AI vs. Tamoxifen for premenopausal Stage 2/3

Ammie

I’m noticing a trend with more oncologists recommending AI plus ovarian suppression for premenopausal women, as opposed to Tamoxifen. I’ve been told that that AIs are more effective, but am having a hard time getting actual numbers that indicate how much more effective they are? I’m very worried about side effects and sacrificing quality of life (more meds and stronger side effects of AI vs Tamoxifen), and all for how much added benefit... 2%? 5%

kathabus

I don’t have numbers for you…..but…..you may want to research the SOFT Trial. It's a trial that showed premenopausal women benefit more in higher risk situations with OS plus and AI vs Tamoxifen. This is what my MO referenced when coming up with my treatment plan. For what it’s worth I had a hysterectomy at 43, I’ve been on letrozole for over a year and I am doing good.

Ammie

Thank you so much Kathabus! I will definitely look up the SOFT trial study. It’s encouraging to hear that you’re doing well on letrozole.

I’m also considering getting an oopherectomy because I’m genetically high-risk for ovarian cancer, and noticed that you had this done too - did you notice any side effects that were difficult? How are you feeling now? Thank you so much for sharing your experience

Salamandra

Hi Ammie,

I share your concerns. When I looked up the SOFT trial, it seemed to me that the research evidence for the superiority of AI to tamoxifen for women with relatively low risk cancer is based on pretty limited research, on just one AI, and even then it shows a disparity of results depending on a woman's weight. Overweight women seem to get less benefit from AIs.

This came up when I couldn't tolerate tamoxifen and I wanted to try another SERM (toremifene) before trying OS/AI. At the time I was overweight and it was really frustrating to me that my doc kept pushing OS/AI when it seemed to me the research for it was no stronger than the research for toremifene. Her counter is that there is much more clinical experience using it so she is more comfortable with it. For me, clinical experience is stronger than anecdotal evidence, but not by a whole heck of a lot.

All that said, medicine is an art and the individual body matters. Some premenopausal women do not have a worse time with side effects on OS/AI than on a SERM (and for that, there is truly no way to know but to try). A woman with a higher risk of recurrence will have a different risk benefit calculation than a woman with a lower risk of recurrence. It seems that a lean woman will benefit more from OS/AI than an overweight woman. A woman with bone density issues, clotting issues or other factors might have a whole different set of factors to consider.

That's why it is so so so important to have a doctor in whom you have confidence, and to be willing to push your doctor for research/details.

(I stuck with my doctor, despite my initial frustrations/disagreements, because she was willing to have these conversations with me in good faith, with an open mind, and to be transparent and forthcoming about the research on which she was relying).

Ammie

hi Salamandra,

Thank you for sharing what you’ve found during your own experience and research. I agree wholeheartedly with you; we do have to be our own advocate when it comes to choosing or agreeing to what treatments offer the best benefits against risks. It frustrates me as well that most oncos seem to automatically push for “standard of care”, yet don’t consider the dangerous side effects or poor quality of life which may have worse impact than their target goal of saving our lives from just the cancer. I get that anti-cancer is their job, but at what cost — heart attacks, broken bones, strokes, or uterine cancer instead?

How are you doing with the toremifene? When you had the poor experience with Tamoxifen, was it with the pill format? I’m wondering because there are many manufacturers of the generic pill form, and each seem to come with varying side effects. I had asked my onco to prescribe only the brand name, and she prescribed Soltamox - which is Tamoxifen in the liquid format. I’ve heard anecdotal stories from other women that the liquid format is friendlier in terms of SE, but have not started yet. Since then, I’ve switched oncos (my new onco specializes in genetic high risk), and now I’ve been advised to take an AI plus OS instead of the Soltamox, so am now at this crossroads.

I hope you’re doing well.

Salamandra

Hey Ammie,

I tried about 4 different brands of the solid form (over about a year, I think) and was completely exhausted - literally - that was my main intolerable side effect. I needed about 14 hours of sleep a day on tamoxifen. I was interested in trying the liquid form but by the time my oncologist had looked into it for me I had done the research on toremifene and she agreed to let me try that. If that hadn't worked, I would either have tried the liquid tamoxifen next, tried OS/AI, or given up on the meds. I honestly don't know which, and so far I haven't had to decide.

(My understanding is that there is no name brand, at least not for the pill. The original manufacturer doesn't make it any more and it's effectively all generic).

The toremifene has been working out great for me. I was able to go back on bupropion and the side effects (mostly heartburn and hot flashes) come and go and just aren't so bad. My doc and I were concerned that insurance might not cover it because it is off-label use, but maybe because of the history of trying all the brands, I had no issues. Even with insurance, I'm paying a lot more than for tamoxifen, but it's well worth it for me. If things stay the same with the side effects, I can definitely see staying on it 5 years, 10 years, even more if that's the recommendation when I get there.

It seems like you are at a higher clinical risk level than I am, between the positive nodes and known genetic issues. I can only imagine it's a really challenging decision.

FWIW, based on these boards I think there are some premenopausal women who do *fine* side effects wise on OS/AI. One thing my doc emphasized to me was that I could try it and if I hated it, just stop.

Good luck and thinking of you!!

Monarchandthemilkweed

Due to my chek2, my family history of ovarian cancer (sister, aunt, cousin) and my Mammaprint results, at 45 my onc is recommending a hysterectomy and A1’s bill start on tamoxifen first until I can get the hysterectomy. I have to first finish my breast reconstruction. It’s a lot but from what I’m reading it’s the correct thing to do.

Ammie

Hi Salamandra,

Its such a long haul of trial-and-error going through all the brands and forms of hormone blockers. I’m so glad that you’ve been doing well with the toremifene. Thanks so much again for sharing what you’ve been through. I hope things continue to go well! 🙏💕

Ammie

Hi Monarchandthemilkweed,

Ugh, I’m sorry to hear about the Chek2. I can commiserate — I have a PAL B2 mutation that puts me at risk for ovarian as well... and an oopherectomy seems to be in my future. Good luck and hoping your remaining treatments and procedures go well.