Not quite a melanoma, what to do now?

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Not quite a melanoma, what to do now?

Postby kandc88 » Thu Nov 01, 2012 9:19 am

Hope it's OK to post here, I'm wondering how to proceed. Do I see another Derm for another opinion or just go ahead with an excision with 5mm margins as suggested, should I see multiple surgeons? I am close to John's Hopkins so could easily make an appt today with someone!

My mole was removed from a spot approx 2-3 inches below my inside ankle bone, on the side of my foot, but close to the bottom. It's a lot the fact that this area seems to have no meat to remove and lots of possible complications to gain with putting a big hole here that has me really concerned, plus what I'm reading about even severely atypical moles mostly never progressing to melanoma makes this feel really extreme as a treatment, plus I have several more moles on my feet and am just as concerned about them and I know a watch and wait is suggested for most, which seems like under reacting....Here is my path report

Final Diagnosis: Severely atypical compound melanocytic proliferation with spitzoid features; extending very close to the deep margin. See comment.

Comment: This is a difficult case. Initial and multiple levels are examined. Sections show a small, well-circumscribed proliferation of pleomorphic epithelioid melaocytes in the epidermis and dermis. The epidermal component is largely along the junction and is dispersed both as single cells and nests. The proliferation ends laterally in small nests. A rare single cell is noted above the basilar layer of the epidermis; however, fully evolved upward growth in a pagetoid manner is not seen. Pigment is noted in the overlying stratum corneum. The melanocytes are heavily pigmented and demonstrate enlarged nuclei with nucleoli. Similar epithelioid cells are seen within the papillary dermis showing poor maturuation with depth. Dermal mitotic figures are not identified and the proliferative index as denoted by Ki67 immunostaining is not significantly increased. HMB45 immunostain fails to highlight the dermal component of the proliferation. Patchy chronic inflammation and a few pigment-laden macrophaes are seen. Overall although the degree of cytologic atypia is concerning, given the small, well-circumscribed nature of this proliferation and the absence of a significant stromal response or pagetoid growth, the diagnosis of a severely atypical compound melanocytic lesion with spitzoid features is favored over melanoma. In addition, some of the atypia may be related to previous trauma/irritation to the lesion. Nevertheless, as the lesion extends close to the deep margin of the specimen, reexcision is recommended to ensure complete removal and histologic evaluation.
(all underlining was done by hand by my derm)

Any advice would be appreciated. My derm is recommending 5mm margin excision by a plastic surgeon and says to have it handled maybe by January, so not an emergency. I think the foot is not the greatest place to have a big hole, but of course will do what is recommended, but think it prudent to seek out another opinion, I'm just not sure about exactly what? With all the reading on atypical moles, i now recognize that all of my kids have at least one mole that would be classified as atypical....heartburn....

I know that this is not a diagnosed melanoma, but the derm said it went to three pathologists to get a consensus that it was "just" highly atypical. I'm not even sure if there is a true difference or a real difference since treatment is the same as an in situ melanoma. And yes, I am grateful that the diagnosis is not dire, but I'm also confused and worried about the lack of consenses and the fact that I only have one report here based on what was told to me over the phone....Derm says it's good that this is not a cancer diagnosis, but I'm thinking it almost sounds like that's just a technicality?
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Re: Not quite a melanoma, what to do now?

Postby Catherine Poole » Thu Nov 01, 2012 10:47 am

I'm wondering about the re-excision, especially what it will do to your quality of life. This is NOT melanoma, probably a spitzoid nevus that is benign. So no further surgery should be warranted. I would go to Hopkins and have them review the case. I err on the side that the pathology took the lesion and it was benign, so leave it be.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Not quite a melanoma, what to do now?

Postby kandc88 » Thu Nov 01, 2012 10:53 am

Thank you for your quick reply. This is what my gut is telling me also, though the standard of care seems to be for 5mm margins for severely atypical results that are not melanomas? No one wants a big hole in their foot, but I have an 11, 8 and 5 year old that I need to be here for so if there is any chance....you know. I have a lot of atypical moles and a lot on my feet and hands which is also unusual. Who do you think I should go to? A dermatologist at hopkins, not a surgeon off the bat? Would I request a melanoma specialist or not if this is not melanoma. My understanding is that even if they are not saying melanoma is that it's a judgment call, isn't it? So perhaps while insurance-wise I'm lucky, if not treated as melanoma maybe this changes to very stupid and "unlucky"?

