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“Supposed to have been ok”

Forums General Melanoma Community “Supposed to have been ok”

  • Post
    JC
    Participant

      I've read a number of profiles where the original lesion was Stage IA, early, thin, all removed with surgery, no follow up was recommended or needed other than skin checks, etc…

      I've read a number of profiles where the original lesion was Stage IA, early, thin, all removed with surgery, no follow up was recommended or needed other than skin checks, etc… only to have metastasis some years later and bad outcomes.  I guess I just don't get the info that is very common to see that says if caught early, melanoma is highly curable, highly treatable, 97% survival, etc….  How can that be the case when example after example on just this forum of early Stage IA'ers who developed metastatic disease?  Should someone with a 0.2 or 0.3 mm lesion that was treated be demanding further treatment of some sort, knowing the possibilities?

    Viewing 23 reply threads
    • Replies
        Harry in Fair Oaks
        Participant

          You should realize that this bulletin board is heavily tilted to those who had unfortunate outcomes.  Very few people who had thin melanomas excised 10 or 20 years ago spend much, if any, time even thinking about it.  They are busy dealing with the important issues in their present lives.  So you are not going to see them seeking this board and posting about their  0.2 or 0.3 mm lesions that not recurring.

          If you went to the Highway Patrol and read their their fatal accident ledgers, would you think that your driving a car involves a high probabilty of a deadly collision?  Or would you put it in a proper perspective?

          Best wishes,

          Harry

          Harry in Fair Oaks
          Participant

            You should realize that this bulletin board is heavily tilted to those who had unfortunate outcomes.  Very few people who had thin melanomas excised 10 or 20 years ago spend much, if any, time even thinking about it.  They are busy dealing with the important issues in their present lives.  So you are not going to see them seeking this board and posting about their  0.2 or 0.3 mm lesions that not recurring.

            If you went to the Highway Patrol and read their their fatal accident ledgers, would you think that your driving a car involves a high probabilty of a deadly collision?  Or would you put it in a proper perspective?

            Best wishes,

            Harry

            Harry in Fair Oaks
            Participant

              You should realize that this bulletin board is heavily tilted to those who had unfortunate outcomes.  Very few people who had thin melanomas excised 10 or 20 years ago spend much, if any, time even thinking about it.  They are busy dealing with the important issues in their present lives.  So you are not going to see them seeking this board and posting about their  0.2 or 0.3 mm lesions that not recurring.

              If you went to the Highway Patrol and read their their fatal accident ledgers, would you think that your driving a car involves a high probabilty of a deadly collision?  Or would you put it in a proper perspective?

              Best wishes,

              Harry

              Richard_K
              Participant

                 

                Good comments from Harry.  My original diagnosis was in 1998 and stage IV found in 2009.  In those intervening eleven years my only melanoma thoughts were about having regular check-ups.  I never even knew of this site until stage IV.

                Dick

                Richard_K
                Participant

                   

                  Good comments from Harry.  My original diagnosis was in 1998 and stage IV found in 2009.  In those intervening eleven years my only melanoma thoughts were about having regular check-ups.  I never even knew of this site until stage IV.

                  Dick

                  Richard_K
                  Participant

                     

                    Good comments from Harry.  My original diagnosis was in 1998 and stage IV found in 2009.  In those intervening eleven years my only melanoma thoughts were about having regular check-ups.  I never even knew of this site until stage IV.

                    Dick

                    lhaley
                    Participant

                      I developed mets 27 years later ;(   Mine was .85 if I remember correctly.  Each is is differnt so you can't base it on someone else.  I look at there are many improvements since 1979 since I had my primary.  Don't waste your life worrying what happend yet.

                      Linda

                      lhaley
                      Participant

                        I developed mets 27 years later ;(   Mine was .85 if I remember correctly.  Each is is differnt so you can't base it on someone else.  I look at there are many improvements since 1979 since I had my primary.  Don't waste your life worrying what happend yet.

                        Linda

                        lhaley
                        Participant

                          I developed mets 27 years later ;(   Mine was .85 if I remember correctly.  Each is is differnt so you can't base it on someone else.  I look at there are many improvements since 1979 since I had my primary.  Don't waste your life worrying what happend yet.

                          Linda

                          Janner
                          Participant
                            Stage IA today is different than stage IA of two years ago. You can’t compare your stats to someone else, there are just too many variables including misdiagnoses and patient misunderstanding. I’ve ruin across petiole who think they know their disease but when queried, the facts don’t add up. Stage IA does not have a100% survival rate do someone has to be in those small percentages. the ones who are are the ones most likely to past. the others have moved in with life.

