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Rare Diagnosis – Looking for support

Forums Cutaneous Melanoma Community Rare Diagnosis – Looking for support

  • Post
    limpbizkt55
    Participant

      I really am thankful for all the support this website provides and I would like to use this post to kind of vent and ask for support and see what others have experienced. 

      This post is about a relative. 

      32 y/o female notices a strange mole on hip in May of 2017. Within 3-4 weeks went to dermotologist and had a biopsy done. Results came back as melanoma depth at least 0.71MM, superficial spreading, (I am sure I getting this wrong, negative ulcaration?). Doctor said this is the best possible news and she should have it removed via WAE, biopsied, and then be re-examined every 6 months. Nothing further needed. No sentinal node biospy needed. The office could not book the WAE for 6-8 weeks so we decided let's get this out of her ASAP and went to a different dermatologist. The day of the initial appointment he did the WAE and send it out to biopsy. When we got the results back the final depth ended up being 0.95mm with CLEAR MARGINS and he said she probably did not need it but just to be ultra safe go to a sentinal node biopsy but the chances were very slim they would show positive. 

      Went for the sentinal node and they injected the dye and found 3 nodes, removed them all, and yes you guessed it they ALL came back positive. Doctor said this is extremley rare and he was shocked. Now we are waiting for PET scan and Brian MRI results. Obviously super scared and nervous. It seems insane that this < 1mm superficilal mole with clear margins has now possibly caused who knows what. I know we won't have a plan of attack until we get the full results back but we are expecting the worst and want to know if anyone else has gone through this and what to expect. Thanks so much for your time! 

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        jennunicorn
        Participant

          So sorry your relative is having to go through this. You're being great support for her by finding out as much info as you can to be prepared. Although it might be considered unusual for a "shallow" lesion to have spread to lymph nodes, it isn't unheard of. Mitosis rate could be a factor into why it spread already, that is the rate at which the cancer cells divide, and if it is high, then there is a higher chance of spread. I would remain hopeful that her scans will be clear, but mentally preparing for something further never hurts.

          When I had my SLNB (senintel lymph node biopsy) done I also had 3 lymph nodes positive for melanoma. The odd and interesting thing about my lymph node involvement is that they all had around the same amount of melanoma. The pathologist described it as looking like "speckeled jelly beans". This is unusual because the general idea is that it would spread to one lymph node first, grow as much as it can, then move on to the next one, so there would be more of a progression where one lymph node has the most melanoma, the next a little less, and so on. I wonder if your relative's lymph node involvement is similar to mine, not that it changes staging, but could be something interesting to know.

          All you can do now is wait for results of the scans, once those are in then she can start to get an idea of what treatment options are available to her. 

          Best,

          Nemesis
          Participant

            She had about 10% chances of it spreading to lymph nodes, so not that unheard of unfortunately.

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