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2nd opinion on aytpical results in melenoma!

Forums General Melanoma Community 2nd opinion on aytpical results in melenoma!

  • Post
    mlbjab
    Participant

      I am beside myself.  My second opinion on slides has resulted in a worse diagnosis of malignant melenoma.  This was an old mole that was biospied and atypcal but only a little and grew back.  What does this mean?  Does this mean I have to change the way I live my life?  Does everyone have at least one melenoma but not know it?

      I am beside myself.  My second opinion on slides has resulted in a worse diagnosis of malignant melenoma.  This was an old mole that was biospied and atypcal but only a little and grew back.  What does this mean?  Does this mean I have to change the way I live my life?  Does everyone have at least one melenoma but not know it? How common is this?  It was a noninvasive melanoma confined to my first layer of skin.  I am leaving on holiday for the beach next week.  Was dreaming of sun and sand.  I am now noticing odd pains in my head and joints and scared it has spread.

    Viewing 11 reply threads
    • Replies
        JC
        Participant

          So, you're saying the initial diagnosis on biopsy was mildly atypical?  And, now another opinion on the same slides says MM?  That is scary, I've had probably 20+ mildly atypical biopsy results.  I don't get second opinions on them because I always thought there may be a fine line between severely atypical and melanoma, but a clear difference between mildly aytpical and melanoma. 

          JC
          Participant

            So, you're saying the initial diagnosis on biopsy was mildly atypical?  And, now another opinion on the same slides says MM?  That is scary, I've had probably 20+ mildly atypical biopsy results.  I don't get second opinions on them because I always thought there may be a fine line between severely atypical and melanoma, but a clear difference between mildly aytpical and melanoma. 

            JC
            Participant

              So, you're saying the initial diagnosis on biopsy was mildly atypical?  And, now another opinion on the same slides says MM?  That is scary, I've had probably 20+ mildly atypical biopsy results.  I don't get second opinions on them because I always thought there may be a fine line between severely atypical and melanoma, but a clear difference between mildly aytpical and melanoma. 

              natasha
              Participant

                Hi!

                I had 2 opinion as well, and both agreed it is severely atypical and treat it as 1a melanoma.

                If it is severely atypical Doctors usually take worst scenario ,and make melanoma diagnosys.

                Is it possible 2nd opinion means yours is severely atypical?

                And if it is melanoma , what path report says?Is it in-situ??

                I think you need to change lifestyle.

                I don't sunshine any more ,but I visit seasides, I seat in shade and wear hat etc.

                I try to aply 50spf cream on my body when it is sunny outside.

                If you have in-situ , you prognosys to survive it is 99.9% πŸ™‚

                natasha
                Participant

                  Hi!

                  I had 2 opinion as well, and both agreed it is severely atypical and treat it as 1a melanoma.

                  If it is severely atypical Doctors usually take worst scenario ,and make melanoma diagnosys.

                  Is it possible 2nd opinion means yours is severely atypical?

                  And if it is melanoma , what path report says?Is it in-situ??

                  I think you need to change lifestyle.

                  I don't sunshine any more ,but I visit seasides, I seat in shade and wear hat etc.

                  I try to aply 50spf cream on my body when it is sunny outside.

                  If you have in-situ , you prognosys to survive it is 99.9% πŸ™‚

                  natasha
                  Participant

                    Hi!

                    I had 2 opinion as well, and both agreed it is severely atypical and treat it as 1a melanoma.

                    If it is severely atypical Doctors usually take worst scenario ,and make melanoma diagnosys.

                    Is it possible 2nd opinion means yours is severely atypical?

                    And if it is melanoma , what path report says?Is it in-situ??

                    I think you need to change lifestyle.

                    I don't sunshine any more ,but I visit seasides, I seat in shade and wear hat etc.

                    I try to aply 50spf cream on my body when it is sunny outside.

                    If you have in-situ , you prognosys to survive it is 99.9% πŸ™‚

                    Harry in Fair Oaks
                    Participant

                      So the bottom line is that it was a melanoma in situ, confined to the topmost layer of the skin. 

                      You got it in time.  It will not spread.  Any pains you might be feeling are unrelated to it – probably just part of the normal "wear and tear" of life.

