Could someone please help me understand Tamoxifen?

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OK, so I am 46 years old and was kind of on the cusp of menopause (I think..maybe) right before I was diagnosed last year and started AC then Taxol chemo. I went through the hot flashes from hell and still have those at least nightly. After breast surgery and radiation, I still haven't had a period, and my estradiol came back at less than 5 last week. But, my MO says we can't assume I'm menopausal until a year of no periods (not because of chemo). I'm first of all terrified of the potential for blood clots or stroke from Tamoxifen. But, isn't there also some downside to taking Tamoxifen to combat the estrogen if I don't really have any? I can't seem to make myself commit to this.

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  • moth
    moth Member Posts: 4,800
    edited April 2021

    how strongly er+ was your tumor?

    You could consider an ooph and aromatase inhibitor instead. Or use lupron? Not sure if their risk profiles would be more acceptable to you.

    Bottom line is an assessment of risk recurrence and how much that risk goes down with hormone therapy. Predict can give you an estimate but your MO should also give you a personalized estimate

    https://breast.predict.nhs.uk/tool

    It's tough making these decisions. The endless decision making is so exhausting & draining. Best wishes


  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited April 2021

    Susiemommy, the catch is that your body continues to produce at least some estrogen after menopause. Yes, clots and strokes are potential side effects of Tamoxifen, although not among the more common SEs. However, the much more common side effect of osteoporosis with an AI led me to choose to take Tamoxifen since I already have osteopenia. Unfortunately, there are no choices here without some attendant risks. Hugs and best wishes for you as you are making yet another decision about treatment.

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited April 2021

    Hi,

    Tamoxifen does have possible clot SE but does not happen to everyone. I did 5 years of Tamox and then 5 of letrozole. I was pre-menopause when I got cancer and had one period when I had my mx done and that was the last one I had. Started the meds and kind of went into menopause that that point and not even 50 yet at point.

    My feeling was always the meds were helping to keep caner coming back and if it helped I was taking it. I knew the MO was checking me all the time and I knew what to watch.

    Best wishes to you!

  • Susiemommy
    Susiemommy Member Posts: 62
    edited April 2021

    Thanks, moth. The predict tool is kind of neat. It doesn't seem to think hormone therapy would change my percentages very much, so maybe I'm using it incorrectly. I was very ER+...86% I think. I thought about going the Lupron/AI route - and my MO said we could consider it - but it, too, has that risk of heart issues. I guess I am just leary of them both as I have a family history of stroke and heart disease which leaves me a bit nowhere.

  • Rah2464
    Rah2464 Member Posts: 1,647
    edited April 2021

    Susiemommy please get a baseline DEXA scan as you are premenopausal. Tamoxifen is great on bones for post menopause, not so if you are pre.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited April 2021

    Susiemommy, even if you are postmenopausal, there will still be estrogen floating around your body to fuel cancer cells - IF there are any remaining cancer cells and chemo didn't kill everything already. I say that not to influence you into doing hormone medicine, but just so you are fully informed. Hormone medicine works by further blocking estrogen beyond what menopause would do. In the case of Tamoxifen estrogen is blocked from breast tissue and breast cancer. In the case of AIs estrogen is blocked from a few more body parts too, so those are slightly "stronger" drugs.

    I have run the gamut of hormone medicines. They are all quite different from each other in terms of tolerability and side effects. If you work with your MO you will probably be able to find something that is tolerable for you - there are a LOT of hormone drugs out there.

    However, every hormone drug has eventually failed for me. All of my recurrences have happened on hormone therapy. An MO would later tell me that my subtype behaves somewhat more like a triple negative cancer, actually. For example, even though I was Stage 1A and node negative, even in the beginning I was only something like 70% ER+ and 80% PR+, with a Grade 3 cancer, and an Oncotype of 32. My subtype of hormone receptor positive breast cancer is was not fully reliant on hormones, and because of that, hormone medicine has not always worked for me. Still, I got a couple of "cancer free" years out of it.

    So in your case, your doctors probably have some idea about the nuances of your cancer, and how it will likely behave. Will hormone therapy be effective for you? Will chemo be effective for you? Our individual breast cancers are so different that what works for one person here may not be applicable for you. For those who are 100% ER+, with lower grade cancers, hormone therapy often does work better than chemo. For others, (like me) not so much. It really depends.

    I don't know where you fall on this spectrum of course, but one of the hard truths to this disease is that things do not get easier if you have a metastatic recurrence. Sometimes people say "if it's going to happen, it's going to happen..." but I think it's good to delay that happening if possible. Hormone medicine can do that.

    Best wishes whatever you decide, truly.

  • labelle
    labelle Member Posts: 721
    edited April 2021

    talk to your oncologist about your concerns re blood clots while taking tamoxifen. When I expressed my concerns about blood clots, my oncologist suggested I take a low dose aspirin daily, which I did for the entire time I used tamoxifen.

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