Tamoxifen, risk of recurrence, and endometrial hyperplasia

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lilmouse
lilmouse Member Posts: 10
edited December 2014 in Hormonal Therapy - Before, During, and After

I've recovered pretty well from surgery and am almost done with radiation. My oncologist said she would like me to start on some sort of hormonal treatment, most likely tamoxifen, as my next step. I am nervous about taking tamoxifen because of the side effects, specifically the risk of blood clots and endometrial cancer. But I'm also nervous about not taking it.

I have been trying to find information about how much tamoxifen will reduce the risk of recurrence. Are there any general percentages available saying that tamox reduces the risk by X amount? Or does it vary too much by case?

About 3 years ago, I had a uterine polyp removed and was told I had complex endometrial hyperplasia, without atypia. I ended up getting a Mirena IUD, partly to reduce the hyperplasia and partly for birth control. Three months ago I was diagnosed with ILC (40% ER 2+, 100% PR 3+.) I suspect the Mirena may have contributed to the growth of this cancer, and I'm now very wary of mucking around with my natural hormone levels any further. But I don't want the breast cancer to return either.

Does anyone know of any statistics, or have any similar experiences to share? Thanks!

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  • Annette47
    Annette47 Member Posts: 957
    edited December 2014

    The number I've consistently heard is a 40% reduction in risk from the Tamoxifen. How much that is in absolute terms of course depends on what your level of risk is to begin with.

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  • goodprognosis
    goodprognosis Member Posts: 251
    edited December 2014

    Lilmouse

    I was on Tamoxifen for 6 months after finishing radiation.  I stopped it because of SE's of crazy flushes, a lot of abdominal pain and mood swings.  Three weeks ago I had two uterine polyps removed that my surgeon thinks are benign (awaiting pathology) but he said they were very typical of tamoxifen endometrial thickening- which is usually benign.  I stopped taking the Tamoxifen 18 months ago and still this happened.

    Your onco should be able to tell you exactly the percentage of increased protection against recurrence that tamoxifen will give you.  It all depends on your tumour, grade, etc. and your age.  You shouldn't have to search for this info yourself, even your GP should be able to help you there.

    I would mention that most people who take tamoxifen do not have any side effects at all or at least have very manageable ones.

    Best of luck.

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