                      Have fun on your holiday, but you should always exercise common sense and moderate your sun exposure.  This episode was all to the good if it got you thinking about sun damage.  Consider it a warning shot and get on with your life.

                      Best wishes,

                      Harry

                      Harry in Fair Oaks
                      Participant

                        So the bottom line is that it was a melanoma in situ, confined to the topmost layer of the skin. 

                        You got it in time.  It will not spread.  Any pains you might be feeling are unrelated to it – probably just part of the normal "wear and tear" of life.

                        Have fun on your holiday, but you should always exercise common sense and moderate your sun exposure.  This episode was all to the good if it got you thinking about sun damage.  Consider it a warning shot and get on with your life.

                        Best wishes,

                        Harry

                        Harry in Fair Oaks
                        Participant

                          So the bottom line is that it was a melanoma in situ, confined to the topmost layer of the skin. 

                          You got it in time.  It will not spread.  Any pains you might be feeling are unrelated to it – probably just part of the normal "wear and tear" of life.

                          Have fun on your holiday, but you should always exercise common sense and moderate your sun exposure.  This episode was all to the good if it got you thinking about sun damage.  Consider it a warning shot and get on with your life.

                          Best wishes,

                          Harry

                            JC
                            Participant

                              I wish I could think about mine that way. . consider it a warning shot and get on with my life.  Were it in situ, maybe it would be easier.  But mine was early superficially invasive.  So, I feel like a walking cancer ticking time bomb that is going to go off in however many years.  I know it was thin, 0.3mm, but still not in situ.  I know others on this forum would find that enviable, as I find in situ enviable.  But, people can't say "you got it in time" or "it will not spread" like they can say with in situ. 

                              Harry in Fair Oaks
                              Participant

                                I don't know if you're the "Anonymous" who wrote the original post – a problem with posting on this BB is that there can be any number of different "Anonymouses" on a given thread, so it gets confusing.  Anyhow, the original poster said it was confined to the topmost layer of the skin (i.e. the epidermis).  That is in situ.  There are no blood vessels or lymph ducts in the epidermis, so the MM can't spread.

                                Obviously a 0.3 mm is a different issue, but we are still talking about a very small chance of recurrance (I don't know the current statistics, but I'm sure the survival rate is in the high 90s percentage wise).  Logically, there is no reason to feel like "a walking cancer time bomb."  I would bet that you are not too far out from the diagnosis – you are not going to feel this way in 2 or 3 years.  Heck, I don't feel that way!   And I'm Stage 4 (been there for 12 years) and with lung, bone and soft tissue mets diagnosed over the years.

                                Best wishes,

                                Harry

                                JC
                                Participant

                                  Ya, sorry, I am a different anonymous that the in situ initial poster.  I'm the 0.3mm Breslow.  I thought though that even 0.3mm is not deep enough yet to have reached blood vessels and lymph ducts.  That is just the superficial papillary dermis at 0.3mm.

                                  Harry in Fair Oaks
                                  Participant

                                    There is very little chance that a 0.3 mm will go to the blood or lymph system – that's why the extremely good survival rates for a shallow lesion like that.  But of course a tiny fraction of such lesions do metastacize through the blood stream or lymph nodes.  That's why the survival rate is not 100%.  That said, please enjoy your life without worrying about this.  I know it is easier said than done if you are newly diagnosed.  But trust me – in a few years melanoma will be a distant thought for you.

                                    Best wishes,

                                    Harry

                                    JC
                                    Participant

                                      Are there any examples of people diagnosed with thin melanomas in their 20s or 30s that went on to live normal life expectancies into their 70s or 80s? 

                                      Harry in Fair Oaks
                                      Participant

                                        I'm sure there were, are and will be many thousands of long term survivors of thin melanomas.  You won't find any statistics – there was no statistical tracking of people for such long periods, approaching 50 years.  Perhaps there will be in the future.  Enjoy life for the next 50 years, and then look back at the statistics!

                                        Best wishes,

                                        Harry

                                        Harry in Fair Oaks
                                        Participant

                                          I'm sure there were, are and will be many thousands of long term survivors of thin melanomas.  You won't find any statistics – there was no statistical tracking of people for such long periods, approaching 50 years.  Perhaps there will be in the future.  Enjoy life for the next 50 years, and then look back at the statistics!

