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3rd PET Scan coming up, back to being nervous
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3rd PET Scan coming up, back to being nervous

› Forums › General Melanoma Community › 3rd PET Scan coming up, back to being nervous

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    • December 24, 2020 at 7:10 am
    DT1985
    Participant
      Hello folks, I’m back. I tried to heed the advice of many here which is to “live life” but I can’t help but worry between scans. However the anxiety def kicks into high gear when I have a scan coming up.

      Quick recap: Primary biopsied in Jan 2020. SLNB & WLE in Feb. Breslow of 1.5. – .5mm of melanoma on SLN. Doctor Postow at MSK suggested close observation, no treatments. Since Feb I’ve had 3 clean CT scans, 2 clean Brain MRI’s, and 2 clean PET scans. I also found out I was CDKN2A+ so I began to preemptively remove moles from my body. (5 more removed, all clean)..

      BUT!! I can’t help but worry. I’ve read a lot of terrible reoccurrence stories on this forum and can’t help but feel hopeless regardless of my NED status.  Dr. Postow put it at a 20% chance it reestablishes. My other oncologist is more concerned about new melanomas forming because of the genetic issue. Either way I feel like I won’t ever get out from under this…And the more I try to move on with my life the more I worry I’m becoming complacent.

      Question about reoccurrences.. How can the primary metastasize 3-5 years after being removed? Isn’t melanoma’s doubling time about 2-3 months? I wonder if these reoccurrence experiences are actually from new undetected primaries..

      I’ll finish with this bit.. a colleague of mine sent me a video of a guy giving a class about his melanoma experience. However it turned to be a pitch for Gerson Therapy. Not very compelling stuff given the enema bit. Anyone ever dabble in anything other than standard care recommended by oncologists? This experience can make you desperate. I’ve been taking turmeric once a day. Probably more placebo than anything…who knows.

      Anyways, Happy Holidays everyone. Cancer sucks!

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    • Replies
        • December 25, 2020 at 2:14 pm
        ThinkingPositive
        Participant
          Hi DT, I also wondered about risk of recurrence because I was supposed to be low risk, but in 3 yrs had metastatic melanoma. This article https://jamanetwork.com/journals/jamadermatology/fullarticle/2731995 might be a starting point to read about risks.

          Best wishes! Cindy

            • December 25, 2020 at 7:26 pm
            DT1985
            Participant
              Thank you for replying. May I ask what your situation was? I was look at the link now, thank you for posting it. Merry Christmas, hope all is well.
              • December 25, 2020 at 7:35 pm
              DT1985
              Participant
                Again thank you for replying, I looked through your previous posts and see that you were 2A, now stage 4. Very sorry to hear this. Did you not have a SLNB? What was the breslow depth of your primary if I may ask?
                • December 27, 2020 at 11:57 am
                ThinkingPositive
                Participant
                  Hi DT,

                  Yes, I had SLNB and it was negative. The Breslow was at least 2.2 mm, ulceration absent. My oncologist said she did not know why I progressed, maybe I had another undetected primary although I was going to dermatologist every 3 months. In one week, I will have my first PET after staring Keytruda. I’d like best case scenario please: complete response :yes:

                  Best wishes to you! Cindy

                • December 27, 2020 at 4:26 am
                Lilara
                Participant
                  I am sorry to hear about your diagnosis. My mom has also stage 2B in September 2017 and in April 2017 stage 4. You need to make sure they do the pet scan or ct scan every 6 months . In my mom case they just look through her skin no ct scan was done . I wish I knew this before . They did not have that as part of their protocol since she has a negative snlb.

                   

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