Looking for research re: taking AI drugs vs not taking them
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. .
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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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2 Reactions@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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1 ReactionThis 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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2 Reactions@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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1 ReactionI’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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2 Reactions@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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9 ReactionsI've looked into the scientific research on the effectiveness of AIs. They cut the risk of recurrence in half. One study showed 8% recurrence with placebo, 4% recurrence with anastrozole. And, yes, they are old studies. That's because it's pretty much a settled question that AIs reduce the risk of recurrence. My advice: there are 3 AIs + tamoxifen. Until you've tried them all, you won't know that you can't tolerate any of them.
Taking anastrozole vs not taking it: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)32955-1/fulltext
Tamoxifen vs placebo: https://www.nature.com/articles/s41416-023-02158-5
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3 ReactionsPeggy thank you for the study reference and that is close to research if have seen. Here is what tripped me up, which makes a SIGNIFICANT difference. If your current risk of recurrence is 8%, and you could lower your risk of recurrence by 4 percent, that is 4% of 8 percent, and to me, very little risk benefit. I was shocked when my radiation oncologist explained to me that after radiation, the AI's would lower "overall risk" by less than 1 percent. So ladies, this is an important distinction that I need to further dig in on. An overall risk reduction of 4% is something far different than a risk reduction of 4% of 8%, which is how it was explained to me. I do not want to give anyone inaccurate information, and if anyone can confirm this one way or the other let me know. I will go out and do my research again now on that topic, and speak to my oncologist again. I was told it would benefit me little considering the hefty side effects some experience. VERY CONFUSING. The difference between "overall risk reduction" and "reduction of risk of recurrence".
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4 ReactionsOK got the answer to my own question, and it is worth asking your oncologist whether they are referring to absolute risk reduction (ARR) or relative risk reduction (RRR)
🔍 Two Possible Interpretations of “4% Risk Reduction”
When oncologists talk about how much a treatment reduces recurrence risk, they may express it in absolute or relative terms.
✔️ 1. Absolute Risk Reduction (ARR)
This means:
“Your risk goes down by 4 percentage points—for example, from 5% to 1%.”
✔️ 2. Relative Risk Reduction (RRR)
This means:
“Your risk goes down by 4% of your baseline risk.”
If the baseline risk is 5%, then:
4% of 5% = 0.2% reduction → negligible change
Final risk = 4.8%
I would think ARR is more commonly used, but worth asking as we all make our decision.
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5 Reactions@wyowyld I'm with you on this! I see many women online like me, in our 70's with early stage 1 breast cancer & otherwise active & healthy, who are seriously weighing the decision to diminish our golden years by taking a drug that, yes, reduces the risk of breast cancer recurrance, but tacks on additional side effects & risks like osteoporosis & in the case of tamoxifen (which I would take, given my already thin bones), blood clots & endometrial cancer. For me, it's definitely a gray area. Thanks for raising this important topic.
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