting arguments, procedures, etc.    By sharing the challenges I've found to making the right choices, ones we've all faced one way or another, I thought I could learn a lot.    In return, the place to start on the journey we share- transparency.  

                                                                                                                                                          At least I thought, so.   Instead, an unknown protocol, a dance for which I don't know the steps….  

                                                                                                                                                          Bob B.
                                                                                                                                                          Participant

                                                                                                                                                            Anonymouse,  Have I stepped on a hornet's nest?    There must be a PC way to post.   And my way.   Obviously I don't know my place, is that close enough?    We are all on the same team (I thought).     Early choices are as important as later ones (I thought).   I am promoting nothing and have little knowledge.    So what is left?   Just this:   Confusion at the options I've been offered.    Conflicting arguments, procedures, etc.    By sharing the challenges I've found to making the right choices, ones we've all faced one way or another, I thought I could learn a lot.    In return, the place to start on the journey we share- transparency.  

                                                                                                                                                            At least I thought, so.   Instead, an unknown protocol, a dance for which I don't know the steps….  

                                                                                                                                                          jmmm
                                                                                                                                                          Participant
                                                                                                                                                            Wow..you sound like you know it all. As a caregiver for my husband, I think all they can do for stage 1 melanoma is important. In 1998, he was diagnosed with stage 1 with surgical excision. Back then, they didn’t do much else. In 2011, he was stage 4 and has had mets all over his body…lungs, bones, brain, GI tract, etc, 4 major surgeries, 3 different treatments, I don’t even remember how many nights in the hospital, with many in the ICU. So, I’m glad you think it’s not necessary to treat stage 1 with all you vast knowledge, but until you’ve watched your spouse so close to death, there’s no way you’re going to convince me that they’re over treating stage 1. Oh, yeah, my husband is 38 and we have 3 young boys that I will be raising by myself. So, continue to stay outside without sunscreen and monitor yourself and tell doctors they don’t know what they’re doing. I will continue to slather my children in sunscreen, take them to the dermatologist, watch my husband die from this horrible disease, and pray that my children never get it. You can bet if they do, I will do anything to get them treated asaggressively as possible so they don’t end up like my husband.
                                                                                                                                                            jmmm
                                                                                                                                                            Participant
                                                                                                                                                              Wow..you sound like you know it all. As a caregiver for my husband, I think all they can do for stage 1 melanoma is important. In 1998, he was diagnosed with stage 1 with surgical excision. Back then, they didn’t do much else. In 2011, he was stage 4 and has had mets all over his body…lungs, bones, brain, GI tract, etc, 4 major surgeries, 3 different treatments, I don’t even remember how many nights in the hospital, with many in the ICU. So, I’m glad you think it’s not necessary to treat stage 1 with all you vast knowledge, but until you’ve watched your spouse so close to death, there’s no way you’re going to convince me that they’re over treating stage 1. Oh, yeah, my husband is 38 and we have 3 young boys that I will be raising by myself. So, continue to stay outside without sunscreen and monitor yourself and tell doctors they don’t know what they’re doing. I will continue to slather my children in sunscreen, take them to the dermatologist, watch my husband die from this horrible disease, and pray that my children never get it. You can bet if they do, I will do anything to get them treated asaggressively as possible so they don’t end up like my husband.
                                                                                                                                                              JerryfromFauq
                                                                                                                                                              Participant

                                                                                                                                                                Interesting topic, about as cut and dry as melanoma itself  is!

                                                                                                                                                                Over treatment and under treatment is such an individual thing, Just like Melanoma is such an individual thing, being actually a hundred or more cancers, not just one. 

                                                                                                                                                                   Is an SNB check over treatment or under treatment?  If they find mel it is proper treatment, If they find none then it might be over treatment.  Treatments are based more on statistical probabilities than actual individual events.  The general surgeon I was finally referred to, after 3 1/2 years of my complaining to my GP, saw no need for and never mentioned lymph nodes.  After the biopsy of one tumor in May, he delayed for 2 months even taking wider margins on that tumor or removing the other two melanomas he had already seen in April.  In Early October, when I found a fast growing lump in the lymph node area of my groin, the general surgeon wanted to wait six months to even give me an appointment.  (I didn't even know the word 'Oncologist' at that time.  In late December (after another general surgeon did provide follow-up), I was told that I needed a melanoma specialist.  The Specialist broke his Center's normal protocols and did a major operation within three weeks of my first contact with him.  Even at that, he found within the following month that I was suddenly at Stage IV.  From being told nothing wrong, to Stage one /two to innumerable fast growing metastasized stage IV tumors in 8 months (Was that slow? Since I am an old man!).  A Pet/CT Scan report in late January said that my lungs were clear.  In February an X-ray said things were very suspicious, so a separate CT was done which confirmed the X-ray indications. 

                                                                                                                                                                    The first 4 years of my complaints was definitely under treatment.  Was the extremely aggressive treatment by the Melanoma Specialist over treatment?  Without it, I would not be here today. 

                                                                                                                                                                     In my research I learned that nothing came close to IL-2 for either the possibility of approaching a cure, nor even of providing any positive response.  The local general Oncologist wanted me to try various Chemo treatments (less than a 1% success rate).   I talked to many people who told me that their spouses/significant others had tried various chemo treatments, saving the rougher IL-2 as a last resort.  The problem for most of these spouse was that their mate had died before they could recover from the chemo treatments enough to even attempt to take IL-2.

                                                                                                                                                                    My personal belief is that if knowledge was known as to why treatments of items l like IL-2, Targeted treatments, Ipi work on the cases they do and their cost was something that could be paid without destroying the medical re-imbursement system we have, then they or modified versions of these treatments could/should be provided to at least Stage II and Stage III patients and to so called "NED stage IV patients".

                                                                                                                                                                    My wife has a friend that had an extremely deep melanoma on her leg.  They had to bare the bone in removing it.  She refused a SNB.  She has refused to see a dermatologist or oncologist in the 14 years since her diagnosis, she has not allowed a single CT scan (though scans were recommended by her surgeon).  Would any follow-up have been over treatment in her case?  Hindsight says apparently it would have been.  She is comfortable with her decision and I with mine.

                                                                                                                                                                    My hindsight says that I would not be here if I had followed her example.

                                                                                                                                                                    No, I don't think one can automatically, in advance, say that most treatments are definitely either way for an individual case.

                                                                                                                                                                    The cases that I find most questionable are:

                                                                                                                                                                1. total removal of all lymph nodes in a basin if one node is found to contain melanoma cells (additional studies are underway on this subject).

                                                                                                                                                                2. Attempts to totally remove most melanoma's by normal radiation alone.

                                                                                                                                                                3. Refusal  of many Oncologists to consider IL-2 as other than a last resort after one has failed numerous types of chemo treatments for the broad spectrum of melanoma cases.  (Does need to be carried out by a highly experienced Oncologist and staff, most Melanoma Oncology specialists do not have the needed experience to administration IL-2)

                                                                                                                                                                 4.  Automatic administration of Interferon.  In the cases that interferon works, it can be highly effect.  My problem is that no one knows why it works on the small percentage that it does.  Some studies have shown that it actually can exacerbate melanoma growth in about as many cases as it "cures".  More knowledge is needed to make decisions of this treatment for me, but I have no argument with those that feel they cannot do nothing and want to try  it.

