When do we get to not "have" cancer anymore?

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kelly279
kelly279 Member Posts: 55
edited June 2014 in Stage III Breast Cancer

Hello all, I don't know if my question is going to make much sense but here goes...When do we get to say we "had" BC rather than "have" it? I am done with the chemo, my BMX and I have less than 2 weeks left of radation.  Will there be a scan that tells me if it's gone? My onco is definitely not into frequent scans. Do I need to wait until I am done my year of Herceptin so I will be completely done my treatments until I can be in "had" territory? I guess I am just curious when you survivors considered yourselves cancer-free. Thanks :)

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Comments

  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2013

    Never - best we can hope for is no evidence of disease......sorry

  • kathy1925
    kathy1925 Member Posts: 34
    edited March 2013

    I asked my oncologist this very question when I saw her last month. I said "if you were me, knowing what you do about my breast cancer, would you say you HAVE breast cancer or you HAD breast cancer". She said "HAD"

  • lkc
    lkc Member Posts: 1,203
    edited March 2013

    Yep,definitely.. " HAD" .

  • Timbek2
    Timbek2 Member Posts: 204
    edited March 2013

    I am at the same stage of treatment as you are. Once I finish radiation I am going to move forward as cancer free until someone tells me differently. This is for my own mental health. I realize that even on a scan some lingering cells could be hanging around but I'm just not going there. We've gone through this treatment so now we should live our lives to the fullest. Just my own opinion. Wishing you all the best!!

  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2013

    I say i have HAD it but was replying according to the way médicos see cancer

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited March 2013

    It's all semantics.  If a physician were to say to me "you have breast cancer but I find no evidence of disease," I would slug her/him. 

    I HAD chickenpox and I hope I never get shingles, just like I HAD breast cancer and hope it's gone forever.

  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2013

    Yes sbelizabeth but all they will say is ned over here any way but i agree with you!!

  • pupmom
    pupmom Member Posts: 5,068
    edited March 2013

    I say "had." Maybe it is not technically correct, but sure makes me feel better!

  • Kicks
    Kicks Member Posts: 4,131
    edited March 2013

    Never have thought I was 'cancer free' since DX.

    At this time, there is no cure for Breast Cancer.  The best we get is NED (No Evidence of Disease).  Hopefully someday there will be a cure     but it's not here now.

    I was told if I had no mets when I hit 1 yr post end of TX - I could consider myself NED.   The National Guide Lines for donating blood after BC is that you are at least a year out of TX and no recurrences or mets - so to me that seems logical to use a year time frame to start usiing NED.   (Yes, you can donate blood again as long as the other peramiters are met - I'll be donating tomorrow again as I am 3 yrs out of TX.)

  • kar123
    kar123 Member Posts: 273
    edited March 2013

    I say had and consider it after my BMX.  Still on arimidex, but I consider that a preventative not a treatment.  While there is no universal cure for breast cancer for many people going through (insert your treatment here)  is "curative" for their breast cancer. 

  • edwards750
    edwards750 Member Posts: 3,761
    edited March 2013

    I think never too because we have all heard the horror stories about women who are years and years out and it comes back. I have heard and read as well that if you make it 5 years out w/o a recurrence you can at least be optimistic. I am only 2 years out. I have my last mammogram with my BS this May and then its back to Womens Health Center for the routine mammogram. Given I am the poster person for worrying I probably will never totally relax about having BC and be content to hear the NED. Lets face it we are branded with the C word. Hopefully all of us wont be continually looking over our shoulder to see if IT comes back. I know for the Stage IV ladies it is a different mindset. Obviously none of us asked for this but we can survive despite having it. I have to admit I scare myself when I read a post from someone with an early stage bc who has mets. We all know we sometimes think every ache or pain is the dreaded mets. My ONC did tell me if I have pain that lasts and lasts to see her not my GP or Internist. The fear factor is alive and well but so is the outlook for bc survivors. Diane

  • Denise-G
    Denise-G Member Posts: 1,777
    edited March 2013

    My hospital, the University of Michigan, uses the CURE word.  I CHERISH IT!!  And I use it.  And they use it.   And they used it early...when I was diagnosed with Stage 3 Triple Positive, my breast surgeon looked at me and said, "We can cure you."  I had those word painted on my dining room wall 10 inches high.  I am looking at them now.  I looked at them all through chemo on my darkest days when I wanted to die. 

