Aromatase Inhibitors: How to choose and manage side effects?

Posted by shebell @shebell, Sep 11, 2024

I was diagnosed in April 2024 stage 1 invasive ductal carcinoma - estrogen positive. I had lumpectomy and radiation my onco score was 12 so was able to skip chemo therapy. I have tried Anastrozole and had terrible side effects I have not tried Tamoxifen yet and am seriously thinking about forgoing any AI long term treatment has anyone else made that choice?

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celestebradham | @celestebradham | Jul 31 6:58am

In reply to @clemonsmjn1 "I had a single breast mastectomy after they found invasive ductal carcinoma. Now they are recommending..." + (show)

And you may not have any side effects. Everyone is different 🤷🏻‍♀️

celestebradham | @celestebradham | Jul 31 6:57am

In reply to @clemonsmjn1 "I had a single breast mastectomy after they found invasive ductal carcinoma. Now they are recommending..." + (show)

I was 60, I chose a lumpectomy on left breast and reconstructive on both. I had IDC 7mm but also DCIS was 4cm. Grade 1. 15 days radiation with booster . Mine was 99% hormone positive- clear margins and lymph nodes. AI was recommended- I was started on anastrozole which did not agree with my body AT ALL- I think I hit every side effect checklist. I started exestestane, with a few side effects, but with the help of healthy yoga, pranayama, acupuncture and a few supplements I’m good. But it did take a while to figure it all out.

clemonsmjn1 | @clemonsmjn1 | Jul 30 8:43pm

I had a single breast mastectomy after they found invasive ductal carcinoma. Now they are recommending a hormone blocker type of treatment for 5 years. I’m not crazy about taking anything because of side effects. I’m 65 and otherwise in good health, except I do have 3a kidney disease. What would you recommend I do? My lump was 7mm and stage 1; all 4 lymph nodes were negative.
Thank you very much for your service.

lcshaffer13 | @lcshaffer13 | Jul 27 12:08pm

In reply to @flatland "So many here have mentioned that the AIs reduce the recurrence rate by 50%. I have..." + (show)

I have been told that taking any of the AIs reduce the recurrence/metastasis percentage rate into the 90’s.
Did your Medical Oncologist tell you it only reduced recurrence by 50%?

lcshaffer13 | @lcshaffer13 | Jul 27 11:56am

In reply to @cherziggy "I’m glad the letrozole is working for you! I am able to walk and do so..." + (show)

I took the Letrozole at night and had horrible insomnia. They had me change to morning and add a 250 mg Magnesium Glycinate at bedtime and it helped me. Good luck

sharon44r | @sharon44r | Jan 7 11:40am

In reply to @flatland "So many here have mentioned that the AIs reduce the recurrence rate by 50%. I have..." + (show)

Now the doctors are telling you to stay on it 10 years, meaning forever

tullynut | @tullynut | Jan 7 10:59am

In reply to @sharon44r "What are the wonder diet drugs, that a hormone based?" + (show)

Wegovy is the only brand name that is coming to mind for me right now. GLP – one is the class of drugs, they are usually injectables and pricey. What I was told by chemotherapy doctor was that they are almost all hormone based and for me, a breast cancer patient with ER positive PR positive breast cancer prior to the mastectomy, I’m not to take any hormone based meds like that. I talked to my primary care doctor, who used to work in a cancer center, and he said there few weight loss medication’s that are not hormone based. Phentermine was one of the older medication‘s. That is not hormone based. He said the problem is it doesn’t work well for everyone, but fortunately it worked for me. It was part of the old Fen/Phen medication that was taken off the market many years ago. It was the part of that blend that was OK, but not as effective by itself as it was when added into that older cocktail.

cherziggy | @cherziggy | Jan 7 8:44am

In reply to @sharon44r "I also had score of 11. Had invasive lobular multi foci (2) next to each other..." + (show)

Thank you for saying this about tamoxifen! I have a bottle in my drawer but like you there is a little voice in my head telling me no.

cherziggy | @cherziggy | Jan 7 8:40am

In reply to @flatland "So many here have mentioned that the AIs reduce the recurrence rate by 50%. I have..." + (show)

All I can tell you is from my experiences. I’ve tried all three of the AI drugs and all three gave me debilitating side effects. My oncologist offered tamoxifen but left the decision up to me. I am currently not taking any blockers. My quality of life is better.
I’m 70 and my tumor her+ stage 1. Lumpectomy and radiation.
Good luck to you! ❤️

flatland | @flatland | Jan 7 7:50am

So many here have mentioned that the AIs reduce the recurrence rate by 50%. I have been told that as well, but isn't that just a general statement? I don’t know exactly how to say this in mathematical terms, but your personal type of cancer, lymph node involvement, etc all come into play and ultimately lower that number.

I’m saying this because so many on this site have a better understanding than I have, and can help me figure out- or better weigh my options with these drugs.

I had two tumors in my right breast, stage one and stage 2 triple positive ductal carcinoma. So chemo, lumpectomy, radiation and now 5 years of AIs. I am currently cancer free, and I’ve had some issues with the medication. I don’t really want to take it. I took anastrzole first, had some leg pain and switched to extremestan gained weight, and now back to anastrazole. After going through all this I don’t want to essentially waste those efforts by not completing the treatment, but if the recurrence rate is a much lower number I’d rather be comfortable at 73.