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Article on 20-year survival for people with thin (1mm or less) mels 96% – 2012, from Queensland/Australia

Forums Cutaneous Melanoma Community Article on 20-year survival for people with thin (1mm or less) mels 96% – 2012, from Queensland/Australia

  • Post
    stars
    Participant

      Hi

      Just a shout out to fellow thin-mellers (well, I'm not thin, but I've had three thin mels).

      This is a 2012 study from my home state, Queensland aka skin cancer capital of universe.

      http://espace.library.uq.edu.au/view/UQ:275517

      It shows 20-year survival for people with thin mels to be 96%.

      Three things I like about this study:

      – I like survival stat % beginning with '90'

      – I like survival span of 20 (vs 5 or 10 years) – for me this translates into seeing my young kids into adulthood, not teenagerhood)

      – I like that it's from 2012 and surely, if anything, things have gotten better since then with all the new therapies.

      Hope some other MRFers get some solace from this (reasonably) good-news study.

      Stars

       

    Viewing 5 reply threads
    • Replies
        Mat
        Participant

          Since we're still working with a combined forum here, I'll note as a 4-percenter that you should remain vigilant over the rest of your life.  I had a .5mm thin melanoma removed from my right shoulder in May 2003.  I went to all of the onc appointments, etc. for 10 years and progressed to Stage 4.  What was my first symptom?  Left arm pain in January 2013.  Did I put it together?  No, I did not.  I was told–and believed–that it was statistically impossible for me to progress.  (Is my story typical?  No, it is not.)

            JC
            Participant

              yes, be vigilant, but not scared nor paranoid, and believe that you're in the 96% since you probably are

              JC
              Participant

                yes, be vigilant, but not scared nor paranoid, and believe that you're in the 96% since you probably are

                JC
                Participant

                  yes, be vigilant, but not scared nor paranoid, and believe that you're in the 96% since you probably are

                  stars
                  Participant

                    Absolutely, Mat. Lifelong vigilance is a given now, especially after three primaries. There is a very well-known advocate of melanoma reseach here in Oz with a similar story to yours, except her stage 1 progressed to stage 4 within months not years. She says the same as you – her story is not typical, but there is still the 4%.

                    JC
                    Participant

                      I would also suspect that of the "thin" melanomas that progress, some had the initial pathology read wrong

                      becky15
                      Participant

                        Mat, may I just ask why you were going to oncology appointments for 10 years with such a thin melanoma?

                        Here in the UK, you would never get to see an oncologist with a stage 1 melanoma less than 1mm and you would only get follow up with a dermatologist for a year before then being discharged if stage 1a or three years if 1b.  These are the national guidelines.

                        Mat
                        Participant

                          I had a good dermatologist and a good oncologist (who was also a melanoma specialist).  I also had good health insurance and was vigilant, particularly in the early years.  Unfortunately, I was also quite unlucky.  So, the overall point is take comfort in the statistics, but pay close attention to your body.  If I would've had my left arm x-rayed in January 2013, then folks would've been able to diagnose my bone tumor and Stage 4 melanoma much earlier (versus July 2013 with a heavy tumor burden).  Presumably I would've had additional treatment options (versus moving right to BRAF-MEK).  I'm not living in the past here; just letting you know that reasonably vigilant and intelligent people end-up in the 4 percent.

                          Mat
                          Participant

                            I had a good dermatologist and a good oncologist (who was also a melanoma specialist).  I also had good health insurance and was vigilant, particularly in the early years.  Unfortunately, I was also quite unlucky.  So, the overall point is take comfort in the statistics, but pay close attention to your body.  If I would've had my left arm x-rayed in January 2013, then folks would've been able to diagnose my bone tumor and Stage 4 melanoma much earlier (versus July 2013 with a heavy tumor burden).  Presumably I would've had additional treatment options (versus moving right to BRAF-MEK).  I'm not living in the past here; just letting you know that reasonably vigilant and intelligent people end-up in the 4 percent.

                            JC
                            Participant

                               

                               

                              probably will read more about the 4% on MPIP than the 96% who aren't posting on the board anymore, so it might seem skewed what you read here, it would seem like everybody progresses

                              JC
                              Participant

                                 

                                 

                                probably will read more about the 4% on MPIP than the 96% who aren't posting on the board anymore, so it might seem skewed what you read here, it would seem like everybody progresses

                                jpg
                                Participant

                                  Mat,

                                   It might be interesting to get those orginal slides read again by another expert.

                                  jpg
                                  Participant

                                    Mat,

                                     It might be interesting to get those orginal slides read again by another expert.

                                    Mat
                                    Participant

                                      Not that interesting.  I had a wide excision and sentinel lymphoma node testing done within a week or two–all clear.  I'm not going to respond to further posts on this thread (been there, done that).  I've given you the information in an attempt to be helpful.  Do what you want with it.  Good luck.