                            Janner
                            Stage IA for 18 treats before the 2010 staffing changed me to IB.

                            Janner
                            Participant
                              Stage IA today is different than stage IA of two years ago. You can’t compare your stats to someone else, there are just too many variables including misdiagnoses and patient misunderstanding. I’ve ruin across petiole who think they know their disease but when queried, the facts don’t add up. Stage IA does not have a100% survival rate do someone has to be in those small percentages. the ones who are are the ones most likely to past. the others have moved in with life.

                              Janner
                              Stage IA for 18 treats before the 2010 staffing changed me to IB.

                                Janner
                                Participant
                                  Sorry do the typos, the phone input is not ideal!
                                  Janner
                                  Participant
                                    Sorry do the typos, the phone input is not ideal!
                                    Janner
                                    Participant
                                      Sorry do the typos, the phone input is not ideal!
                                    Janner
                                    Participant
                                      Stage IA today is different than stage IA of two years ago. You can’t compare your stats to someone else, there are just too many variables including misdiagnoses and patient misunderstanding. I’ve ruin across petiole who think they know their disease but when queried, the facts don’t add up. Stage IA does not have a100% survival rate do someone has to be in those small percentages. the ones who are are the ones most likely to past. the others have moved in with life.

                                      Janner
                                      Stage IA for 18 treats before the 2010 staffing changed me to IB.

                                      Lori C
                                      Participant

                                        As has been pointed out, people who have the more common good outcome with stage four just don't seek the board.  So this is a "false sample", using quantitative reasoning language.  Obviously some people have diagnoses of stage I who do go on to have the cancer spread, but I don't think you can use this board, or any like it, as a statistical indicator of how often this happens.

                                        Lori C
                                        Participant

                                          As has been pointed out, people who have the more common good outcome with stage four just don't seek the board.  So this is a "false sample", using quantitative reasoning language.  Obviously some people have diagnoses of stage I who do go on to have the cancer spread, but I don't think you can use this board, or any like it, as a statistical indicator of how often this happens.

                                          Lori C
                                          Participant

                                            As has been pointed out, people who have the more common good outcome with stage four just don't seek the board.  So this is a "false sample", using quantitative reasoning language.  Obviously some people have diagnoses of stage I who do go on to have the cancer spread, but I don't think you can use this board, or any like it, as a statistical indicator of how often this happens.

                                            washoegal
                                            Participant

                                              The simple answer to your question is "No" there are no other treatment to demand and besides with any treatment you just run the risk of weakening you own immune system.  What you want to do is build up you immune system and proactice safe sun. 

                                              Both Harry and Janner make good points.  Take them to heart.  Then take care of yourself and move forward.

                                               

                                              Mary

                                              Stage 3

                                              washoegal
                                              Participant

                                                The simple answer to your question is "No" there are no other treatment to demand and besides with any treatment you just run the risk of weakening you own immune system.  What you want to do is build up you immune system and proactice safe sun. 

                                                Both Harry and Janner make good points.  Take them to heart.  Then take care of yourself and move forward.

                                                 

                                                Mary

                                                Stage 3

                                                washoegal
                                                Participant

                                                  The simple answer to your question is "No" there are no other treatment to demand and besides with any treatment you just run the risk of weakening you own immune system.  What you want to do is build up you immune system and proactice safe sun. 

                                                  Both Harry and Janner make good points.  Take them to heart.  Then take care of yourself and move forward.

                                                   

                                                  Mary

                                                  Stage 3

                                                  natasha
                                                  Participant

                                                    Hi! I had 0.2 mm  half an year ago .

                                                    Just had my follow up yesterday.

                                                    Thay said I need to go to hospital for follow ups just for 1 years after diagnosed and complete treatment.I wanted 3 years ,they said NO.

                                                    I am confused about all that ,I was under impression it should be 3 years follow ups. Doc said most possible reaccurance is during 1 year and it is 4% chanse for me. After one year chanse is even less.

                                                    How long did you have your follow ups with specialists , if thinner lesions ???

                                                    Thank you

                                                    natasha
                                                    Participant

                                                      Hi! I had 0.2 mm  half an year ago .

                                                      Just had my follow up yesterday.

                                                      Thay said I need to go to hospital for follow ups just for 1 years after diagnosed and complete treatment.I wanted 3 years ,they said NO.

                                                      I am confused about all that ,I was under impression it should be 3 years follow ups. Doc said most possible reaccurance is during 1 year and it is 4% chanse for me. After one year chanse is even less.

                                                      How long did you have your follow ups with specialists , if thinner lesions ???