                                          Best wishes,

                                          Harry

                                          Harry in Fair Oaks
                                          Participant

                                            I'm sure there were, are and will be many thousands of long term survivors of thin melanomas.  You won't find any statistics – there was no statistical tracking of people for such long periods, approaching 50 years.  Perhaps there will be in the future.  Enjoy life for the next 50 years, and then look back at the statistics!

                                            Best wishes,

                                            Harry

                                            JC
                                            Participant

                                              Are there any examples of people diagnosed with thin melanomas in their 20s or 30s that went on to live normal life expectancies into their 70s or 80s? 

                                              JC
                                              Participant

                                                Are there any examples of people diagnosed with thin melanomas in their 20s or 30s that went on to live normal life expectancies into their 70s or 80s? 

                                                Harry in Fair Oaks
                                                Participant

                                                  There is very little chance that a 0.3 mm will go to the blood or lymph system – that's why the extremely good survival rates for a shallow lesion like that.  But of course a tiny fraction of such lesions do metastacize through the blood stream or lymph nodes.  That's why the survival rate is not 100%.  That said, please enjoy your life without worrying about this.  I know it is easier said than done if you are newly diagnosed.  But trust me – in a few years melanoma will be a distant thought for you.

                                                  Best wishes,

                                                  Harry

                                                  Harry in Fair Oaks
                                                  Participant

                                                    There is very little chance that a 0.3 mm will go to the blood or lymph system – that's why the extremely good survival rates for a shallow lesion like that.  But of course a tiny fraction of such lesions do metastacize through the blood stream or lymph nodes.  That's why the survival rate is not 100%.  That said, please enjoy your life without worrying about this.  I know it is easier said than done if you are newly diagnosed.  But trust me – in a few years melanoma will be a distant thought for you.

                                                    Best wishes,

                                                    Harry

                                                    natasha
                                                    Participant

                                                      My situation is very similiar to yours. Breslow 0.2 , severely atypical with no all characteristics of melanoma.

                                                      I am afraid of  reccurance as well.

                                                      Yesterday I was on the seaside with my friend first time after my diagnosys ,felt like disabled person who need to stay in shade when everyone relaxing on the sun.

                                                      But I was tld by my Doctors I have 99.9 % chanse to survive

                                                       

                                                      JC
                                                      Participant

                                                        Mine was definitely melanoma, nobody was on the fence at all between severely atypical or melanoma. . definitely melanoma, superficially invasive into papillary dermis. 

                                                        natasha
                                                        Participant

                                                          But you said melanoma was diagnosed only after second pathology ?

                                                          So first pathology was not sure in your case?

                                                          I think 0.3 is one of the best places to be then we talking about melanoma.

                                                          Not all cancers are dead sentence . My father was diagnosed at 35 years ago , early stage.He is alive and 65 now.

                                                          natasha
                                                          Participant

                                                            But you said melanoma was diagnosed only after second pathology ?

                                                            So first pathology was not sure in your case?

                                                            I think 0.3 is one of the best places to be then we talking about melanoma.

                                                            Not all cancers are dead sentence . My father was diagnosed at 35 years ago , early stage.He is alive and 65 now.

                                                            JC
                                                            Participant

                                                              No, the original initial poster on this thread was the one that had it diagnosed after 2nd path.  I'm a different person. Mine was diagnosed from the first path, no doubt.

                                                              JC
                                                              Participant

                                                                No, the original initial poster on this thread was the one that had it diagnosed after 2nd path.  I'm a different person. Mine was diagnosed from the first path, no doubt.

                                                                natasha
                                                                Participant

                                                                  Oh sorry ,it is difficult to understand sometimes who is who ,if anonymous. Why don't you want to create a profile ?Will be much easy to communicate.

                                                                  Even if yours was diagnosed as melanoma from 1st pathology ,0.3 Breslow is  very early stage ,as mine 0.2 as well.

                                                                  natasha
                                                                  Participant

                                                                    Oh sorry ,it is difficult to understand sometimes who is who ,if anonymous. Why don't you want to create a profile ?Will be much easy to communicate.

                                                                    Even if yours was diagnosed as melanoma from 1st pathology ,0.3 Breslow is  very early stage ,as mine 0.2 as well.

