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  • #20886
    Eos99
    Participant

    Hi All,

    I have surfed this website long enough to be convinced that this is one of the best places to come for friendly and good guidance. While I am extremely grateful and thankful to have been diagnosed with melanoma in situ, I do have some concerns. Would love for help as I try to find that balance between dealing with melanoma-related issues but also simply living my life as joyfully as possible.

    Diagnosed with first ever melanoma in situ on left tricep Dec. 21, 2012. Resection of area Dec. 23rd.

    44 years old, female with dysplastic nevus syndrome. Very fair, brunette, hazel eyes. 100+ moles per appendage. Many moles show some or all of ABCDE characteristics. I have gone to good dermatologists (in Boston and Seattle, depending upon where we lived) at least every six months since my early twenties, and once every three months since moving to Dallas, TX eight years ago.

    Biopsies performed at the very end of November showed mole removed on left, front thigh was severely dysplastic. Two dermapathologists recommended (first ever) resection (12/17) which mercifully turned out to not be melanoma. However, we chose four additional moles to biopsy that same day, and the one on my left tricep turned out to be melanoma in situ.

    These two moles didn’t look the “worst” (i.e., most melanoma-like) of the bunch either under dermascope or otherwise. So, when you’re pasty white, “connect-the-dots”, living in Dallas slathering on goop and limiting sun exposure, what is the next reasonable step? :? :?:

    My dermatologist, who I trust (adore actually) and has done much clinical work at MD Anderson, will likely do additional biopsies through this April or May. She is generally conservative about cutting, but will probably remove 3-4 moles per month. Once the slice and dice has stabilized, my hubby will systematically photograph and organize/catalog the pics, using a high resolution camera, mole mapping, and even color mapping software.

    My role would be to examine my skin once per month to look for changes and/or new moles. Mark them with a Sharpie pen for the doc to look at should she choose. Then, go on about living my life. :D The hope/expectation is that we would get back to 3 or 6-month preventative skin checks.

    Is the above all overkill? 😮 My doc, hubby, and I all think this is a good plan (so perhaps that is my answer right there). ;) However, I do please wish for suggestions from you all. The dermatologist is truly lovely and has virtually no ego/God-complex. 😆 She is a good fit for us, and I’m confident that she will happily listen to any reasonable approaches.

    Again, I understand that I am extraordinarily fortunate to have caught this first melanoma in situ. I do have decent perspective on that score. However, the sheer volume of atypical moles makes me unsure as to the best next step(s). Many thanks!

    #58232
    Catherine Poole
    Keymaster

    I am married to someone with dysplastic nevi syndrome, his mother had melanoma and so have I. Despite this, I feel like his follow up is fine: he had the whole body photography done and he and the doctor have a copy. He goes in annually and they do a full body exam comparing it to the photos. He hasn’t had any biopsies so far and no melanoma either! He is very careful with sun exposure. So everyone has to have their own plan I believe and I err on the side of being conservative with biopsies. But what ever gives you peace of mind is most important. Happy New Year!

    #58233
    Eos99
    Participant

    Catherine,

    Thank you very much for your reply. From reading previous threads last week, I’d seen both that your husband has dysplastic nevi syndrome, and that you are (generally) conservative about biopsies. Again, thanks so much for sharing. Happy New Year!

    #58234
    Lisa P
    Participant

    Hi there. I, too, have dysplastic nevi syndrome and have been sliced and diced a bunch since my first diagnosis of melanoma, which was about two years ago. Recently, after talking to a bunch of pathologists and others about my case, my doc decided that we’re going to take another tact. She believes that almost every mole on my body is abnormal, but there’s no assurance any will actually morph into melanoma. In fact, she said most melanoma present on new skin as opposed to in changing moles. Therefore, she is using my grid photography from two years ago to determine whether anything is new or has evloved. In either case, we’ll do biopsies on those. I think it would be really smart for you to have professional grid photographs done as soon as possible. One other thing I do is have a second set of eyes look at me. I found a specialist at Seattle Cancer Care Alliance, who is wonderful. Finally, my doc recommended Sunguard wash in sunblock that works on natural fibers, creating an SPF 50 om your clothing for about 20 washes. Other than that, it sounds like you’re doing everything right. Take care, breath deep, and enjoy! Also, keep in touch on this forum. It’s a Godsend when you need support. Happy New Year, Lisa

