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 ruffianfan55 @ruffianfan55

I’m 70, diagnosed with DCIS and maybe a tiny amount of IDC (depends on who you ask!)
I had a lumpectomy and targeted radiation, then had to wait 3 months for a Dexa scan to ensure that my mild osteopenia is stable. (It is).
I see the oncologist tomorrow and am still on the fence whether to take an aromatase inhibitor. I keep researching, and found that women who breastfed tend to have less aggressive BC and their tumors are less likely to return. I breastfed for 2 years total with my 2 kids. My tumor was 8 mm, ER+PR+ and I had no micro calcifications, it was seen by MRI. I was having a slight nipple discharge, and mammogram was negative, ultrasound negative, but MRI showed non mass enhancement. My chance of recurrence is 4-5% without endocrine therapy and 2-3% with it. Not sure that it’s worth it since I worry about heart disease, osteoporosis, etc. like everyone else. What if I don’t have bad side effects? This is really hard. I wish that I knew people that weren’t bothered by them all that much, but they seem to be outliers. If I was 50 or even 60, I’d give it a go, at 70, it doesn’t seem as necessary.
Anyone else heard of the breastfeeding link?

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@ruffianfan55

I really like your breastfeeding post which is encouraging.
I breastfed 17 months.

Tying into all this is the type of BC and does that type tend to re-occur. That is the crux of it combined with the breastfeeding.

Please post if you find any more information.
There are a lot of folks who did breastfeed so that may answer this idea or not.

I have never seen that post mentioned on the BC site that I use.
Interesting question.
(Just a thought….Prior generations who all breastfed still got BC. Then there were no easy cures and probably no notations of how many did not get BC again.)

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Profile picture for timely @timely

@ruffianfan55

I really like your breastfeeding post which is encouraging.
I breastfed 17 months.

Tying into all this is the type of BC and does that type tend to re-occur. That is the crux of it combined with the breastfeeding.

Please post if you find any more information.
There are a lot of folks who did breastfeed so that may answer this idea or not.

I have never seen that post mentioned on the BC site that I use.
Interesting question.
(Just a thought….Prior generations who all breastfed still got BC. Then there were no easy cures and probably no notations of how many did not get BC again.)

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@ruffianfan55

Here is the reply from MyBCTeam site.

MyBCTeam
Does breastfeeding affect breast cancer risk?

“Breastfeeding is associated with a slightly lower risk of developing breast cancer compared to not breastfeeding. Women who breastfeed for at least one year gain the most protective benefit.

The protective effect may occur because:
- Breastfeeding delays menstrual periods from returning, reducing exposure to hormones
- Breast cells actively producing milk are less likely to undergo cancerous changes
- Women often maintain healthier habits while breastfeeding, such as better diet and avoiding alcohol and smoking

However, breastfeeding doesn't guarantee prevention. Many women who breastfed still develop breast cancer, and the risk reduction is described as "slight." Regarding recurrence and metastasis:

The search results don't contain specific data about breastfeeding's relationship to cancer recurrence or metastatic breast cancer. About 30 percent of women diagnosed with early-stage breast cancer later develop metastatic disease, regardless of breastfeeding history.

If you're looking for more personalized insights about other members' experiences with breastfeeding and breast cancer, connecting with others on MyBCTeam might provide valuable perspectives from those who've been through similar situations.“

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I was stage 2A. 4years out I getmmograms and an every 6 month check up with my oncologist. I got peripheral neuropathy from the chemo and I can't drive. Otherwise,I'm in good health. I try to stay busy. I recently took a 24 hour trip home from Portland in coach on the train. I breast fed my two youngest children.

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Profile picture for cancerstage1 @cancerstage1

I totally agree with you. I took anastrazole for one year stopping for weeks at a time to relieve the side effects. they were too numerous to list. I started letrozole and although the side effects were different they were bad as well. I had tingling in feet, hands and neck, neurologist told me after many tests that it was not neuropathy, that it was the Letrozole. I stopped it.
this is a terrible medicine given to anyone between 50-100 years old, sort of one size fits all. This is very wrong. If I were 55 years old, perhaps it would be worth it but at 76 years old, it is a miserable way to live for the next 10-15 years. I wish they would do studies for different age groups and assess if this medicine is right for everyone. all the studies are done for younger patients. My body was different at 50, at 60 and at 70. Now that I am 76, my body does not compare to my younger body, so how can this medicine be right for me now . I am confident that I will die from something else and not my stage 1 breast cancer.