                                                                    natasha
                                                                    Participant

                                                                      Oh sorry ,it is difficult to understand sometimes who is who ,if anonymous. Why don't you want to create a profile ?Will be much easy to communicate.

                                                                      Even if yours was diagnosed as melanoma from 1st pathology ,0.3 Breslow is  very early stage ,as mine 0.2 as well.

                                                                      JC
                                                                      Participant

                                                                        No, the original initial poster on this thread was the one that had it diagnosed after 2nd path.  I'm a different person. Mine was diagnosed from the first path, no doubt.

                                                                        JC
                                                                        Participant

                                                                          Your father was diagnosed 35 years ago with early stage melanoma?

                                                                          JC
                                                                          Participant

                                                                            Your father was diagnosed 35 years ago with early stage melanoma?

                                                                            natasha
                                                                            Participant

                                                                              My father was diagnosed at age of 30 , he is 65 now. He has early tumor in anal . It was Soveit Union time and he lived where and all treatment he received was just surgery. They even did not explain him properly what it was , just cancer.He was thinking he will dye.

                                                                              We think now it was melanoma early stage.After diagnosys and surgery he had me in 1 year time πŸ™‚ He is still alive and healthy

                                                                              natasha
                                                                              Participant

                                                                                My father was diagnosed at age of 30 , he is 65 now. He has early tumor in anal . It was Soveit Union time and he lived where and all treatment he received was just surgery. They even did not explain him properly what it was , just cancer.He was thinking he will dye.

                                                                                We think now it was melanoma early stage.After diagnosys and surgery he had me in 1 year time πŸ™‚ He is still alive and healthy

                                                                                natasha
                                                                                Participant

                                                                                  My father was diagnosed at age of 30 , he is 65 now. He has early tumor in anal . It was Soveit Union time and he lived where and all treatment he received was just surgery. They even did not explain him properly what it was , just cancer.He was thinking he will dye.

                                                                                  We think now it was melanoma early stage.After diagnosys and surgery he had me in 1 year time πŸ™‚ He is still alive and healthy

                                                                                  JC
                                                                                  Participant

                                                                                    Your father was diagnosed 35 years ago with early stage melanoma?

                                                                                    natasha
                                                                                    Participant

                                                                                      But you said melanoma was diagnosed only after second pathology ?

                                                                                      So first pathology was not sure in your case?

                                                                                      I think 0.3 is one of the best places to be then we talking about melanoma.

                                                                                      Not all cancers are dead sentence . My father was diagnosed at 35 years ago , early stage.He is alive and 65 now.

                                                                                      JC
                                                                                      Participant

                                                                                        Mine was definitely melanoma, nobody was on the fence at all between severely atypical or melanoma. . definitely melanoma, superficially invasive into papillary dermis. 

                                                                                        JC
                                                                                        Participant

                                                                                          Mine was definitely melanoma, nobody was on the fence at all between severely atypical or melanoma. . definitely melanoma, superficially invasive into papillary dermis. 

                                                                                          natasha
                                                                                          Participant

                                                                                            My situation is very similiar to yours. Breslow 0.2 , severely atypical with no all characteristics of melanoma.

                                                                                            I am afraid of  reccurance as well.

                                                                                            Yesterday I was on the seaside with my friend first time after my diagnosys ,felt like disabled person who need to stay in shade when everyone relaxing on the sun.

                                                                                            But I was tld by my Doctors I have 99.9 % chanse to survive

                                                                                             

                                                                                            natasha
                                                                                            Participant

                                                                                              My situation is very similiar to yours. Breslow 0.2 , severely atypical with no all characteristics of melanoma.

                                                                                              I am afraid of  reccurance as well.

                                                                                              Yesterday I was on the seaside with my friend first time after my diagnosys ,felt like disabled person who need to stay in shade when everyone relaxing on the sun.

                                                                                              But I was tld by my Doctors I have 99.9 % chanse to survive

                                                                                               

                                                                                              JC
                                                                                              Participant

                                                                                                Ya, sorry, I am a different anonymous that the in situ initial poster.  I'm the 0.3mm Breslow.  I thought though that even 0.3mm is not deep enough yet to have reached blood vessels and lymph ducts.  That is just the superficial papillary dermis at 0.3mm.

