Finished 5 years of tamoxifen should I go 10?
I’m 48. Weakly Er+ high oncotype. Trying to decide if I should continue tamoxifen for 5 more years. Onco said it is up to me. Anyone doing 10 years?
Comments
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What was your Oncotype score, and what's your diagnosis and your risk?
For me, if I'd been able to tolerate the Tamoxifen with few problems, that would be the deciding factor. My decision would be very different depending on the diagnosis/prognosis/risk level.
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I took it for 7.5 years and my oncologist advised that I could go off. He told me that studies conclude that 7.5 is as good as 10. There is a test that can determine how much you will benefit from continued use of a hormonal. Special K had this test done and discontinued it because there wasn't an additional benefit. You might want to PM her.
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Here is part of Special K's post on the Breast Cancer Index test that you might find helpful:May 26, 2020 01:05PM SpecialK wrote:
I was Her2+ and did the Breast Cancer Index test at the five year point. BCI gives two results, a figure that predicts recurrence risk, and one that gives an estimate of benefit from continuing anti-hormonal drugs. There are multiple arrangements - high risk of recurrence and high benefit of continuing the drug, low risk of recurrence and low benefit, low risk of recurrence and high benefit, and the dreaded high risk of recurrence with low benefit. Although you are not HER2+, I think this describes the test.
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Here is some information on the Breast Cancer Index test that you might find helpful. "The Breast Cancer Index test, made by bioTheranostics, analyzes the activity of seven genes to help predict the risk of node-negative, hormone-receptor-positive breast cancer coming back 5 to 10 years after diagnosis. The test can help women and their doctors decide if extending hormonal therapy 5 more years (for a total of 10 years of hormonal therapy) would be beneficial.
The Breast Cancer Index reports two scores: how likely the cancer is to recur 5 to 10 years after diagnosis and how likely a woman is to benefit from taking hormonal therapy for a total of 10 years.
https://www.breastcancer.org/symptoms/testing/types/breast-cancer-index-test
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I was 39 at diagnosis. I couldn't tolerate tamoxifen but am tolerating toremifene. Honestly if I were in your shoes, I think I'd keep going past *10* years, and barring unexpected new developments, my current plan is to stay on toremifene as long as I can tolerate it.
My understanding is that they don't have evidence about the benefit after 10 years, which is different from having evidence that it does not continue to benefit. Especially for a woman who hopes to live 40+ years after diagnosis. I think we just don't have enough longitudinal data yet, and so many women stop hormone therapy the instant they can because of side effects.
I am not a scientist and would love to be corrected, but I haven't seen anything that indicates to me that there is something like a lifetime dose of tamoxifen that you build up to and it sticks around. Hormone positive cancer can and does recur 15, 20+ years after initial diagnosis, so it seems to me like whatever cancer cells escaped the body are capable of surviving a longer course of tamoxifen, and we don't have evidence to the contrary.
That said, if you are having side effects that impact your quality of life, it is a whole other equation, and not simple at all.
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