    #58235
    Eos99
    Participant

    This is why forums can be great. I have friends who say, “Why would you go to an online forum for medical advice?” Well, frankly, it’s not medical advice I’m looking for as much as other helpful info (e.g., a wash that can allegedly put SPF 50 on your clothes). I had no idea such stuff existed, thanks! :D

    I “think” this bad boy on my tricep was “de novo”, but I can’t say for certain because I’m a sea of freckles and moles. My dermatologist essentially subcontracts out the professional photographs. It may sound foolish but my husband found two different forms of software and some hardware that enable one to use a high res camera to take very, very good pics. Perhaps more important than that is the use of good lighting, consistent position/placement, camera rail (to ensure same distance in each photo), accurate measurements, and a way to systematically reporduce the process each year so the results are meaningful/usable. My better half is not in the medical field, not even close! 😆 But, he works in high tech so we’re very fortunate to have a lot of “gear” (incredible cameras, multiple computers (Mac & PC), high end 30″ monitors displays, etc).

    I will certainly defer to the docs and go wherever for the “glamour photos”. 8-) But, I have to admit that this whole sitch reminds me of what a friend (former boss) wrote in an article for the WSJ about the experience of looking for work. “No one cares about your job search as much as you do.” Although I certainly don’t wish to put words in your mouth, Lisa P., I believe you may have expressed something similar to that in another thread.

    This is all a sucky, happy reminder to live in the moment. Again, many thanks and I welcome additional suggestions thoughts. :D

    #58236
    cohanja
    Participant

    For what it’s worth, I agree with Lisa’s comment about “second set of eyes look at me”, I do the same thing. One thing I’ve learned through all of this is there is a lot of subjectivity & judgement in this, it’s really more of an art than a science. What one Dr thinks is harmless, another thinks is suspicious. So, I don’t care how good a particular Dr is, I don’t want to rely on just one set of eyes, one perspective, one judgement. . I want at least another set of eyes looking at my skin, so I alternate and I’m very direct with the doctors as to why I do that.

    #58237
    Eos99
    Participant

    cohanja,

    Thanks! Oops, I had meant to address that part of Lisa P.’s post. A week ago my husband did say he wants to have a second dermy look at me periodically even if we have to pay for it. I agreed to do that.

    Thank you again, and Happy New Year!

    #58238
    Lisa P
    Participant

    Most insurance plans cover second opinions so you should be ok if you have insurance. Regardless, it’s a worthy expense. Take care and keep us posted, ok? All the best, Lisa

    #58239
    Eos99
    Participant

    Thank you, Lisa. :) Keeping you posted:

    At follow-up appointment yesterday, we decided to take 3-4 moles weekly instead of monthly in the near future.

    I’m cool with small scars. While I don’t wish to overreact or underreact to the one known “in situ”, given my melanoma risk level (high) I can’t see the downside of multiple biopsies at this time. Plus, the dermatologist prescribed an antihistamine (levocetirizine 5 mg, generic for xyzal) that has greatly reduced the maddening itching that came out of nowhere with biopsies beginning about two years ago. We had tried to isolate and rule out all possible culprits, including any allergy to latex, antibiotic ointments, adhesive, lidocaine (all the “caines”), and buffering agents, etc.

    Using only saline injections, aquaphor, and nonstick pads & wrap, I would still have the itching about 36 hours post-biopsy, and it would last for at least 36 hours. With levocetirizine and attention to dressings used, the itching is currently a non-issue. :)

    So, do I get a second set of eyes on me when I am willingly a weekly pin cushion? 😆 I now can’t figure out for myself what a reasonable person would do on that score.

