1. < Breast Cancer

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?

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

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)
@flatland

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.

Jump to this post

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

REPLY
lcshaffer13 | @lcshaffer13 | 4 days ago
In reply to @cherziggy "I’m glad the letrozole is working for you! I am able to walk and do so..." + (show)
@cherziggy

I’m glad the letrozole is working for you! I am able to walk and do so every morning at twilight. I look forward to it even though it’s difficult sometimes.
Can I ask if you take the meds at night or in the morning? I heard someone else say that when she changed to taking it before bed was a game changer for her.
Have a good day!

Jump to this post

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

REPLY
lcshaffer13 | @lcshaffer13 | 4 days ago
In reply to @flatland "So many here have mentioned that the AIs reduce the recurrence rate by 50%. I have..." + (show)
@flatland

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.

Jump to this post

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%?

REPLY
clemonsmjn1 | @clemonsmjn1 | 19 hours ago

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.

REPLY
3 replies
celestebradham | @celestebradham | 9 hours ago
In reply to @clemonsmjn1 "I had a single breast mastectomy after they found invasive ductal carcinoma. Now they are recommending..." + (show)
@clemonsmjn1

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.

Jump to this post

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.

REPLY
1 reply
celestebradham | @celestebradham | 9 hours ago
In reply to @clemonsmjn1 "I had a single breast mastectomy after they found invasive ductal carcinoma. Now they are recommending..." + (show)
@clemonsmjn1

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.

Jump to this post

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

REPLY
clemonsmjn1 | @clemonsmjn1 | 7 hours ago
In reply to @celestebradham "I was 60, I chose a lumpectomy on left breast and reconstructive on both. I had..." + (show)
@celestebradham

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.

Jump to this post

Thank you for your comment and details. It’s helpful to hear of what others decide and the experience. I appreciate your feedback.
Blessings to you.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | 4 hours ago
In reply to @clemonsmjn1 "I had a single breast mastectomy after they found invasive ductal carcinoma. Now they are recommending..." + (show)
@clemonsmjn1

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.

Jump to this post

I moved your question to this related existing discussion where you can connect with others who faced a similar decision:
- Aromatase Inhibitors: How to choose and manage side effects https://connect.mayoclinic.org/discussion/ai-inhibitors/

@clemonsmjn1, you're asking good questions and ultimately the decision is yours to make with your oncologist and kidney specialist. The more information you have specific to your risk factors and related health conditions, the more tailored the answer will be to you and your situation. Of course, your personal preferences are also come into the informed decision making.

Like @celestebradham says, some people have no side effects or some side effects that can be managed. And there are several different hormone blockers to choose from. While one may cause side effects that negatively affect quality of life, another type may not. It's good to keep in mind that forums like this one can make it appear that side effects affect everyone. That is because the women who experience side effects often seek tips and support to help manage the side effects.

It's not an easy decision. @clemonsmjn1 have you talked to oncologist or oncology pharmacist to find out about any drug impact on your kidneys?

REPLY
View MoreView Less
Please sign in or register to post a reply.