                                                                                                                                                                My biggest problem with the whole field is that I have found that most general doctors, nurses, surgeons, and even general Oncologists know almost nothing about where the melanoma world is.

                                                                                                                                                                THERE IS NO  ACCEPTED protocol at the stage IV level.  I have read many places that the SOP for Stage IV is to be a guinea pig and get in a clinical trial.  The Human Gnome project has finally started making early clinical trials look more beneficial to the patient than ever before..

                                                                                                                                                                  Bob B.
                                                                                                                                                                  Participant

                                                                                                                                                                    Terrific, thanks very much.   Insights like these are exactly what I had hoped to find on the MRF site.    I agree 100%:  under or overtreatment is as much an individual thing as anything else.  Maybe more ((recent post).   And your motto is apt:   I call it the tyranny of the bell curve.   Nassim Taleb in "The Black Swan" calls it the great intellectual fraud, or "GIF".   The standard deviation curve is a very blunt instrument to reflect the truth of our personal situations.  You're right, we aren't statistics.  Each of us is different and each case is different.     

                                                                                                                                                                    Due to my minimalist preferences (or prejudices…) your 4 years of undertreatment came as a shocker.   My own lack of imagination, it IS unimaginable.   Again, there are no rules and every case is a case.  

                                                                                                                                                                    Points 2-4 in your post are way beyond me.   Maybe eventually I'll be able to understand them.   But I found point 1 very interesting.   I'd taken it on faith that a positive sentinel node would, presumably, mandate a lymphadenectomy.  Maybe not….   Meanwhile, recent studies show SLNB's are overprescribed:   Non-therapeutic, useful only for staging and prognosis, correlation of SNLB's and surviability absurdly low;  false positives;  lymphatic basin 'jumping', etc. 

                                                                                                                                                                    The fast changing field of oncology is truly fascinating.   Had I become a doctor, what an interesting specialty.  Thanks again!

                                                                                                                                                                    Bob B.
                                                                                                                                                                    Participant

                                                                                                                                                                      Terrific, thanks very much.   Insights like these are exactly what I had hoped to find on the MRF site.    I agree 100%:  under or overtreatment is as much an individual thing as anything else.  Maybe more ((recent post).   And your motto is apt:   I call it the tyranny of the bell curve.   Nassim Taleb in "The Black Swan" calls it the great intellectual fraud, or "GIF".   The standard deviation curve is a very blunt instrument to reflect the truth of our personal situations.  You're right, we aren't statistics.  Each of us is different and each case is different.     

                                                                                                                                                                      Due to my minimalist preferences (or prejudices…) your 4 years of undertreatment came as a shocker.   My own lack of imagination, it IS unimaginable.   Again, there are no rules and every case is a case.  

                                                                                                                                                                      Points 2-4 in your post are way beyond me.   Maybe eventually I'll be able to understand them.   But I found point 1 very interesting.   I'd taken it on faith that a positive sentinel node would, presumably, mandate a lymphadenectomy.  Maybe not….   Meanwhile, recent studies show SLNB's are overprescribed:   Non-therapeutic, useful only for staging and prognosis, correlation of SNLB's and surviability absurdly low;  false positives;  lymphatic basin 'jumping', etc. 

                                                                                                                                                                      The fast changing field of oncology is truly fascinating.   Had I become a doctor, what an interesting specialty.  Thanks again!

                                                                                                                                                                      JerryfromFauq
                                                                                                                                                                      Participant

                                                                                                                                                                        I have read that SNB's or Non-therapeutic, useful only for staging and prognosis.  I have problems with that as an absolute statement.  I tend to believe that some few are likely way beyond Stage I or 2 when their primary is beyond imm, and especially if beyond 3 mm thick.  For all cases where a primary is near 1 mm or more i would like for conduction of the dye test to determine which lymph node is the sentinal node in the lyph system for the primary's location.  Even if no biopsy is done that nodal basin should be watched, (Ct, MRi, ultrasoud /)  The patient shoud be taught how to self examine the nodal basin.  If this had been done in my case there is a chance (perhaps slight after the 4 year delay) that I would not have had most nodes in two major lymph node chains overrun and the melanoma cells have already spread beyond the basins before before I found the golfball sized node on my own.  Just imgine "WHAT

                                                                                                                                                                        IF"?    !. my general surgeon had known enough to check the Sentinel node in May after pathology said I had melanoma?

                                                                                                                                                                               What if he had even felt the nodal basin?

                                                                                                                                                                               What if he had scanned it?

                                                                                                                                                                        MAYBE I would have stopped at stage III!      My peronal suspicion is that if enough of a reason is found to suspect that the sentinal node has melanoma, that enough nodes should be removed that a few clear nodes should be found before node removal is stopped.  I do suspect that if some clear nodes are not removed, but watched closely that a progression of the cancer might be found before it makes the next jump (most likely to the lungs).  I have read several places that approximately 40% of Stage IV patients will have metastisis of melanoma to the brain. 

                                                                                                                                                                        I had spend an hour writting a reponse about radiation then accidentally wiped  it out.  Will try to write more on that line later.  but basically forget radiation as a treatment to eliminate melanoma from other than the brain.  Radiation therapy can reduce the tumor load and size to make surgery a feasible option.  Look at the damage radiation does to the body as it passes thru healthy tissue before and after the tumor.  Especially if it has to pass through the heart or the intestines.  (Compare the side effects of proton radiation {http://www.protons.com/} on prostrate cancer and side effects with the standard radiation treatments for prostrate cancer.  Most guys can still 'enjoy certain events in life after proton radiation.that conventional radiation removes most of the time.)  I have never read any reports of the results of proton radiation on melanoma.  I know the  insurance companies don't like proton radiaton because of the expense.  My largest lung tumors are over my heart. most members of my fathers side of the jamily have died from circultory problems, (heart attack, stokes, cingestive heart failure).  I would prefer that my heart tissue not be damaged by a radiation treatment that would likely be a pallative treatment, not curative.

                                                                                                                                                                        Good luck ad keep learning!

                                                                                                                                                                        Minnesota
                                                                                                                                                                        Participant

                                                                                                                                                                          I learn so much from reading everything you write – thank you.

                                                                                                                                                                          Bob B.
                                                                                                                                                                          Participant

                                                                                                                                                                            Thanks for the persistence.   Just that what I (think I) know is nothing compared with what you and the community know.   No false modesty, but I'm a dilettante.  You're the teacher.

                                                                                                                                                                            Bob B.
                                                                                                                                                                            Participant

                                                                                                                                                                              Thanks for the persistence.   Just that what I (think I) know is nothing compared with what you and the community know.   No false modesty, but I'm a dilettante.  You're the teacher.

                                                                                                                                                                              Bob B.
                                                                                                                                                                              Participant

                                                                                                                                                                                Thanks for the persistence.   Just that what I (think I) know is nothing compared with what you and the community know.   No false modesty, but I'm a dilettante.  You're the teacher.

                                                                                                                                                                                Minnesota
                                                                                                                                                                                Participant

                                                                                                                                                                                  I learn so much from reading everything you write – thank you.

                                                                                                                                                                                  Minnesota
                                                                                                                                                                                  Participant

                                                                                                                                                                                    I learn so much from reading everything you write – thank you.