    Also, please all brace yourself for a (another?) dumb question: Is there any info/data on how long “in situs” generally exist before becoming invasive? :?: I imagine it depends on the genetics of an individual as well as environmental and/exposure factors. (Plus, I’ve read, right or wrong, that many “in situ” never turn into invasive melanoma.) I’m finding it’s actually a difficult question to search and find answers from reputable sources. I’d really appreciate any insight anyone may be able to share. TIA! :)

    I’m willing to undergo biopsies, do monthly self-checks, and full body photography to try and catch any future primary melanoma (hopefully) in situ. After that, I’m off to keep pursuing other passions.

    #58240
    Worrywart
    Participant

    Hi there!

    I’ll share my experience. I was diagnosed with melanoma at age 34 in 2008. When I was first dx I saw 3 different dermatologists. One at the University of Colorado Cutaneous oncology unit, a local PA, and another derm that specialized in skin cancer. I had to pay out of pocket for the University of CO because it was out of network (i have Kaiser)although my insurance did cover mole digital photography. I paid up front and was surprised to receive a reimbursement check later on. It gave me peace of mind to have 3 different set of eyes looking at me. The PA was the one who discovered my mel, although she was convinced it was nothing and was focusing on some other black moles on my abdomen that were more worrisome to her. AFter my melanoma dx, the PA (who discovered my melanoma) was totally CUT happy. She took off like 2-3 a visit! I had a total of 12-15?? (lost count) removed until we all felt comfortable with what a normal mole looked like for me. I did have several mild atypicals. The other derms I saw at the same time never removed anything off of me. I slowly became comfortable in my own skin. I now see only one derm, and I decide what comes off…if it bugs me, it comes off!

    As for which in situs turn into invasive mel and which don’t…the problem is, no one knows. Just tell yourself that that mole may have never advanced but JUST in case….you got rid of it. It was a blessing really, cause now you know to be aware of your skin and to protect yourself from future sunburns.

    I’m almost 5 years out, and I don’t think of melanoma that often at all anymore. I have to remind myself to check my skin or else I’ll forget.

    Happy New Year!

    Melissa

    #58241
    Eos99
    Participant

    34 years young. Wow! I am happy for you that the experience has receded and you now think of melanoma infrequently. :)

    Okay, so I wouldn’t be off my trolley to have a different set of eyes look at me. 😆 Thanks very much for the input. Your having chosen to have three people look at you makes me think two might not be so wacky on my part. ;)

    Many of my moles are very melanoma-looking. The doc really wished to take off 5 not 4 yesterday. But, apparently insurance will cover only 4 per visit. I told her I would happily pay for the 5th (about $300) if she thought it should be done. She decided it could wait until next week.

    Once this flurry of activity slows down, I expect we’ll be able to focus on any moles that have changed and/or any “de novo” that look particularly funky.

    Thanks again, worrywart! :)

    #58242
    Lisa P
    Participant

    Hi, Eos. I’d like Catherine to weigh in here because my understanding is that “demoling” isn’t necessarily a recommended course of action. Take it from one who knows in that I have had more WLE’s in the last two years than anyone has a right to have. I’ve been sliced and diced every which way. Every time a mole looked even slightly questionable from the ABCDE standpoint we biopsied it, with the vast majority coming back as moderately atypical. There was one mild and one severe as well. In the meantime, once you’ve biopsied something, it has to come out. Moderately atypical nevi usually call for somewhere between a 3mm and 4mm WLE. Anyway, my skin cancer specialist finally spoke with a bunch of pathologists and did some research because she felt bad about cutting me to pieces. The result was the pathologists agreed there is no way to judge for certain that an atypical mole will, in fact, morph into melanoma. As I make atypical moles (90% would probably come back as such), the thing we’ve decided to do is as follows: 1) Remove without question ANYTHING that’s new from when my grid photos were taken two years ago. 2) Remove any mole that has evolved or changed in size, shape, color, texture, etc., since the photos were taken. And that’s it. I have three sets of eyes on me (once a month with my regular specialist, once every three months with a specialist at Cancer Care Alliance, and once every six months with a specialist at the University of Washington). In between it all, I’m trying to learn how to live my life without being afraid all the time. It’s a tough lesson,but a worthy one. Again, I hope Catherine reads this and can provide her view on doing routine biopsies. In the meantime, take good care and a healthy new year to you, Lisa

