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Back on My Feet & Looking for Informed Advice

Forums General Melanoma Community Back on My Feet & Looking for Informed Advice

  • Post
    2atlascedars
    Participant
    I am finally back on my feet after a three-month ordeal that began with an October 26th diagnosis of MM on the sole of my foot. I just stopped needing to use crutches this week, after having been in a wheelchair for 6 weeks following my WLE on November 19th. I had to have a full-thickness skin graft to reconstruct the WLE site, which required nearly 3 weeks in a hospital and surgical rehab center, followed by countless hours of wound care and physical therapy by home health care providers. Also, I could not drive or work until January 3rd, when I was first permitted to use crutches.

    I was VERY fortunate to have my SNB results come back negative, particularly since my MM was 3.7 mm deep. I have read so many post of yours on this site which indicate much shallowed depths of MM that had spread to the lymph or cirulatory systems. Since I had no ulceration, I believe I am stage 2A. I will have my first of many 3-month follow-ups with my Melanoma Specialist in February. I was wondering if anyone can offer their advice on what questions I should ask and what tests I should insist to be performed to ensure that I am, and continue to remain, NED.

    I feel as though I should know as much about my primary melanoma as possible, such as the genetic profile, so I can stay abreast of the continued advances in targeted treatments. I know I am not truely cured yet, and want to be as prepared as humanly possible to quickly send my melanoma back to the HOLY F—-ING HELL that it came from…if it should come back.

    Also, I have heard that 8% of patients who had local-only disease go on to have a recurrance (spreading) of their original primary…is this correct? Are there any stats that break this down to more specific stages? (References are greatly appreciated).

    Thanks for your help fellow MM Warriors!

    Best regard,
    Mark from California

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      Janner
      Participant

      I can't help you with all your questions, however I think you might have misunderstood something.  I believe you might be mistaking the 8% recurrence rate for an 8% chance of having a second primary melanoma.   A second primary is a new melanoma which is totally unrelated to any existing melanoma.  A different mole gone rogue.  About 8% of the melanoma population  have a second primary.  2nd primaries only change staging if they are "worse" than the original diagnosis.

      The risk of a recurrence is probably a little higher.  The rate depends on your stage.  Most "statistics" list a survival rates, however, not the recurrence rates.  Having a recurrence is not a death sentence and is not the same as survival rates.  I used to have links to some charts on my website but am not sure if the links are current.  (Currently in the stages of updating my site – it is linked on my signature). 

      As for understanding the genetic profile of your tumor, I really haven't heard of anyone doing that from their original primary melanoma.  Usually this is done from some tumor that is part of a recurrence.  You would have to ask your doctor about the possibility of doing that.  Since it is NOT a recurrence and there is no guarantee you would ever have a recurrence, I'm not sure how your doctor would respond to that request.  And… if you were to have a recurrence years down the line, that tumor itself would most likely have to be tested specifically to make sure it still had the same type of mutations.  And new mutations are being researched all the time, so it doesn't really seem to make a lot of sense to test things now when your testing may be "obsolete" in even a short amount of time.  Again, something else to discuss with your doctor – these are just my musings.

      Best wishes,

      Janner

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      Janner
      Participant

      I can't help you with all your questions, however I think you might have misunderstood something.  I believe you might be mistaking the 8% recurrence rate for an 8% chance of having a second primary melanoma.   A second primary is a new melanoma which is totally unrelated to any existing melanoma.  A different mole gone rogue.  About 8% of the melanoma population  have a second primary.  2nd primaries only change staging if they are "worse" than the original diagnosis.

      The risk of a recurrence is probably a little higher.  The rate depends on your stage.  Most "statistics" list a survival rates, however, not the recurrence rates.  Having a recurrence is not a death sentence and is not the same as survival rates.  I used to have links to some charts on my website but am not sure if the links are current.  (Currently in the stages of updating my site – it is linked on my signature). 

      As for understanding the genetic profile of your tumor, I really haven't heard of anyone doing that from their original primary melanoma.  Usually this is done from some tumor that is part of a recurrence.  You would have to ask your doctor about the possibility of doing that.  Since it is NOT a recurrence and there is no guarantee you would ever have a recurrence, I'm not sure how your doctor would respond to that request.  And… if you were to have a recurrence years down the line, that tumor itself would most likely have to be tested specifically to make sure it still had the same type of mutations.  And new mutations are being researched all the time, so it doesn't really seem to make a lot of sense to test things now when your testing may be "obsolete" in even a short amount of time.  Again, something else to discuss with your doctor – these are just my musings.

      Best wishes,

      Janner

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