                                                                                                JC
                                                                                                Participant

                                                                                                  Ya, sorry, I am a different anonymous that the in situ initial poster.  I'm the 0.3mm Breslow.  I thought though that even 0.3mm is not deep enough yet to have reached blood vessels and lymph ducts.  That is just the superficial papillary dermis at 0.3mm.

                                                                                                  Cindy33
                                                                                                  Participant

                                                                                                    Harry,

                                                                                                    God bless you for responding! You give me hope!

                                                                                                    Cindy

                                                                                                    Cindy33
                                                                                                    Participant

                                                                                                      Harry,

                                                                                                      God bless you for responding! You give me hope!

                                                                                                      Cindy

                                                                                                      Cindy33
                                                                                                      Participant

                                                                                                        Harry,

                                                                                                        God bless you for responding! You give me hope!

                                                                                                        Cindy

                                                                                                        Harry in Fair Oaks
                                                                                                        Participant

                                                                                                          I don't know if you're the "Anonymous" who wrote the original post – a problem with posting on this BB is that there can be any number of different "Anonymouses" on a given thread, so it gets confusing.  Anyhow, the original poster said it was confined to the topmost layer of the skin (i.e. the epidermis).  That is in situ.  There are no blood vessels or lymph ducts in the epidermis, so the MM can't spread.

                                                                                                          Obviously a 0.3 mm is a different issue, but we are still talking about a very small chance of recurrance (I don't know the current statistics, but I'm sure the survival rate is in the high 90s percentage wise).  Logically, there is no reason to feel like "a walking cancer time bomb."  I would bet that you are not too far out from the diagnosis – you are not going to feel this way in 2 or 3 years.  Heck, I don't feel that way!   And I'm Stage 4 (been there for 12 years) and with lung, bone and soft tissue mets diagnosed over the years.

                                                                                                          Best wishes,

                                                                                                          Harry

                                                                                                          Harry in Fair Oaks
                                                                                                          Participant

                                                                                                            I don't know if you're the "Anonymous" who wrote the original post – a problem with posting on this BB is that there can be any number of different "Anonymouses" on a given thread, so it gets confusing.  Anyhow, the original poster said it was confined to the topmost layer of the skin (i.e. the epidermis).  That is in situ.  There are no blood vessels or lymph ducts in the epidermis, so the MM can't spread.

                                                                                                            Obviously a 0.3 mm is a different issue, but we are still talking about a very small chance of recurrance (I don't know the current statistics, but I'm sure the survival rate is in the high 90s percentage wise).  Logically, there is no reason to feel like "a walking cancer time bomb."  I would bet that you are not too far out from the diagnosis – you are not going to feel this way in 2 or 3 years.  Heck, I don't feel that way!   And I'm Stage 4 (been there for 12 years) and with lung, bone and soft tissue mets diagnosed over the years.

                                                                                                            Best wishes,

                                                                                                            Harry

                                                                                                            JC
                                                                                                            Participant

                                                                                                              I wish I could think about mine that way. . consider it a warning shot and get on with my life.  Were it in situ, maybe it would be easier.  But mine was early superficially invasive.  So, I feel like a walking cancer ticking time bomb that is going to go off in however many years.  I know it was thin, 0.3mm, but still not in situ.  I know others on this forum would find that enviable, as I find in situ enviable.  But, people can't say "you got it in time" or "it will not spread" like they can say with in situ. 

                                                                                                              JC
                                                                                                              Participant

                                                                                                                I wish I could think about mine that way. . consider it a warning shot and get on with my life.  Were it in situ, maybe it would be easier.  But mine was early superficially invasive.  So, I feel like a walking cancer ticking time bomb that is going to go off in however many years.  I know it was thin, 0.3mm, but still not in situ.  I know others on this forum would find that enviable, as I find in situ enviable.  But, people can't say "you got it in time" or "it will not spread" like they can say with in situ. 

                                                                                                              PlantLady
                                                                                                              Participant

                                                                                                                If you have melanoma in situ, you may be fine.  Most are, statistically speaking.  My husband had one In Situ mole removed in 2008, and in 2010 was diagnosed w/ metastatic melanoma of the lung, bone, lymph, and adrenal.  He had a family doctor who said, and I quote, "melanoma is funny stuff.  I'm going to order a lung x-ray every year for you"   So, from 2008 on, he did.  Come 2010….Sure enough.  The lung was riddled with it before he had any symptoms at all.  It is definitely not protocol to check after an In Situ removal, he just had a paranoid doctor.  The odds were 99% against having any further problem.  He was just unlucky, as it is rare.