                                      Mat
                                      Participant

                                        Not that interesting.  I had a wide excision and sentinel lymphoma node testing done within a week or two–all clear.  I'm not going to respond to further posts on this thread (been there, done that).  I've given you the information in an attempt to be helpful.  Do what you want with it.  Good luck.

                                        Mat
                                        Participant

                                          Not that interesting.  I had a wide excision and sentinel lymphoma node testing done within a week or two–all clear.  I'm not going to respond to further posts on this thread (been there, done that).  I've given you the information in an attempt to be helpful.  Do what you want with it.  Good luck.

                                          jpg
                                          Participant

                                            Mat,

                                             It might be interesting to get those orginal slides read again by another expert.

                                            JC
                                            Participant

                                               

                                               

                                              probably will read more about the 4% on MPIP than the 96% who aren't posting on the board anymore, so it might seem skewed what you read here, it would seem like everybody progresses

                                              Mkelley1
                                              Participant

                                                Mat-  in terms of melanoma pathology mine is similar to yours.6 mm/ 2 mitosis excised from my back 6 months ago.   My question for u is about your progression.  So u were perfectly fine for 10 years and then it suddenly returned?  Did u even think about Mel after your initial diagnosis?  As the years went by fic u assume it was gone?  I can't imagine what u are going through at this time but my thought are with u.  They say when Mel recurs after a long time u have a great chance of beating it and I'm sure u will!  Godspeed my friend- Mark

                                                Mkelley1
                                                Participant

                                                  Mat-  in terms of melanoma pathology mine is similar to yours.6 mm/ 2 mitosis excised from my back 6 months ago.   My question for u is about your progression.  So u were perfectly fine for 10 years and then it suddenly returned?  Did u even think about Mel after your initial diagnosis?  As the years went by fic u assume it was gone?  I can't imagine what u are going through at this time but my thought are with u.  They say when Mel recurs after a long time u have a great chance of beating it and I'm sure u will!  Godspeed my friend- Mark

                                                  Mkelley1
                                                  Participant

                                                    Mat-  in terms of melanoma pathology mine is similar to yours.6 mm/ 2 mitosis excised from my back 6 months ago.   My question for u is about your progression.  So u were perfectly fine for 10 years and then it suddenly returned?  Did u even think about Mel after your initial diagnosis?  As the years went by fic u assume it was gone?  I can't imagine what u are going through at this time but my thought are with u.  They say when Mel recurs after a long time u have a great chance of beating it and I'm sure u will!  Godspeed my friend- Mark

                                                    Mat
                                                    Participant

                                                      I had a good dermatologist and a good oncologist (who was also a melanoma specialist).  I also had good health insurance and was vigilant, particularly in the early years.  Unfortunately, I was also quite unlucky.  So, the overall point is take comfort in the statistics, but pay close attention to your body.  If I would've had my left arm x-rayed in January 2013, then folks would've been able to diagnose my bone tumor and Stage 4 melanoma much earlier (versus July 2013 with a heavy tumor burden).  Presumably I would've had additional treatment options (versus moving right to BRAF-MEK).  I'm not living in the past here; just letting you know that reasonably vigilant and intelligent people end-up in the 4 percent.

                                                      JC
                                                      Participant

                                                        not to mention a SLNB for such a thin melanoma. . .surprised insurance would cover that

                                                        JC
                                                        Participant

                                                          not to mention a SLNB for such a thin melanoma. . .surprised insurance would cover that

                                                          JC
                                                          Participant

                                                            not to mention a SLNB for such a thin melanoma. . .surprised insurance would cover that

                                                            becky15
                                                            Participant

                                                              Mat, may I just ask why you were going to oncology appointments for 10 years with such a thin melanoma?

                                                              Here in the UK, you would never get to see an oncologist with a stage 1 melanoma less than 1mm and you would only get follow up with a dermatologist for a year before then being discharged if stage 1a or three years if 1b.  These are the national guidelines.

                                                              becky15
                                                              Participant

                                                                Mat, may I just ask why you were going to oncology appointments for 10 years with such a thin melanoma?

                                                                Here in the UK, you would never get to see an oncologist with a stage 1 melanoma less than 1mm and you would only get follow up with a dermatologist for a year before then being discharged if stage 1a or three years if 1b.  These are the national guidelines.

                                                                JC
                                                                Participant

                                                                  I would also suspect that of the "thin" melanomas that progress, some had the initial pathology read wrong

                                                                  JC
                                                                  Participant

                                                                    I would also suspect that of the "thin" melanomas that progress, some had the initial pathology read wrong

                                                                    stars
                                                                    Participant

                                                                      Absolutely, Mat. Lifelong vigilance is a given now, especially after three primaries. There is a very well-known advocate of melanoma reseach here in Oz with a similar story to yours, except her stage 1 progressed to stage 4 within months not years. She says the same as you – her story is not typical, but there is still the 4%.

