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December 21, 2012 at 3:35 pm #20862
Well I had my 3 month skin check on Monday, and 3 biopsies were taken. I got the dreaded call from my dermatologist yesterday afternoon: the one on my leg is severely atypical, borderline in-situ, so another WLE the day after Christmas. I’ve had 2 in-situs and 3 severely atypicals in the last 18 months, and lots and lots of biopsies with mild/moderate atypia. I know it could be a lot worse and that this is relatively good news (funny what we consider “good news” ) but I’m really upset and probably a bit depressed. My derm is on vacation for the next 2 weeks, so he scheduled the WLE with the plastic surgeon who did the WLEs for my 2 in-situs. Both he and the derm use dermatopathologists to read the biopsies.
My derm said he was very surprised at this path report, as it was only a tiny dot (maybe 2 mm?) and round, just a bit darker brown than other moles in the area. He also said he was concerned about me, since all 3 of the biopsies taken looked very similar to each other (the other 2 came back as mild atypia) and to other moles that I have, so it seems I grow bad stuff that doesn’t really look too bad and is hard to distinguish from regular moles.
He wants to see me again a couple of weeks after the latest WLE to do another skin check and remove anything that’s even borderline suspicious to him. He said he would see me monthly if he had to until things settled down. I asked him if he thought they would settle down eventually, and he just said most people’s immune system will fight off these bad cells before anything develops, but in my case my immune system obviously doesn’t recognize and attack these cells. He said usually things settle down in a few years once your immune system finally figures out what it needs to do, but I’m not so sure. I know the odds of having more than 1 primary are pretty low (8%?) but I’ve already had 2, and the other severes were really borderline in-situs as well.
So more biopsies, scars and anxiety waiting for results. Its just so stressful living from biopsy to biopsy, and if we can’t even tell what’s bad from what’s not, how do I know I don’t already have invasive melanoma on me somewhere?? I have lots of moles (not tons, but dozens) and they all look a bit weird but not alarming in any way. Even my 2 in-situs didn’t really meet the typical “criteria” – they just were a bit darker than surrounding moles but that’s about it.
I don’t know if I should go to a melanoma specialist to get another opinion or to see if there’s anything else I could/should be doing. I avoid the sun during peak hours, wear protective clothing, hats and sunscreen, and see the derm every 3 months. My derm doesn’t use pictures in his practice anymore, but I am planning to ask him if he’ll reconsider that for me at my next appt. Not sure if that will help at all since none of these moles looked like they had changed to me. The derm seems to think he can stay on top of things, and I’m actually terrified of going to a melanoma specialist – I’m so afraid I will get more bad news, like they reviewed my old path reports and they were actually worse than in-situ. I know, I’m starting to sound a little nuts, but that’s what anxiety will do to you.
I know I should be thankful that so far things have been caught early, and I truly am, but I just feel like my body is betraying me and I’m on a downward spiral leading to the inevitable diagnosis of something much worse. Sorry to be such a downer, I just needed to share what I’m feeling right now with the only people who can really understand what I’m going through. I could really use some words of encouragement right now.December 21, 2012 at 4:13 pm #58085
Sorry you’re having to go through this. Like you said, at least these are all early. But, the fact they don’t follow the ABCDE rule – to me, with some people, the argument about “de-moling” not being beneficial, I think in some cases, maybe like this, it might be more applicable. Anyway, maybe you can find a place that uses newer technology, like MelaFind, etc…?December 21, 2012 at 4:22 pm #58086 Barb, I am so sorry to hear you are down in the dumps, but that is to be expected given your recent results combined with your past history. It doesn’t help that it is also the holidays (which can be depressing as well). I have had 3 in-situs in just over 3 years, along with multiple atypicals (some mild, some severe). So I know where you come from.
You have some options: You can continue on with how your derm wants to proceed; you can have body photos taken to make it a bit easier to view new/differences; or you can go to a melanoma specialist or a melanoma program @ a hospital (Catherine could probably assist with referrals). You need to feel comfortable with your body and your skin so only you can make that decision. It may help you to get a second opinion. I myself have gone back & forth with doing that.
Take some time to think about it and decide what is best for you. Please know we are here to support you and you are entitled to feel the way you do. We all have our “bad” days even when we know it could be alot worse.
Thinking of you and wishing you all the best!December 21, 2012 at 4:48 pm #58087
Thanks for replying Cohanja and Laurie. Cohanja, I will definitely look into Melafind – it looks very promising although its not covered by insurance yet. Laurie, your history sounds very similar to mine. How are you being followed? It sounds like you haven’t gotten a second opinion yet on your situation, is that correct? What does your doctor think about your history
of multiple in-situs and severes?December 21, 2012 at 5:00 pm #58088
Maybe Catherine can clarify, but maybe it’s an indication that yours grow very very slowly. . the fact that they are all so early. . and that initially they don’t exhibit abnormal features but maybe eventually something would stand out, but still be at an early stage growing only radially very slowly?December 21, 2012 at 6:28 pm #58089 Barb,
I am 54 yrs of age; fair skinned with blue eyes. Have had moles and freckles my entire life. Used to get teased by other kids – connect the dots, etc.
