When R U considered cancer free?

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mawhinney
mawhinney Member Posts: 1,377

 I've had my mastectomy and will be taking AIs for 4 more yeas. Folllow-up mris and mammograms have come back clean. Am I considered cancer free? What determines you are cancer free?

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  • mrsb
    mrsb Member Posts: 140
    edited August 2009

    I am not sure whether  we ever are. I consider myself NED.I hope to be celebrating my 7th year as a survivor next January. It will be interesting  to see what others post.

  • hollyann
    hollyann Member Posts: 2,992
    edited August 2009

    I have been told that I will be considered cancer free whern I die of something else......BUT I also consider myself cancer feree unless and until it comes back.........

    Mrsb..Congrats on seven years!.....I hope I can say that one day......I am only 2 1/2 years out......

  • lexislove
    lexislove Member Posts: 2,645
    edited August 2009

    I considered myself cancer free when I finished ALL treatment.

  • leaf
    leaf Member Posts: 8,188
    edited August 2009

    This abstract describes a patient who had local recurrance after 40 years. http://www.ncbi.nlm.nih.gov/pubmed/14627268

  • ElaineD
    ElaineD Member Posts: 2,265
    edited August 2009

    There's always the risk that it'll come back (I was 12 years betweeen primary and secondary disease), so I think you will always have to stay extra vigilant, and perhaps consider yourself  NED, rather than cured. Most oncologists don't use the word "cured", as it is misleading.It takes only one cell (which of course can't be detected on any test), to escape, and lie dormant for "x" amount of time, and it will eventually set off more problems. It's really a matter of semantics, but to be strictly accurate, as mrsb said, we can never be 100% sure. Good luck with your ongoing treatment.

  • sandy22509
    sandy22509 Member Posts: 8
    edited August 2009

    I do not believe anyone, whether they have been diagnosed or not, can say they are cancer free.  Anyone can have that one cancer cell somewhere in their body. It is only when it grows do you know what cancer you have.  Some go through life without growth while others are not as lucky.

  • Isabella4
    Isabella4 Member Posts: 2,166
    edited August 2009

    I am six and a half years out.

    I was at my GP's last week, on a cancer unrelated visit, and she referred to me as  'a cancer patient'  It quite shocked me, I came home and had a good old cry, even tho' I knew it was an open ended diagnosis. I suppose I like to bury my head in the sand, and try and erase the memory of all the tx's. To me they DO seem to be in the past, but NOT to my Dr, she was bent on raking up the past, and letting me know how she sees me.

    Sent shivers down my spine !

    Isabella.

  • lexislove
    lexislove Member Posts: 2,645
    edited August 2009

    I hate...HATE the term "cancer patient". I mean do we refer to people who have diabetes, diabetes patients?

    Or what about, heart attack patients? Stroke patients...I can go on, but you get where I;m comin from.

  • otter
    otter Member Posts: 6,099
    edited August 2009

    Lexis, I hate "cancer patient", too, especially now that I'm more than 18 months out from my dx, 14 months past my last chemo, and well into my 2nd year of Arimidex.

    However, there are words (names) for people with chronic diseases.  People who have diabetes are called "diabetics", even if the diabetes is under control.  People who have lost limbs are called "amputees", even if the surgery was long ago. People with Alzheimer's Disease are "Alzheimer's patients," of course.  People with tuberculosis have long been called "TB patients," and people with HIV AIDS are routinely called "AIDS patients."

    So we aren't alone.  I think what we find discomforting is exactly the question that started this thread:  When are we considered (and when can we consider ourselves) cancer-free? That's the key question for someone with a chronic disease:  When can I consider it "gone"?

    It's my understanding -- and I'm beginning to accept this -- that I might think of myself as "cured" any time I like; but from a medical perspective, I'll never be free of the shadow of a recurrence. Even that little white Arimidex pill I take every day might only be postponing a recurrence -- keeping residual cancer cells in check, rather than killing them. That's one reason why some doctors are urging patients to continue on AI's after their 5 years are finished.

    So, as much as we may hate it, many of us will be treated as "cancer patients" by health care personnel for the rest of our lives.