                                                                      stars
                                                                      Participant

                                                                        Absolutely, Mat. Lifelong vigilance is a given now, especially after three primaries. There is a very well-known advocate of melanoma reseach here in Oz with a similar story to yours, except her stage 1 progressed to stage 4 within months not years. She says the same as you – her story is not typical, but there is still the 4%.

                                                                      Mat
                                                                      Participant

                                                                        Since we're still working with a combined forum here, I'll note as a 4-percenter that you should remain vigilant over the rest of your life.  I had a .5mm thin melanoma removed from my right shoulder in May 2003.  I went to all of the onc appointments, etc. for 10 years and progressed to Stage 4.  What was my first symptom?  Left arm pain in January 2013.  Did I put it together?  No, I did not.  I was told–and believed–that it was statistically impossible for me to progress.  (Is my story typical?  No, it is not.)

                                                                        Mat
                                                                        Participant

                                                                          Since we're still working with a combined forum here, I'll note as a 4-percenter that you should remain vigilant over the rest of your life.  I had a .5mm thin melanoma removed from my right shoulder in May 2003.  I went to all of the onc appointments, etc. for 10 years and progressed to Stage 4.  What was my first symptom?  Left arm pain in January 2013.  Did I put it together?  No, I did not.  I was told–and believed–that it was statistically impossible for me to progress.  (Is my story typical?  No, it is not.)

                                                                          Bubbles
                                                                          Participant

                                                                            Like Mat, I am a 4%'er.  In 2003 my original lesion measured 0.6mm.  On sentinel node biopsy I had a positive node.  My biopsy was read by 3 different local folks and Dr. Mimms from Harvard.  The consensus was clear.  This is not to frighten anyone.  But, anon, who thinks our biopsies were "read wrong"….think again.  It may be best not to ask questions you don't want to know the answer to.  For those of you who do want an answer as to what the data shows….here is a post addressing 2013 and 2014 research on that very topic:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/with-melanoma-you-can-never-be-too-rich.html

                                                                            Additionally, while the absolute benefit is not entirely clear and the topic controversial among patients and researchers alike…many consider complete lymphadenectomy of the nodal basin critical to improved outcomes.  So…yes, insurance covered mine…TWICE.

                                                                            On the flip side…and more germain to the thread here…..while my history and progression to Stage IV is what it is….I'm still here…12 plus years since my original diagnosis.  Wishing you all my best.  Celeste

                                                                              JC
                                                                              Participant

                                                                                maybe i'm confused but i thought the "4%'ers" were people who were truly Stage I at diagnosis who then later progressed, whereas if your sentinel node biopsy was positive then you would have been Stage III, not Stage I.  am i missing something?

                                                                                Bubbles
                                                                                Participant

                                                                                  The point, in this case is:  If I hadn't had the sentinel lymph node biopsy because my 0.6mm primary lesion was so thin and therefore I "didn't need it" ….I would not have learned – for some amount of time (I fear it wouldn't have been that long)…that I was Stage III rather than Stage I, now would I?!!!  However, getting the positive node out….I feel….gave me 3 years before I developed another thin "second primary"…(Upon sentinel node evaluation there…I had no positive nodes in that basin)…and another 3 years before becoming a Stage IV melanoma patient with brain and lung mets.  My question, for those against sentinel node biopsy for thin lesions is this:  How do you KNOW that you are only Stage 1 if you don't check your nodes?  Truth be told, for me in 2003, it did not help me by way of treatment, since at that time the only treatment available for melanoma was interferon or IL2.  However, today….the array of effective treatments for patients with metastasis to nodes is very different.  Knowing that I had melanoma cells to a node, vs ONLY a thin melanoma lesion that had been removed, would certainly change the treatment I would pursue!  Yet, even for me…back in the day….I am convinced that getting what melanoma cells I could OUT of my body, rather than letting them sit there and do their thing…gave me time.  Cherry picking (ie surgical removal of mets) is still considered a very effective first step in melanoma treatment!  Just my thoughts and circumstance.  Wishing you all my best.  C

                                                                                  Bubbles
                                                                                  Participant

