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  • #21216
    tlmccann
    Participant

    Hello all,

    Here is my story so far:

    2012 – first in situ diagnosis by local dermatologist.

    2013 – 3 melanoma in situ diagnoses determined

    by UPENN.

    I recently spoke with my doctors and they are telling me that it’s possible when my biopsies are read by pathologists it is likely that a majority of the time the result will be melanoma in situ. It could mean that my moles may never advance into metastatic melanoma that its just my body creating weird looking moles?? She emphasized that all of this is purely speculation and they cannot confirm any of this. Does anyone know of a credible online or human source that could give me more detailed information on this possibility??

    Should I look into getting yet another opinion?? I’m again feeling very anxious that my body is covered with melanoma in-situs. And feel helpless at the lack of clarity this type of cancer presents!! I’m really not sure what the best thing to do is and would appreciate any information.

    Best Regards!

    #60253
    Catherine Poole
    Keymaster

    Are you going to the Pigmented Lesion Clinic at Penn? Maybe they need to spend more time with you and explain things. Sounds as if you may have dysplastic nevi syndrome which means many “funny” looking moles. This in turn sometimes makes you more likely to have melanomas, but catching them at very early stage. You are going to the best in this area, but maybe you’d like another opinion at Hopkins? Or Sloan Kettering? They are not too far awy.

    #60254
    jensean
    Participant

    I have dysplastic nevi syndrome. I have had three melanomas since my first diagnosis in March 2012. I have had dysplastic moles since I was a teenager. I am now 41. Every mole I have had removed comes back as “mildly atypical” since, of course, my melanomas. My first one was stage 2a, second one stage 1b, and third one stage 1a. Pathologists have normally now been diagnosing “severely” dysplastic moles as “melanoma in situ”. I don’t whether it is a legal thing or just because they find that severely dysplastic moles are really melanomas on the top layer of your skin that have not become invasive. I am still at increased risk of more primaries and need to be followed every three months for the rest of my life.

    #60255
    Lisa P
    Participant

    You and I sound very similar, Jeansean. I have also have dysplastic nevi syndrome. with the vast majority of my biopsies coming back as moderately dysplastic. In between those diagnoses, I had three melanomas. One was insitu, one was .23mm and one was .50. My doctors and I recently decided to stop biopsying all strange looking moles, with the exception of those that might be new or evolving since my grid photography was done two years ago. It is a relief to not be all stiched up all the time!

    #60256
    Catherine Poole
    Keymaster

    Photography is the best way to follow folks with dyplastic nevi, it is the only way to truly see change over time as the eye can be out of sync with memory! So continue on the path and you will hopefully not have more melanoma or catch it very early.

    #60257
    jensean
    Participant

    You are right…..digital photography is the best way to follow dysplastic nevi syndrome. It would be impossible to remove every single dysplastic mole I have. I have well over 100 of them. What I need to worry about is whether there is a “new” one that pops up in between my three month visits or a “change” in a preexisting one. Other than that, there is nothing else we can do. It is basically a watch and wait type of syndrome. It kind of sucks because I am a very proactive person. I did read about an active clinical trial, phase II, that is not accepting any participants, where they are using lovastatin once a day for patients with dysplastic nevi syndrome and/or a history of early melanomas. Supposedly, there are studies where lovastatin has helped decrease the dysplasia in the nevi or something to that effect. I am curious to learn more about this study and the results they have come up with.

    #60258
    tlmccann
    Participant

    Hi All,

    Thanks for taking the time to reply to my post. I see doctor’s at UPenn’s pigmented lesion group and they use digital photos that were taken in April of 2011 to monitor my moles. I’m supposed to check myself every month, but it’s turned into a daily event ;). I’ve had several moles removed, not sure what age my first mole was removed but I must’ve been a teenager (I’m now 42). My first in situ was discovered by my dermatologist in June of 2012 because it was new and not on my photos. Since then I’ve discovered the remaining melanomas.

    If my body does indeed create odd moles, mimicing melanoma when examined under the microscope…then wouldn’t all of my biopsies come back as melanoma and not just a few????

    Thanks!

    #60259
    jensean
    Participant

    That is a good question?! I have not had one biopsy come back as a “normal mole”. My first one, like you, was taken off in my early-teens and since then I have had maybe 20 biopsies; all of them were considered “mildly atypical or dysplastic” moles. My first melanoma was at age 40 so I am not sure what sparked the “melanoma” to start developing. I know a lot of it has to do with your immune system so maybe since we have so many dysplastic moles that our immune system is not recognizing the “melanoma cells”. It is a mystery to me. I am on melanoma #3 all in one year’s time and actually have to go tomorrow to get a “very suspicious” mole off my lower back. It definitely looks like my previous melanomas so I am expecting the worst and praying for the best. Obviously we can’t get all of our moles removed so digital photography is the only way they know which ones to biopsy but it gets to a point where you just want to throw your hands in the air and scream. I have new dark “freckles” appearing all the time. It definitely is very frustrating to deal with on a daily basis. Best of luck to you! :)

    #60260
    Jdk27
    Participant

    I just had my 3rd melanoma removed two days ago. April 9th I had 2 pre Mel and 2 melanomas, .26 and .33 removed. So five issues in two months time. I, too, am anxious and wondering what is going on. While I was having my surgery two days ago, they also took three more moles. Waiting to hear about them. I do keep seeing more brown spots showing up, (some of my Mel’s started that way)

    I am guessing this is what I am to expect for the rest of my life? Thank you all for sharing, this has helped me a lot, reading what others have to say, who have been through it.

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