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Scans for Stage One – two years out
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Scans for Stage One – two years out

› Forums › Cutaneous Melanoma Community › Scans for Stage One – two years out

  • Post
    • May 28, 2018 at 3:50 pm
    lisa joy
    Participant

      Hi! Thank you to everyone that has been helpful on this site/board for those of us still learning about Melanoma. 

      I am two years today from finding my stage one melanoma. I have a question regarding scans. 

      I seem to have a very proactive melanoma doctor. After my surgery to remove my melanoma (Stage 1A, .75mm)… I had a brain MRI, and a full body PET/CT scan along with one lymph node removed. All was clear. 

      For the past two years, I've been going to my derm and my surgical oncologist every three months to check skin and lymph nodes. I've had several more moles removed but all are fine. I also had the Decision (Castle) test and I was Class 1 risk. 

      My surgical oncologist suggested I have another full body PET scan since I'm at two years?! I just don't understand why?  I've read where scans at my stage are not necessary? AND my insurance doesn't cover it and I truly don't want to pay another $5000 out of pocket. 

      My dermatologist tells me it is not necessary. I just wanted to post here and get anyone's thoughts on it. 

      Thank you so much!

      Lisa

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    • Replies
        • May 28, 2018 at 6:20 pm
        jennunicorn
        Participant

          Absolutely not necessary and certainly an unessesary amount of radiation. I am stage 4 and my insurance no longer pays for PET scans because I am no longer on treatment…. there is no way I would pay out of pocket for a PET scan. No one at your stage would get any scans at all, so I would take your good health for what it is and continue on with skin checks. 

            • May 28, 2018 at 7:19 pm
            Go_Cats215
            Participant

              It does seem like your doctor is very proactive based on the initial stage 1a melanoma. In general, I love doctors who are proactive, but since everything has been great news (congrats!!) for the past two years, I would try to find out more information about why this is recommended in your particular case. Mainly I would want to know whether this is their preferred standard of care, or if they are considering you high risk for other reasons (family history, for example). 

              • May 28, 2018 at 11:13 pm
              lisa joy
              Participant

                Thank you very much for your response! I truly don't want more radiation and I don't believe it is necessary. I feel at times this doctor may get upset if/when I question him, but it's my health. I don't have any family history of cancer at all. Years on the beaches and in tanning beds too. 

                Thank you again!

                Lisa

              • May 28, 2018 at 11:43 pm
              BillB
              Participant

                Hi, I’m in agreement with everyone else but I also deal with the uncertainty of this every day. I might suggest doing a phone consult with a melanoma specialist at one of the major cancer centers ( MD Anderson, Memorial Sloan  Kettering, Dana Farber etc) it May ease your mind.

                Bill

                  • May 29, 2018 at 2:49 am
                  lisa joy
                  Participant

                    Thank you! That's a good idea. 

                  • May 29, 2018 at 4:20 am
                  Janner
                  Participant

                    Personally, I don't consider this proactive at all.  Money making, yes. But so overkill for your stage that I seriously question this.  There is a reason your insurance won't pay.  We know insurance is always problematic but usually later stages can get insurance to pay after some "coaxing".  I seriously doubt you'd ever get insurance to pay for that scan unless you were symptomatic.  Even seeing an oncologist at this stage is pretty much overkill.  He cannot offer you anything more than your derm at this point.

                    Janner, stage 1B for 26 years, 3 primaries.  The only scans I've had were when I had symptoms – discovered other issues but not melanoma.

                      • May 30, 2018 at 7:24 pm
                      lisa joy
                      Participant

                        Thanks Janner… it is tough standing up to these doctors and telling them no. I truly feel like it's not necessary and I can't afford another $5000 of scans without any symptoms. 

                        Thank you!

                        Lisa

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