                                                                                                                                                                                    Bob B.
                                                                                                                                                                                    Participant

                                                                                                                                                                                      Keep learning?  Easy, I have so much to learn.  Most of your post is way over my head.   I lack information, background.   I do agree with your point that the truth of absolute statements is always far from being absolute.   I took the statement that SLNB's are non therapeutic (staging and prognosis, only)- literally.   But if die marker locates the sentinal node, and the SLNB isolates and eliminates all affected nodes and confirmation of healthy ones, it does seem 'therapeutic' to me.  

                                                                                                                                                                                      I agree, teaching patients to self examine seems essential.   Lesions, nodes, everything.

                                                                                                                                                                                      On the other hand, I figure "what if's" are not worth dealing with.  Not just because "what's over is over".   But "what if's" would have been affected by extraneous details, events, information that very likely would have made them much less worthwhile than we can imagine.  Even (or especially) in hindsight.  

                                                                                                                                                                                      Very best of luck.   Back to learning, I hope…

                                                                                                                                                                                      Bob B.
                                                                                                                                                                                      Participant

                                                                                                                                                                                        Keep learning?  Easy, I have so much to learn.  Most of your post is way over my head.   I lack information, background.   I do agree with your point that the truth of absolute statements is always far from being absolute.   I took the statement that SLNB's are non therapeutic (staging and prognosis, only)- literally.   But if die marker locates the sentinal node, and the SLNB isolates and eliminates all affected nodes and confirmation of healthy ones, it does seem 'therapeutic' to me.  

                                                                                                                                                                                        I agree, teaching patients to self examine seems essential.   Lesions, nodes, everything.

                                                                                                                                                                                        On the other hand, I figure "what if's" are not worth dealing with.  Not just because "what's over is over".   But "what if's" would have been affected by extraneous details, events, information that very likely would have made them much less worthwhile than we can imagine.  Even (or especially) in hindsight.  

                                                                                                                                                                                        Very best of luck.   Back to learning, I hope…

                                                                                                                                                                                        Bob B.
                                                                                                                                                                                        Participant

                                                                                                                                                                                          Keep learning?  Easy, I have so much to learn.  Most of your post is way over my head.   I lack information, background.   I do agree with your point that the truth of absolute statements is always far from being absolute.   I took the statement that SLNB's are non therapeutic (staging and prognosis, only)- literally.   But if die marker locates the sentinal node, and the SLNB isolates and eliminates all affected nodes and confirmation of healthy ones, it does seem 'therapeutic' to me.  

                                                                                                                                                                                          I agree, teaching patients to self examine seems essential.   Lesions, nodes, everything.

                                                                                                                                                                                          On the other hand, I figure "what if's" are not worth dealing with.  Not just because "what's over is over".   But "what if's" would have been affected by extraneous details, events, information that very likely would have made them much less worthwhile than we can imagine.  Even (or especially) in hindsight.  

                                                                                                                                                                                          Very best of luck.   Back to learning, I hope…

                                                                                                                                                                                          JerryfromFauq
                                                                                                                                                                                          Participant

                                                                                                                                                                                            I have read that SNB's or Non-therapeutic, useful only for staging and prognosis.  I have problems with that as an absolute statement.  I tend to believe that some few are likely way beyond Stage I or 2 when their primary is beyond imm, and especially if beyond 3 mm thick.  For all cases where a primary is near 1 mm or more i would like for conduction of the dye test to determine which lymph node is the sentinal node in the lyph system for the primary's location.  Even if no biopsy is done that nodal basin should be watched, (Ct, MRi, ultrasoud /)  The patient shoud be taught how to self examine the nodal basin.  If this had been done in my case there is a chance (perhaps slight after the 4 year delay) that I would not have had most nodes in two major lymph node chains overrun and the melanoma cells have already spread beyond the basins before before I found the golfball sized node on my own.  Just imgine "WHAT

                                                                                                                                                                                            IF"?    !. my general surgeon had known enough to check the Sentinel node in May after pathology said I had melanoma?

                                                                                                                                                                                                   What if he had even felt the nodal basin?

                                                                                                                                                                                                   What if he had scanned it?

                                                                                                                                                                                            MAYBE I would have stopped at stage III!      My peronal suspicion is that if enough of a reason is found to suspect that the sentinal node has melanoma, that enough nodes should be removed that a few clear nodes should be found before node removal is stopped.  I do suspect that if some clear nodes are not removed, but watched closely that a progression of the cancer might be found before it makes the next jump (most likely to the lungs).  I have read several places that approximately 40% of Stage IV patients will have metastisis of melanoma to the brain. 

                                                                                                                                                                                            I had spend an hour writting a reponse about radiation then accidentally wiped  it out.  Will try to write more on that line later.  but basically forget radiation as a treatment to eliminate melanoma from other than the brain.  Radiation therapy can reduce the tumor load and size to make surgery a feasible option.  Look at the damage radiation does to the body as it passes thru healthy tissue before and after the tumor.  Especially if it has to pass through the heart or the intestines.  (Compare the side effects of proton radiation {http://www.protons.com/} on prostrate cancer and side effects with the standard radiation treatments for prostrate cancer.  Most guys can still 'enjoy certain events in life after proton radiation.that conventional radiation removes most of the time.)  I have never read any reports of the results of proton radiation on melanoma.  I know the  insurance companies don't like proton radiaton because of the expense.  My largest lung tumors are over my heart. most members of my fathers side of the jamily have died from circultory problems, (heart attack, stokes, cingestive heart failure).  I would prefer that my heart tissue not be damaged by a radiation treatment that would likely be a pallative treatment, not curative.

                                                                                                                                                                                            Good luck ad keep learning!

                                                                                                                                                                                            JerryfromFauq
                                                                                                                                                                                            Participant

                                                                                                                                                                                              I have read that SNB's or Non-therapeutic, useful only for staging and prognosis.  I have problems with that as an absolute statement.  I tend to believe that some few are likely way beyond Stage I or 2 when their primary is beyond imm, and especially if beyond 3 mm thick.  For all cases where a primary is near 1 mm or more i would like for conduction of the dye test to determine which lymph node is the sentinal node in the lyph system for the primary's location.  Even if no biopsy is done that nodal basin should be watched, (Ct, MRi, ultrasoud /)  The patient shoud be taught how to self examine the nodal basin.  If this had been done in my case there is a chance (perhaps slight after the 4 year delay) that I would not have had most nodes in two major lymph node chains overrun and the melanoma cells have already spread beyond the basins before before I found the golfball sized node on my own.  Just imgine "WHAT

                                                                                                                                                                                              IF"?    !. my general surgeon had known enough to check the Sentinel node in May after pathology said I had melanoma?

                                                                                                                                                                                                     What if he had even felt the nodal basin?

                                                                                                                                                                                                     What if he had scanned it?

                                                                                                                                                                                              MAYBE I would have stopped at stage III!      My peronal suspicion is that if enough of a reason is found to suspect that the sentinal node has melanoma, that enough nodes should be removed that a few clear nodes should be found before node removal is stopped.  I do suspect that if some clear nodes are not removed, but watched closely that a progression of the cancer might be found before it makes the next jump (most likely to the lungs).  I have read several places that approximately 40% of Stage IV patients will have metastisis of melanoma to the brain. 

