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When can you consider yourself a Melanoma Survivor instead of a patient?
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When can you consider yourself a Melanoma Survivor instead of a patient?

› Forums › General Melanoma Community › When can you consider yourself a Melanoma Survivor instead of a patient?

  • Post
    • February 18, 2019 at 11:43 pm
    HeidiZ
    Participant

      Diagnosed in April 2015. Progressed to Stage IV February 2016, had 4 doses ippi/nivo and there after 16 of keytruda. Stopped treatment August 2017, my body was to inflamed so I had my first pet scan and 2 others since stopping treatment.  I feel truly fortunate that my last three Pet scans show no uptake but wondering when counting 5 years out do you start counting from last treatment, or when I first became stage IV. I started my first treatment March 2016 so next month it will be 3 years since then.  Of course, I’m also waiting for the other shoe to drop every time I go for my scan and feel like I’m only living six months at a time. The scaniety and waiting for that call with the results is the worst.  Always Praying for all cancers to be wiped out of this world. HeidiZ 

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    • Replies
        • February 19, 2019 at 1:44 am
        Zoe6565
        Participant

          Hi Heidi, 

          well nice to meet you 🙂 Although I feel like  I already know you since I’v read your posts many times on this forum and they have been great source of hope for us( my husband is the patient, stage 4 since April 17). I finally found the courage to share last night! I feel exactly what you are saying, except for I feel like i am living a week at the time( we go for appointments almost every week), let alone waiting for the scans result! I’v never experienced this level of anxiety ever before!

          anyway just wanted to say hi to you. Just like you, I only have one wish in my life; nobody ever dies from cancer anymore.

          Zoe

          • February 19, 2019 at 1:56 am
          Johnjk04
          Participant

            Heidi Z – my feelings – you are a survivor from the day your dermatologist gives you the diagnosis.

            • February 19, 2019 at 6:25 am
            aldrichdesigner
            Participant
              I second what John stated above …

              You are a survivor the moment you are DX whether you are stage 1 or stage 4. Assuming you are still alive, I believe that to be the only requirement. Melanoma is so sneaky and pesky that they won’t even give those lucky ones a “cured” tag. We are only allowed to be NED at best.

              That being said, congratulations to you on becoming free of disease and remaining stable. That is quite the accomplishment. Unfortunately, we don’t all get a positive result from ipi/nivo which sucks. Melanoma is a bitch.

              • February 19, 2019 at 3:15 pm
              RichInLife2
              Participant

                I think you are a survivor when you choose to be. I looked up the Merriam-Webster definition of patient and I came up with this:

                patient noun
                pa·​tient | ˈpā-shənt 
                Definition of patient (Entry 2 of 2)
                1a : an individual awaiting or under medical care and treatment
                cancer patients
                psychiatric patients
                b : the recipient of any of various personal services
                2 : one that is acted upon
                are agents as well as patients and observers in the world
                — C. H. Whiteley

                As defined, being a patient is a passive activity whereas being a survivor includes finding out as much information as you can about your disease, asking as many questions as you can think of, making informed decisions about your health care, taking charge of your own health, and doing what you can to strengthen your immune system, physically, emotionally and spiritually. 

                While I worry every time I get scanned, I swear I won't let the results define me. I will always be a survivor as long as I have the ability to make that choice.

                Good luck to us all. Warrior on!

                  • February 19, 2019 at 3:45 pm
                  HeidiZ
                  Participant

                    Thanks for all the replies.  My oncologist said I will continue to see them for 5 years and after that I can either be seen in the MSK Survivorship Program (I think that's what they called it) or continue with my doctor's group. I know they said if more melnoma shows up the count begins again from that date, but I'm still not clear on when they started counting the 5 years for me now? Thanks again. Heidi

                  • February 19, 2019 at 10:38 pm
                  Mat
                  Participant

                    I prefer–cancer patient, currently surviving.  Let them say I was a cancer survivor when I die from something else, preferably in the distant future.

                      • February 20, 2019 at 12:04 am
                      Bubbles
                      Participant

                        I like your version, Mat.  Mine = Though I carry a diagnosis of melanoma and a variety of scars, today I am alive.  Therefore, I am a survivor.  c

                        • March 4, 2019 at 5:20 pm
                        Raco
                        Participant

                          right on

                        • February 20, 2019 at 7:43 pm
                        TexMelanomex
                        Participant

                          I'm stealing this from MD Anderson but…."You were a cancer survivor the day you were diagnosed".

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