Stopping Tamoxifen- Pre-Menopausal Osteoporosis

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Anonymous
Anonymous Member Posts: 1,376
edited June 2020 in Hormonal Therapy - Before, During, and After
Stopping Tamoxifen- Pre-Menopausal Osteoporosis
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  • rokel
    rokel Member Posts: 40
    edited June 2020

    I've been on Tamoxifen since October 2017 and thought I had very little side effects from it (no hot flashes, etc). I broke my ankle in two places after being on 20mcg for one year after a low-impact fall. It required surgery and almost a year of PT to recover from. It took a long time to get the diagnosis as my oncologist did not think I needed a dexa scan (I was 39 at the time) but over the past year I finally received a diagnosis of low bone density and my most recent scan shows that I now have osteoporosis in my spine (they said they technically can't give me that diagnosis because I'm still getting my period). I've been on 10mcg and then 5mcg of Tamoxifen, but the lower dose doesn't seem to lessen the effects on my bones. They have been looking into other reasons for my bone density issues (I take a nontraditional thyroid medication and probably don't get enough calcium), but with a loss of 7% in my spine in one year I think, sadly, the writing is on the wall. I'm not seeing my oncologist until November, but I wonder what my monitoring will be like once I'm off Tamoxifen? Right now I'm getting yearly MRI's and mammograms. I was stage 1a and my oncotopye score was 11 and I'm 40 years old.

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  • pupmom
    pupmom Member Posts: 5,068
    edited June 2020

    Sorry you are going through all this. But, how do you know the problems you're experiencing are related to Tamoxifen? Have you talked to your onc yet?

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2020

    rokel, Tamoxifen actually tends to improve your bone density and bone health. Are you on ovarian suppression or anything else? You should ask your doctors about other possible causes. Best wishes and I hope you find some answers soon.

    See: https://www.breastcancer.org/treatment/hormonal/serms/tamoxifen

    Tamoxifen offers other health benefits that aren't related to treating cancer. Because it's a SERM, it selectively either blocks or activates estrogen's action on specific cells. While tamoxifen blocks estrogen's action on breast cells, it activates estrogen's action in bone and liver cells. So tamoxifen can:

    • help stop bone loss after menopause
    • lower cholesterol levels
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  • rokel
    rokel Member Posts: 40
    edited June 2020

    that’s actually not true. Tamoxifen only helps bones if you are post-menopausal. If you are pre-menopausal it can damage bones. For most women it is not too severe, but according to the bone specialist I am seeing at Hospital for Special Surgery, she has seen some women who are more sensitive to it.

    They know it is from tamoxifen because they tested my bone turnover rate regularly while adjusting my thyroid medication. It was not affected by changes in thyroid which leads them to believe it must be tamoxifen. I am being seen by bone specialists at Sloan Kettering and HSS and they tested me for every other possible cause. They also said to see major bone loss at the spine as opposed to neck and hip is a sign that the issue is hormone related

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2020

    rokel, I stand corrected, thank you for explaining that more.

    Hopefully more people will chime in soon. Please keep us posted if on what you find out.

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