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New member: stopping AI is a greater risk of reoccurrence?

Posted by suze25 @suze25, 2 days ago

I am 76 and was diagnosed with breast cancer on March 31st. My cancer was found in a backwards way. I had a clear mammogram in December 2024 and breast reduction surgery in February 2025. A 3 cm tumour was found in the 1kg of tissue that was removed from my right breast. I am so thankful I had the reduction surgery.
In May I had sentinel node surgery and 6 nodes were removed and they were clear. Tumour is Estrogen+ progesterone +, HER2-; grade 2; onco score 9; no DCIS. I just finished 5 days of radiation.
Radiation oncologist said the radiation would reduce my risk of reoccurrence from 8% to 2.4%. (I’m pretty sure that is local reoccurrence.) Medical oncologist said taking AI would reduce my 10 year risk of dying from this BC from 8% to 5%.
I have an appointment with my oncologist next week to tell her if I agree to take Anastrozole. I am still undecided considering my age. It’s a personal decision but I do appreciate what members have written about their experience.
I have read anecdotally that starting hormone blockers and then stopping can increase your risk of reoccurrence. Does anyone know if there has been any research done in this area?
Thank you for sharing your stories. I am so pleased that I found this group a few days ago.

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

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tullynut | @tullynut | 1 day ago

I have continued on using AI medications beyond the five-year window. I take anastrozole every day. I have not had any issues with this medication, thankfully! When I met with my oncologist a year ago, shortly before I reached the five-year mark, he asked me if I was having any problems with the anastrozole, and if I had considered continuing it even beyond The five year window. I told him I had thought about that, was not having any problems with it. He told me my risk of recurrence would be less if I continued on it, and if I wasn’t having problems with it, he strongly advised me to continue.

My family has a strong family history of dementia. My mother had dementia, now my older sister has dementia and one of my two younger brothers has dementia. A study done in 2024 from the university of Pittsburgh looked at women taking aromatase, inhibitors and dementia. This was an initial study, but it did find that women who took a romantic taste. Inhibitors were significantly less likely to develop dementia.

I look at it this way, I tolerate the anromotase inhibitor, it lowers a risk of recurrence of my breast cancer, and it very likely is giving me some protection from developing dementia.

If I had issues with aromatase inhibitors I might feel differently. I am 73 years old, and participating in a study, looking at individuals who come from families where dementia is prevalent trying to determine why some family members do not seem to be affected by dementia. It’s a three year study and involves video games on the computer of all things! It’s quite challenging and I am in year three, the final year. My accuracy levels each and every year have been 85% plus.

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engelwags | @engelwags | 1 day ago
In reply to @tullynut "I have continued on using AI medications beyond the five-year window. I take anastrozole every day...." + (show)
Profile picture for tullynut @tullynut

I have continued on using AI medications beyond the five-year window. I take anastrozole every day. I have not had any issues with this medication, thankfully! When I met with my oncologist a year ago, shortly before I reached the five-year mark, he asked me if I was having any problems with the anastrozole, and if I had considered continuing it even beyond The five year window. I told him I had thought about that, was not having any problems with it. He told me my risk of recurrence would be less if I continued on it, and if I wasn’t having problems with it, he strongly advised me to continue.

My family has a strong family history of dementia. My mother had dementia, now my older sister has dementia and one of my two younger brothers has dementia. A study done in 2024 from the university of Pittsburgh looked at women taking aromatase, inhibitors and dementia. This was an initial study, but it did find that women who took a romantic taste. Inhibitors were significantly less likely to develop dementia.

I look at it this way, I tolerate the anromotase inhibitor, it lowers a risk of recurrence of my breast cancer, and it very likely is giving me some protection from developing dementia.

If I had issues with aromatase inhibitors I might feel differently. I am 73 years old, and participating in a study, looking at individuals who come from families where dementia is prevalent trying to determine why some family members do not seem to be affected by dementia. It’s a three year study and involves video games on the computer of all things! It’s quite challenging and I am in year three, the final year. My accuracy levels each and every year have been 85% plus.

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Wow! You are blessed with 2 wonderful situations: no side affects from your AI, PLUS the benefit of possibly delayed (or prevented) dementia. That would be a great incentive to stay on the meds. I am now on my 3rd type of AI meds (exestemane) and just over a year in. I'll stay on it because so far, it's doing it's job, side affects notwithstanding. Its always so great to hear good news, and promising outcomes. Thank you for sharing!

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jlgc | @jlgc | 2 hours ago

I am 76 also with DCIS grade 1-2. Started Anastrozole hated the side effects I had including the potential for osteoporosis…I stopped taking it 2 yrs ago. Yes it increases my risk but the 5 days of radiation decreases it. So that’s my decision and I am sticking to it. I would like to live out the rest of my days without side effects, feeling sick and too weak to walk or hike. I’m happy keeping my hair in place and my muscles and joints, for what they are without
aches and pain. Now if I was 50 I imagine I would have a different view. But here I am.;)

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