Connect
← Return to Aromatase Inhibitors: Did you decide to go on them or not?
Discussion
Aromatase Inhibitors: Did you decide to go on them or not?
Breast Cancer | Last Active: May 12, 2023 | Replies (1190)Comment receiving replies
lindalm--I am curious if there was a reason you were either not prescribed tamoxifen or did you choose not to take it? I was diagnosed with stage/grade 1 invasive ductal carcinoma and have had surgery and radiation and have now been recommended to start tamoxifen but I am very concerned with the potential side effects. My recurrence rate is around 10% without tamoxifen and 5% with it. My concern is whether or not my quality of life outweighs the potential for recurrence. Thoughts?
Replies to "lindalm--I am curious if there was a reason you were either not prescribed tamoxifen or did..."
Mine recurrence rate was 12 , I was put on anastrozole which I took for 3 months . It destroyed my bones , joints and much more . Finally I was not able to lift my arms enough to dress or feed myself . I decided there was no quality to my life once I started on the meds . Tamoxifen is mild compared to anastrozole . They wanted me to switch I fired my oncologist instead . I am much better now 10 months off it but still having problems . Exercise helps so I chose yoga
Connect
I am post-menopausal and the standard of care is to prescribe one of the 3 aromatase inhibitors. Tamoxifen is generally given to pre-menopausal women. I have done exhaustive research on the 3 AI's and, with misgivings, decided to go ahead with letrozole (Femara). I've been on it for a month or so and, even though I have no visible side effects, I would discontinue it if I was sure it is not or is only minimally effective.
I found no definitive answer to our question >> Do women with stage/grade 1 IDC get enough (or any?) benefit from taking estrogen suppressing drugs to balance out the side effects? One not-for-profit breast cancer source said that, once a drug dosage is established, there is no incentive for the manufacturer to do further dosage studies. But, just as the Oncotype DX test confirmed that chemo was not necessary for women with lower grade cancer, shouldn't there be studies that determine if AI's & tamoxifen are really effective for those (us) women? I'm continuing my search until when i get a second opinion from an oncologist later this month. Hopefully she will know if such studies are available.
This is truly a hard decision for each of us. Do we actually risk cancer reoccurrence by not taking the drugs and if so, by how much? Or do we take the drugs "just in case" and face potential serious drug side effects? I just met a woman through the Pink Ribbon group at Mayo who took AI's for 10 years and is now cancer free for 15+ years. She has a friend who quit after 5 years and had reoccurrence 6 months after quitting. That reoccurrence may or may not have been connected to the estrogen suppression. And there are women posting on the internet who never took the drugs and are cancer free. So at this point, I am not ready quit taking it but will do so if/when I find out it's not worthwhile. I wish you all the best of luck in making your decision.