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@cancerstage1
I appreciate your viewpoint! I am 72 & recently diagnosed with stage 1a ILC & had a successful lumpectomy. I'm leaning toward 5-day radiation but no drugs. I am vegan & work out regularly, no alcohol or cigarettes. I agree that more emphasis should be placed on the quality of life for women of different life stages when recommending treatment options. Many of us older ladies prefer to enjoy our golden years fully, even if that means a somewhat increased risk. It's an individual choice. Best wishes to you on your journey!

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I started treatment for Stage 1, Grade 3 TNBC in early 2023. Finished lumpectomy, chemo, proton radiation. Tumor came back in same location 6 months later. December 2024, I started Keynote 522 chemo and Keytruda and finished in June 2025. I had mastectomy in July. I had to quit Keytruda as it was attacking my gut. The pathology from the surgery suggested the TNBC was gone, but remaining cancer was now ER+. I started on AI Letrozole, but after one month asked to be switched because of terrible side effects (joint pain, bone ache, dry mouth, depression). I will start Exemestane in two weeks instead. I am being treated at Dana Farber in Boston so fairly confident with doctors, but I did ask about the tradeoff of feeling so awful from the AI drugs and what percent it decreased my chances of recurrence. I'm a very young 74, very active and was walking plus lots of yoga throughout my whole treatment. With the Letrozole I could hardly get up and down and started tearing things. My doctor thinks I should be on AI because of my fast recurrence. I'd like to hear other stories and links to research as I'm not sure I want to live with the side effects of AI meds if they do the same as Letrozole. Thank you.

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I was Dx with DCIS at age 75. I had a lumpectomy and 30 treatments of radiation. I refused to take all the AI drugs due to the side effects. The oncologist was not happy but said she respects my ability to choose. At my age I prefer a better quality of life then to suffer with the side affects of those drugs. I made a choice and am willing to take the risk of recurrence. Do what is best for you.

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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 This video was fantastic. Thank you so much for posting it.!

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Profile picture for keywestsj @keywestsj

@peggydobbs This video was fantastic. Thank you so much for posting it.!

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@keywestsj Agree. Very informative.

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Profile picture for beckyboston @beckyboston

I started treatment for Stage 1, Grade 3 TNBC in early 2023. Finished lumpectomy, chemo, proton radiation. Tumor came back in same location 6 months later. December 2024, I started Keynote 522 chemo and Keytruda and finished in June 2025. I had mastectomy in July. I had to quit Keytruda as it was attacking my gut. The pathology from the surgery suggested the TNBC was gone, but remaining cancer was now ER+. I started on AI Letrozole, but after one month asked to be switched because of terrible side effects (joint pain, bone ache, dry mouth, depression). I will start Exemestane in two weeks instead. I am being treated at Dana Farber in Boston so fairly confident with doctors, but I did ask about the tradeoff of feeling so awful from the AI drugs and what percent it decreased my chances of recurrence. I'm a very young 74, very active and was walking plus lots of yoga throughout my whole treatment. With the Letrozole I could hardly get up and down and started tearing things. My doctor thinks I should be on AI because of my fast recurrence. I'd like to hear other stories and links to research as I'm not sure I want to live with the side effects of AI meds if they do the same as Letrozole. Thank you.

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I’m really out on the fence with taking any of these medication‘s. I have E&P positive HER2 negative with a 1.2 cm tumor that I had a lumpectomy for in July. Onco score 3 KI 67 10- brca Neg N Nodes- I thought I would be done did five day target radiation and of course drs they’re telling me to take hormone receptor pills which all I’m hearing about are very bad side effects!! radiation stopped in October almost the end of November and I’m not really sure I want to even try one of those pills I think at this stage of the game 2025 yes doctors and scientists have made great discoveries but what kind of discovery on hormone pills you have to take 10 pills to try and offset
Side effects!!? I salute all of all of the warriors that are going through such horrible horrible times with breast cancer or any cancer I hope one day we could all see that they’ll be one shot and it’s gone.

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