Premenopausal on Raloxifene for breast cancer risk?

Posted by rose33 @rose33, Jan 31 5:50am

I am 42yo, premenopausal, and high risk for breast cancer due to family history. I alternate MRI/Mammo every 6mo and tried but did not tolerate Tamoxifen as prophylaxis. My Dr has offered raloxifene as an alternative and says my menopausal state should not matter, even though it has not been tested on premenopausal women.
Does anyone else have experience with taking raloxifene premenopausal? Other thoughts on being high risk? Thank you.

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Rubyslippers | @triciaot | Feb 5 10:49pm

I don’t have experience with raloxifene but from what I’ve read you seem to be right that guidelines for use do not include premenopausal women. The National Comprehensive Cancer Network conference starts in 2 days and there may be updated research presented that will impact breast cancer protocols. The NCCN website usually posts their findings.

I am on tamoxifen and have tried multiple doses. For me, the side effects were dose dependent. I couldn’t tolerate 20 or 10 mg, but 5 mg is okay. I found side effects increased at 2 weeks and ramped up for about 6 weeks - but it took me 3 months to get the full effects, and for the side effects to sort of stabilize. In reverse, when I dropped down to a lower dose it took 3 months to really get rid of the problem effects. I only mention this in case you were on the higher dose and the doctor didn’t offer a lower dose. It might work. But I do realize that tamoxifen is just horrible for some of us, I don’t want you to think I’m pushing you to take something that was really bad for you.

rose33 | @rose33 | Feb 6 9:02am

Thank you so much for sharing your perspective. I will look out for any updated protocols. I did try the higher dose of tamoxifen so will ask if a lower dose could be an option. I’ve heard it called “baby tam” - how cute 😛
Thanks again!