                                                      Thank you

                                                        JC
                                                        Participant

                                                          I don't know how they could say that.  Thinner lesions actually recur later – peak is like 72 months which is 6 years.  It could happen 10 years, 15 years, 20 years later.  So, risk is definitely not over after 1 year.

                                                          JC
                                                          Participant

                                                            I don't know how they could say that.  Thinner lesions actually recur later – peak is like 72 months which is 6 years.  It could happen 10 years, 15 years, 20 years later.  So, risk is definitely not over after 1 year.

                                                            natasha
                                                            Participant

                                                              I agree ,but my Doc said opposite…

                                                              natasha
                                                              Participant

                                                                I agree ,but my Doc said opposite…

                                                                natasha
                                                                Participant

                                                                  I agree ,but my Doc said opposite…

                                                                  Janner
                                                                  Participant

                                                                    The highest risk for all lesions is the first two years.  Where have you read 72 months?

                                                                    Different countries have different protocols.  At the very least, everyone should have yearly checkups.  Some newly diagnosed have quarterly checks, some semi-annual.  Most early stagers move to yearly visits after several years melanoma free.  Personally, I watch myself and don't spend much time worrying if someone else watches my skin.  I found my 3 primaries.  I went 7 years after my first melanoma not seeing any skin doctor.  Mine was for insurance reasons.  I started back with a derm when I found my second primary 8 years after #1.   I think self observation is more important than anything. 

                                                                    Janner
                                                                    Participant

                                                                      The highest risk for all lesions is the first two years.  Where have you read 72 months?

                                                                      Different countries have different protocols.  At the very least, everyone should have yearly checkups.  Some newly diagnosed have quarterly checks, some semi-annual.  Most early stagers move to yearly visits after several years melanoma free.  Personally, I watch myself and don't spend much time worrying if someone else watches my skin.  I found my 3 primaries.  I went 7 years after my first melanoma not seeing any skin doctor.  Mine was for insurance reasons.  I started back with a derm when I found my second primary 8 years after #1.   I think self observation is more important than anything. 

                                                                      Janner
                                                                      Participant

                                                                        The highest risk for all lesions is the first two years.  Where have you read 72 months?

                                                                        Different countries have different protocols.  At the very least, everyone should have yearly checkups.  Some newly diagnosed have quarterly checks, some semi-annual.  Most early stagers move to yearly visits after several years melanoma free.  Personally, I watch myself and don't spend much time worrying if someone else watches my skin.  I found my 3 primaries.  I went 7 years after my first melanoma not seeing any skin doctor.  Mine was for insurance reasons.  I started back with a derm when I found my second primary 8 years after #1.   I think self observation is more important than anything. 

                                                                        JC
                                                                        Participant

                                                                          "Overall, only about 2% of patients with a melanoma less than 0.76 mm thick will have a recurrence, but the peak incidence of recurrence is not until 72 months."

                                                                           

                                                                          There was another article I read that stated 5-10 years is peak recurrence for thin melanomas less than 0.75mm.

                                                                           

                                                                          Self observation of skin is possible, but I'm talking about metastasis to internal organs.

                                                                          JC
                                                                          Participant

                                                                            "Overall, only about 2% of patients with a melanoma less than 0.76 mm thick will have a recurrence, but the peak incidence of recurrence is not until 72 months."

                                                                             

                                                                            There was another article I read that stated 5-10 years is peak recurrence for thin melanomas less than 0.75mm.

                                                                             

                                                                            Self observation of skin is possible, but I'm talking about metastasis to internal organs.

                                                                            JC
                                                                            Participant

                                                                              "Overall, only about 2% of patients with a melanoma less than 0.76 mm thick will have a recurrence, but the peak incidence of recurrence is not until 72 months."

                                                                               

                                                                              There was another article I read that stated 5-10 years is peak recurrence for thin melanomas less than 0.75mm.

                                                                               

                                                                              Self observation of skin is possible, but I'm talking about metastasis to internal organs.

                                                                              JC
                                                                              Participant

                                                                                It won't let me post the article link because it triggers the spam filter.  but it's called "Melanoma follow-up duties begin at diagnosis" by Timothy F. Kirn from FindArticles / Health / Skin & Allergy News / March, 2003

                                                                                JC
                                                                                Participant

                                                                                  It won't let me post the article link because it triggers the spam filter.  but it's called "Melanoma follow-up duties begin at diagnosis" by Timothy F. Kirn from FindArticles / Health / Skin & Allergy News / March, 2003

                                                                                  JC
                                                                                  Participant

                                                                                    It won't let me post the article link because it triggers the spam filter.  but it's called "Melanoma follow-up duties begin at diagnosis" by Timothy F. Kirn from FindArticles / Health / Skin & Allergy News / March, 2003

                                                                                    Janner
                                                                                    Participant

                                                                                      I read the article, but nowhere does it show the sample sizes.  I want to know how many people were included in this study before I draw any conclusions.  The following site shows a curve and recurrence rates along the lines that I have seen published many times:  http://www.sign.ac.uk/guidelines/fulltext/72/section7.html.  It's the first site I found but there are others much like it.  It's a UK site so maybe Natasha can use it to get more followup visits.