                                                                                                                                                                                              I had spend an hour writting a reponse about radiation then accidentally wiped  it out.  Will try to write more on that line later.  but basically forget radiation as a treatment to eliminate melanoma from other than the brain.  Radiation therapy can reduce the tumor load and size to make surgery a feasible option.  Look at the damage radiation does to the body as it passes thru healthy tissue before and after the tumor.  Especially if it has to pass through the heart or the intestines.  (Compare the side effects of proton radiation {http://www.protons.com/} on prostrate cancer and side effects with the standard radiation treatments for prostrate cancer.  Most guys can still 'enjoy certain events in life after proton radiation.that conventional radiation removes most of the time.)  I have never read any reports of the results of proton radiation on melanoma.  I know the  insurance companies don't like proton radiaton because of the expense.  My largest lung tumors are over my heart. most members of my fathers side of the jamily have died from circultory problems, (heart attack, stokes, cingestive heart failure).  I would prefer that my heart tissue not be damaged by a radiation treatment that would likely be a pallative treatment, not curative.

                                                                                                                                                                                              Good luck ad keep learning!

                                                                                                                                                                                              Bob B.
                                                                                                                                                                                              Participant

                                                                                                                                                                                                Terrific, thanks very much.   Insights like these are exactly what I had hoped to find on the MRF site.    I agree 100%:  under or overtreatment is as much an individual thing as anything else.  Maybe more ((recent post).   And your motto is apt:   I call it the tyranny of the bell curve.   Nassim Taleb in "The Black Swan" calls it the great intellectual fraud, or "GIF".   The standard deviation curve is a very blunt instrument to reflect the truth of our personal situations.  You're right, we aren't statistics.  Each of us is different and each case is different.     

                                                                                                                                                                                                Due to my minimalist preferences (or prejudices…) your 4 years of undertreatment came as a shocker.   My own lack of imagination, it IS unimaginable.   Again, there are no rules and every case is a case.  

                                                                                                                                                                                                Points 2-4 in your post are way beyond me.   Maybe eventually I'll be able to understand them.   But I found point 1 very interesting.   I'd taken it on faith that a positive sentinel node would, presumably, mandate a lymphadenectomy.  Maybe not….   Meanwhile, recent studies show SLNB's are overprescribed:   Non-therapeutic, useful only for staging and prognosis, correlation of SNLB's and surviability absurdly low;  false positives;  lymphatic basin 'jumping', etc. 

                                                                                                                                                                                                The fast changing field of oncology is truly fascinating.   Had I become a doctor, what an interesting specialty.  Thanks again!

                                                                                                                                                                                              JerryfromFauq
                                                                                                                                                                                              Participant

                                                                                                                                                                                                Interesting topic, about as cut and dry as melanoma itself  is!

                                                                                                                                                                                                Over treatment and under treatment is such an individual thing, Just like Melanoma is such an individual thing, being actually a hundred or more cancers, not just one. 

                                                                                                                                                                                                   Is an SNB check over treatment or under treatment?  If they find mel it is proper treatment, If they find none then it might be over treatment.  Treatments are based more on statistical probabilities than actual individual events.  The general surgeon I was finally referred to, after 3 1/2 years of my complaining to my GP, saw no need for and never mentioned lymph nodes.  After the biopsy of one tumor in May, he delayed for 2 months even taking wider margins on that tumor or removing the other two melanomas he had already seen in April.  In Early October, when I found a fast growing lump in the lymph node area of my groin, the general surgeon wanted to wait six months to even give me an appointment.  (I didn't even know the word 'Oncologist' at that time.  In late December (after another general surgeon did provide follow-up), I was told that I needed a melanoma specialist.  The Specialist broke his Center's normal protocols and did a major operation within three weeks of my first contact with him.  Even at that, he found within the following month that I was suddenly at Stage IV.  From being told nothing wrong, to Stage one /two to innumerable fast growing metastasized stage IV tumors in 8 months (Was that slow? Since I am an old man!).  A Pet/CT Scan report in late January said that my lungs were clear.  In February an X-ray said things were very suspicious, so a separate CT was done which confirmed the X-ray indications. 

                                                                                                                                                                                                    The first 4 years of my complaints was definitely under treatment.  Was the extremely aggressive treatment by the Melanoma Specialist over treatment?  Without it, I would not be here today. 

                                                                                                                                                                                                     In my research I learned that nothing came close to IL-2 for either the possibility of approaching a cure, nor even of providing any positive response.  The local general Oncologist wanted me to try various Chemo treatments (less than a 1% success rate).   I talked to many people who told me that their spouses/significant others had tried various chemo treatments, saving the rougher IL-2 as a last resort.  The problem for most of these spouse was that their mate had died before they could recover from the chemo treatments enough to even attempt to take IL-2.

                                                                                                                                                                                                    My personal belief is that if knowledge was known as to why treatments of items l like IL-2, Targeted treatments, Ipi work on the cases they do and their cost was something that could be paid without destroying the medical re-imbursement system we have, then they or modified versions of these treatments could/should be provided to at least Stage II and Stage III patients and to so called "NED stage IV patients".

                                                                                                                                                                                                    My wife has a friend that had an extremely deep melanoma on her leg.  They had to bare the bone in removing it.  She refused a SNB.  She has refused to see a dermatologist or oncologist in the 14 years since her diagnosis, she has not allowed a single CT scan (though scans were recommended by her surgeon).  Would any follow-up have been over treatment in her case?  Hindsight says apparently it would have been.  She is comfortable with her decision and I with mine.

                                                                                                                                                                                                    My hindsight says that I would not be here if I had followed her example.

                                                                                                                                                                                                    No, I don't think one can automatically, in advance, say that most treatments are definitely either way for an individual case.

                                                                                                                                                                                                    The cases that I find most questionable are:

                                                                                                                                                                                                1. total removal of all lymph nodes in a basin if one node is found to contain melanoma cells (additional studies are underway on this subject).

                                                                                                                                                                                                2. Attempts to totally remove most melanoma's by normal radiation alone.

                                                                                                                                                                                                3. Refusal  of many Oncologists to consider IL-2 as other than a last resort after one has failed numerous types of chemo treatments for the broad spectrum of melanoma cases.  (Does need to be carried out by a highly experienced Oncologist and staff, most Melanoma Oncology specialists do not have the needed experience to administration IL-2)

                                                                                                                                                                                                 4.  Automatic administration of Interferon.  In the cases that interferon works, it can be highly effect.  My problem is that no one knows why it works on the small percentage that it does.  Some studies have shown that it actually can exacerbate melanoma growth in about as many cases as it "cures".  More knowledge is needed to make decisions of this treatment for me, but I have no argument with those that feel they cannot do nothing and want to try  it.

                                                                                                                                                                                                My biggest problem with the whole field is that I have found that most general doctors, nurses, surgeons, and even general Oncologists know almost nothing about where the melanoma world is.

                                                                                                                                                                                                THERE IS NO  ACCEPTED protocol at the stage IV level.  I have read many places that the SOP for Stage IV is to be a guinea pig and get in a clinical trial.  The Human Gnome project has finally started making early clinical trials look more beneficial to the patient than ever before..

                                                                                                                                                                                                JerryfromFauq
                                                                                                                                                                                                Participant

                                                                                                                                                                                                  Interesting topic, about as cut and dry as melanoma itself  is!

                                                                                                                                                                                                  Over treatment and under treatment is such an individual thing, Just like Melanoma is such an individual thing, being actually a hundred or more cancers, not just one. 

