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Questions I can’t find answers to..

Forums Cutaneous Melanoma Community Questions I can’t find answers to..

  • Post
    DT1985
    Participant
    Stage 1b (as of now until we find out what SLNB says Thursday) Nodular melanoma, back of the right leg calf. 1.5mm deep, no known ulceration, but marginal mitosis present.

    1. How deep is a standard shave biopsy? If they can determine the 1.5mm depth, I am guessing the total shave would have been deeper than that? For example you can determine something is a foot long if there is only 6in to measure.

    2. How deep have you heard of a melanoma growing without lymph node mets? Conversely how shallow have you seen/heard of one with lymph node mets?

    3. The 10yr survival rate of a stage 1b melanoma patient (according to the American Cancer Society) is 86%. How is it determined those 14% are not surviving? Is the melanoma coming back in the same spot? Is it a different melanoma that develops? Or are these people in their study dying in other ways?

    4. Moving forward after the WLE & SLNB, should everything come back clear, how often should I get checked? Should I have any/every mole removed? (For two years they told me that the mole was ok) Is it only a matter of time before I get another melanoma somewhere else?

    5. Should I get a full body scan to check the rest of my body just in case? PET Scan, MRI, CT Scans, etc… I’m paranoid I’m filled with all types of cancers now and have no idea…

    Any and all help you folks can provide is greatly appreciated. I hope you’re all doing well and on the road to clean scans.

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  • Replies
      ed williams
      Participant
      AS to question #3, if you go back to Feb 8th post, I sent you the newest survival guide based on staging 8th edition where on page 12 of the document for 1b the 5 year survival is 99% and the 10 year survival data is 96%. https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/diagnosed-melanoma-after#comment-132922

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        tkoss
        Participant
        as to #4: I had a mole biopsied and removed. stage 1.
        derm told me to come back in 6 months when he found another mole and it turned out to be Stage 3.

        did he overlook it first time or did the 2nd mole grow from un-remarkable to stage 3c in 6 months?
        Would I NOT be doing 24X2/year opvido for stage 3c and instead have a scar where he removed an in situ mole?

        does that answer your question?

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        Sdmotorcop
        Participant
        My melanoma took approximately 2 months to go from nothing to 4.3mm. Stage 3C. My first melanoma was 1.7mm and I had known about it for 4 months (wife kept telling me to get it checked.. can you say I’m an idiot for not listening… yep). Doesn’t seem like there is any rhyme or reason behind how fast they grow..

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      LRS88
      Participant
      Sorry that you are dealing with this and prayers that your SNB comes back negative :-)
      in regards to #4, you will likely have visits with your dermatologist every 3 months for at least the first year, then as time goes on and risk goes down every 6 months. Hopefully both you and your dermatologist will be cautious and watch for new or changing moles. Since my initial melanoma was found almost a year ago I have had 2 more moles removed, both which thankfully were only mild and moderate dysplastic nevi. I believe the statistic for developing another primary melanoma after you have already had one is about 10% (someone more familiar can probably confirm/correct that stat). Again though, this is the reason for more frequent dermatologist visits and monitoring.
      in regards to #5, pending the results of your SNB, a full body scan would likely not be covered by any insurance and most doctors would say that it is unnecessary testing. Both a dermatologist and primary care doctor will likely just recommend thorough skin exams and checking lymph nodes for any swelling, bumps or other changes.

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      caman
      Participant
      As for number one. My primary was also a nodular Melonoma. Mine was 3.8mm situated on the neck also with positive margins. They removed a 2cm chunk with a WLE and out came the remaining. The pathology had it at 2.4mm. So the question still remains how big was the primary?..Never had a clear answer. Logic saids its “AT LEAST” 3.8mm . My last two pathologist said its 2.4mm since a WLE takes precedence. My SLNB didn’t work on me, so my stage was never clear. That was in April 2018. Fast forward, its almost two years later, I’m still clear with no melanoma. Since my lymph nodes have not been affected, as of yet, my doctor saids its very likely my SLNB would of been negative if it had worked. My doctor also said my chances get a lot better after 2 years. and I’m almost there. I admit its been a mental struggle up until this point considering the size and location of my primary. Just take one scan at a time.

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      doragsda
      Participant
      I can give you one data point regarding question 2:

      My wife’s primary on her calf was very thick, over 4mm. Her sentinel lymph nodes were clear and a PET scan was clear. However, 6 months later, two mets showed up in her brain. It’s over 3 years now since her primary and those two brain mets and still the only mets she has had. She’s had brain surgery, gamma knife, and immunotherapy and is doing very well now.

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        DT1985
        Participant
        Wow that is crazy. Very sorry to hear your wife has had to go through that, but glad she is doing well now. So I guess from what you guys have experienced, the melanoma can bypass the lymph nodes and create metastases elsewhere in the body? 4 mm is quite thick, so I am surprised to hear that the lymph nodes were clear. However at 1.5 mm if my lymph nodes should be clear, should I still go for a scan? Thank you for sharing by the way

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