                                                                                      As for internal mets, it's no different with melanoma or any other type of cancer.  No way to really track them.  Even scans haven't been shown to increase survival which is why many institutions will only do them if there are symptoms.  The odds for an early stage melanoma warrior are very good.  There's not really anything PROVEN you can do to change your odds of a recurrence.  One of these days, maybe there will be better diagnostic tools (blood tests or the like), but science for melanoma isn't that advanced yet.

                                                                                      Janner
                                                                                      Participant

                                                                                        I read the article, but nowhere does it show the sample sizes.  I want to know how many people were included in this study before I draw any conclusions.  The following site shows a curve and recurrence rates along the lines that I have seen published many times:  http://www.sign.ac.uk/guidelines/fulltext/72/section7.html.  It's the first site I found but there are others much like it.  It's a UK site so maybe Natasha can use it to get more followup visits.

                                                                                        As for internal mets, it's no different with melanoma or any other type of cancer.  No way to really track them.  Even scans haven't been shown to increase survival which is why many institutions will only do them if there are symptoms.  The odds for an early stage melanoma warrior are very good.  There's not really anything PROVEN you can do to change your odds of a recurrence.  One of these days, maybe there will be better diagnostic tools (blood tests or the like), but science for melanoma isn't that advanced yet.

                                                                                        Janner
                                                                                        Participant

                                                                                          I read the article, but nowhere does it show the sample sizes.  I want to know how many people were included in this study before I draw any conclusions.  The following site shows a curve and recurrence rates along the lines that I have seen published many times:  http://www.sign.ac.uk/guidelines/fulltext/72/section7.html.  It's the first site I found but there are others much like it.  It's a UK site so maybe Natasha can use it to get more followup visits.

                                                                                          As for internal mets, it's no different with melanoma or any other type of cancer.  No way to really track them.  Even scans haven't been shown to increase survival which is why many institutions will only do them if there are symptoms.  The odds for an early stage melanoma warrior are very good.  There's not really anything PROVEN you can do to change your odds of a recurrence.  One of these days, maybe there will be better diagnostic tools (blood tests or the like), but science for melanoma isn't that advanced yet.

                                                                                          natasha
                                                                                          Participant

                                                                                            In country I live ( United Kingdom) even different protocols in defferent areas and hospitals !!

                                                                                            Thanks ,Janner for making clear  – 2 years after diagnosys are most dangerous. Basicly it what my Doc said yesterday.

                                                                                            I am trying to move on with my life and even planning summer vacation πŸ™‚ With a lot of sun creams and hats with me πŸ™‚

                                                                                             

                                                                                            natasha
                                                                                            Participant

                                                                                              In country I live ( United Kingdom) even different protocols in defferent areas and hospitals !!

                                                                                              Thanks ,Janner for making clear  – 2 years after diagnosys are most dangerous. Basicly it what my Doc said yesterday.

                                                                                              I am trying to move on with my life and even planning summer vacation πŸ™‚ With a lot of sun creams and hats with me πŸ™‚

                                                                                               

                                                                                              natasha
                                                                                              Participant

                                                                                                In country I live ( United Kingdom) even different protocols in defferent areas and hospitals !!

                                                                                                Thanks ,Janner for making clear  – 2 years after diagnosys are most dangerous. Basicly it what my Doc said yesterday.

                                                                                                I am trying to move on with my life and even planning summer vacation πŸ™‚ With a lot of sun creams and hats with me πŸ™‚

                                                                                                 

                                                                                                JC
                                                                                                Participant

                                                                                                  I don't know how they could say that.  Thinner lesions actually recur later – peak is like 72 months which is 6 years.  It could happen 10 years, 15 years, 20 years later.  So, risk is definitely not over after 1 year.

                                                                                                natasha
                                                                                                Participant

                                                                                                  Hi! I had 0.2 mm  half an year ago .

                                                                                                  Just had my follow up yesterday.

                                                                                                  Thay said I need to go to hospital for follow ups just for 1 years after diagnosed and complete treatment.I wanted 3 years ,they said NO.

