Melanoma in thumb -> dysplastic nevus -> melanocytic proliferation -> amputation?

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    • July 26, 2017 at 7:33 pm
    PhoenixGirl
    Participant

      Hello all,

      I was diagnosed with melanoma in situ in the matrix of my left thumbnail in late 2012.  The tumor was excised using slow Mohs surgery in Dec 2012 – margins pronounced clear.  

      In Sept 2015, I underwent a 2nd series of slow Mohs excisions of the same area after a biopsy of pigmentation of skin in the same area as the tumor was declared to be "dysplastic nevus".  Again the margins were "cleared". The wound encompassed the top of my thumb, including a small portion of the tip, almost to the knuckle and extending the full width to either side.

      In June 2017 a new freckle appeared in the same area near the site of the original nail bed.  There is also slight darkening of the area around the small stub of nail that has regrown (twice).  Biopsy revealed "Junctional melanocytic proliferation, recurrent, extending to the deep margin".

      The pathologists comment was: Given the history of melanoma in situ, as well as an atypical melanocytic proliferation worrisome for recurrent melanoma at this site, a complete excision is recommended in order to ensure that this lesion does not re-recur.

      At the follow-up with my dermatologist, he stated that due to the previous surgeries having gone down to the level of the bone and the extent of the area removed, he wondered if he would be able to give me clear margins.  Also, since this is the third time abnormal cells have appeared, there is some reason to think they will keep growing in that area.  So, he referred me to an orthopedic oncologist and the treatment plan is amputation of the distal phalanx of my thumb.  

      Has anyone else had a similar experience?  I am having a hard time scheduling the removal of half of my thumb (although it is on my non-dominant hand), but I understand that the reccurrence of abnormal cells and the lack of tissue at the site have led to this recommendation.

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        • July 27, 2017 at 2:49 am
        Prd10
        Participant

          I think you are right to be hesistant and I would try to get some different opinions on this before you move forward.  An orthopedic oncologist is going to be inclined to suggest amputation where a medical oncologist may think it's unnecessary. There are also plastic surgeons that specialize in the hand and they may be able to get clean margins without amputation.    You may still end up with an amputation after a few opinions but at least then you feel more confident with your decision. 

          My primary was on my right index finger in a "really shitty" spot according to my surgical oncologist.  I had two drs that wanted to amputate two fingers and two drs that said no way that's too much.  I had a large lesion and we knew it was melanoma.  The medical oncologist and plastic surgeon really talked me out of the amputation and I'm so glad they did.  In my case it just wasn't necessary, although in no way were the opinions of the surgical oncologists wrong, to get 2cm margins amputation would've been necessary.  We went with 1cm margins and I haven't had a local recurrence.  Your scenario may be totally different since it's in the actual nail bed.  I just think even in your non-dominant hand it's a pretty major surgery.  Wishing you the best

          Caitlin

          • July 27, 2017 at 1:04 pm
          geriakt
          Participant

            You may want to read up on Juan Victoria's posts on here from 2015-2017. He had a melanoma under his thumb nail in 2015. The cells traveled to his lymph node as was diagnosed 3B. He had to have his thumb removed and I don't ever recall him saying it was not the right thing to do. Unfortunatly Juan passed in 2017 after 1.5 years of post treatment chemo. 

            You should get multiple opinions from surgical oncologists that know about melanoma in the fingers and nail bed. 

            Unfortunately there is no hind sight with melanoma. Sometimes drastic measures must be taken.

            Tom 

              • July 27, 2017 at 2:56 pm
              Jamie1960
              Participant

                +1 to Tom's response.

                As with voting in Chicago, "frequently and often too" applies to cutting when addressing melanoma in its early stages.

                Wishing you the best of success, whichever path you choose.

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