                                                                                                                It never hurts to get second opinions.  Getting to it early is the best way to go, in any case.

                                                                                                                 Good luck.

                                                                                                                  JC
                                                                                                                  Participant

                                                                                                                    Your husband's metastatic melanoma was from the initial in situ?  Or, from a different other primary?

                                                                                                                    PlantLady
                                                                                                                    Participant

                                                                                                                       That One Mole.  Melanoma In Situ with clean margins, found on his temple was all there was to it., that was in 2006 or 2007, I forget.  No other primary.  No lesions on the skin anywhere to this date. 

                                                                                                                      We lived our lives knowing that In Situ was nothing to worry about, until the 2011 xray showed mets on the lung, and subsequent PET, MRI, and CT scans showed it in the lungs, adrenal, and bone.

                                                                                                                      It is "rare".  I wonder if "rare" is becoming the norm, as I see more and more children who've grown up covered in sunscreen getting it.  Babies getting it.  Asians getting it (rare in their skin type).  What is going on w/our world.  I digress.

                                                                                                                       

                                                                                                                      Note: I think I had the dates wrong on the diagnosis in my previous post.  He was diagnosed metastatic stage IV when the mets were found in April 2011.  It has been a year now, living in Melanomaville and in treatment, and it was around 5 years after the removal of the In Situ melanoma that the metastases were found.

                                                                                                                      We really lived a lot in those years between the "in situ" and the Stage IV discovery.  This past year we have been in constant treatment, Ipi, and LGK phase I trial, (washed out of both) and now yet another Phase I chemo combo.

                                                                                                                      Moral is….  Keep getting checked.  Keep getting the exams and tests and diagnostics, get other opinions, but for pete's sake, live your life.  You are feeling good enough to do stuff, so do stuff!!!!!

                                                                                                                      On bad days, when you can't help but have your mind wander into scary territory, put on old videos of episodes of "Friends" or whatever makes you laugh (or get distracted).  We've never watched as much "escapist" TV in our lives as we have since the diagnosis, but it does take the mind off things.

                                                                                                                      PlantLady
                                                                                                                      Participant

                                                                                                                         That One Mole.  Melanoma In Situ with clean margins, found on his temple was all there was to it., that was in 2006 or 2007, I forget.  No other primary.  No lesions on the skin anywhere to this date. 

                                                                                                                        We lived our lives knowing that In Situ was nothing to worry about, until the 2011 xray showed mets on the lung, and subsequent PET, MRI, and CT scans showed it in the lungs, adrenal, and bone.

                                                                                                                        It is "rare".  I wonder if "rare" is becoming the norm, as I see more and more children who've grown up covered in sunscreen getting it.  Babies getting it.  Asians getting it (rare in their skin type).  What is going on w/our world.  I digress.

                                                                                                                         

                                                                                                                        Note: I think I had the dates wrong on the diagnosis in my previous post.  He was diagnosed metastatic stage IV when the mets were found in April 2011.  It has been a year now, living in Melanomaville and in treatment, and it was around 5 years after the removal of the In Situ melanoma that the metastases were found.

                                                                                                                        We really lived a lot in those years between the "in situ" and the Stage IV discovery.  This past year we have been in constant treatment, Ipi, and LGK phase I trial, (washed out of both) and now yet another Phase I chemo combo.

                                                                                                                        Moral is….  Keep getting checked.  Keep getting the exams and tests and diagnostics, get other opinions, but for pete's sake, live your life.  You are feeling good enough to do stuff, so do stuff!!!!!

                                                                                                                        On bad days, when you can't help but have your mind wander into scary territory, put on old videos of episodes of "Friends" or whatever makes you laugh (or get distracted).  We've never watched as much "escapist" TV in our lives as we have since the diagnosis, but it does take the mind off things.

                                                                                                                        JC
                                                                                                                        Participant

                                                                                                                          Wow.  And, that initial in situ did not show extensive regression?  Or, it's not possible it was an incorrect pathology and it was more than in situe initially?  Only reason I am surprised is I've always ready about in situ being 100% curable.  So, it's scary to know otherwise.

