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Post-melanoma paranoia?

Forums Cutaneous Melanoma Community Post-melanoma paranoia?

  • Post
    RedRidingHood
    Participant

      I'm 25 and I had a Stage 1 melanoma excised about a month ago. It was barely anything… my doctor called it "more of an inconvenience than a crisis". And yet… I can't stop obsessing over every other mole on my body. I think that issue is that my Dermatologist was completely shocked that it came back as melanoma. It was the tiniest little black dot – it didn't fulfill any of the ABCDE criteria. He says he only biopsied it because it popped up recently. I had another one biopsied at my next visit – and again he said, "I really don't think this is anything, this is just to make you feel okay about it" – and it came back as a dysplastic nevus. So I'm left feeling like there's no way to really know if something is up. 

      My dermatologist has said that I should trust my gut and if I want him to biopsy something, he will. But I'm nervous that, given free reign, I'll honestly want to biopsy every mole on my body… and as a red-head, freckle-covered person, that's going to be a lot of little holes. I know the whole, "look for anything new or anything that changes", but when you have inumerable freckles and dozens of moles, it's really, really hard to know what's new. I'm driving myself crazy every week trying to remember if some mole I just noticed is new or not. 

      So I guess my questions are… a.) How do you not want to cut every mole off? b.) How many biopsies did you ask for in the first few years after your diagnosis?

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    • Replies
        Susanlee528
        Participant

          I am exactly where you are. I have had a couple extra biopsies that I probably didn’t need. But I’m glad I did because I would’ve been worried about them until I did it. I can’t give you any advice as to how not to feel that way because I’d like to know that myself! But you’re not alone. I’m sure everyone on this site understands what you’re going through!

          Coragirl
          Participant

            Hello, my husband's dermatologist takes photos of his skin. This way she can look at the photo from his last visit and compare it with anything she might see in his exams.He also has had many removed, that came back fine. Try not to worry too much, practice sun safety and see your dermatologist

              QuietPoet
              Participant

                Hello to everyone on this thread. Last night, I was thinking about writing about this topic because I had a 1A mole that was excised last year at this time. Since that time, I've been pretty obsessive about my moles because I have a lot of dysplastic nevi. But I also hesitated to post this just because so many people on this site have advanced melanoma, and I didn't want to insult anyone.

                Here's the deal — take pictures of your body parts overall and moles in particular. I purchased Molescope to keep track of them, and I find it to be somewhat helpful, but even better is just taking pictures of the overall body parts so I can count the moles and see if they've changed much from month to month. Look for changes in your moles and for new moles, but don't bother doing that more than once every 3 weeks to a month. One's skin changes from day to day.  I was been freaking out over every thing, and I was sure I had a recurrance in my scar with a raised area with a slight change in color. It was actually  a stich that reared itself through my scar. The point is that skin is a living, dynamic thing — the largest organ in/on our body. It's going to have little changes here and there. And when you're 25, you're definitely still getting new moles.

                The keys are to photograph, look for change, don't tan, and use sunscreen all the time — including your hands/feet when they might be exposed (i.e., driving). 

                Since most people who have had a melanoma never progress and never develop another one, the people who are on this site are the exceptions/anomolies, not the norm for 1As  (sorry — don't need to offend anyone). That said, I stay on here because I teach science writing, and the way I personally deal with something that disturbs me is by gaining more knowledge, and the people on this board are extremely knowledgeable. So — in the highly unlikely case I ever do progress — I know what to expect. But, from now on — on each NED (no evidence of disease) anniversary — I shall post an update that I'm still NED to reassure all of us 1A people who do worry as I have. Yesterday was my 1 year anniversary with no melanoma. With each quarterly check, I feel more comfortable — the anxiety ebbs and flows — but it will get better. You will be fine. Live your life. Take care of yourself.

                All the best!

                Erika

                QuietPoet
                Participant

                  And to add on a little bit — I've had 3 biopsies that were not melanoma, and my scars don't heal well. I'm not pleased with how I look with these biopsy scars. That's part of what keeps me from freaking out too much — knowing that the change needs to be pretty obvious to risk having another nasty scar.

                  I would love it if some research money could go toward finding some other way of identifying melanoma other than biopsy. I don't want to look like Swiss cheese.

                  Skelly
                  Participant

                    Thank you for the message.  I too am taking the same path as you have done.  If I have a recurrence or second primary, I want to know what to expect.  

                  laurakoco
                  Participant

                    I think if I had my way I would cut every mole off, but my Melanoma specialist says my moles are ok. They just found a Melanoma 1A a month ago. They told me 20% of Melanomas come from existing moles and 80% from new moles. To have peace of mind I track my moles by taking photos of them on my phone periodically. That’s how I found my primary Melanoma; a mole I had taken a picture of had changed in border and color from six months prior. My dermatologist wouldn’t have noticed it unless I pushed for a biopsy. Remember you know your body best! Now I am seeing my specialist every 3 months so they’ll keep track of any changes too. 

                      RedRidingHood
                      Participant

                        How do you do that exactly? Do you not have many moles? I have moles and freckles on every part of my body, so I tried to take just pictures of each limb but I feel like I wouldn't really notice if something changed. 

                      JC
                      Participant

                        this is a totally "normal" feeling to have.  i'm 7 years out and it gets better with time.  

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