    I may not always believe it, but I cherish those valuable words!

  • Colt45
    Colt45 Member Posts: 771
    edited March 2013

    Right or wrong, we're going with what our Onc said: "It's OUT. The adjuvant therapy is just insurance."





  • liefie
    liefie Member Posts: 2,440
    edited March 2013

    Denise-G, I'm with you. My onc said that as far as he was concerned, I am 'cured'. I'll take that, and live my life to the fullest. If bc ever comes back, I will deal with it then, not before. I refuse to think about it, and will not live expecting the worst all the time. That's not life. That's waiting for the axe to fall - not a way to live. It steals your joy, and makes you miserable. The bc drama is behind me now. I'm not a cancer patient any more, life is wonderful again, and that's how I see it.

  • kelly279
    kelly279 Member Posts: 55
    edited March 2013

    It's interesting that so many of you say never and so many say as soon as it was removed. I guess in my mind NED and "had" are the same thing, or as good as we're going to get. When did your doctors declare you NED? Did anyone have scans following treatment or was t just physical exams? Denise, my doctors also say "cure" and I'm right there with you, anything that can give us hope! My father in-law also had stomach cancer and his doctor said that he was cured after a clear scan. 

  • pupmom
    pupmom Member Posts: 5,068
    edited March 2013

    Kelly, doctors say what they say, but the truth is nobody knows until he/she dies of something else. But after 3 clean scans, I'm feeling pretty darn on top of this s*@t. KNOCK ON WOOD!

  • Colt45
    Colt45 Member Posts: 771
    edited March 2013

    We have staph on our skin, MRSA in our nostrils. But we don't "HAVE" MRSA. Now I am not equating a staph infection with breast cancer, but rather drawing a crude comparison just for the sake of underscoring 'perspective' regarding "not having" cancer anymore. I like to think that my wife HAD cancer. I truly hope I haven't offended anyone with this. I have ALL the respect in the world for all here... and I am greatly affected by my wife's cancer experience. Bless you all.

  • lostinmo
    lostinmo Member Posts: 922
    edited March 2013

    In my world (my mind lol) I had it and until a test or Dr tells me different it will stay that way. IF I get a recurrance or mets, I will HAVE it again. That's my story and I'm sticking to it. Smile

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited March 2013

    My friend said, at the end of my active treatment, "the mastectomy got the nest, the chemo got the fleas, and the radiation got whatever nits might be hanging around."

    I'm with Liefie.  I can't spend the rest of my life, may it be thirty minutes or thirty years, carefully listening for breast cancer to sneak up on me.  It's GONE.  And if I have to deal with it again, I'll deal with it again.  I will not waste my life with worry or dread.

    Rads were finished July 2012, the last of the chemo finished October 2012, and in November 2012, a healthy bone and CT scan.  A week ago, a clear PET scan.  Reconstruction is April 15.  Look out, world.  WOMEN AT WORK!

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited March 2013

     I always said I was being treated for cancer or in treatment for cancer. Now I say I am not longer in treatment for cancer. Those are the facts. Smile

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited March 2013

    To my husband - I had it; to my children -again I've HAD it , to my aged father - it's gone- but to me, even though I put it out my mind, it is NED until another test says it isn't .



  • Momine
    Momine Member Posts: 7,859
    edited March 2013

    In one convo I said to my onc, "I have cancer" and he quickly corrected "have" to "had." I looked at him and told him that was all very nice, but we both know it doesn't quite work so rosily. Then he got serious, we talked prognosis, and he insisted that, although I was technically correct, he felt that I had a very good chance of living many years, including a normal life span. 

