ER positive breast ca preventative hysterectomy

I’m 49 just had a double mastectomy for IDC and I too am trying to find more information on this topic.

My Oncologist told me Tamoxifen only slightly increase the chance for Uterine cancer. The first sign is always bleeding and she said it’s always in early stage when you first noticed bleeding. So why have such big surgery if it’s something we can observe at the early stage? Ovarian cancer might be detected by MRI. I’m not sure about this.

I’ll find out more when I see my oncologist next week but thank you for the information it really helps to hear from others.

That is correct I was told only 2% will get uterine cancer from Taxoxifen. I wish there was a simple answer, but the more research you do the more questions you have. Full hysterectomy is really only for my own piece of mind.

Why Tamoxifen instead of an AI? I'm 48 and get a monthly injection of Zoladex (it's like Lupron) and take exemestane. My onc strongly prefers AIs to Tamoxifen. She has also suggested removing my ovaries, which would eliminate the need for the Zoladex.

AI cause’s osteoporosis. I’m 55 and already osteoporosis. It’s why I’m on Tamoxifen.

Ohhh, yes, I see. I do recall getting a Dexascan for a baseline bone density before starting the AI. I forgot all about that complication. Sorry, and thanks for the insight!

Does anyone know why the AIs are more likely to cause osteoporosis than Tamoxifen? Does weight bearing exercise counter the bone loss with AIs? I have lobular and read that Tamoxifen is likely to cause the lobular cancer to become endocrine resistant so I'm looking to also possibly do hysterectomy + AIs rather than Lupron + tamoxifen (newly diagnosed and still premenstrual)

Collect as much information as possible before you make a decision. As you are in perimenopause the lupron may not be needed for too long. I am on tamoxifen too and have concerns about uterine cancer but I’m at a lower risk.
Have you had BRCA testing, affects uterine cancer risk?
I’ve been reading about how Salpingectomy, removal of the fallopian tubes, lowers ovarian cancer risk, link below. It seems to be a laparoscopic surgery and much simpler than a hysterectomy. If I were younger it’s something I’d consider. I’m 69 and was diagnosed with BC when I was 17 years post menopause. Might be a talking point with your oncologist.
Also, compare long term physical effects of tamoxifen and AI, if you were considering that an AI would lower your uterine cancer risk. I think we’re still in the early years of determining what “no estrogen” does to a body after, say, 30 years. I see lots more research lately about estrogen’s effects on the entire body, including the brain.
https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2019/04/opportunistic-salpingectomy-as-a-strategy-for-epithelial-ovarian-cancer-prevention#:~:text=By%20performing%20salpingectomy%20when%20patients,of%20ovarian%20cancer%20is%20reduced.

Oh, you are so right about the long-term effects of any of our treatments. I pray, take a deep breath, and do what my trusted onc recommends (I still do tons of my own looking into things, mostly because it’s interesting, but I’m not a doctor and my oncologist is wonderful and experienced and happy to talk to me about my questions and concerns). At the end of the day, I’d rather suffer the consequences of action rather than inaction. Hugs to all 🤗