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An update
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An update

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  • Post
    • January 16, 2020 at 10:42 pm
    sj
    Participant
      Initial post: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/i-was-diagnosed-aggressive

      My Wide Local Excision is scheduled for tomorrow morning. Yesterday I had a CT of my head, neck and abdomen. Last March an unrelated CT showed a tiny lesion too small to classify on my liver, and thankfully that hasn’t changed at all so it’s unrelated to the melanoma and they suspect I was born with it. In fact all of my organs in my abdomen look fine, which is huge news for me. I believe this effectively rules out stage 4 at this time. I am tempted to have the lesion on my liver removed regardless, but I’ll leave that for another day.

      The CT showed no masses on my lymph nodes as well, and I had the Lymphoscintigraphy Injections today so they’ve highlighted the sentinel node and a couple of others in close proximity.

      So tomorrow I’ll undergo surgery, and hopefully he is able to remove it all and get clean/clear margins. Hopefully the cells haven’t started to move to the lymph nodes as well. No masses in that area is huge for me, but he’ll take the sentinel one for biopsy just to be safe, and possible a couple more if he detects any cells in that region.

      This has been a horrible couple of weeks obviously, and I have some relief now as I was very worried about that lesion on my liver and was thinking the worst.

      Hopefully tomorrow goes smoothly. Thank you all for answering my many questions. You’ve all been wonderful to me.

    Viewing 4 reply threads
    • Replies
        • January 17, 2020 at 11:13 pm
        ourvan
        Participant
          Glad to hear the good news so far – best of luck on your surgery tomorrow, and may this be as bad as it gets!
          laurie
          • January 18, 2020 at 3:08 am
          EllieS
          Participant
            Best to you… Our fingers are crossed!
            • January 18, 2020 at 3:08 am
            EllieS
            Participant
              Best to you… Our fingers are crossed!
              • January 18, 2020 at 2:04 pm
              sj
              Participant
                Yesterday’s surgery went as well as can be expected. He said the lymph nodes didn’t show any masses but he took the sentinel node and one other to be checked for cells.

                Unfortunately he was unable to close the WLE area until he gets the biopsy results of the margins next week, so I have an ‘open wound’ about the width of a baseball on my left scalp. It’s the bolster dressing many of you are familiar with.

                I just need to ride out the next week, hopefully get good results and deal with the skin graft, which I assume will have another bolster dressing on top of that as well

                This dressing has me nervous. It’s just a little freaky and I’m anxious about being able to keep it clean lol.

                I’m very lucky I can sleep with my CPAP mask on. The straps are on the lymph node incisions and that hurts but I can tolerate it. I’ve lost the feeling in the left side of my scalp which I assume is from the lymph node removal. Small price to pay for being alive.

                The wound is leaking a bit. I’m wondering if I can work this week. I work from home so I might be able to. I don’t want to burn too many sick days yet, because if they need to take all my lymph nodes I’m going to need time off after that.

                  • January 18, 2020 at 4:05 pm
                  Bubbles
                  Participant
                    Hope you heal quickly. Sorry for what you are dealing with SJ. Hopefully none of your sentinel nodes will have any sign of melanoma and you will be done!! However, if you are one who prefers to look ahead “in case” you might review these posts: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=clnd Basically, they all note the conclusion that CLND (complete lymph node disection) does NOT improve survival in melanoma patients and is therefore no longer the standard of care, even when positive nodes are found. Yes, there are those of us on this forum who have undergone CLND back in the dark ages of melanoma care – today we know better!!

                    Wishing you speedy healing and melanoma free nodes! Celeste

                    • January 18, 2020 at 4:16 pm
                    Bubbles
                    Participant
                      PS The numbness you are currently dealing with will probably improve over time. It will be slow, and may never be back to “normal”, but it will bet better!! c
                      • January 18, 2020 at 4:45 pm
                      sj
                      Participant
                        Awesome info bubbles thank you so much! I’m really looking forward to melanoma free nodes, margins, and a fun reconstruction of the wound
                        • January 20, 2020 at 8:09 pm
                        JudiAU
                        Participant
                          I, too, am thinking of you. I hope the margins are good the grafting process is smooth.
                        • January 21, 2020 at 1:31 am
                        lkb
                        Participant
                          Alliteration aside, wishing you a whole lotta whatever works for the wait.
                          Lisa
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