Spent many hours in my youth out in the sun with little to no protection (if we only knew then what we know now). I remember a few sunburns when I was little, not bad. However, I did have a very bad sunburn in my early 20s. Did Derm visits off and on prior to turning 50. Mostly removing skin tags or raised moles that would get irritated (they would be biopsied with either normal or atypical). A couple of months before my 51st b-day I had a funky growth on my chest just above my breast so I called a new derm to get it checked. Saw him and it was nothing, however while I was there he did a full body check and found my first in-situ (upper left arm, irregular brown mole somewhat large). Started with quarterly checks and a little over a year later, I pointed out a mark that was whitish/pinkish, kind of scaly, itchy and slightly bigger than an eraser at the end of a pencil (lower left arm). He thought it would be nothing, but biopsied it and low and be hold, my second in-situ. More quarterly visits and a bit more than a year later (with some biopsies completed with atypical results) I pointed out a mole that was reminding me of my first in-situ; it was biopsied and two days later I got the call with my third in-situ (upper right arm). So….I am visiting my derm on a quarterly basis, doing my skin checks and using all types of sun protection. He believes that as long as we continue with the body checks, IF anything is found, it will be found early. He has been great and I feel very comfortable with him.
I am 60 to 70 lbs overweight and no where near as active as I should be. I am sure this does not help my body overall (especially from an immune standpoint).
I am getting to the point, where I am seriously considering going to a specialist; I live close to NYC and New Haven (Yale) to see what they say. But I think for the next 6 months I will continue with my current derm and quarterly visits (last visit was good / no biopsies); get my butt up out of my chair & move and eat healthier (have started that already). I am on the fence about seeing a specialist; I’m pretty sure that if I get one more in-situ I will be on the phone making an appointment.
As indicated earlier, it is a personal decision; will it help? I don’t know; if it makes you feel more comfortable and stable, then it might be the best decision.
Again, we are here for you. I will be thinking of you and sending good thoughts your way. We are all in this together!!December 21, 2012 at 6:33 pm #58090
how do “specialist” and “derm” differ?December 21, 2012 at 7:19 pm #58091 A true Melanoma Specialist. My derm is well versed in Melanoma, but he is not a specialist.December 21, 2012 at 7:35 pm #58092 Thanks for that detailed answer Laurie. I am 48, fair-skinned with green eyes and lots of moles and a few freckles. I too used to bake in the sun with little to no sun protection, and I also did the tanning beds 1 summer when I was in my early 20s. I used to burn and then brown. I could kick myself now – like you say, if we only knew then what we know now. I had a basal skin cancer removed 15 years ago, and went to the derm yearly since then until the 1st severe, when we stepped it up to 6 months. Since the 2 in-situs (diagnosed within a month of each other) I’ve been going quarterly, but it now sounds like it may be even more frequent than that. Does your derm give you the impression that this is likely to just continue for you or that eventually things will settle down?
That pink in-situ you had (amelanotic I assume?) sounds scary since I get pink spots on me now and then. I have a couple right now that the derm thinks is just eczema, but they’ve been there for months now. Was yours raised up or well-defined (sort of like a mole) , or just a flat patchy area of pink? I always assumed that if you got a 2nd primary it would be at least the same type as the first – obviously that’s not the case!!
I live a bit north of Boston, and see a very well-respected but quirky local derm who I like, even though he makes me feel like a ticking time bomb. I am close enough to go to a great hospital like Mass General or Dana Farber – I just don’t know what if anything they could offer, and like I said, I’m really scared to do it. I does help to know that I am not alone in this, although I wish none of us had to deal with it !!December 22, 2012 at 1:25 pm #58093Catherine PooleKeymaster
You absolutely need to go to a special clinic, Pigmented Lesion or Melanoma clinic. It sounds like you have many moles and need to whole body photography. Here is an excellent one to consider at Mass General:
Melafind or other new technology really aren’t that helpful because you STILL need a biopsy to find out if they are risky or not. But following your skin with photography (you and your doc) is great way to see if anything changes.
These clinics specialize in folks like you! I’m sorry you are down in the dumps, I too felt like my body failed me too when I had melanoma. But it kept it at low risk!
Try to find some holiday cheer and live in the moment each day. Let us know how you are doing.December 22, 2012 at 1:30 pm #58094Quote:
He said usually things settle down in a few years once your immune system finally figures out what it needs to do
Is that how it works? I hadn’t heard that before, but it sounds like at some point our immune systems kill future potential melanoma?December 23, 2012 at 7:37 pm #58095AngelaMParticipant
Cohanja, that’s exactly what I’ve been told by my doctors. They say the body goes through different immune phases in life, and that patients experiencing atypical moles and melanomas eventually stop getting them (if caught early that is).
Barb, this phase will pass. I too went through a bad patch with 3 melanomas in 2 years and many, many dysplastic moles. The fact that you had another severely atypical mole means that your skin is still active and you could get another melanoma. Just keep catching anything early and in time your body will get over this difficult phase. Hang on and stay positive. After all, you’re very much on the right side of melanoma!December 24, 2012 at 5:14 pm #58096Quote:
patients experiencing atypical moles and melanomas eventually stop getting them
Interesting. Logic would follow then that patients many years out wouldn’t need biopsies anymore, etc. . but I wonder what the stats say on that.December 26, 2012 at 1:44 pm #58097
Thanks for the replies. My appt. with the plastic surgeon is this afternoon and I’m nervous, especially since I haven’t seen the path report yet – he will go over it with me. I hope there are no surprises
Have things settled down for you yet? How often do you see your derm? Does your derm feel confident that he can stay on top of things just by more frequent skin checks?December 26, 2012 at 8:33 pm #58098WorrywartParticipant
Good luck at your appt today. Who is reading your slides? All same pathologist? With so many atypical/in situs I would make sure all my slides were spent to a specialist. Some people just grow ‘funny’ moles that would never turn into anything sinister. I’d want to make sure that wasn’t the case since you are having to be cut on so frequently. I’d work on boosting that immune system! Lots of fresh veggies and fruits, vitamin D, lots of sleep, etc. Hopefully this is the last one for you for a long time, if not forever. Thinking of you!
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