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Update to giant weird amelanotic melanoma at 24 years old

Forums Cutaneous Melanoma Community Update to giant weird amelanotic melanoma at 24 years old

  • Post
    kellylizzz
    Participant

      So…..my goshdang body managed to produce one of the largest melanomas any of the doctors handling my case and any of the doctors they've consulted have ever seen. The pathologist determined it is at least 1.5mm thick, and the margins yesterday were not clear, so they had to cut much more out today, which will be tested itself, and that will determine whether they cut more out or not.

      Because of the thickness being much more than originally thought, we can't do the skin graft yet, because we need to do a sentinal lymph node biopsy as soon as possible, which will be next week. That procedure will determine whether or not the cancer has spread to my lymph nodes. Once that has been done, and once the pathologist says we cut it all out successfully, then we can do the graft from my thigh to my head. Until then, it'll be an open wound to the muscle layer that I have to keep covered with a head wrap, which is annoying.

      So today did not at all go as planned. The pathologist had to spend 4 hours looking at the slides from the excised lesion because it's so goshdang big. Interestingly, despite the three previous biopsies from July 2nd and June 14th finding no ulceration or mitosis or regression, the whole lesion excision showed all three, which means it's more aggressive than we had originally thought. Because of those new findings, my new stage is this:

      Malignant Amelanotic Melanoma stage T2b.

      So that's the update. Frick cancer. 

       

       

      I'll update again once I have the complete path report. 

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        kellylizzz
        Participant

          Oh it was 12 x 10 cm in total by the end of today, that they cut out. That's with 2cm margins. 

            MelanomaMike
            Participant

              Hi Kellylizzz, daaamn sister! that is quite a Melanoma on you, in "Inches" that just about 4in. by 4.75in. wow, ok, no sweat, your team {and all of us here at MRF supporting you & rootin for you!} WILL get this taken care of, you will get by this, and so what about the head wrap, everyone of us here {or atleast "half" of us} had to "wear" something that was aestheticlly unattractive temporarly during our healing process, or will have to for the rest of our lives, no sweat sis! you got this!…Mike

              kellylizzz
              Participant

                Aww thank you Mike! I'm sure it'll all end up ok, I'm just surprised at how big it is, and some folks here were marveling at the unusual presentation of it, so I figured I'd update everyone ! I appreciate the support !!! 

                Mark_DC
                Participant

                  Hi Kellylizzz

                  Am sorry about this but its great this has now been removed.

                  i had seen your photos earlier and was hoping it was not melanoma, since it looked different

                  now lets hope the slnb is good (dont worry if not) and that the skin graft goes well. I had a skin graft for my second excision on my lower left leg – it takes time to heal and is a pain (for me weeks in crutches which is no fun since i have minimal upper body strength) – now its fine, a little embarrasing, if people ask (They dont and its usually covered) then its a shark bite

                  good lucj with the next steps. There is plenty of support and information this board, which has really helped me, plus the treatments can work for some/many of us. Lets hope its caught early and the skin graft goes well. I guess the standard advice from us now would be to make sure you work with a melanoma specialist (and maybe seek second opinions whenever you face a difficult choice, this has helped me). If you have a good one then their advice should be more or less in line with what you read here, and then you can be confident in the treatment plan

                  good luck and well done with the excision

                  Mark

                Brittany1999
                Participant

                  When I had a skin graph for my neck I bought several (fake) wolf tooth necklaces in order to add to the story of my scars. However, I discovered my neck doesn’t like necklaces after the surgery (even 12 months after) so I never get a chance to show off the tooth I took from the creature which scared me. 🙂

                  UBContributor
                  Participant

                    Kellylizzz, so nice of you to update us! Good luck with your treatments and be God with you! Pls keep us informed.   

                    stars
                    Participant

                      Thanks for the update, not the news I wanted to hear from you, I was hoping that the whole thing was a misunderstanding. Next best thing is to find and excise that sucker… glad that is done now. I think you will be enshrined in some medical journal somewhere 'Highly unusual presentation of…'. Just such an extraordinary case. Hope you are on the way to the all-clear.

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