                                                                                    The point, in this case is:  If I hadn't had the sentinel lymph node biopsy because my 0.6mm primary lesion was so thin and therefore I "didn't need it" ….I would not have learned – for some amount of time (I fear it wouldn't have been that long)…that I was Stage III rather than Stage I, now would I?!!!  However, getting the positive node out….I feel….gave me 3 years before I developed another thin "second primary"…(Upon sentinel node evaluation there…I had no positive nodes in that basin)…and another 3 years before becoming a Stage IV melanoma patient with brain and lung mets.  My question, for those against sentinel node biopsy for thin lesions is this:  How do you KNOW that you are only Stage 1 if you don't check your nodes?  Truth be told, for me in 2003, it did not help me by way of treatment, since at that time the only treatment available for melanoma was interferon or IL2.  However, today….the array of effective treatments for patients with metastasis to nodes is very different.  Knowing that I had melanoma cells to a node, vs ONLY a thin melanoma lesion that had been removed, would certainly change the treatment I would pursue!  Yet, even for me…back in the day….I am convinced that getting what melanoma cells I could OUT of my body, rather than letting them sit there and do their thing…gave me time.  Cherry picking (ie surgical removal of mets) is still considered a very effective first step in melanoma treatment!  Just my thoughts and circumstance.  Wishing you all my best.  C

                                                                                    Bubbles
                                                                                    Participant

                                                                                      The point, in this case is:  If I hadn't had the sentinel lymph node biopsy because my 0.6mm primary lesion was so thin and therefore I "didn't need it" ….I would not have learned – for some amount of time (I fear it wouldn't have been that long)…that I was Stage III rather than Stage I, now would I?!!!  However, getting the positive node out….I feel….gave me 3 years before I developed another thin "second primary"…(Upon sentinel node evaluation there…I had no positive nodes in that basin)…and another 3 years before becoming a Stage IV melanoma patient with brain and lung mets.  My question, for those against sentinel node biopsy for thin lesions is this:  How do you KNOW that you are only Stage 1 if you don't check your nodes?  Truth be told, for me in 2003, it did not help me by way of treatment, since at that time the only treatment available for melanoma was interferon or IL2.  However, today….the array of effective treatments for patients with metastasis to nodes is very different.  Knowing that I had melanoma cells to a node, vs ONLY a thin melanoma lesion that had been removed, would certainly change the treatment I would pursue!  Yet, even for me…back in the day….I am convinced that getting what melanoma cells I could OUT of my body, rather than letting them sit there and do their thing…gave me time.  Cherry picking (ie surgical removal of mets) is still considered a very effective first step in melanoma treatment!  Just my thoughts and circumstance.  Wishing you all my best.  C

                                                                                      JC
                                                                                      Participant

                                                                                        maybe i'm confused but i thought the "4%'ers" were people who were truly Stage I at diagnosis who then later progressed, whereas if your sentinel node biopsy was positive then you would have been Stage III, not Stage I.  am i missing something?

                                                                                        JC
                                                                                        Participant

                                                                                          maybe i'm confused but i thought the "4%'ers" were people who were truly Stage I at diagnosis who then later progressed, whereas if your sentinel node biopsy was positive then you would have been Stage III, not Stage I.  am i missing something?

                                                                                        Bubbles
                                                                                        Participant

                                                                                          Like Mat, I am a 4%'er.  In 2003 my original lesion measured 0.6mm.  On sentinel node biopsy I had a positive node.  My biopsy was read by 3 different local folks and Dr. Mimms from Harvard.  The consensus was clear.  This is not to frighten anyone.  But, anon, who thinks our biopsies were "read wrong"….think again.  It may be best not to ask questions you don't want to know the answer to.  For those of you who do want an answer as to what the data shows….here is a post addressing 2013 and 2014 research on that very topic:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/with-melanoma-you-can-never-be-too-rich.html

                                                                                          Additionally, while the absolute benefit is not entirely clear and the topic controversial among patients and researchers alike…many consider complete lymphadenectomy of the nodal basin critical to improved outcomes.  So…yes, insurance covered mine…TWICE.

                                                                                          On the flip side…and more germain to the thread here…..while my history and progression to Stage IV is what it is….I'm still here…12 plus years since my original diagnosis.  Wishing you all my best.  Celeste

                                                                                          Bubbles
                                                                                          Participant

                                                                                            Like Mat, I am a 4%'er.  In 2003 my original lesion measured 0.6mm.  On sentinel node biopsy I had a positive node.  My biopsy was read by 3 different local folks and Dr. Mimms from Harvard.  The consensus was clear.  This is not to frighten anyone.  But, anon, who thinks our biopsies were "read wrong"….think again.  It may be best not to ask questions you don't want to know the answer to.  For those of you who do want an answer as to what the data shows….here is a post addressing 2013 and 2014 research on that very topic:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/with-melanoma-you-can-never-be-too-rich.html

                                                                                            Additionally, while the absolute benefit is not entirely clear and the topic controversial among patients and researchers alike…many consider complete lymphadenectomy of the nodal basin critical to improved outcomes.  So…yes, insurance covered mine…TWICE.

                                                                                            On the flip side…and more germain to the thread here…..while my history and progression to Stage IV is what it is….I'm still here…12 plus years since my original diagnosis.  Wishing you all my best.  Celeste

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