                                                                                                                          JC
                                                                                                                          Participant

                                                                                                                            Wow.  And, that initial in situ did not show extensive regression?  Or, it's not possible it was an incorrect pathology and it was more than in situe initially?  Only reason I am surprised is I've always ready about in situ being 100% curable.  So, it's scary to know otherwise.

                                                                                                                            PlantLady
                                                                                                                            Participant

                                                                                                                              Yes, of course it was rechecked.  The University of Michigan is pretty good at pathology.

                                                                                                                              PlantLady
                                                                                                                              Participant

                                                                                                                                Yes, of course it was rechecked.  The University of Michigan is pretty good at pathology.

                                                                                                                                PlantLady
                                                                                                                                Participant

                                                                                                                                  Yes, of course it was rechecked.  The University of Michigan is pretty good at pathology.

                                                                                                                                  JC
                                                                                                                                  Participant

                                                                                                                                    Wow.  And, that initial in situ did not show extensive regression?  Or, it's not possible it was an incorrect pathology and it was more than in situe initially?  Only reason I am surprised is I've always ready about in situ being 100% curable.  So, it's scary to know otherwise.

                                                                                                                                    natasha
                                                                                                                                    Participant

                                                                                                                                      Dear PlantLady !

                                                                                                                                      It is so upsetting to read your story .I am sorry .

                                                                                                                                      But I think deep down it is high possability of incorrect pathology .Did you have second opinion?

                                                                                                                                      But ,from another side , it is difficult for expierensed pathologist to mistake in situ and thick tumor which can metastaze.

                                                                                                                                      natasha
                                                                                                                                      Participant

                                                                                                                                        Dear PlantLady !

                                                                                                                                        It is so upsetting to read your story .I am sorry .

                                                                                                                                        But I think deep down it is high possability of incorrect pathology .Did you have second opinion?

                                                                                                                                        But ,from another side , it is difficult for expierensed pathologist to mistake in situ and thick tumor which can metastaze.

                                                                                                                                        PlantLady
                                                                                                                                        Participant

                                                                                                                                          Pathology was in situ, stage 0, clear margins, the whole 9 yards of good results.  The slides were re-examined by University of Michigan.  First path was done at Bronson Hospital in Kalamazoo. 

                                                                                                                                          It doesn't matter now, does it?  Past is gone.  Sometimes things that "shouldn't be" , Are.

                                                                                                                                          IF we'd known the eventual outcome, we would never have taken 2 long trips to Europe, living in apartments, shopping with locals.  We would have spent years consumed with the anxiety that envelops us now. 

                                                                                                                                          Sometimes things just happen.  Ron accepts that he is a freak of nature.  A Oner.  And he'll fight the good fight.

                                                                                                                                          PlantLady
                                                                                                                                          Participant

                                                                                                                                            Pathology was in situ, stage 0, clear margins, the whole 9 yards of good results.  The slides were re-examined by University of Michigan.  First path was done at Bronson Hospital in Kalamazoo. 

                                                                                                                                            It doesn't matter now, does it?  Past is gone.  Sometimes things that "shouldn't be" , Are.

                                                                                                                                            IF we'd known the eventual outcome, we would never have taken 2 long trips to Europe, living in apartments, shopping with locals.  We would have spent years consumed with the anxiety that envelops us now. 

                                                                                                                                            Sometimes things just happen.  Ron accepts that he is a freak of nature.  A Oner.  And he'll fight the good fight.

                                                                                                                                            PlantLady
                                                                                                                                            Participant

                                                                                                                                              Pathology was in situ, stage 0, clear margins, the whole 9 yards of good results.  The slides were re-examined by University of Michigan.  First path was done at Bronson Hospital in Kalamazoo. 

                                                                                                                                              It doesn't matter now, does it?  Past is gone.  Sometimes things that "shouldn't be" , Are.

                                                                                                                                              IF we'd known the eventual outcome, we would never have taken 2 long trips to Europe, living in apartments, shopping with locals.  We would have spent years consumed with the anxiety that envelops us now. 

                                                                                                                                              Sometimes things just happen.  Ron accepts that he is a freak of nature.  A Oner.  And he'll fight the good fight.

