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October 27, 2012 at 3:05 am #20716
I just got the results from my last biopsy back and one of my moles was totally benign (yay!) but the other was severely atypical and she needs to take wider margins. I have three questions and would appreciate any answers you all can provide. I know I am in a really good place and feel very blessed but, also, hate this so much.
1) My first diagnosis was a really thin melanoma .15mm/severely atypical mole, the diagnosis could not be differentiated with 100% certainty. So, I have a pretty gnarly scar from it because it was treated like a melanoma and the surgeon sucked. The results I received today are squarely on the severely atypical (not melanoma) side (yay! but also, darn-cause I wish it was normal). I wondered if the scar would be equally heinous. It is fine if it is, I am actually mostly worried about pain because it is on the really sensitive back of my thigh. Anyway, are severely atypical re-excisions the same size as melanoma re-excisions or the same size as moderately atypical re-excisions?
2) I am on a 3-month schedule because of my diagnosis, my sunburn history and the fact that I seem to make weird moles. So far, I have had 6 biopsies with 3 normals, 1 mild, 1 moderate (re-excised), and this severe in 1 year and 2 months. Is this normal? I don’t have that dysplastic nevus syndrome (sp?).
3) Do moles come in atypical or do they turn atypical? I ask this because both my original diagnosis and this mole were very “young moles,” 8 months and 6 months respectively. So, I am a little freaked out at the rate things seem to turn “bad” on my body. In other words, what if I miss something for a year? You know?
Anyway, thanks for any help. I am really relieved that the scabbing, changing mole turned out to be just an atypical but also have a renewed sense of anxiety over observing every little thing. That mole was literally 1mm across.
ScarlettOctober 27, 2012 at 8:35 pm #57212Catherine PooleKeymaster
You say you have atypical moles but not dysplastic? That is really the same thing. Are you watching with photography of your skin too? This sounds like way too many biopsies for benign moles. None of what you had would necessarily have turned into melanoma. I just am of the opinion that derms should be very judicious in their biopsies and know the “look” of something that could herald a melanoma. Photography is the best follow up tool since your doc is not going to remember your skin from another person’s that well. And for you, to see any change, I would have follow with photography.October 29, 2012 at 7:49 pm #57213
Thanks so much for your reply. It seems like a lot of biopsies to me too but I have had three scab over (prob. because my toddler is of the rambunctious variety so they may have been injured) so that accounts for three of the biopsies. One of those was the recent severely atypical.
As for whole body photograph, there is no one near me that does it. I don’t have a lot of moles, prob. 40 or so, which may be why it has not been suggested. Or, the fact that there aren’t any places that do it to my knowledge in NW WA. My more odd-looking moles are being tracked photographically and independently but that does not really account for new ones or changes in the others (the lesser looking odd ones). Most of mine are brown and all that have been dark black have come back with some issue so I know to watch those closely.
I just want to be free of this and move on with my life but every time I see a new dark mole pop up I get freaked out because, well, they seem to all have issues. Maybe my doc. is following my lead in that I am ok with biopsies?! I have a 2-year-old and we are trying for a second so this adds a certain something to the whole process.
It just seems that every time I am calming down and becoming comfortable with watching and waiting and enjoying my life, something else has to come out, I have the dreaded wait, and then I need a bigger surgery.
Good luck today with the super storm!November 3, 2012 at 7:29 pm #57214
Hi there. I’m so glad it turned out not to be melanoma, but am sorry for the scare the “severely atypical” diagnosis has caused. I agree with Catherine that getting photos taken is the best thing you could do. I was lucky to get mine done at Swedish in Seattle a few years ago, but they no longer are in the grid photography biz. Last I heard, the University of Washington was the one place you could still get them done. I would call there and, if you are unable to have any success, check in with Seattle Cancer Care Alliance. They’re so great and will be happy to help. If you’re still unable to find anyone, You could always have a friend take photos with an Iphone and label them with the specific area for future reference. It’s certainly not ideal, but I think it would be better than nothing. Just my two cents. In the meantime, I am having my stitches out on Monday for the last moderately atypical mole that was removed from my back. As we’ve talked about, you and I have a lot of similiarities in the way our bodies are producing atypical nevi. It seems to be our “norm.” My doc has decided to stop doing biopsies because once those are done, she feels she needs to do full WLE’s on anything coming back as moderately atypical or worse. As a result, we’re going to keep a very close eye on anything that is changing or anything that is new. Let me know how you’re doing and feeling. I’m thinking of you —- LisaNovember 5, 2012 at 5:35 pm #57215 Hi Lisa,
Thanks for the info about photography. I’ve looked online and cannot find anything so I will definitely follow your leads. We tried the smart phone photographs but they are just not that clear. Apparently an app. was just created for iPhone that will be out on Android soon so I will try that. I’ll most definitely check UW because the real deal would certainly help esp. since I am still getting new moles here and there, which are hard to monitor or notice on the back of my body even with my partner’s help. Lucky you to catch the folks at Swedish before they stopped doing photography! I think I will be in your same boat soon if I can get the photos because if they keep cutting me at this rate (I’m 32), I am not sure I’ll have much skin left should I get to see 60. Thinking of you today as you get your stitches out and really hoping nothing out of the ordinary is noticed so you get some peace and normalcy for a bit!
ScarlettNovember 5, 2012 at 6:10 pm #57216
Thanks, Scarlett. Let me know what you find out as you seek to find a place to do the grid photographs. Everything went well at my appointment this morning. Keep me posted on how things go with you and let me know if I can be of any help! LNovember 17, 2012 at 3:04 am #57217 Hi Lisa,
Had my WLE done today! I never thought surgery would feel like a good thing but I’ve had it hanging over my head for 2 weeks so it is just nice to have it done with and begin healing. 10 stitches though mostly internal- man, that’s gonna be gnarly. And, the back of my upper thigh should be fun…maybe I will have my Thanksgiving dinner standing up and burn some of those pie calories
. All in all, though, I am in good spirits. No margins were involved in the biopsy so I imagine nothing special will come back. I also got my pathology report and it stated something to the effect of “this lesion does not fulfill all of the characteristics of a melanoma in situ but it does present an evolving lesion with severe cytologic atypia.” I hate my moles! Had another biopsy too for good measure. This one was on my neck. Skin-colored mole that developed 2 black/grey dots in the middle. Hope that doesn’t need re-excision. Other than that, all else looks “normal” for me. So I am hoping for a biopsy-free 2013! Hope you’ve healed pretty well from yours.
ScarlettNovember 18, 2012 at 11:55 pm #57218
Hi, Scarlett – I’m glad you’re feeling good and that the WLE is behind you (literally and figuratively speaking)! I’m thinking of you and will look forward to hearing back about your path report although, like you, I am confident it won’t show a darn thing. Enjoy your Thanksgiving and keep me posted on what you find about the grid photos. Hopefully you can get them taken soon. I didn’t realize how important they were when I had them done but, boy, am I ever glad to have them now. Take care and talk soon — Lisa
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