                                                                                                  I am confused about all that ,I was under impression it should be 3 years follow ups. Doc said most possible reaccurance is during 1 year and it is 4% chanse for me. After one year chanse is even less.

                                                                                                  How long did you have your follow ups with specialists , if thinner lesions ???

                                                                                                  Thank you

                                                                                                  shellebrownies
                                                                                                  Participant

                                                                                                    I wonder if my profile is one of the ones you speak of, as that is what happened to my husband.

                                                                                                    That being said… please understand that Don's situation was highly unusual. Even his melanoma specialists were astounded by his case and at just how agressive it was. I have long since chalked it up to a one-in-a-million twist of fate.

                                                                                                    I guess what I'm trying to get at here is that Harry and Janner have made an excellent point: the percentages will seem skewed in an environment like this. It does not reflect the melanoma community as a whole. People migrate here if they have diagnosis questions…and they stay when they have complications to act as support for each other. 

                                                                                                    We are very fortunate to have Janner as a great source of information for the early stage people out there, but the vast majority of people who have Stage IA/IB diagnoses and have been treated will not be found in this kind of forum; they will have moved on with their lives, not having had a reoccurence to keep them here.

                                                                                                    I have never felt that my husband's case was in any way mishandled by his doctors or that something else should have been done that would've changed his outcome. He went bi-yearly to his dermatologist for checkups. But the disease never reappeared on the surface of his skin. He felt healthy, didn't have any noticable warning signs. By all appearances, there was nothing for anyone to treat.

                                                                                                    Don't let the worst-case scenarios you can find on this site scare you into thinking that you are next. The odds are vastly in your favor that you won't.

                                                                                                    Best of luck to you!

                                                                                                    Michelle

                                                                                                    shellebrownies
                                                                                                    Participant

                                                                                                      I wonder if my profile is one of the ones you speak of, as that is what happened to my husband.

                                                                                                      That being said… please understand that Don's situation was highly unusual. Even his melanoma specialists were astounded by his case and at just how agressive it was. I have long since chalked it up to a one-in-a-million twist of fate.

                                                                                                      I guess what I'm trying to get at here is that Harry and Janner have made an excellent point: the percentages will seem skewed in an environment like this. It does not reflect the melanoma community as a whole. People migrate here if they have diagnosis questions…and they stay when they have complications to act as support for each other. 

                                                                                                      We are very fortunate to have Janner as a great source of information for the early stage people out there, but the vast majority of people who have Stage IA/IB diagnoses and have been treated will not be found in this kind of forum; they will have moved on with their lives, not having had a reoccurence to keep them here.

                                                                                                      I have never felt that my husband's case was in any way mishandled by his doctors or that something else should have been done that would've changed his outcome. He went bi-yearly to his dermatologist for checkups. But the disease never reappeared on the surface of his skin. He felt healthy, didn't have any noticable warning signs. By all appearances, there was nothing for anyone to treat.

                                                                                                      Don't let the worst-case scenarios you can find on this site scare you into thinking that you are next. The odds are vastly in your favor that you won't.

                                                                                                      Best of luck to you!

                                                                                                      Michelle

                                                                                                      shellebrownies
                                                                                                      Participant

                                                                                                        I wonder if my profile is one of the ones you speak of, as that is what happened to my husband.

                                                                                                        That being said… please understand that Don's situation was highly unusual. Even his melanoma specialists were astounded by his case and at just how agressive it was. I have long since chalked it up to a one-in-a-million twist of fate.

                                                                                                        I guess what I'm trying to get at here is that Harry and Janner have made an excellent point: the percentages will seem skewed in an environment like this. It does not reflect the melanoma community as a whole. People migrate here if they have diagnosis questions…and they stay when they have complications to act as support for each other. 

                                                                                                        We are very fortunate to have Janner as a great source of information for the early stage people out there, but the vast majority of people who have Stage IA/IB diagnoses and have been treated will not be found in this kind of forum; they will have moved on with their lives, not having had a reoccurence to keep them here.

                                                                                                        I have never felt that my husband's case was in any way mishandled by his doctors or that something else should have been done that would've changed his outcome. He went bi-yearly to his dermatologist for checkups. But the disease never reappeared on the surface of his skin. He felt healthy, didn't have any noticable warning signs. By all appearances, there was nothing for anyone to treat.

                                                                                                        Don't let the worst-case scenarios you can find on this site scare you into thinking that you are next. The odds are vastly in your favor that you won't.

                                                                                                        Best of luck to you!

                                                                                                        Michelle

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