Aromatase Inhibitors: Did you decide to go on them or not?

@elliej what was your Oncotype? That generally guides treatment, and can sometimes conflict withi nfo from traditional pathology. If your oncologist made that comment, that might mean your ER was high but your risk was too. I cannot comment on that comment but it would help us here to know your Oncotype Dx score.

I and several of my friends took letrozole or anastrazole without signficant side effects. I found if I walked more than 20 minutes, joint pain was better. I already had osteoporosis but still took letrozole for 5 years. I am not on Tymlos for bones and much stronger. It has been 8 years since my cancer.

I would hope you would at least try an AI, and give it a chance, because side effects may ease over time as the body adjusts. Most forum posts are negative but they may not reflect real world experiences.

My Onco type was 16. My team at Mayo told me I could skip Rad and take AI, or do Rad and skip AI. I chose 5 day intense Rad. The Oncologist MD has not been on board and told me she preferred the pills. Now, I feel torn and worried. I wanted a team consult, however, they didnt offer me the opportunity. I'm not sure we are all on the same page. Each professional is favoring their preferred specific treatment. Why do we always face a standard treatment protocol? Not an individualized plan. There are no trials or studies for radiation only.

@debbie2721, you may be interested in this related discussion about cholesterol and aromatase inhibitors:
- Letrozole and Cholesterol https://connect.mayoclinic.org/discussion/letrozole-and-cholesterol/

My experience. Diagnosed with MBC 12/21 at72 years of age. Spread to bones. Took Letrozole 2/1/22 through early June 22. Refused Zometa. Feb. 22 had 5 sessions radiation to C-3 vertebrae. Took Ribociclib for a few weeks in March April 22 which caused problems. Refused to continue Ribociclib. May 31 and September 19 had clear scans. No cancer meds between scans or after. Oncologist recommended returning to Letrozole in October which I refused. I will have a full body PET scan and probably CAT scan in May 23. The worst part of this experience and the only time I was physically ill was August through October because of the side effects of the remedy for the side effects of Ribociclib.
Good luck with your decision.

Thank you for responding! I am trying, so determined to get input from my BC sisters. When we share info, we bless each other. I certainly don’t want any additional concerns with the status quo of generic, one for all post surgical treatments. I hope you do well. Let me know.❣️

It's been 20 days since I stopped the anastrozole and one week since I started the Tamoxifen. Today I woke up feeling better than I have since my diagnosis in September 2021. I'm 49, IDC 7mm, grade 1, clear margins, 25 radiation treatments, one year of anastrozole, currently on Tamoxifen, menopausal at 45, 2 years HRT before diagnosis (for reference). My joint pain has diminished dramatically, and I have so much energy I feel like I could run a marathon (or maybe that's wishful thinking!). The vaginal dryness has also cleared up, which was my top complaint on the list of side-effect complaints. No more shredded toilet paper when I use the bathroom (sorry if that's sharing too much). My mental state has also improved, and I can't really describe it other than I just feel happy. I knew the AI had side effects, but I didn't realize how significant they were until I switched meds. Like someone else mentioned in this thread, I didn't really notice how bad I felt until I had been taking them for a year. Before stopping any medication, I would encourage everyone to talk to their doctor about side effects and maybe switching to something else. I know I am still in the early stages of taking this new medication, but I am hopeful. My 9 year old son needs his mom to take him to Disneyland and the Zoo and every other place his little heart desires, and I am determined to do everything in my power to make sure that happens.

I refuse to take AI's because I've had osteoporosis since 2007. My mom is now crippled from osteoporosis and took tamoxifen for 5 years after her breast cancer surgery. I also have had severe hot flashes when menopause started in 2014 and have started having them again since stopping HRT since my surgery last year. When the doctor mentioned putting me on an antidepressant to counteract the hot flashes caused by AI, I told her forget it. I already take 3 antidepressants and am not about to increase that. I refuse to take added medications just to counteract side effects of other medications. It's all about quality of life. Don't let anybody, including doctors, pressure you into taking something you know is not good for you and your body!

I don't know if you are still having hot flashes, but I found Relizen to be helpful (my doctor recommended it). I still get hot flashes a few times a day, but they are not bad at all (they were really, really bad after I stopped HRT and started AI). Of course that could be attributed to the season and maybe they will get bad again in the summer. The product is made by Bonafide and it's kind of expensive, but I know you can find generics with the active ingredient of "swedish flower pollen" for a fraction of the price. And I completely understand about the antidepressants. I have been fortunate to not need them in my life, and I certainly don't want to start now. When my son was a baby I am pretty sure at least half of the moms in our mommy and me class were taking SSRIs.

Colleen, thank you.

I loved being on letrozole. I already had severe osteoporosis but went on letrozole for 5 years. I am on Tymlos now for bones. Most people take Reclast during AI treatment. For me, joint pain went away with walking more than 20 minutes. Sorry for those who suffer but many of us don't. I miss feeling safe on a med!