Looking for research re: taking AI drugs vs not taking them

Posted by celestebradham @celestebradham, Jan 4 10:38am

I am currently taking Exemestane. I’m 61. Took a while but I’m doing well on it (doing yoga, pranayama and acupuncture). I now have osteopenia after taking it six months. I’m trying to find research on taking AIs vs not taking. What I’m finding there is not much difference between taking and not taking. But more likely to get arthritis and osteoporosis.
Can anyone post links. .

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Profile picture for peggydobbs @peggydobbs

According to Google: “Tamoxifen was approved by the Food and Drug Administration (FDA) in the United States on December 31, 1977, for the treatment of advanced breast cancer. It was subsequently approved for the prevention of breast cancer in high-risk women in 1998. ...The third-generation aromatase inhibitors (letrozole, anastrozole, and exemestane) were approved in the late 1990s for estrogen-dependent postmenopausal breast cancer.”

I assume that the scientific studies that led to approval were done before 1998—in other words, almost 30 years ago. Perhaps your public library’s reference desk can help you search scientific journals for the studies that led to approval.

As best I can tell, prescribing AIs is considered “standard of care”. I’m guessing that by today’s standards it would be unethical to have a research study where one group got standard of care and another group got nothing. This video is 5+ years old, but I've never found anything better. It discusses how much each treatment (surgery, radiotherapy, AIs) reduces risk of recurrence.


I’m neither an MD nor a scientist and I have no connection with Oster Oncology. If anything I’ve said is incorrect, please let me know.

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@peggydobbs Great video thanx! He doesnt explain what is meant by recurrence, does he include local for those statistics or anywhere (stage 4)? i think the stats must be quite different for each
i had local 2.5 yrs later after rad but no hormone blocker. I never took vit D supplemts which no doubt contributed in the first place, as i live up north, my family dr was negligent as she never advised me for vit d

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Profile picture for cashemire @cashemire

@peggydobbs Great video thanx! He doesnt explain what is meant by recurrence, does he include local for those statistics or anywhere (stage 4)? i think the stats must be quite different for each
i had local 2.5 yrs later after rad but no hormone blocker. I never took vit D supplemts which no doubt contributed in the first place, as i live up north, my family dr was negligent as she never advised me for vit d

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@cashemire I had a low vit D Dr at one point prescribed 50,000 units once week I took for 6 mos then it was normal - the Dr let me down knowing I had a vit d deficiency and never TS checked all these yrs later I asked they said didn’t need it - ps Vit D is a mystery I live in the SE in the sun and Vit D was low low that’s when I got the news Breast Cancer Stage 1 I now take 2000 units daily and continue in the sun - just not sure abt taking the hormone blocker pills 😞
Good luck with all.

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This is all I read side effects upon side effect - take another MED for side effect- easy to say when they are Not experiencing- I had stage 1 lumpectomy in July finished 5 day target Rad
October N Nodes Onco 3 Ki67-10- it’s now Nov I haven’t taken anything in hormone receptor I don’t know if I should or not at this point.

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Profile picture for brooklyn22 @brooklyn22

This is all I read side effects upon side effect - take another MED for side effect- easy to say when they are Not experiencing- I had stage 1 lumpectomy in July finished 5 day target Rad
October N Nodes Onco 3 Ki67-10- it’s now Nov I haven’t taken anything in hormone receptor I don’t know if I should or not at this point.

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@brooklyn22
I also had stage 1 ILC lumpectomy (7mm) in October, Ki67 is 5, no nodes. I'm 72 & am getting 5-day whole breast radiation soon. I agree about all the confusion surrounding the drugs. I think I'll sign up for the lowest possible dosage of Tamoxifen for 3 months, just to try it. But I doubt I'll stick with it & will probably just continue to improve my healthy lifestyle in every way possible. I also agree that taking an A.I. which weakens bones, but then adding another osteoporosis drug on top of that to strengthen bones isn't appealing. Best of luck to you!

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I’ve been following and occasionally commenting on this discussion for months since I had to wait 3 mos to get a Dexa scan before starting an aromatase inhibitor (anastozole). Had DCIS grade 2 -3, ER + 90-100% and PR+ 70-80%, lumpectomy and radiation via 3 brachytherapy sessions. I am 70 so I am worried about the bone and possible cardiac effects. I have mild osteopenia that was fairly stable since 2022. I tried to decide if maybe I would be one of the “lucky ones” and have few side effects, or whether it was worthwhile. Ultimately, I decided that I would hate to have a recurrence if I don’t at least try it. It took me a week after I filled the prescription to get up the nerve to even swallow one pill! I decided to take it at night since many of you wonderfully informative ladies have said that it works better for you. I want to thank all of you for your input a thousand times over, it helped push me over the edge to at least try it. I do wish there was a thread (maybe there already is one) for ways to cope with the side effects and for generally OK experiences. Understandably, the people that are doing reasonably well don’t post, making it look like it’s dreadful for the majority of us. If I do OK, I plan to let everyone know in case there are others that need some reassurance.
I’m so thankful for this support group, my oncologist is wonderful, but could only say “I think that you will be one of those who has minimal side effects” with zero explanation why.

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Profile picture for jmab @jmab

@brooklyn22
I also had stage 1 ILC lumpectomy (7mm) in October, Ki67 is 5, no nodes. I'm 72 & am getting 5-day whole breast radiation soon. I agree about all the confusion surrounding the drugs. I think I'll sign up for the lowest possible dosage of Tamoxifen for 3 months, just to try it. But I doubt I'll stick with it & will probably just continue to improve my healthy lifestyle in every way possible. I also agree that taking an A.I. which weakens bones, but then adding another osteoporosis drug on top of that to strengthen bones isn't appealing. Best of luck to you!

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@brooklyn22 My numbers are almost identicial to yours, stage 1 ILC, 7mm, lumpectomy, Ki67 3 and onco score 5. 5 course radiation. I am 69. I had my surgery last February and almost 10 months out. After reviewing all the research, etc. and an honest dialogue with my oncologist, I chose not to take AIs because of how low my risk is. I know there are no guarantees. He fully supported my decision and made a comment as I was leaving, "there has been a lot of discussion in our field that we are overtreating early stage breast cancers, possibly doing more damage than good." WHO KNOWS??? No guarantees either way. My final decision was based on the fact I believe the next 10 years, (when I will then be 80) will be my best. I am consulting on a very meaningful project and need my brain! I have an active lifestyle and play with my grandchildren a lot. I am going to enjoy this time, and if I have to revisit my decision down the road, I will! Good luck, boy do I understand where you are at in your thought process.

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