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2 unchanged moles BOTH are melanoma

Forums Cutaneous Melanoma Community 2 unchanged moles BOTH are melanoma

  • Post
    MeganD
    Participant
      10 years ago my derm removed a smaller than a pencil eraser “ugly duckling” mole I had since I was a teenager. It had not changed in 30+ years. It turned out to be a thin melanoma. Fortunately it had 0 mitosis and no ulceration.

      5 years ago, they found a melanoma in situ…same story..no change since I was a teenager.

      Last week, 10 years after my first diagnosis, another thin melanoma, also with 0 mitosis and no ulceration. Again, no visible changes and I compared it to my skin pics taken 10 years prior.

      I feel very fortunate these are being found early, but shaken by the multiple instances. However, I have NO IDEA what I am to look for on my skin since my “bad” moles do not visibly change. The path reports come from the very reputable UCSF.

      Has anyone else experienced this?

      Thank you.

      M

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        Danielle T
        Participant
          I am assuming they aren’t changing enough that you can tell from a picture but they are changing from a dermascope perspective. I would recommend going onto Amazon and purchasing a tool you can use at home that will take magnified / lighted images of your moles – the tool can attach to your I-phone. That way you can take up close pictures monthly of the moles you are concerned about and see if they change in any way.  I bought one initially for $11 which worked fine but did upgrade to a $100 one recently.

          Have you asked your dermatologist what they think? What prompted them to remove the moles if they had not changed?

          MeganD
          Participant
            Hi Danielle –

            I very much appreciate your response and suggestion for purchasing a dermascope.

            To answer your questions:

            • I have always had “higher risk” skin (> ave # of moles, dysplastic moles, very fair, sun “worshiping” when I was young) so my derm has always removed a mole here and there for many years at every visit. She literally walked into the room one day, pointed to a spot near my knee and said, “let’s remove this one today” as it was a shape unique to my other moles, but present since my teen years. She looked at it with a dermatoscope and said it looked fine, but wanted to remove it anyway. That was Mel #1.
            • My In situ: Same story. A little different shape from the others. It took UCSF a while to figure out what it was because it seemed to be on top of a scar from a bug bite (mosquito, likely).
            • Mel #2: My derm was on vacation, so a different derm conducted my skin check and looked at a mole that I had since I was a teen and unchanged to my eye and looked unchanged from my mole map images. Derm was iffy on the dermotascope view of it and wanted to remove it. FYI, my skin is checked carefully by derms every 4 months including by a former head of UCSF Melonoma clinic so this has been looked at recently and many times before.

            What concerns me, besides the obvious, is finding these seems so random. Feels like I am playing Russian Roulette and when I ask the various docs about this, I simply get a, “we will keep a close eye on you”. Hard to relax.

             

            Danielle T
            Participant
              Your case is definitely very concerning as melanoma patients feel security with no evolution.
              What type of melanoma are they saying these lesions are? Certain kinds like nevoid and spitzoid are very difficult to identify versus a benign lesion as they have characteristics of both and doctors (rightly so) tend to be more aggressive. I would ask if your dermatologist is willing to send one to genetic testing. I am actually waiting for the genetic results of a T1a spitzoid melanoma as there was uncertainty in its malignant potential and the genetic test will tell us more definitely. I’ve come to learn dermapathology is an art and science.  My melanoma had significant changes though.  The genetic test costs $8,000 dollars and insurance doesn’t always pay but somehow my dermatologist convinced them to do it for free. I’m assuming it’s being used as a learning experience for them too.
              I am similar to you with 3 melanomas:

              spitzoid in-situ 2011

              spitzoid T1a and nevoid in-situ in Dec 2020.

              all had changes.

              By the way, the tool you can buy is not an actual dermascope but it’s amazing how much you can see.
              The $11 one was super eyes macro lens and the $100 was dermlite. The main difference is dermlite comes with a light.

              there’s not a lot of people on here who comment on stage 1 cases so I appreciate finding someone like you on here

              MeganD
              Participant
                I agree! Great to have another one who has 1A.

                You know, I have never seen any of my path reports, but I will certainly ask for my last one asap.

                Interesting about the genetic test of your Mel. Q: What is the benefit of doing this?

                FYI…I am in the Bay Area. What part of the country are you in?

                 

                Thx!

                Danielle T
                Participant
                  I’m in the Philadelphia area.

                  You definitely need a copy of your pathology reports.

                  The genetic test purpose is 1) god forbid if your melanoma was to ever progress this will inform doctors on what treatment is most likely to work 2) for our situation now it reduces  any gray area related to a pathology report.  If you do some research, you will find that it’s not that straight forward to diagnose a melanoma. I found some articles that said even if you gave the same pathologist the same lesion twice they often come up with a different diagnosis. As a result, doctors tend to be more aggressive – so if it might be melanoma they’d prefer to say melanoma so you get the best treatment. 3) I’m not sure if this is true for every melanoma but for spitzoids there’s a range of malignancy. The genetic test can tell you where your lesion falls in that range.  My understanding is dysplastic moles by definition share attributes with melanoma. It should help add clarity to your diagnosis. It will also inform you on whether or not you have familial melanoma, which comes with other cancer risks. I can let you know when I get mine back and how helpful (or not) it was. I’m hoping for results that show the legion is actually low risk.

                  I am praying for both of us to happily stay in stage 1 and never experience another primary. I know it could be so much worse but there’s still a lot of anxiety that comes with multiple primaries and thinking every spot on your skin is potentially one that could kill us.

                  MeganD
                  Participant
                    Please do let me know and I will investigate also getting the genetic test as what you are sharing is very interesting.

                    I too recently read some of the same type of articles. A melanoma pathology is not binary at all, but more a “possibly” based on indicators.

                     

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