Tamoxifen and "cancer free?"

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Unbreakable01
Unbreakable01 Member Posts: 153
edited December 2015 in Hormonal Therapy - Before, During, and After

I've been on Tamoxifen for 3 months now, diagnosed in May of this year with stage 2 mucinous carcinoma. I had the mastectomy in July, no chemo or rads.

I saw my MO this week and asked what do I tell people when they ask about my cancer? She said tell them you're cancer free.

I'm not a negative person, but I'm a little weary saying that just now. Per the stats cancer has a greater recurrence in the first 5 years. People still can get a recurrence later. I've read most doctors are cautious of saying your cancer free.

Is that odd for an Mo to say? Have yours declared you cancer free after 5 months?

Thanks!

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  • besa
    besa Member Posts: 1,088
    edited December 2015

    None of us, even is the best of circumstances, after we have been diagnosed and treated for IDC knows if we are "cancer free" For me personally, being told to say I am "cancer free" by an MO would be insulting - asking me to ignore (or pretend to ignore) the reality of the situation. Casual people asking me this question get the answer that is some combination of "feeling good", "done with treatment" or more likely "so far so good.."

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  • Unbreakable01
    Unbreakable01 Member Posts: 153
    edited December 2015

    besa that's what I tell my mom. I hope to be cancer free, but you just never know. A few days after I met with my MO I had my first mammo since everything. I was a bit nervous when the technician had to show the doctor the images, but I'm good thankfully.

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  • rleepac
    rleepac Member Posts: 755
    edited December 2015

    That's a tough one. I was told by my BS that I'm cancer free but I know in reality I'm NED and that's hard to explain to people. For now I just say 'the chemo did what it was supposed to and they can't find any cancer left...I'm in recovery mode'

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  • labelle
    labelle Member Posts: 721
    edited December 2015

    My OC told me that after surgery and RADS about 80% of women with my stats never have a recurrence, they are in fact cancer free, so there is an 80% or so chance that I am indeed cancer free. Of course, no one knows who will or won't have a recurrence, who really is or is not cancer free, but I'm willing to go with the big number and believe I am cancer free unless or until it is shown I'm not.

    Like kayb, I tell those who ask that "As far as I know, I'm cancer free." So many people seem not to really understand this disease, like my uncle who recently responded to my answer with, "Well did they get it all or not?" Geez! If only it were that simple.

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  • Unbreakable01
    Unbreakable01 Member Posts: 153
    edited December 2015

    Thank you all for sharing, it helps. I think sometimes I need to hear it from my sisters. :)

    I've seen this before, what does NED stand for?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2015

    No Evidence of Disease - NED. I don't have a problem saying I'm cancer free because, to me, I am, until told otherwise (recurrence). As far as I am concerned they got it all and until it comes back there is nothing there. But that's me. We all have different takes and maybe it all comes down to semantics?

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  • labelle
    labelle Member Posts: 721
    edited December 2015

    I think it often is semantics when it comes to our doctors-they will tell us things look good but also urge continued vigilance, testing and treatments. Maybe they are looking for that sweet spot between excessive positivity and reality.

    My response to those who ask is often a matter of how much I want to try to explain to those who really haven't a clue about the nature of BC. The fact that neither we nor our doctors will know for a very long time if our treatments "got it all or not" makes the question a difficult one.

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  • Goodie16
    Goodie16 Member Posts: 446
    edited December 2015

    I'm stage IV, but currently NED. I simply tell people that I will live with cancer until the day I die....which I hope will be for a longtime!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2015

    Since I'm somewhat of a superstitious Celt, I prefer NED instead of "in remission" (old school) or "cancer-free" since I don't know that for sure and probably never will).

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2015

    I say, "so far, so good" and then I knock on wood!

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2015

    Ugh - I personally hate the term remission because to me it connotes a time when I won't be in remission. I'm with Patoo. I HAD it and it is gone. If something disproves me so be it. Could I be living in De Nile? You betcha.

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  • Juliecc
    Juliecc Member Posts: 4,868
    edited December 2015

    I say I "had" breast cancer and I am cancer free. I have also used "so far, so good." I know I can have a recurrence but until then, I'll stick to those terms. NED and remission are confusing to some people, I think. The ones close to me know I have a chance of recurring and that is why I'll be taking tamoxifen for 10 years.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2015

    Interesting comments all.

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  • BethL
    BethL Member Posts: 286
    edited December 2015

    I agree with besa. I think a doctor saying you're cancer free is a bit insulting. I had dcis with micro invasive idc. Very tiny, 10 years ago. Had radiation and tamoxifen for 5 years. Told I was cancer free, but I always worried. 10 years later, a recurrence, same place.. Not saying this to scare anyone, but no one can say they are cancer free, not even those who have never been diagnosed. Who knows what's going on in our bodies. I just say "no signs of cancer".

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited December 2015

    Totally agree. My radiologist told me at the final rads follow up that I was cancer free. Such a stupid comment and not one that made me confident Memo to cancer doctors.... We are ok being told the truth!

    MsP

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2015

    Interesting thread! I dislike remission also since my late husband and I were told he was in remission from the cancer he had, and 6 weeks later he was stage IV and terminal. He died 4 months later.

    I like Ruth Bru's "so far so good" and knock wood. I think I've said that too.

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  • Unbreakable01
    Unbreakable01 Member Posts: 153
    edited December 2015

    Thank you all for sharing. I like "no signs of cancer" and "so far so good". I don't feel comfortable with saying cancer free. I'm not living in fear of cancer. To the contrary, I've made difficult changes and choices in my life to live more.


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  • etnasgrl
    etnasgrl Member Posts: 650
    edited December 2015

    After my lumpectomy/SNB, when the pathology report came back that I had clean margins and no cancer in the lymph nodes, my surgical oncologist told me, "You are cancer free, we got it all!"
    Granted, I still need to go through radiation therapy come January, just to make sure that any unknown lingering cancer cells are destroyed....but you can beat your butt that once I'm done with that, I will absolutely say that I'm CANCER FREE!!!!

    It doesn't mean I'm "cured", it doesn't mean it won't come back....but it does mean that I had cancer, and for now, it's gone....so I am cancer free!

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  • Piscean
    Piscean Member Posts: 50
    edited December 2015

    I like to think I'm cancer free, but I'm reminded of the fact I had cancer every time I move. I don't think I'll ever be free from cancer, even if there are no cancer cells growing inside me. It will always be lurking in the shadows, threatening to come out and invade my thoughts.

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