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  • #20425
    cohanja
    Participant

    Catherine, after 20+ years, what was/is your follow up? Obviously, skin exams, but oncologist? Scans? Just lymph node palpation? Maybe something more first 5-10 years, then less after that? Just wondering…

    #55152
    Catherine Poole
    Keymaster

    In the first few years after my diagnosis I went from every three months (to PENN’s Pigmented Lesion Clinic where I saw derms and oncologists) and then to every 6 months and then to annually which is what I do now. I had a .76 in the vertical growth phase, with 1 mitosis. There was no SLNB then, so follow up was always palpating my lymph nodes and skin exam, which is what I still have done. Never had scans, discontinued the chest xrays after a year since my doc said it would only show advanced disease which would be symptomatic anyway. I am very fortunate to be here without further issues but my pathology was read by the best, Wallace Clark who was a pioneer in melanoma, inventing the follow up photography and of course the Clark levels.

    #55153
    cohanja
    Participant

    Isn’t the % low of recurrences for lesions < 1mm? Or even lower % of recurrence for lesions .76mm or less? So, .76. . . .wouldn't percentages indicate you should be here without further issues? Of course, you feel fortunate. . my question is this should be what's expected from the percentages, no?

    #55154
    Worrywart
    Participant

    The survival is represented in the stats. Not all will survive, but MOST do.

    #55155
    bon15
    Participant

    Catherine, you say that you are very fortunate but that your pathology was read by the best. You seem to be implying that the two are somehow linked, is this your view?

    #55156
    Catherine Poole
    Keymaster

    Yes, it is very important to have your pathology read by an expert, I’ve seen many mistakes otherwise and that’s why some of the statistics are skewed. I do feel fortunate to be here despite the odds in my favor as I didn’t have the SLNB which my doc says they would have recommended and it was in the vertical growth phase. They gave me a 10% chance of recurrance. Now if I had insitu, or pure radial growth phase I would have long forgotten it soon after. I also feel this melanoma was a good wake up call for me, to write two books on it so we could dispel the mistaken notions about it and then lead to my being able to help people and reassure them during this scary time! Something I couldn’t find.

    #55157
    cohanja
    Participant

    The growth phase thing is what’s really eating me. Obviously mine is not in situ. But, whether it’s VGP. . one pathologist said, “Whether or not there is a definite vertical growth phase is not entirely straightforward. There are features consistent with an early VGP. The prognosis is still very favorable (recurrence very unlikely, below 5%).” I don’t knwo what to make of that, it seems like such a gray area. . “not entirely straightforward”

    #55158
    cohanja
    Participant

    Catherine, that’s why which statistics are skewed?

    #55159
    bon15
    Participant

    Catherine, I had a 0.72mm Clark 4 superficial spreading melanoma removed 4 months ago from just above my knee which is very similar to your pathology. I must admit I’m now rather concerned about the 10% chance of recurrence as all my research/ prognostic models etc have shown my chance to be nearer 5%. My pathology did show a zero mitotic rate and showed an “invasive radial” growth stage as opposed to vertical (albeit the dermopathologist seems to have only reported this because of Royal Society of Pathology guidelines and not because he seems to believe in the distinction).

    #55160
    cohanja
    Participant

    Not sure how much this is used, but the path opinion I got from MD Anderson did immunostudy with anti-Ki67, which showed scattered cells in the dermis. When I asked, the pathologist said it was fewer than 5% of the cells. There have been studies showing mean dermal Ki-67 expression in invasive RGP tumors was usually < 5%, whereas in tumorigenic VGP melanomas the expression was higher (15-20%). So, he says my Ki-67 expression was fewer than 5% of the cells, which is more indicative of RGP, but he called it VGP due to size of nests, (not due to mitotic rate).

    #55161
    casey188
    Participant

    Cohanja how could you have nests of any size if the cells were scattered? Don’t those nests have to be bigger than the ones in the epidermis? Plus you had such a thin mel I just don’t see that as a possibility that the nests were big enough to call it VGP. Of course I am not a pathologist, but just by definition that doesn’t sound right. Another example of the subjectivity involved. Personally, I would toss that opinion out. It comes down to who you trust and believe, and go with that.

    #55162
    cohanja
    Participant

    That’s the hard thing, I mean I sort of trust all of them – all good; University of Chicago, Northwestern, Sloan Kettering, MD Anderson. With the MD Anderson report, it was actually 2 different parts of the report, so maybe they are talking about 2 different things that are not mutually exclusive, casey188. So, in the main part of the report it says, “Within the dermis are nests of hyperchromatic, atypical melanocytes which appear histologically similar to those at the dermal-epidermal junction. These nests are confined to the papillary dermis.” So, based on the size of those nests, this report says VGP. Now, later in the report it talks about the immunohistochemical studies with anti-Ki67, showing scattered cells in the dermis, and when I asked if the Ki-67 expression was less than 5% or greater than 20-25%, he said less than 5. So, there were nests, but the “scattered cells” part was mentioned around the immunohistochemical studies performed. So, seems like maybe 2 different things?

    #55163
    casey188
    Participant

    Do you think the first description was the preliminary result but after the additional testing, that finding became the actual conclusion? That’s the only explanation I can see for a complete contradiction on the report.

    #55164
    cohanja
    Participant

    He said, “The nests are composed of cells but NOT all cells are Ki-67 positive, hence “scattered cells”

    #55165
    casey188
    Participant

    So does that mean all of the cells in the nests are not melanoma cells? Very confusing.

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