    We are in a weird grey zone with this beast. Although I know the bitch could be back any day, now or far in the future, I choose to consider myself healthy (not cured, but healthy) as long as I feel good and the docs can't find any cancer cells. I figure that if nobody can see the cancer and it isn't bothering me, then it is completely fair to consider it absent.

  • lostinmo
    lostinmo Member Posts: 922
    edited March 2013

    Momine-you summed it up perfectly

  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2013

    Are we considered as having advanced BC or just locally advanced BC ?  I was stage 3A............

    Just wondering......doctors here are very gloomy and use scare tactics so i need to hear your Onc comments...thank you

  • Momine
    Momine Member Posts: 7,859
    edited March 2013

    We have locally advanced.

  • Denise-G
    Denise-G Member Posts: 1,777
    edited March 2013

    Lily55 - I am sorry you have to endure gloomy doctors...that is a cross.

    I met 3 women where I get treated during Chemo.  All 3 were Stage IV given less than 6 months to live by doom and gloom doctors.  All 3 of them fired their Oncologists and found my Oncologist.   They were from all different parts of the country and had not met each other.  They had been alive 7 years, 14 years, and 19 years respectively.  They said all the doctors said the same thing.  Their new Onc gave them hope- they felt that was the difference.  Those 3 women continue to inspire me when I have those terrified days...

  • jennifer1
    jennifer1 Member Posts: 185
    edited April 2013

    When I got BC spent alot of time (still do) talking to everyone who has had BC. After about 5 years most seem to lose the fear.  Many, many women who never have been to this site have survived this disease and moved on.  All of them from different backgrounds, different lifestyles, some overweight, some too thin.  Bankers, schoolteachers, housewives, older, younger, makes no difference.  Prevention is a great idea however the cause is not an easy solution.  Other than having breasts and being female (some men) I cant make a connection.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2013

    My onc likes to tell me my BC is a puzzle caused by many factors, not just one thing.  I smoked for 25 years but not heavy (less than 1/2 pack/day)- I have a family history of 2nd degree relatives with BC on both sides; I had a very stressful job for 10 years, had a very large baby in my late 30's.  She doesn't like to pin this to any one cause and I guess that makes sense.  I think the BIGGEST risk is being female.  Oh and I left out - DENSE breasts !!! Really -- isn't that enough? 

    Kelly - the best thing I heard was when I was in my hospital room after mast surgery, and my nurse said "the cancer is gone".  It is good to think of it gone right from the day either surgery or chemo/radiation is done.  

  • Colt45
    Colt45 Member Posts: 771
    edited April 2013

    It is a burden to agonize over what "you did to get cancer".

    Let me tell you this: my dad's cousin had children before 30... breast fed... was VERY athletic and active... lived in fresh air... non smoker... healthy diet... didn't abuse drugs or alcohol... no family history. Basically none of your classic risk factors, except being a woman.



    And at age 32, she was diagnosed with breast cancer. I am not sure of the details of her pathology---but it was advanced enough for her to have chemo and a bilateral mastectomy at the very least.



    This past year (she is 27 years post diagnosis), she completed her doctorate. Living a wonderful life.



    She did NOTHING to get her cancer. Probably did more to prevent it than most. She's been doing all she can to live since.



    Bless you all.

  • indenial
    indenial Member Posts: 504
    edited April 2013

    Jennifer & Colt are right... I'm not convinced there is much rhyme or reason to who gets BC. I'm only 30 years old. I have never smoked nor drank, I eat incredibly healthy. I was vegetarian for most of my life, I avoid all food additives and chemicals, eat mostly organic & use mostly organic personal care products... I had a baby in my mid-20's and I breastfed for over 3 years. I've never used any kind of birth control or hormonal replacements. I only used homemade deodorant and non-underwire bras. I am a healthy weight and have always been moderately or very active. I can't think of a single thing I could have done differently to prevent getting cancer, because there's not a single factor in my lifestyle etc. that "should" have led me to have BC. I am a woman and I had breasts... that's all there was to it. It's still hard not to blame myself and agonize over what I could have done to cause it though!

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