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

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.

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!

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.;)

I have listened to a few medical podcasts talking about outcomes. From them I learned that up to 50% of women quit their AI’s before they are supposed too due to side effects. I have not heard or read that quitting early increases the chances. But it would make any estimates for you ‘unknown’. That is why i decided early on I would be doing the radiation if given a choice, because I don’t know if I will be compliant with the AI’s. I did recently learn from another support group that is if you are not tolerating an AI sometimes it is the brand and you may not have to switch the AI just brand. Also there is at least one more recent study showing that lower doses can sometimes be just as effective.

Have any of you had surgery? Or are you trying to make it without having to have surgery?? I would love to talk to someone who is trying to avoid surgery. That's what I am doing at this point. I have one DCIS, one Invasive, and one atypical, all in one breast, none in the other breast. But they started me on anastrazole while I learned more and went through more testing, etc. I had several kinds of cancer...lung, ovarian, and breast, and I needed some time to think. Anyway, believe it or not, the breast cancer is hiding. We can see the titanium clips that were inserted when biopsies were done, but can't see the cancer. I am 75; there's only so long I can wait to have surgery, but I am trying to make it for the rest of my life without having surgery. I'm concerned that because of my medical history, I will die if I have a mastectomy. I would do it in a minute if I could get a lumpectomy, but am told by the surgeons that with the three things together, my breast would be very deformed with a lumpectomy - might as well have a partial mastectomy of that one breast with all the cancer. I'm still thinking about it; I mean, do I really want someone doing a partial mastectomy, digging around when they can't see the cancer and it's not in the clips anymore??? I just don't know what to do but I'm sort of forgetting I even have it. Scared to death about when it will suddenly pop up. As long as the anastrazole works....I am told it could work anywhere from 2 years to 20 years. It has now been 2 years, last MRI, US, Mammo were in June. Fingers crossed! I will so enjoy the support from this group, and will be supportive to all of you. Hugs.

Update: Spoke with my medical oncologist yesterday and told her that I have decided to not take AI drug. She was professional and just asked for my reason and I told her because of the potential side effects. My GP supports my decision. I feel relieved that the decision has been made and I can now focus on my lifestyle - exercise, diet, creativity and relaxation. As others have said, the decision on AI drugs is a personal one. I trust my intuition and know that I have made the right decision for me. All the best to everyone struggling with the decision.

Welcome to Connect. I certainly hope you'll find some helpful answers here. I'm going to ask a few questions to clarify things so members can better respond. You have breast, lung, and ovarian cancer? Are they connected and currently active? It seems like the breast cancer is totally controlled by the anastrozole right now? Most members with breast cancer do have surgery--either mastectomy or lumpectomy--and might know more about partial mastectomy vs. lumpectomy. I only had a lumpectomy, which because of large breasts and outer location is not very visible, which I'm glad of! Wishing you all the best with a complicated sounding situation.

@spanz

Are you on MyBCTeam?

A friend on there posted about lowered doses and I posted about trying different manufacturers of the same AI.

Ovarian cancer - had surgery, over and done but could come back. I'm not worried about that.
Lung - had surgery, had radiation, had immunotherapy twice. It's quiet right now and fingers crossed it stays that way.
No other cancer I have or have had is connected to one another.
Breast is the big problem. And that's because of the three locations in the one breast, so some types of treatment (like freezing the cancers) are not acceptable for me. And since they can't see the cancer right now, how could they possibly do a lumpectomy? I'm definitely not the expert, but I was told by one surgeon that they just make sure they do a mastectomy and get every bit of tissue to ensure they get the cancer. Not excited about that.
I am meeting with quite the expert in a week and hope I will feel more comfortable making one decision or another. I know there are some patients at MD Anderson who are taking a chance like I am right now. I have one friend whose breast cancer had metastacized before it was even discovered about 12 years ago. She was put on tamoxifen for TEN YEARS, and it recently stopped working, so she is now on Letrazole...about two years.

I can imagine how much relief you must feel, just to have made that decision. Have you already had surgery? Or were you only doing the AI?
That's one thing that bugs me, that if I have surgery, I am told I would still need to take the AI.