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When should I worry the most
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When should I worry the most

› Forums › General Melanoma Community › When should I worry the most

  • Post
    • July 6, 2019 at 4:17 am
    SteveR13
    Participant
      So I was diagnosed 3b last October. My Doctor (MD Anderson) didn’t believe additional surgery was necessary but I am on a one year monthly infusion of Opdivo. During this year I will also be getting scans every 3 months (Brain MRI/Neck Ultra/CT). I don’t question the need for any of this and I am happy to do anything I can to keep this disease at bay. I do wonder however when the biggest chance of reoccurrence is. Am I at the greatest risk during the first year of treatment? My mind tells me that if I’m on Immunotherapy and every scan was negative 3 months ago then the likelihood of anything being positive this time is quite low. Seems like a pretty short window for it to spread. Has anyone else experienced a reoccurrence during the first year while receiving treatment? Or even had it move to a higher stage when they were clean 3 months prior? I’m getting scanned on Monday/Tuesday so this is the time I typically think a lot about this. Any insight on this is appreciated thank you in advance.

      Steve

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        • July 6, 2019 at 3:01 pm
        Bubbles
        Participant
          Hi Steve,
          It sounds ~ mean? sad? ~ I’m not sure how to categorize this….to “say” this out loud, but the reality is that each and every one of us who have progressed, developed new lesions, growing lesions (however you want to categorize THAT) had clear or stable scans…..until we didn’t. Now, there are those who progress rapidly, against all odds, and those who progress many years down the road, against all odds, and those who do not – again against all odds. “Against all odds” doesn’t seem appropriate in so many different scenarios does it? But, in melanoma world, it kinda is. Here is a thread, posted below yours, that has some data in my response that you might find interesting regarding recurrence in melanoma and when: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/will-it-return

          NOW – as a person who is being proactive and taking advantage of early adjuvant treatment, we have learned that your odds of preventing progression/recurrence are much better!!! So, hang tough. Other folks may answer your question more specifically. But, as to when you should worry most? Always and as little as possible! Until we have a real live CURE for melanoma (and I do think that day will come!!) we are never completely out of the woods, but that just gives us more reason to seize each day and LIVE!!!!

            • July 7, 2019 at 4:59 am
            SteveR13
            Participant
              I had a feeling that was the answer but I thought I would ask anyway. Thank you for the response. I find I am usually pretty good mentally with all of this until 2-3 days before scan time and then I tend to overthink things. I imagine it a lot of people do.

              Steve

              • July 7, 2019 at 10:32 pm
              BrianP
              Participant
                Hey Steve,
                I think just about everyone experiences that prior to scans. Especially early on. You may have heard of this term already but around here we call that scanxiety. I’ve been getting scans every 3 to 6 months since 2011 and I still find myself getting short with loved ones or even withdrawn for the week or two before a scan. It does get better over time. Good luck.
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