Anyway those are my thoughts, but I'd like your advice on what to ask for when I call JH?

Thanks again.
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Re: Not quite a melanoma, what to do now?

Postby toastwave » Thu Nov 01, 2012 7:14 pm

Hi,

I totally understand where you are coming from. My first diagnosis was melanoma (super thin .15 Breslow) and then I asked for a second opinion on the recommendation of people here and got a pathology report similar to yours. Three pathologists looked at it and basically said prob. severely atypical with spitzoid elements (and some other elements that I do not remember right now) but cannot 100% rule out melanoma. Basically, a great place to be, comparatively, but with some uncertainty in terms of treatment and follow-up. Mine was on my upper arm so in a much better location for re-excision. I had a 1-year-old at the time and that pretty much determined my decision. I had the WLE. The scar is gnarly and it did have some trouble healing.

I would still do it again because although my margins were clear on the biopsy report, they did find more cells in the WLE sample fairly close to where the scar from the biopsy was (luckily they were close enough that they did not need to go back in a third time). The cells did not indicate "anything to contradict the original diagnosis" but I sure am glad they are not still in there. You seem to fall more squarely on the severely atypical side than I was but still...

Anyway, for whatever it's worth, I had a re-excision on a toe too (small margins as that mole was just moderately atypical) and it healed WAY faster and better than the one on my arm where there was plenty of skin. It did hurt way more at first despite the much smaller incision.

Regardless of what you choose, this is a great thing because now you know to be on the look-out for any other changes. Wake-up calls with pretty good outcomes are nice.

Good luck deciding! It is such a tough call when kids are involved...I am way less rational about waiting and seeing than I would have been before my daughter, I think.

Scarlett
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Re: Not quite a melanoma, what to do now?

Postby kandc88 » Thu Nov 01, 2012 7:47 pm

Still at this point I'd like to know who exactly I'm supposed to be going to for another opinion. Since I'd just like to get into the JH system on this, should I be making a derm appt. I think this is the "cheaper" route rather than just going through the request for second opinion by the pathologists? Anyone have any advice for me on this? I'm sure without the diagnosis of a cancer right now that I'll have to wait for some time to get in...and want to get the ball rolling. I already cancelled a Jan ski trip due to uncertainty but hubby and I plan on an italy trip in the spring and I don't want to postpone that if possible....
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Re: Not quite a melanoma, what to do now?

Postby kandc88 » Fri Nov 02, 2012 1:50 pm

I got lucky and got an emergency appt today at JH. Apparently they knew well the dermopathologist on the report as an ex-JH employee, and the secondary pair of eyes was a very well known person, I'm told maybe even the best in the country so they said they are very confident in the report as far as it being not a melanoma. This definitely makes me feel better. The dermatologists I saw agree that an excision is warranted due to the extremeness of the atypicality....if that's even a word. They say I dodged a bullet and was lucky to find it when I did it was so borderline. The derm said the question was of whether 1mm or 5mm margins would be appropriate and again since it was so atypical he said for sure if it was his foot, he'd go with 5mm. I got a lookover at all my other questionable moles and feel better now, though there is one more that they will remove at the same time, other foot so I will have to be mostly off of them for 2-4 weeks so they can heal correctly. Sounds like a bummer, but I know that this is very lucky in the grand scheme of things so I'm going to try to ignore the rest and concentrate on the good now that I've gotten another opinion and a plan to move forward, not that I'm looking forward to the surgery on my foot, seems like a sensitive region, but it can't be helped so it's time to stop worrying over it. Thanks to those who responded. I wish you all good health!
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Re: Not quite a melanoma, what to do now?

Postby toastwave » Fri Nov 02, 2012 2:12 pm

Congrats! Awesome to hear that everyone agrees it is just severely atypical. Bummer about that skii trip but, hopefully, this means many years of skiing ahead and Italy should still happen. Good luck with the upcoming WLE. I hope it heals nicely. They say to watch for infection in the feet as they are particularly prone to it but your doc may give you some antibiotics ahead of times just as a precaution, mine did. Happy healing and glad to hear things are on the way to a pretty good resolution.
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