Why didn't they tell me I am cured.....?.??????????.

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macb04
macb04 Member Posts: 1,433
edited August 2015 in Mental Health: Because Cancer Doesn't Just Affect Your Breasts

What the fu*king good does it do to with all this misery and torture if when you finish it they don't even for one fu*king second tell you are cured???? WHY? WHY not say NED if they have butchered, fried and poisoned you and all scans are negative? Why didn't they tell me that.? It always feels that it was all for nothing. All my suffering and pain was for nothing.

I have not had one minute of relief. That is not completely true, but itfeel mostly true. I never feel comfortable in my own skin. The tighness from the radiation damage persists despite everything i do to fix it . Want to know why they don't ever give you even one second of compassion. I realize they cannot predict the future. I realize they can not say you are cured forever. But why can they not say something like. "At this time you appear cured" Why can't they say a qualified sentence like that to give me some hope?

Everywhere I go, if people, Doctors, whoever find out, they all ask "Did they tell you are cured?" Why do they ask me that, even other doctors I run across who are not in thecancer industry ask me that. Then when I say they never told me I am cured they get this awful expression on their face, like oh she must be doomed or they would have told her she was cured.

I am doing surgery number14, the 12th reconstruction surgery in 3 days. I so much want to look normal, look whole.

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  • iceelover
    iceelover Member Posts: 1
    edited August 2015

    I feel your pain, too. According to my dr., they don't tell you that you are officially cancer free until after you hit the 5 year mark. I just finished 14 months of chemo, surgery, proton therapy, and asked my Dr. if I can consider myself cancer free and she said, NO. She wouldn't even let me get my port removed for at least 2 years. Very discouraging and feel like I am a walking time bomb. So I have had to change my mindset. For today, as far as I know, I am cancer free.

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  • debiann
    debiann Member Posts: 1,200
    edited August 2015

    macb04,

    I hope all goes well with your upcoming surgery, you have really been through the wringer with reconstruction! I had three surgeries so far, a lumpectomy, a bmx with immediate DIEP recon (13 hours!) and a stage two recon with a breast reduction and lift. Geez it is hard to keep getting knocked down again and again. I sympathize with you. For the most part I'm satisfied with the results, but there are some drawbacks like belly numbness. One concern is that lefty came out bigger than righty. PS said it will take ANOTHER surgery to fix the problem. Not sure I want to go through it again, may decide to just be happy with what I got.

    I can't say that any of my doctors exactly said I was "cured" either. My breast surgeon said that I had a 70% chance of being "cured" just with surgery alone, but because I was HER2+, I still had a 30% chance of recurrence and I should do chemo, which I did.

    Early on my MO said we were doing aggressive treatment and "going for a cure", but when I was finished he never said I was cured. He just said I had a very good chance of never having a recurrence and explained the plan for followup care. No routine scans or tumor markers unless in the future I have concerning blood work or symptoms.

    None of my doctors have used the terms "remission" or "NED" with me, although I know we use these terms on the forum all the time. I'm assuming I'm NED till there is evidence that I'm not. People ask me all the time 'If they got it all" or "are you all clear". I just say, "as far as I know I am and I hope to stay that way".

    You don't list your stage in your signature, but unless you have been told that you are stage IV or are receiving "palliative care", I think you can assume that you are NED.

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  • dumbass
    dumbass Member Posts: 13
    edited August 2015

    Hi mac. I get it. One little word of compassion would change the world. No one works for long without a paycheck. Hugs.

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  • macb04
    macb04 Member Posts: 1,433
    edited August 2015

    Thanks dumbass. Feels weird writing your screen name, almost as if I am being unintentionally rude. Actually I think that you have hit the nail on the head. I feel better knowing that other women have been shafted by the heartless and cruel doctors running the cancer racket, that it is not just me. But it is all such a simple thing, to make a kind, albeit, qualified statement that you appear to be cured at this time. Would give me more hope that all this godawful misery wasn't for nothing.

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  • dumbass
    dumbass Member Posts: 13
    edited August 2015

    macb04,

    I had a pathological complete response after chemo and mastectomy but of course I'm not cancer free. I realize that was my paycheck for being sick as crappie thru chemo. But not one understanding moment as I stood there bald, gaunt, deformed chest and boobless, not one woohoo. Not one encouraging word about that, one help with the side effects, rather than the 'there is no fixing or changing you, you are just the way you are going to be' would help for me to keep going. But no. I truly hope that they would never have to walk in our shoes.

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