                                                                                                                                                                                                     Is an SNB check over treatment or under treatment?  If they find mel it is proper treatment, If they find none then it might be over treatment.  Treatments are based more on statistical probabilities than actual individual events.  The general surgeon I was finally referred to, after 3 1/2 years of my complaining to my GP, saw no need for and never mentioned lymph nodes.  After the biopsy of one tumor in May, he delayed for 2 months even taking wider margins on that tumor or removing the other two melanomas he had already seen in April.  In Early October, when I found a fast growing lump in the lymph node area of my groin, the general surgeon wanted to wait six months to even give me an appointment.  (I didn't even know the word 'Oncologist' at that time.  In late December (after another general surgeon did provide follow-up), I was told that I needed a melanoma specialist.  The Specialist broke his Center's normal protocols and did a major operation within three weeks of my first contact with him.  Even at that, he found within the following month that I was suddenly at Stage IV.  From being told nothing wrong, to Stage one /two to innumerable fast growing metastasized stage IV tumors in 8 months (Was that slow? Since I am an old man!).  A Pet/CT Scan report in late January said that my lungs were clear.  In February an X-ray said things were very suspicious, so a separate CT was done which confirmed the X-ray indications. 

                                                                                                                                                                                                      The first 4 years of my complaints was definitely under treatment.  Was the extremely aggressive treatment by the Melanoma Specialist over treatment?  Without it, I would not be here today. 

                                                                                                                                                                                                       In my research I learned that nothing came close to IL-2 for either the possibility of approaching a cure, nor even of providing any positive response.  The local general Oncologist wanted me to try various Chemo treatments (less than a 1% success rate).   I talked to many people who told me that their spouses/significant others had tried various chemo treatments, saving the rougher IL-2 as a last resort.  The problem for most of these spouse was that their mate had died before they could recover from the chemo treatments enough to even attempt to take IL-2.

                                                                                                                                                                                                      My personal belief is that if knowledge was known as to why treatments of items l like IL-2, Targeted treatments, Ipi work on the cases they do and their cost was something that could be paid without destroying the medical re-imbursement system we have, then they or modified versions of these treatments could/should be provided to at least Stage II and Stage III patients and to so called "NED stage IV patients".

                                                                                                                                                                                                      My wife has a friend that had an extremely deep melanoma on her leg.  They had to bare the bone in removing it.  She refused a SNB.  She has refused to see a dermatologist or oncologist in the 14 years since her diagnosis, she has not allowed a single CT scan (though scans were recommended by her surgeon).  Would any follow-up have been over treatment in her case?  Hindsight says apparently it would have been.  She is comfortable with her decision and I with mine.

                                                                                                                                                                                                      My hindsight says that I would not be here if I had followed her example.

                                                                                                                                                                                                      No, I don't think one can automatically, in advance, say that most treatments are definitely either way for an individual case.

                                                                                                                                                                                                      The cases that I find most questionable are:

                                                                                                                                                                                                  1. total removal of all lymph nodes in a basin if one node is found to contain melanoma cells (additional studies are underway on this subject).

                                                                                                                                                                                                  2. Attempts to totally remove most melanoma's by normal radiation alone.

                                                                                                                                                                                                  3. Refusal  of many Oncologists to consider IL-2 as other than a last resort after one has failed numerous types of chemo treatments for the broad spectrum of melanoma cases.  (Does need to be carried out by a highly experienced Oncologist and staff, most Melanoma Oncology specialists do not have the needed experience to administration IL-2)

                                                                                                                                                                                                   4.  Automatic administration of Interferon.  In the cases that interferon works, it can be highly effect.  My problem is that no one knows why it works on the small percentage that it does.  Some studies have shown that it actually can exacerbate melanoma growth in about as many cases as it "cures".  More knowledge is needed to make decisions of this treatment for me, but I have no argument with those that feel they cannot do nothing and want to try  it.

                                                                                                                                                                                                  My biggest problem with the whole field is that I have found that most general doctors, nurses, surgeons, and even general Oncologists know almost nothing about where the melanoma world is.

                                                                                                                                                                                                  THERE IS NO  ACCEPTED protocol at the stage IV level.  I have read many places that the SOP for Stage IV is to be a guinea pig and get in a clinical trial.  The Human Gnome project has finally started making early clinical trials look more beneficial to the patient than ever before..

                                                                                                                                                                                                  justlittleoleme
                                                                                                                                                                                                  Participant
                                                                                                                                                                                                    My two cents. When dealing with cancer, i would rather overtreat than undertreat. Cancer seems to evolve at a much faster pace than our education about it. What you think is overtreatment, could end up saving someones life.
                                                                                                                                                                                                    Barb
                                                                                                                                                                                                      Bob B.
                                                                                                                                                                                                      Participant

                                                                                                                                                                                                        And my one cent?    Undertreatment is bad.  I'd guess unusual, too.  Overtreatment can be as bad, sometimes worse.   With our profit-oriented health care industry and (boo!) health insurance companies, overtreatment appears more likely.    

                                                                                                                                                                                                        But a lot of it comes down to the patient's personality.   The more anxious he is, the more treatment he often seeks.  And finds:   doctors accommodate.    In contrast, I find oncology fascinating, not only because I've been forced to learn a little a bit.   But here, doctors aren't necessarily accommodating.   Medical professionals are often overworked, overstressed, overspecialized and may find a patient like me more of a distraction than a partner.   Understandable.

                                                                                                                                                                                                        While I prefer "under".   That is, less is more.   When a surgeon counsels against surgery, I listen.   Same way I listen to a plumber, a mechanic, a builder who suggests a more minimalist approach.   Different strokes for different folks.

                                                                                                                                                                                                        Minnesota
                                                                                                                                                                                                        Participant

                                                                                                                                                                                                          I know we got off on a bad start Bob, but can I ask you why you chose to wait so many months before deciding to get your new location excised? You can ask for something excised rather than punched or shaved.

                                                                                                                                                                                                          With your primary, based on all the information on this site, as well as other sites, doing anything other than excising it and pathology would have been over-treatment.

                                                                                                                                                                                                          If your second excision turns out to be another melanoma primary and it is over .5mm and less than 1mm, maybe a SLNB should be offered to you. That might be over-treatment. If it's larger than 1mm, what do you think you will be offered in San Diego? I would guess SLNB and WLE. Is that over-treatment to you for yourself? What if its not a primary, but a met? 

                                                                                                                                                                                                           

                                                                                                                                                                                                          Minnesota
                                                                                                                                                                                                          Participant

                                                                                                                                                                                                            I know we got off on a bad start Bob, but can I ask you why you chose to wait so many months before deciding to get your new location excised? You can ask for something excised rather than punched or shaved.

                                                                                                                                                                                                            With your primary, based on all the information on this site, as well as other sites, doing anything other than excising it and pathology would have been over-treatment.

                                                                                                                                                                                                            If your second excision turns out to be another melanoma primary and it is over .5mm and less than 1mm, maybe a SLNB should be offered to you. That might be over-treatment. If it's larger than 1mm, what do you think you will be offered in San Diego? I would guess SLNB and WLE. Is that over-treatment to you for yourself? What if its not a primary, but a met? 

                                                                                                                                                                                                             

                                                                                                                                                                                                            Bob B.
                                                                                                                                                                                                            Participant

                                                                                                                                                                                                              Of course, Minnesota, please ask me anything you want.   Anything, including why I waited 7-8 months.   I could say I've been too involved with other stuff, moving from South America to the US, financial problems, a long story, etc.   Also and potentially misleading, the thing 'appears to be' slow-growth.    But the truth?   I'm an idiot to have waited so long.    

