Tamoxifen for prevention?

BlueBunny
BlueBunny Member Posts: 4
edited October 2020 in High Risk for Breast Cancer

Is anyone taking tamoxifen for prevention? How is it working out? High-risk here (three generations' direct maternal line with breast cancer ranging from 46-80, plus one maternal relative died of pancreatic cancer at 27, negative for all known mutations, extreme density, no pregnancies, frequent periods - i.e. high exposure to estrogen.


So I'm considering taking tamoxifen for prevention. I'm mid-forties, early perimenopause.


Any experience to share?

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Comments

  • Mimi820
    Mimi820 Member Posts: 82
    edited October 2020

    my surgeon recommended me to talk with an oncologist (who prescribed tamoxifen). I have ADH. When I met with the Dr we decided to wait a year a will revisit then. I’m 47. I was just not ready to start menopause. Plus I’m very bad with remembering to takemeds. I think there is a thread on here devoted to this-it May give some good advice. Good luck, it’s not an easy decision!

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  • everythingwillbefine
    everythingwillbefine Member Posts: 96
    edited October 2020

    ladies,

    I take low dose 5mg tamoxifen.

    I am a little different diagnosis. I had stage 0 on my left and I had mastectomy. But my right has LCIS and ADH which was removed. I am now on low dose tamoxifen for prevention. Not sure about effectiveness but it is better than nothing and with less side effect. I do not have any side effect and I have been in it for a month.

    Maybe ask for low dose.

    Good luck

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited October 2020

    Onthinice,I doubt anyone can tell you, because I don’t believe their have been any long term studies on 5 vs. the standard 20 for chemoprevention

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  • Beesie
    Beesie Member Posts: 12,240
    edited October 2020

    I believe this is the only study on this; it compares 5mg of Tamoxifen to a placebo, but not to 20mg Tamoxifen. The participants had all had LCIS or DCIS (which was surgically removed) and took the 5mg Tamox (or the placebo) for 3 years. To MelissaDallas's point, the median follow-up was only 5 years, with a range of follow-up of 3.9 years to 6.3 years.

    https://www.abstracts2view.com/sabcs18/view.php?nu=SABCS18L_289

    The results look good - the number of cancer cases in the 5mg Tamoxifen group was half that of the placebo group (HR: 0.48, i.e. a 52% reduction in the number of cases). However the 95% CI is 0.25 - 0.89, meaning that there is 95% certainty that if this study were to be replicated over and over again, the results would not necessarily be the same but would fall somewhere in that very large range. What's also somewhat concerning (to me, anyway) is the following: "Most recurrences were invasive breast cancers: 11/14 (78%) in the T arm and 16/29 (55%) in the P arm" - i.e. more of the diagnoses in the Tamoxifen arm were invasive cancer rather than DCIS. So it may be that low dose Tamox. is effective at reducing the number of cases of DCIS but less effective at reducing the number of cases of invasive cancer - although it's hard to draw any conclusion because the variability on those results would also be very large.

    I think the answer is that 5mg Tamoxifen looks very promising but more research is needed to be able to say how effective it really is.


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