Thank you Sue10 for this great information. It's been 3 years on Anastrozole and I have thought about it several times if I stopped what would happen. Fortunately I have not no bad side effects. Recurrence I think about a lot some days. Also thank you to rosegardengal, Zah, Rina2 and DeeVee for sharing information too. I'm staying positive and with prayer 🙏.

Some women, like me, are told they need to be on an AI for the rest of their life . My 2nd breast cancer is a hormone positive aggressive stage 3C. My oncologist says that I am high risk of cancer returning if I ever go off the AIs and that it's pretty common for high risk women to have a recurrence within a few years of stopping AI meds once their bodies start producing estrogen again. If you are scared to stop the AIs due to recurrence risk it's worth having a talk with your oncologist about it.

I stopped Tamoxifen after 4 years due to my first recurrence of HR+ HER2- breast cancer, went from stage 1 to regional stage 4. I stopped Anastrozole after 2 weeks due to the joint pain being crippling, switched to Letrozole for 2.5 weeks - same issue. I couldn't get off the sofa without crying. I opted to not take anything. 4 years later, stage 4 regional was now in regional lymph nodes. Verzenio and Faslodex for two exhausting/debilitating years. Maintenance is now Faslodex every 28 days and have a hell-week for 7 days after the shots, gradully feel better, 4 days of normalcy then back in for shots. It's better than every day crippling pain. This may be the remainder of my life (turning 61 soon), or I may just decide for better quality for a few years and see what happens. Each stoppage of treatment was for a reason and discussed with my oncologist. As of now, he says we can reevaluate at 70.

This research does not surprise me at all. The side effects of these meds make it difficult to stay on them. I started with Arimidex bc of my age and I went off it after about 9 months bc of knee pain that was unbearable. Taxoxifen for years until vag bleeding. Now on exemestane. Im at almost 10 years and altho I'm technically almost done, part of me wants to stay on them, even with all the side effects.

@A MyBCTeam Member

Read up on AIMSS.

Aromatase Inhibitor Muscular Skeletal Syndrome.

Mentioned Users

A MyBCTea...