• Tamoxifen- yes or no?

    Asked by chinuk70 on Wednesday, December 11, 2019

    Tamoxifen- yes or no?

    What is everyones experience with Tamoxifen as a preventative treatment for high risk of breast cancer? Hear lots of pros and cons, wondering what others experience with this drug has been.

    7 Answers from the Community

    7 answers
    • Bengal's Avatar
      Bengal

      I am ER+ which I'm told us a very aggressive type. I tried three different AI's and had bad experiences with all. Anastrozole for one year but it made me so lethargic and achy I literally could not function. Next, exemestane. I took ONE tablet and ended up with "temporary" facial paralysis (two months later my face is still numb!). Then letrozole; extreme stomach cramping. All this to say, if there are side effects to be had, I will probably have them. Also, I've had bad reactions to other non-cancer related drugs in the past as well. So.......when my oncologist said AI's aren't working for me, let 's try the old standard, Tamoxefin, I researched potential side effects of Tamoxefin. No Thank you! Knowing my history I made the very scary decision to not take the drug. Right now I'm taking nothing. It is frightening but it was a quality of life now versus a hypothetical reassurance sometime in the future decision.

      about 1 month ago
    • Carool's Avatar
      Carool

      I was lucky and had almost no problem with it (maybe a 10-pound weight gain, but that could’ve been caused by eating too much). My main problem was that my uterine fibroids were growing, which shouldn’t have happened, since I was in menopause. I ended up having an elective hysterectomy, as I feared getting a uterine sarcoma (Tamoxifen is implicated in possibly causing that).

      about 1 month ago
    • Bengal's Avatar
      Bengal

      Carool, I must say your comment kinda blows my mind. You start out by stating "almost no problems" and end with an elective hysterectomy to avoid sarcoma!!!!!!! One of the many reasons I elected to avoid this drug. I can slightly reduce the chance of breast cancer recurrence by possible risking endometrial cancer? In my mind that does not compute.

      about 1 month ago
    • Bengal's Avatar
      Bengal

      And spellchecker strikes again. In the first post I obviously meant to say recurrence not reassurance.

      about 1 month ago
    • Carool's Avatar
      Carool

      Bengal, I see why what I said is contradictory. I meant that I felt fine on Tamoxifen. I was on it for maybe four years when I learned my fibroids were growing (all of this was sixteen or so years ago). At that time I was in an ovarian cancer study at my hospital (MSKCC) and was having quarterly vaginal ultrasounds to see if I had ovarian cancer symptoms; I did not have ovarian cancer, but the growth of my fibroids was detected during one of those ultrasounds. The gynecological oncologist at MSKCC told me I had no signs of a uterine sarcoma, and the hysterectomy would be elective. Nevertheless, I wanted one. It was done laparoscopically. Everything was benign and the operation was pretty easy. Afterwards, the gynecological oncologist said that Tamoxifen had been suspected of causing uterine sarcomas — although that was rare — and he agreed that it was wise of me to have had the hysterectomy. I think that, back then, this suspicion was just becoming known to doctors. When my oncologist suggested Tamoxifen, she mentioned nothing about uterine sarcomas.

      Sorry for long comment. Now I probably would try to take another breast cancer preventative, if possible. Back then, my main desire was to prevent more breast cancer.

      about 1 month ago
    • Dawsonsmom's Avatar
      Dawsonsmom

      It was recommended that I take an AI but after researching potential side effects and talking w women who are taking it, I decided to gamble w my chances of recurrence. A good friend took Tamoxifen and reports no significant side effects. However, her husband reports differently....states she was difficult to live with bc of irritability and was glad when she completed her 5 yrs.

      about 1 month ago
    • chinuk70's Avatar
      chinuk70

      Thanks everyone- definitely a hard choice. Lots to think about-

      about 1 month ago

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