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New Diagnosis

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  • Post
    • June 27, 2018 at 3:24 pm
    mmmm
    Participant

      Hi everyone!

      I am recently diagnosed with stage IIIb melanoma and I am wondering if those with a little more experience can give me some advice. The posts here have given me a lot of hope in the last couple weeks.
      After an excision and SNLB, they have found two small melanoma deposits (0.5mm) in the one lymph node they took out. I just recently saw a surgical oncologist and am seeing the medical oncologist and dermatologist in a little over a month.

      She said that from here, its likely that there will be no further treatment aside from ct scans every six months.I guess this is also dependent on whether i have the BRAF mutation or not, which I'll find out in a months time. I'm wondering, after doing some googling why its a ct scan and not a pet scan. I'm in Canada by the way, not sure if this makes a difference. She also said none of this is extremely time sensitive, and that everything is so tiny that I shouldnt really worry. I guess I'm mostly having a hard time figuring out how serious/ bad this is. Every step of the way, they've told me that based on the biopsy/thickness/mitotic rate that it was unlikely to go further, but I just keep getting more and more bad news.

      Any advice is greatly appreciated, I'm feeling very lost and helpless right now. It seems crazy that all i can do is essentially wait to see if it gets any worse. 

      thanks in advance 

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        • June 27, 2018 at 5:56 pm
        Threefitty
        Participant
          I became a 3b 16 months ago. Today I am completing a year of treatment in a clinical trial.

          Without that opportunity, i would have done Yervoy as standard of care, and was against wait n watch, but the CT allowed me a chance at opdivo. It seems I got lucky, the study is blind but I have few side effects. Meanwhile, in the last year opdivo got FDA approval for stage 3’s.

          I guess you need Canada specific info, but I would have a hard time with my doctor telling me waiting and watching was my only option.

          That video linked on the board today makes the point well, be proactive, learn and don’t be passive with doctors. Especially if you don’t have a melanoma specialist.

          Welcome.

            • June 27, 2018 at 10:55 pm
            mmmm
            Participant

              thanks for your response! I don't know if Canada has the same access to trials, but I guess its early days for me and I'll find out with some education. All she said was that interferon was off the table cause of the size of the deposits. Thanks for your advice, I really appreciate it.

              Also just want to link myself to this thread because I accidentally hit post anonymously 

              • June 28, 2018 at 12:00 am
              Linda5
              Participant

                https://www.melanomanetwork.ca/

                 

                here is a Canadian organization with info on treatments and provincial funding.  They also have contacts for melanoma centres and melanoma specialist (highly recommend as recommended treatment changes so fast). There are certainly trials depending on where you are…recommend getting to a major treatment centre if you can!

                good luck!

                linda

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