    #58243
    Eos99
    Participant

    Hi Lisa,

    Thank you very much for your response and information. :) I very much look forward to further input from Catherine should she wish! I hope I am not the newbie wearing out my welcome. :(

    If I had previously done grid photography, then perhaps I would not be so (relatively) open to biopsies now. This first “in situ” didn’t look particularly melanoma-like to the naked eye, or to my very experienced dermatologist under dermascope. With over 700 moles (many atypical) over my entire bod, it is reasonable to assume I may have at least a few more “in situ” currently. What are the odds that I would have found the one and only melanoma in situ on my bod?

    I would imagine they are only going to recommend re-excision if the additional come up severely dysplastic, in situ, or invasive. Prior to this, I believe mine had come up mild for the last twenty+ years. I assume I am permitted to decline any and all WLE for moderate or less. (I believe most of mine have been “mild” until now, but I will check.)

    So, to me, 2 layers consisting of 5 dissolvable stitches underneath 5 visible stitches is a small price to pay for trying to ensure that we catch anything (dare I say everything?) in situ? This type of re-excision has been suggested to me only twice total in approximately 25 years of biopsies, where good dermys took anywhere from 0 – 4 moles at one visit.

    I would very much welcome the thoughts, feedback, and ideas of anyone, no matter what stage his or her particular diagnosis. Thanks again Lisa, and thanks all!

    #58244
    Worrywart
    Participant

    In response to Lisa – I’ve never heard of 3-4mm for a moderately atypical. My derm just removes them completely with initial biopsy (usually punch or shave) and does not recommend taking margins on mildy or moderate…just severely atypical. With the mild – he even leaves margins involved sometimes and we watch for change.

    In response to Eos99 – you have to do what makes you comfortable right now. You seem to have a TON of moles! Did you really mean 700???

    #58245
    Eos99
    Participant

    Melissa,

    Thanks so much for weighing again. I sincerely appreciate it.

    While I understand your question regarding margins was addressed to Lisa, I believe that my dermatologist used 5mm for my melanoma in situ.

    Yes, that was not a typo. I really do have 700+ moles/freckles. My mother is an extremely fair-skinned red head with huge blotchy freckles over her entire body, while my father has pale skin, brown hair, and DNS.

    I took up avidly competing in an outdoor sport here in the south about five years ago. Haven’t always been able to avoid the peak sun hours of 10-4pm. While I always wear a hat, I’ve often worn short sleeve shirts or even tank tops along with capri pants or shorts during competition. (During the summer we get a fair number of 100F+ days, and the humidity/heat index in Houston, Louisiana, and Mississippi can be pretty brutal.) Despite slathering on more high quality sun screen than I thought possible, I have noticed new moles and freckles appearing. No one has suggested I give up my beloved hobby, but I suspect I’ll have to find long sleeve/full pant length UPF clothing, along with a wide-brimmed hat rather than only a baseball cap.

    A little over 20 years ago there was a period of time when I used tanning beds frequently. It is embarrassing to share that I actually thought I was being “smart” about it. That is, I thought I had done my homework. The place I went offered only UVA beds, and provided articles from independent sources touting UVA as a “safe” way to tan. I found some additional research that seemed to corroborate that UVA beds were safe. (Man, the above sounds so stupid; I’m mortified, but understand that berating myself won’t do any good.) As everyone on here knows, along with most of the general public by now, no tanning bed is remotely safe; they’re carcinogenic.

    De-moling may not be the way to go. Full body photography may be most helpful in managing this, focus and changing moles and/or suspicious “de novo” ones. I guess I need to take more time and get additional input from kind folks to help me figure out what makes me comfortable.

    Thank you again, Melissa. :)

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