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"You have melanoma".... "Actually, we're not convinced"

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"You have melanoma".... "Actually, we're not convinced"

Posted By
Jw2457
11/12/2020 2:36pm
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Replies: 11

Hi there - I posted a few days ago about having been diagnosed with melanoma on the scalp recently. Here's what my path report says:

"Outside pathology report from 11/01/2020 was reviewed showing right vertex scalp shave biopsy malignant melanoma, at least 0.9 mm to the base of the specimen, no ulceration. Peripheral margin is involved by invasive melanoma and melanoma in situ. Deep margin is involved by invasive melanoma and melanoma in situ. No lymphovascular or perineural invasion. Tumor regression present."

Now, I have already gone to a consultation with a surgeon at Wash U/Siteman in St. Louis and was all set up for a surgery on 11/17 however yesterday they called me to tell me my surgery was on hold because as part of their process, the received the slides from my dermatologist's path lab and are now examining them at their own and their pathologies are not convinced that what I have is melanoma.... Whaaaaat?

So, the surgery is on hold but I am waiting to hear back on results.. they're doing some additional tests and stains is what the nurse told me. Has anyone heard of this happening?

Hello JW,
The university hospital I went to for my surgery did their own pathology on the original slides from an outside place. I believe this is quite common to re-exam the slides. Please wait for the results, as it will explain any new findings or conflicts with the other facility. Its hard to wait, I know! Hang in there!!!

November 2017- Stage 2A Lentigo melanoma excision and graft .
June 2020- Stage 4 progression. Started Keytruda August 2020. BRAF not mutated.

Thank you! Oh, I am trying... this is tough stuff. I said to one of the other replies, I'm, maybe foolishly, hoping that this may mean my melanoma (Assuming it is one) isn't super aggressive, otherwise it would be more clear to them? :/

I followed your prior post and have been sending good vibes your way. I am sorry you are dealing with any of this, but absolutely agree with Thinking Positive. It is better to be sure than quick and this kind of review is very common in melanoma. When I was first diagnosed there was a great deal of dissension among the local pathologists about my biopsy, so my tumor was sent to an expert at Harvard to break the tie. I figure that although it gave me a conclusive melanoma diagnosis, it also gave me the right to say I went to Harvard!!! Hang in there. Repeat staining and review off the sample is very common, though nerve wracking for us on the other side. yours, celeste

oh don't get me wrong, I am very much glad they're double-checking things but I just wish I knew that was a thing before they told me, "hey you have melanoma and here's your surgery date" -- I might have held off on telling some people until I knew for sure what I was dealing with. Now, that being said.. is it stupid to think maybe my situation isn't quite as bad because they're not sure if it is or isn't? I would assuming if it were a super aggressive melanoma then it must be pretty cut and dry, right? :/ I don't want to be too optimistic, but that could give a girl some peace of mind.. :)

Whether the melanoma is "aggressive" or not is unfortunately not something that this evaluation will determine. However, they are going to decide whether or not it IS melanoma or something else. So....it never hurts to prepare for the worse and hope for the best. Hopefully, this will NOT be melanoma. However, if it is - you already have an appropriate plan in place for have the wide local excision and sentinel lymph node biopsy. I will be hoping that this is not melanoma at all. But, if it is, I am hoping that you will have what the odds indicate your result most likely would be - negative nodes and therefore not advance to Stage III. Yours, c

I think this is a standard procedure when you are being seen at a melanoma clinic but have been initially diagnosed at a general one or coming from a dermatologist. I was diagnosed at a regular clinic and once I knew my diagnosis I went to a melanoma clinic for their opinion. My biopsy slides were sent to them and their own melanoma pathology team confirmed my exact diagnosis within a few days. Apparently, the melanoma clinic at University of Michigan changes the original diagnosis in up to 10 % of the cases they see for a second opinion, from outside clinics. You know what people say, measure (or diagnose) twice and cut only once. Keeping my fingers crossed. Hoping you fall into those 10 % .
Melanie

Similar to Celeste (Bubbles), my excision and biopsy were done by Emory. Their derm path team couldn’t make a definitive call, so they sent that little piece of me to a derm path at UCLA. Unlike Bubbles, my sample was not Ivy League material. Anyway, even after it was looked at by that second pathologist they did not definitively come out and say it was melanoma but enough factors leaned in that direction to treat it as such. Probably somewhat common and the extra set of knowledgeable eyes is likely a good thing. Hope all goes well moving forward!

When my son was dx because his was so unusual ( age 21, on his tongue) he got three opinions. Kaiser said melanoma, UCSF said melanoma then it got sent to an expert at U Mass and he says maybe melanoma, maybe not. I clung on to the "maybe not" hope, but in anywise they decided even with uncertainty to treat as if it was.

Honestly, I would be thrilled if that were the case in my situation. I want this thing removed regardless of the diagnosis. It's a suspect spot I cannot see myself to easily monitor. I think it's smart to remove regardless and hopefully there will be no major complications from any procedures.. I know the scalp is tricky if we want to try to keep from having a bald spot, which I would like to do since I'm 32 F.

Well for him , treating as it it was melanoma meant 2 surgeries and a year of interferon ( all they offered back then) . In any case 10 years later he is healthy so that’s all I care about!!

Hi there JW2457, while you are waiting for answers to your pathology evaluation, if you want to get a better idea of what they are actually doing, here is a video from 2015 that should help you get the big picture. It features Dr. Whitney High of University of Colorado and get into the process of evaluation of moles looking for melanoma. Good luck with the pathology evaluation!!! Ed P.S. It gets started at 8:00min mark and gets good around 32:00 and again at 37:00 min mark gets into slides and staining techniques etc. https://www.youtube.com/watch?v=B5E_Ml7QRJc&list=PLeLfIjZjKo_3kVJe9cQlcX...