When are we survivors?

santa6
santa6 Member Posts: 29
edited March 2014 in Head and Neck Cancer #1
Hi all. I was SSC one lymph in neck, primary unknown. Neck dissection, PEG, Chemo, IMRT, etc. Thirteen months out and feeling better than i have in 20 years. The treatment knocked 80 lbs off and I've been successful in keeping it off. Partial taste, lack of saliva and choking several times per meal of course bolster my will power!!!!

In a recent conversation someone referred to me as a survivor. I replied that I didn't think so and then wasn't sure.

How is it defined? Am I in remission until 7 years and then a survivor? Is there a definition?

Comments

  • Pam M
    Pam M Member Posts: 2,196
    #2
    Congrats
    Santa,

    I believe it's a common opinion here that you are a survivor when you get the diagnosis of cancer. As far as being "safe" goes - lots of opinions. I kept hearing "If you make it five years, you're probably in the clear", then a couple of visits ago with my RO, he said "we're looking for 18 months now". I took that to mean that the chances of recurrance dropped significantly at that point. Keep it up.
  • ekdennie
    ekdennie Member Posts: 238 Member
    #3
    diagnosis
    You become a survivor the moment you are diagnosed. you also begin your battle at the same time. however, they often say that the war is not won until you have made it 5 years with no new or recurrence of cancer.

    so you are a survivor now. you can say that you are NED (no evidence of disease) for 5 years (some types 7 years, mine is 5). then you are often considered cancer-free. you may not be cured. that is usually only an option for certain grades of cancer at early stages, when only surgery is necessary. this is how my ENT described it to me anyway.

    once you have a non-curable cancer, then you will be seeing your doctor(s) for life...just the distance between visits gets farther and farther out.

    I hope this helps!
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #4
    Yes you are a survivor.
    I concur with the others here. You are a survivor of cancer from the moment you are diagnosed. We then become survivors of the treatment regime! I am not recovering from the cancer, I am now recovering from the treatment.

    Deb
  • charles55
    charles55 Member Posts: 87
    #5
    D Lewis said:

    Yes you are a survivor.
    I concur with the others here. You are a survivor of cancer from the moment you are diagnosed. We then become survivors of the treatment regime! I am not recovering from the cancer, I am now recovering from the treatment.

    Deb

    cancer for four months, treatment for forever
    Amen to "now recovering from the treatment".
  • Scambuster
    Scambuster Member Posts: 973
    #6
    charles55 said:

    cancer for four months, treatment for forever
    Amen to "now recovering from the treatment".

    You are already one !
    You are doing it Santa and are one. Keep recovering.

    Can you share with us your recipe for being so fit ??

    Scam
  • Joel4
    Joel4 Member Posts: 263 Member
    #7
    Scambuster said:

    You are already one !
    You are doing it Santa and are one. Keep recovering.

    Can you share with us your recipe for being so fit ??

    Scam

    Same diagnosis
    I too was diagnosed with SCC unknown primary with cancer found in only one lymph node with no extracapsular spread.
    I have wondered the same thing myself regarding what the definition of survivor is. Thanks for posing the question and thanks to all of those who have chimed in.
    I have also caught myself saying I have cancer. Do I have cancer or did I have cancer in the past tense?
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    Survivor
    To me, your a survivor when you've made it through and have scans saying you are clean and NED.

    But I think "officially" MD's (or mine anyways) seem to indicate 2 years. Insurance like I have at work seem to be more on a 5 year track. I had thought of increasing my life insurance. But after reading the several references to "have you had cancer within the last 5 years". I decided it wasn't worth all of the extra hassle and interviews, paperwork (probably from a non medical professional), just to tell me NO.

    Anyways, that's my take...

    In reality, you're a survivor as long as you are above ground.

    Best,
    John
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #9
    The Day
    The day you were told you were told those ugly words "you have cancer". Because you have already survived the cancer prior to being told. From there it is how are you going to whip the hell out of cancer.

    I also believe that the day you hear those words you have a new birthdate. Mostly because I believe every moment changes, every thought changes and your priorities change.

    Enjoy each moment they are all wonderful, just different degree's of wonderful

    God Bless!

    John
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #10
    fisrpotpe said:

    The Day
    The day you were told you were told those ugly words "you have cancer". Because you have already survived the cancer prior to being told. From there it is how are you going to whip the hell out of cancer.

    I also believe that the day you hear those words you have a new birthdate. Mostly because I believe every moment changes, every thought changes and your priorities change.