                                                                                                                                                                                                              I insisted #2 be excised from the start.   Just as #1 was removed 20 months ago.    But here in Southern California, dermatologists, even oncologists are squeamish about excision without a prior biopsy (usually a shave).   That's what the doctors want, which is what I'm impatient about.   I want an immediate WLE, plenty of margen (I don't give a damn about 'esthetics') and hope I've found a doctor who agrees:  I'll know more today.   Once the pathology is in, if the mitotic rate were low ( #1 was zero) and if Breslow thickness were .5mm to 1mm,  I'd do the same as before:   Nothing.   No SLNB, let alone talk about a lymphadenectomy nearby Mexican doctors focus on.   Then checkups.   But… if it turns out NOT a primary, but a met…. all bets would be off.   A SLNB no doubt.   And more, about which I know nothing (radiation, chemo, etc).   About time to get it removed, I am looking forward to seeing eventual pathology.

                                                                                                                                                                                                              Bob B.
                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                Of course, Minnesota, please ask me anything you want.   Anything, including why I waited 7-8 months.   I could say I've been too involved with other stuff, moving from South America to the US, financial problems, a long story, etc.   Also and potentially misleading, the thing 'appears to be' slow-growth.    But the truth?   I'm an idiot to have waited so long.    

                                                                                                                                                                                                                I insisted #2 be excised from the start.   Just as #1 was removed 20 months ago.    But here in Southern California, dermatologists, even oncologists are squeamish about excision without a prior biopsy (usually a shave).   That's what the doctors want, which is what I'm impatient about.   I want an immediate WLE, plenty of margen (I don't give a damn about 'esthetics') and hope I've found a doctor who agrees:  I'll know more today.   Once the pathology is in, if the mitotic rate were low ( #1 was zero) and if Breslow thickness were .5mm to 1mm,  I'd do the same as before:   Nothing.   No SLNB, let alone talk about a lymphadenectomy nearby Mexican doctors focus on.   Then checkups.   But… if it turns out NOT a primary, but a met…. all bets would be off.   A SLNB no doubt.   And more, about which I know nothing (radiation, chemo, etc).   About time to get it removed, I am looking forward to seeing eventual pathology.

                                                                                                                                                                                                                Minnesota
                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                  Very understandable, I hope the doctor you've found will get you in soon to remove it. 

                                                                                                                                                                                                                  I've found some variation here, I had an excision as my initial biopsy. I believe it was because my derm is just out of residency at Mayo Clinic, and being young, he confidence level is very high. At some point during the cutting, he must have realized he was scaring me because he back-tracked and said it was probably a seborrheic keratosis. He didn't know that I had a long of prior history with dermatology due to autoimmune skin disease, so I knew something was wrong by the methods he was using. I am angry at myself for not going in sooner, even though it was just 3 months. I am a patient of the University of MN for my autoimmune mess, but for me to get into that clinic in less than a few months wait, I would have had to lie and say it was for my autoimmune disease, which would have also required the process of seeing my primary care doctor and getting a referral. I waited 3 months because I hate the process and then by maybe some divine intervention, my clinic hired this dermatologist and I was able to get in during his first weeks at our clinic group by just calling and making an appt. myself.

                                                                                                                                                                                                                  My good friend, who also lives in MN, who has had several SSM primaries under 1mm has gotten "shaves" for all of them. I somehow find that ridiculous, but I don't know why – I got the impression here that you can lose valuable tumor information by having that type of biopsy, but I don't know that for certain.

                                                                                                                                                                                                                  Minnesota does frozen section with SLNB. I learned here that it shouldn't be done that way, the lymph node should be sent for dermatopatholgy whole. There was no way for me to convince them otherwise, I tried, and I seemed to partially alienate the derm and the surgeon by asking. They thought I was nuts. Well, guess what? I had a melanocytic nevus in my lymph node and that's the one time where they can give false positives which end up in total lymph basin removal. Thankfully, mine was discovered in dermatopathology and didn't happen to be in the part they cut for frozen section. So, I guess what I'm saying is that I do understand where you are coming from. 

                                                                                                                                                                                                                  Now, as to another site close to the original primary, that's something I would be running into the clinic for immediately. No one has explained to me whether recurrance near the primary is most likely another primary or a met, but my derm said that he thinks mine will "come back" in my same arm. I think he said this because my mitotic rate was a 5. I don't want to die from melanoma. I am 47 and I have two children still at home, one is 11. At this point, I think I would accept an offer of limb perfusion if it were made to me, but it won't be. All I want is to be told I don't have cancer anymore, and they won't say that. I hate it that a person can have a negative SN and still have mets and where some here have gone from stage 1 to 4 quickly. 

                                                                                                                                                                                                                  Minnesota
                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                    Very understandable, I hope the doctor you've found will get you in soon to remove it. 

                                                                                                                                                                                                                    I've found some variation here, I had an excision as my initial biopsy. I believe it was because my derm is just out of residency at Mayo Clinic, and being young, he confidence level is very high. At some point during the cutting, he must have realized he was scaring me because he back-tracked and said it was probably a seborrheic keratosis. He didn't know that I had a long of prior history with dermatology due to autoimmune skin disease, so I knew something was wrong by the methods he was using. I am angry at myself for not going in sooner, even though it was just 3 months. I am a patient of the University of MN for my autoimmune mess, but for me to get into that clinic in less than a few months wait, I would have had to lie and say it was for my autoimmune disease, which would have also required the process of seeing my primary care doctor and getting a referral. I waited 3 months because I hate the process and then by maybe some divine intervention, my clinic hired this dermatologist and I was able to get in during his first weeks at our clinic group by just calling and making an appt. myself.

                                                                                                                                                                                                                    My good friend, who also lives in MN, who has had several SSM primaries under 1mm has gotten "shaves" for all of them. I somehow find that ridiculous, but I don't know why – I got the impression here that you can lose valuable tumor information by having that type of biopsy, but I don't know that for certain.

                                                                                                                                                                                                                    Minnesota does frozen section with SLNB. I learned here that it shouldn't be done that way, the lymph node should be sent for dermatopatholgy whole. There was no way for me to convince them otherwise, I tried, and I seemed to partially alienate the derm and the surgeon by asking. They thought I was nuts. Well, guess what? I had a melanocytic nevus in my lymph node and that's the one time where they can give false positives which end up in total lymph basin removal. Thankfully, mine was discovered in dermatopathology and didn't happen to be in the part they cut for frozen section. So, I guess what I'm saying is that I do understand where you are coming from. 

                                                                                                                                                                                                                    Now, as to another site close to the original primary, that's something I would be running into the clinic for immediately. No one has explained to me whether recurrance near the primary is most likely another primary or a met, but my derm said that he thinks mine will "come back" in my same arm. I think he said this because my mitotic rate was a 5. I don't want to die from melanoma. I am 47 and I have two children still at home, one is 11. At this point, I think I would accept an offer of limb perfusion if it were made to me, but it won't be. All I want is to be told I don't have cancer anymore, and they won't say that. I hate it that a person can have a negative SN and still have mets and where some here have gone from stage 1 to 4 quickly. 

                                                                                                                                                                                                                    Minnesota
                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                      Very understandable, I hope the doctor you've found will get you in soon to remove it. 