    [Note added in edit:  I know; it sucks.] 

    otter

  • lexislove
    lexislove Member Posts: 2,645
    edited August 2009

    I think with this day and age..it is kinda hard NOT to have a "---------- patient" title during a lifetime. BUT......

    It's just the whole word cancer.....AND now when I have to update my medical history at the dentist or where ever...I have to check off that stupid box yes I have had a diagnosis of cancer.

    It pisses me off. Sorry to be blunt.

  • weesa
    weesa Member Posts: 707
    edited August 2009

    None of us knows if she is cancer-free, The man on the street does not know if he is cancer-free. Remember that breast cancer is a collection of many disparate diseases, known collectively as breast cancer. Inflammatory tends, I have heard, to be cause for celebration if you make it past five years.

    Hormone receptive tends to hide out, dormant, and then reawaken due to some unknown stimulus. Sometimes decades later, I have read more than once.

    I am grateful I am labelled :"cancer patient" virtually everywhere. Friday I went back to the facility which overlooked my breast cancer for ten years, despite my pointing out such things as lumps under my arm. (All I  ever got was a xeroxed form letter each time telling me no abnormalities were found despite a 5 cm tumor I finally discovered in the shower.) What a difference this time! Lots of care taking many mammograms, some with magnification, a sonogram, much time spent with the radiologist on duty. New lump was finally diagnosed as a fatty lipoma, and they have offered to do a surgical biopsy and  MRI if I am still concerned. All this took place within three days of my going to my oncologist with the new-found lump. No waiting interminably this time.

    My dentist is aware I am "cancer patient" status and checked on something about my treatment before I had an implant. He averted a disaster because I checked his box yes.

    Sometimes we try hard to find commonalities with each other because, lets face it, it is hard doing this alone, but even if we could locate a person with exactly the same diagnosis, exactly the same day as us, with the same treatment, we could likely have different outcomes. The unpredictability of breast cancer is what makes it so maddening. When you are diagnosed with breast cancer your new reality becomes that you will never know if you are cancer-free. But, hey, do you really know for instance, is there is a dangerous aneurysm lurking in your body that is threatening to burst at any time? Or a clot that is heading for your heart? Or a dirty bomb waiting to go off near your city? You have always had to lived with uncertainty; add one more and go on enjoying life!

  • lexislove
    lexislove Member Posts: 2,645
    edited August 2009

    Well said weesa.

  • Mary22
    Mary22 Member Posts: 779
    edited August 2009

    Lexis, well it pisses me off too. It seems my life is forever changed!!!!! I just hate dealing with all of this.

  • weesa
    weesa Member Posts: 707
    edited August 2009

    Hope you stay really pissed off--it will help you fight like a girl!

  • ailenroc
    ailenroc Member Posts: 308
    edited August 2009

    Great discussion. I have wondered myself and get really different impressions: one breast onc said "you are cured"; my gyn says I'm now a 'high risk patient for ovarian cancer because I'm a bc patient', and getting life insurance has become impossible because I'm a cancer patient. Not to mention the issue of my "preexisting condition" ... for health insurances. Oh, how confusing ...

  • Mary22
    Mary22 Member Posts: 779
    edited August 2009

    I guess the more we cut our risks the better. I recently had my ovaries removed, b/c I am BRCA2+ and I did not want to go thru another cancer. My uncle had cancer of the esophagus and he still has to go see his onc regularly. He was lucky, it was caught early, so he did not needs rads or chemo. I guess it is the same with any cancer.

  • HelenaJ
    HelenaJ Member Posts: 1,133
    edited August 2009

    Loved reading everyone's posts.  I want, and am trying, to believe that I am now in a better space to convince myself I am "cancer free".  Cutting off both boobs, taking some drug for 5 years will give me some peace of mind to carry on, hopefully for many years to come.  The new boobs I have are what I call a trick with mirrors, it is all an illusion, surely I can continue to live in an illusion of NED - whatever gets you through the night as John Lennon said.  We will never be cancer free because it is hard for us to convince ourselves we will be cancer free, but I am doing my darndest.  No one on this planet knows what is around the corner.

    Weesa I loved your post - so many amazing women here.

    big hugs

    Helena

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