    Enjoy each moment they are all wonderful, just different degree's of wonderful

    God Bless!

    John

    When You Know
    Though I'm aware the standard for the start date is when you are told it is C, which in most cases IS ONLY KNOWN TO BE FACT when the biopsy results are had, I must disagree. For me, it was in early-November of 08 that I noticed two lumps on the left-side of my neck. I waited a couple weeks before I saw my regular Dr., but I figured it was C, as I had been losing weight for several months, and I was a smoker. The biopsy results weren't had until the last week of December 08, and earlier in the month my first ENT had told me he was certain it was C. But big deal to both. The tumors had shown in early-November, and that's when I figured it was C, which it was- so I consider the first week of 11/08 at my start date. And to me this should be correct= when a sign(s) has shown, and in your mind you reckon it is C, because that is when your battle with C really begins- that's when the acceptance struggle begins- a very difficult struggle for many of us.
    That's my two-cents.

    kcass
  • Army_Guy
    Army_Guy Member Posts: 53
    #11
    We ARE survivors...
    I agree with the concensus; we're survivors as soon as we are diagnosed. I feel fortunate to have survived treatment as I went through a rigorous protocol: radiation twice daily for six weeks(June 28th through August 12th)and a weekly Cisplatin infusion therapy session . I had a stage 3 squamos cell HPV+ tumor at the base of my tongue. Also had surgery to relocate my opposite side salivary gland (to spare it from radiation...it worked!)and insertion of a PEG. I'm 65 years old and I withstood all of that, got rid of my PEG on September 19th, lost 70 lbs and I'm still working because I don't feel like retiring. I feel strong, work out 3x a week and I dare anyone to tell me I'm not a survivor. Anyone who withstands radiation therapy to the neck or head is a survivor, side effects not withstanding. And my first post-treatment PET/CT on November 1st showed me to be cancer free! So I consider myself a survivor. YOU ARE TOO. Stay strong and be proud to have graduated from cancer patient to cancer survivor!
  • Hondo
    Hondo Member Posts: 6,636 Member
    #12
    Hi santa
    I too believe we become survivors as soon as we know we have cancer, because it is from that point on that we learn how to survive in a different world.
  • oldcamper
    oldcamper Member Posts: 27
    #13
    Hondo said:

    Hi santa
    I too believe we become survivors as soon as we know we have cancer, because it is from that point on that we learn how to survive in a different world.

    you start surviving on day 1
    yes I was stage 4b with SSC and a primary was the left tonsil, did the radiation/chemo at the same time. followed with surgery. My cancer once it started to relly show by growing at an alarming rate and was the size of half an apple sticking out the left side of my neck. I did what the doctors told me to do without any hesitation or questioning. I had teath pulled before the biopsy came back so I could begin treatment. I turned down waiting until after thanksgiving to begin treatment. that was last year!!!! I am doing a great job at surviving with a clean PET at 6 months post treatment and getting ready for another scan next week. blood test all coming back clean. I am keeping the weight off also. try the livestrong.com/myplate it has some good tools for watching what you eat. one doctor told me to gain weight as I lost alot. then the other told me to stop as McDonald's was doing a good job of putting it back on me. I am holding my weight and doing well. and plan to keep on surviving for years to come.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #14
    oldcamper said:

    you start surviving on day 1
    yes I was stage 4b with SSC and a primary was the left tonsil, did the radiation/chemo at the same time. followed with surgery. My cancer once it started to relly show by growing at an alarming rate and was the size of half an apple sticking out the left side of my neck. I did what the doctors told me to do without any hesitation or questioning. I had teath pulled before the biopsy came back so I could begin treatment. I turned down waiting until after thanksgiving to begin treatment. that was last year!!!! I am doing a great job at surviving with a clean PET at 6 months post treatment and getting ready for another scan next week. blood test all coming back clean. I am keeping the weight off also. try the livestrong.com/myplate it has some good tools for watching what you eat. one doctor told me to gain weight as I lost alot. then the other told me to stop as McDonald's was doing a good job of putting it back on me. I am holding my weight and doing well. and plan to keep on surviving for years to come.

    I feel like I am a survivor
    I feel like I am a survivor from the day I found that swollen lymph node in my neck. 10/9/08. They never found my primary and that was mets to my neck. In my mind it had to be around before that and I survived until I got my biopsy and diagnosis in 12/08. In my mind that will always be my survivor date.

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