Has anyone taken Tamoxifen? Looking for experiences

I don’t know but I feel for you. I just started Anastrozole today. The unknown is making me nervous too.

I do not, was told I might need to in the future. However know others who have been long term on it & are doing fine.

Maya, almost 18 yrs ago (2007) I was diagnosed with Stage 1 ER/PR+HER2- Invasive Ductal Carcinoma. I had a lumpectomy, 4 chemo treatments, and 37 radiation treatments, followed by a 5 yr plan of being on Tamoxifen. Made it through the first year on Tamoxifen without any problems at all, but within a week of starting on year two my ankles, feet, ok, so everything below my knees started swelling. I looked like I had Miss Piggy feet, and they hurt so bad. I felt like I was walking on a pallet made of needles, pins, hot coals, and by the end of the day I knew what walking on fire must have felt like. I couldn’t even put shoes on because my feet were so swollen. All I did was sit around and cry. My son was in 6th grade and my little girl was in 1st grade, and I couldn’t even play with them. My oncologist changed the Tamoxifen to Femara, but within a week of taking that they started swelling again. There was absolutely no way I was going to live like that in so much pain, so we decided I’d stop taking it too. My chances of the cancer NOT coming back went from 97% down to 93%, which was still a very good outcome. And then in June of 2023, 17 yrs after my first diagnosis, I broke a rib reaching down to pick up my tiny 6 lb Pomeranian, and the next month I reached backwards to get something and heard my shoulder pop. I had broken my Coracoid Process. My oncologist grew very concerned so scheduled a PET scan for the next day. He called later that afternoon to tell me I had Stage 4 MBC to the bones. I also see an oncologist at MD Anderson, and both of my doctors wanted me on Kisqali and Letrozole (Femara) this time. I was soooo scared the Letrozole would make me swell up again, but 2 yrs on it and I’m still doing great! I have no idea why I had side effects the first time on Tamoxifen (and the Femara), but doing fine on it now. I really hope you have no side effects at all!! I do know a lot of people have no side effects the entire time they’re taking it, so praying you won’t either!🙏

I've been blessed and no major side effects so far. Stay positive and active

Leigh, how did that happen? Stage 1 to stage 4 MBC? Please explain.

It's completely natural to feel nervous about starting a new medication, especially one that's part of cancer treatment. Many community members have shared their Tamoxifen experiences here, and connecting with others who understand this journey can be really valuable. This community is a great place to hear from people who have been in similar situations and can offer real insights about what to expect.