                                                                                                                                              natasha
                                                                                                                                              Participant

                                                                                                                                                Dear PlantLady !

                                                                                                                                                It is so upsetting to read your story .I am sorry .

                                                                                                                                                But I think deep down it is high possability of incorrect pathology .Did you have second opinion?

                                                                                                                                                But ,from another side , it is difficult for expierensed pathologist to mistake in situ and thick tumor which can metastaze.

                                                                                                                                                PlantLady
                                                                                                                                                Participant

                                                                                                                                                   That One Mole.  Melanoma In Situ with clean margins, found on his temple was all there was to it., that was in 2006 or 2007, I forget.  No other primary.  No lesions on the skin anywhere to this date. 

                                                                                                                                                  We lived our lives knowing that In Situ was nothing to worry about, until the 2011 xray showed mets on the lung, and subsequent PET, MRI, and CT scans showed it in the lungs, adrenal, and bone.

                                                                                                                                                  It is "rare".  I wonder if "rare" is becoming the norm, as I see more and more children who've grown up covered in sunscreen getting it.  Babies getting it.  Asians getting it (rare in their skin type).  What is going on w/our world.  I digress.

                                                                                                                                                   

                                                                                                                                                  Note: I think I had the dates wrong on the diagnosis in my previous post.  He was diagnosed metastatic stage IV when the mets were found in April 2011.  It has been a year now, living in Melanomaville and in treatment, and it was around 5 years after the removal of the In Situ melanoma that the metastases were found.

                                                                                                                                                  We really lived a lot in those years between the "in situ" and the Stage IV discovery.  This past year we have been in constant treatment, Ipi, and LGK phase I trial, (washed out of both) and now yet another Phase I chemo combo.

                                                                                                                                                  Moral is….  Keep getting checked.  Keep getting the exams and tests and diagnostics, get other opinions, but for pete's sake, live your life.  You are feeling good enough to do stuff, so do stuff!!!!!

                                                                                                                                                  On bad days, when you can't help but have your mind wander into scary territory, put on old videos of episodes of "Friends" or whatever makes you laugh (or get distracted).  We've never watched as much "escapist" TV in our lives as we have since the diagnosis, but it does take the mind off things.

                                                                                                                                                  JC
                                                                                                                                                  Participant

                                                                                                                                                    Your husband's metastatic melanoma was from the initial in situ?  Or, from a different other primary?

                                                                                                                                                    JC
                                                                                                                                                    Participant

                                                                                                                                                      Your husband's metastatic melanoma was from the initial in situ?  Or, from a different other primary?

                                                                                                                                                    PlantLady
                                                                                                                                                    Participant

                                                                                                                                                      If you have melanoma in situ, you may be fine.  Most are, statistically speaking.  My husband had one In Situ mole removed in 2008, and in 2010 was diagnosed w/ metastatic melanoma of the lung, bone, lymph, and adrenal.  He had a family doctor who said, and I quote, "melanoma is funny stuff.  I'm going to order a lung x-ray every year for you"   So, from 2008 on, he did.  Come 2010….Sure enough.  The lung was riddled with it before he had any symptoms at all.  It is definitely not protocol to check after an In Situ removal, he just had a paranoid doctor.  The odds were 99% against having any further problem.  He was just unlucky, as it is rare.

                                                                                                                                                      It never hurts to get second opinions.  Getting to it early is the best way to go, in any case.

                                                                                                                                                       Good luck.

                                                                                                                                                      PlantLady
                                                                                                                                                      Participant

                                                                                                                                                        If you have melanoma in situ, you may be fine.  Most are, statistically speaking.  My husband had one In Situ mole removed in 2008, and in 2010 was diagnosed w/ metastatic melanoma of the lung, bone, lymph, and adrenal.  He had a family doctor who said, and I quote, "melanoma is funny stuff.  I'm going to order a lung x-ray every year for you"   So, from 2008 on, he did.  Come 2010….Sure enough.  The lung was riddled with it before he had any symptoms at all.  It is definitely not protocol to check after an In Situ removal, he just had a paranoid doctor.  The odds were 99% against having any further problem.  He was just unlucky, as it is rare.

                                                                                                                                                        It never hurts to get second opinions.  Getting to it early is the best way to go, in any case.

                                                                                                                                                         Good luck.

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