                                                                                                                                                                                                                      I've found some variation here, I had an excision as my initial biopsy. I believe it was because my derm is just out of residency at Mayo Clinic, and being young, he confidence level is very high. At some point during the cutting, he must have realized he was scaring me because he back-tracked and said it was probably a seborrheic keratosis. He didn't know that I had a long of prior history with dermatology due to autoimmune skin disease, so I knew something was wrong by the methods he was using. I am angry at myself for not going in sooner, even though it was just 3 months. I am a patient of the University of MN for my autoimmune mess, but for me to get into that clinic in less than a few months wait, I would have had to lie and say it was for my autoimmune disease, which would have also required the process of seeing my primary care doctor and getting a referral. I waited 3 months because I hate the process and then by maybe some divine intervention, my clinic hired this dermatologist and I was able to get in during his first weeks at our clinic group by just calling and making an appt. myself.

                                                                                                                                                                                                                      My good friend, who also lives in MN, who has had several SSM primaries under 1mm has gotten "shaves" for all of them. I somehow find that ridiculous, but I don't know why – I got the impression here that you can lose valuable tumor information by having that type of biopsy, but I don't know that for certain.

                                                                                                                                                                                                                      Minnesota does frozen section with SLNB. I learned here that it shouldn't be done that way, the lymph node should be sent for dermatopatholgy whole. There was no way for me to convince them otherwise, I tried, and I seemed to partially alienate the derm and the surgeon by asking. They thought I was nuts. Well, guess what? I had a melanocytic nevus in my lymph node and that's the one time where they can give false positives which end up in total lymph basin removal. Thankfully, mine was discovered in dermatopathology and didn't happen to be in the part they cut for frozen section. So, I guess what I'm saying is that I do understand where you are coming from. 

                                                                                                                                                                                                                      Now, as to another site close to the original primary, that's something I would be running into the clinic for immediately. No one has explained to me whether recurrance near the primary is most likely another primary or a met, but my derm said that he thinks mine will "come back" in my same arm. I think he said this because my mitotic rate was a 5. I don't want to die from melanoma. I am 47 and I have two children still at home, one is 11. At this point, I think I would accept an offer of limb perfusion if it were made to me, but it won't be. All I want is to be told I don't have cancer anymore, and they won't say that. I hate it that a person can have a negative SN and still have mets and where some here have gone from stage 1 to 4 quickly. 

                                                                                                                                                                                                                      Bob B.
                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                        By the way, an article Monday from the LA Times on immunotherapy & melanoma you may find interesting.  Posted elsewhere.

                                                                                                                                                                                                                        Seems promising.   Although only 11 patients were involved in the study and, scrolling down, an immunologist claims results were "inferior".   To his own, I imagine.   "Vanity, thy name is (not necessarily) woman"

                                                                                                                                                                                                                        http://www.latimes.com/health/la-he-cancer-immunotherapy-20120305,0,6643402.story

                                                                                                                                                                                                                        Bob B.
                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                          By the way, an article Monday from the LA Times on immunotherapy & melanoma you may find interesting.  Posted elsewhere.

                                                                                                                                                                                                                          Seems promising.   Although only 11 patients were involved in the study and, scrolling down, an immunologist claims results were "inferior".   To his own, I imagine.   "Vanity, thy name is (not necessarily) woman"

                                                                                                                                                                                                                          http://www.latimes.com/health/la-he-cancer-immunotherapy-20120305,0,6643402.story

                                                                                                                                                                                                                          Bob B.
                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                            By the way, an article Monday from the LA Times on immunotherapy & melanoma you may find interesting.  Posted elsewhere.

                                                                                                                                                                                                                            Seems promising.   Although only 11 patients were involved in the study and, scrolling down, an immunologist claims results were "inferior".   To his own, I imagine.   "Vanity, thy name is (not necessarily) woman"

                                                                                                                                                                                                                            http://www.latimes.com/health/la-he-cancer-immunotherapy-20120305,0,6643402.story

                                                                                                                                                                                                                            Minnesota
                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                              I am watching these studies with hope and dread because I have autoimmune disease and it's very likely that I would be excluded if I were to be at the point where something like this would benefit me. I would be happy if they benefit others though, and even one person getting into remission from this particular one is encouraging.

                                                                                                                                                                                                                              Minnesota
                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                I am watching these studies with hope and dread because I have autoimmune disease and it's very likely that I would be excluded if I were to be at the point where something like this would benefit me. I would be happy if they benefit others though, and even one person getting into remission from this particular one is encouraging.

                                                                                                                                                                                                                                Minnesota
                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                  I am watching these studies with hope and dread because I have autoimmune disease and it's very likely that I would be excluded if I were to be at the point where something like this would benefit me. I would be happy if they benefit others though, and even one person getting into remission from this particular one is encouraging.

                                                                                                                                                                                                                                  Bob B.
                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                    Minnesota, I replied to your post with something flippant like "Understandable.. that I'm an idiot?:-)"   Has it fallen through the cracks, an automatic filter or administrator erase it?   Was my reply received?  Thanks.

                                                                                                                                                                                                                                    Bob B.
                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                      Minnesota, I replied to your post with something flippant like "Understandable.. that I'm an idiot?:-)"   Has it fallen through the cracks, an automatic filter or administrator erase it?   Was my reply received?  Thanks.

                                                                                                                                                                                                                                      Bob B.
                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                        Minnesota, I replied to your post with something flippant like "Understandable.. that I'm an idiot?:-)"   Has it fallen through the cracks, an automatic filter or administrator erase it?   Was my reply received?  Thanks.

                                                                                                                                                                                                                                        Minnesota
                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                          I haven't received the reply you wrote, but I just received one in email asking if it was erased – I don't know if it was. It's weird that I got a notice for the one you wrote this morning, but not the one yesterday.

                                                                                                                                                                                                                                          I didn't mean anything bad about "understandable" – I meant I understood for the reasons you listed, and I can see why your past experience would make you not want to go in sooner too.

                                                                                                                                                                                                                                          Bob B.
                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                            Strange.    Administrator has no idea what happened.   I will try to recap and post again.   Re: my crack about "understandable":    Thanks for your patience, I knew you meant nothing by it.   Just goofing around, sorry.

                                                                                                                                                                                                                                            Bob B.
                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                              Strange.    Administrator has no idea what happened.   I will try to recap and post again.   Re: my crack about "understandable":    Thanks for your patience, I knew you meant nothing by it.   Just goofing around, sorry.

                                                                                                                                                                                                                                              Bob B.
                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                Strange.    Administrator has no idea what happened.   I will try to recap and post again.   Re: my crack about "understandable":    Thanks for your patience, I knew you meant nothing by it.   Just goofing around, sorry.

                                                                                                                                                                                                                                                Bob B.
                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                  Strange.    Administrator has no idea what happened.   I will try to recap and post again.   Re: my crack about "understandable":    Thanks for your patience, I knew you meant nothing by it.   Just goofing around, sorry.

                                                                                                                                                                                                                                                  Bob B.
                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                    Strange.    Administrator has no idea what happened.   I will try to recap and post again.   Re: my crack about "understandable":    Thanks for your patience, I knew you meant nothing by it.   Just goofing around, sorry.

