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Topic: Tamoxifen for prevention?

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jun 5, 2020 12:38PM

BlueBunny wrote:

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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Sep 22, 2020 07:12AM Onthinice1 wrote:

Bunny, I go for my first breast assessment next week due to high risk with family history and dense breasts. You mentioned no genetic mutations- have you been tested? Did you start tamoxifen? There is a group devoted to women taking tamoxifen on Facebook and the vast majority seem to experience many side effects. Have you discussed prophylactic mastectomy as breast cancer prevention? Apologies for all the questions but trying to get a feel for what my upcoming appointment will consist of and what information I need to support my family history of bc. Any information would be greatly appreciated. Thank you and God bless.

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Oct 1, 2020 08:25PM Mimi820 wrote:

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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Oct 1, 2020 11:50PM everythingwillbefine wrote:


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

Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/31/2020 Lumpectomy: Right Surgery 7/31/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 4, 2020 12:08PM Onthinice1 wrote:

How much preventive benefit do you receive on 5mg?

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Oct 4, 2020 03:42PM MelissaDallas wrote:

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

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Oct 4, 2020 04:48PM Beesie wrote:

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.

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.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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