                                                                                                                                                                                                                                                    Bob B.
                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                      Strange.    Administrator has no idea what happened.   I will try to recap and post again.   Re: my crack about "understandable":    Thanks for your patience, I knew you meant nothing by it.   Just goofing around, sorry.

                                                                                                                                                                                                                                                      Bob B.
                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                        Strange.    Administrator has no idea what happened.   I will try to recap and post again.   Re: my crack about "understandable":    Thanks for your patience, I knew you meant nothing by it.   Just goofing around, sorry.

                                                                                                                                                                                                                                                        Bob B.
                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                          Strange.    Administrator has no idea what happened.   I will try to recap and post again.   Re: my crack about "understandable":    Thanks for your patience, I knew you meant nothing by it.   Just goofing around, sorry.

                                                                                                                                                                                                                                                          Bob B.
                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                            Strange.    Administrator has no idea what happened.   I will try to recap and post again.   Re: my crack about "understandable":    Thanks for your patience, I knew you meant nothing by it.   Just goofing around, sorry.

                                                                                                                                                                                                                                                            Minnesota
                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                              It's just another thing to blame on the sun πŸ˜‰  Solar flares. This one came in three times.

                                                                                                                                                                                                                                                              Minnesota
                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                It's just another thing to blame on the sun πŸ˜‰  Solar flares. This one came in three times.

                                                                                                                                                                                                                                                                Minnesota
                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                  It's just another thing to blame on the sun πŸ˜‰  Solar flares. This one came in three times.

                                                                                                                                                                                                                                                                  Bob B.
                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                    So true.  Climate change, again… πŸ™‚

                                                                                                                                                                                                                                                                    Bob B.
                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                      So true.  Climate change, again… πŸ™‚

                                                                                                                                                                                                                                                                      Bob B.
                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                        So true.  Climate change, again… πŸ™‚

                                                                                                                                                                                                                                                                        Minnesota
                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                          I haven't received the reply you wrote, but I just received one in email asking if it was erased – I don't know if it was. It's weird that I got a notice for the one you wrote this morning, but not the one yesterday.

                                                                                                                                                                                                                                                                          I didn't mean anything bad about "understandable" – I meant I understood for the reasons you listed, and I can see why your past experience would make you not want to go in sooner too.

                                                                                                                                                                                                                                                                          Minnesota
                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                            I haven't received the reply you wrote, but I just received one in email asking if it was erased – I don't know if it was. It's weird that I got a notice for the one you wrote this morning, but not the one yesterday.

                                                                                                                                                                                                                                                                            I didn't mean anything bad about "understandable" – I meant I understood for the reasons you listed, and I can see why your past experience would make you not want to go in sooner too.

                                                                                                                                                                                                                                                                            Bob B.
                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                              Of course, Minnesota, please ask me anything you want.   Anything, including why I waited 7-8 months.   I could say I've been too involved with other stuff, moving from South America to the US, financial problems, a long story, etc.   Also and potentially misleading, the thing 'appears to be' slow-growth.    But the truth?   I'm an idiot to have waited so long.    

                                                                                                                                                                                                                                                                              I insisted #2 be excised from the start.   Just as #1 was removed 20 months ago.    But here in Southern California, dermatologists, even oncologists are squeamish about excision without a prior biopsy (usually a shave).   That's what the doctors want, which is what I'm impatient about.   I want an immediate WLE, plenty of margen (I don't give a damn about 'esthetics') and hope I've found a doctor who agrees:  I'll know more today.   Once the pathology is in, if the mitotic rate were low ( #1 was zero) and if Breslow thickness were .5mm to 1mm,  I'd do the same as before:   Nothing.   No SLNB, let alone talk about a lymphadenectomy nearby Mexican doctors focus on.   Then checkups.   But… if it turns out NOT a primary, but a met…. all bets would be off.   A SLNB no doubt.   And more, about which I know nothing (radiation, chemo, etc).   About time to get it removed, I am looking forward to seeing eventual pathology.

                                                                                                                                                                                                                                                                              Minnesota
                                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                                I know we got off on a bad start Bob, but can I ask you why you chose to wait so many months before deciding to get your new location excised? You can ask for something excised rather than punched or shaved.

                                                                                                                                                                                                                                                                                With your primary, based on all the information on this site, as well as other sites, doing anything other than excising it and pathology would have been over-treatment.

                                                                                                                                                                                                                                                                                If your second excision turns out to be another melanoma primary and it is over .5mm and less than 1mm, maybe a SLNB should be offered to you. That might be over-treatment. If it's larger than 1mm, what do you think you will be offered in San Diego? I would guess SLNB and WLE. Is that over-treatment to you for yourself? What if its not a primary, but a met? 

                                                                                                                                                                                                                                                                                 

                                                                                                                                                                                                                                                                                Bob B.
                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                  And my one cent?    Undertreatment is bad.  I'd guess unusual, too.  Overtreatment can be as bad, sometimes worse.   With our profit-oriented health care industry and (boo!) health insurance companies, overtreatment appears more likely.    

                                                                                                                                                                                                                                                                                  But a lot of it comes down to the patient's personality.   The more anxious he is, the more treatment he often seeks.  And finds:   doctors accommodate.    In contrast, I find oncology fascinating, not only because I've been forced to learn a little a bit.   But here, doctors aren't necessarily accommodating.   Medical professionals are often overworked, overstressed, overspecialized and may find a patient like me more of a distraction than a partner.   Understandable.

                                                                                                                                                                                                                                                                                  While I prefer "under".   That is, less is more.   When a surgeon counsels against surgery, I listen.   Same way I listen to a plumber, a mechanic, a builder who suggests a more minimalist approach.   Different strokes for different folks.

                                                                                                                                                                                                                                                                                  Bob B.
                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                    And my one cent?    Undertreatment is bad.  I'd guess unusual, too.  Overtreatment can be as bad, sometimes worse.   With our profit-oriented health care industry and (boo!) health insurance companies, overtreatment appears more likely.    

                                                                                                                                                                                                                                                                                    But a lot of it comes down to the patient's personality.   The more anxious he is, the more treatment he often seeks.  And finds:   doctors accommodate.    In contrast, I find oncology fascinating, not only because I've been forced to learn a little a bit.   But here, doctors aren't necessarily accommodating.   Medical professionals are often overworked, overstressed, overspecialized and may find a patient like me more of a distraction than a partner.   Understandable.

                                                                                                                                                                                                                                                                                    While I prefer "under".   That is, less is more.   When a surgeon counsels against surgery, I listen.   Same way I listen to a plumber, a mechanic, a builder who suggests a more minimalist approach.   Different strokes for different folks.

                                                                                                                                                                                                                                                                                  justlittleoleme
                                                                                                                                                                                                                                                                                  Participant
                                                                                                                                                                                                                                                                                    My two cents. When dealing with cancer, i would rather overtreat than undertreat. Cancer seems to evolve at a much faster pace than our education about it. What you think is overtreatment, could end up saving someones life.
                                                                                                                                                                                                                                                                                    Barb
                                                                                                                                                                                                                                                                                    justlittleoleme
                                                                                                                                                                                                                                                                                    Participant
                                                                                                                                                                                                                                                                                      My two cents. When dealing with cancer, i would rather overtreat than undertreat. Cancer seems to evolve at a much faster pace than our education about it. What you think is overtreatment, could end up saving someones life.
                                                                                                                                                                                                                                                                                      Barb
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                                                                                                                                                                                                                                                                                  The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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