Anyone postmenopausal on tamoxifen?

PurpleCat

I did tamoxifen for about a year after treatment. It caused major gyno issues, so I had ovaries removed and switched to letrozole. That made me so miserable that hearing that the uterus also needed to go was actually good news, as it meant I could switch back to tamoxifen. I've been told that the AIs are a little more effective, but that tamoxifen is fine, certainly better than nothing. So I'm looking at another 2.5 years of tamoxifen. In some ways I think it's the best of both worlds, with my body still able to produce that tiny bit of estrogen like it's supposed to but the estrogen being blocked from causing harm. But I sometimes wonder if I'm doing the right thing. Sometimes I think "I have no ovaries. How much estrogen can my body possibly be still producing? Do I need to take anything at all?" And other times I think "I really should switch back to an AI and learn to tolerate the side effects, because they're proven to be more effective."

Just wondered if anyone could relate.

Veeder14

Hi Purplecat

Yes, I am. I’ve got osteoporosis so my MO suggested Tamoxifen. I took it for 4 months while getting periodic vaginal ultrasounds. My uterine lining went from 2mm to 17 mm in 4 months. Reluctantly, had a hysterectomy and ovaries and all removed. Took a 4 month break to recover and restarted Tamoxifen. I will only go on Al if Tamoxifen fails, hope it doesn’t. I’ve got 2 1/2 years left. The body still produces estrogen in from otherplaces even without ovaries.Just wondering what happens after getting done with 5 yrs, does the estrogen still cause a risk?

Mom2bill

Purplecat, I am post menopausal and was prescribed Tamoxifen because of osteoporosis. I had a hysterectomy several years ago due to other issues, so uterine cancer is not a concern for me. I am taking medication for my bones, and after I complete 3 years of the medication and Tamoxifen, my MO will evaluate whether moving me to an AI for the last 2 years is an option. If not, I'll remain on Tamoxifen. As Veeder pointed out, our bodies produce estrogen in areas other than our ovaries …fat stores, for example, so we will always have at least a little bit of estrogen hanging around. My Understanding is that in some cases, the recommendation is to keep people on their AI or Tamoxifen for 10 years rather than 5. My MO stated that we will evaluate whether or not remaining on either medication beyond 5 years would be of benefit to me or not when the time comes

Hopeful82014

Purplecat -

I did five years on letrozole and was advised to do another 5 years of endocrine therapy (which I'd been expecting). I really couldn't hack another 1/2 decade on AIs and my MO agreed that a 3-month break followed by tamoxifen would be a good approach. I've not been on tamoxifen around 18 months.

I'm supposed to have a pelvic ultrasound every 6 months but due to Covid haven't had one for 2 years. (I will this winter after our healthcare employee vaccine mandate has taken effect and I've had my vaccine boost.)

I've got a DEXA coming up and will be interested to see what affect, if any, the switch to tamoxifen has had.

The 2 side effects I've definitely seen from tamox. are an increase in my blood pressure and weight gain - in spite of all efforts to fight it. Both are pretty frustrating.

Veeder - re: your question of whether estrogen still poses a risk after going off of treatment - apparently the effect of endocrine therapy persists for approximately 5 years after end of treatment. I don't have a citation for that but have run across that figure numerous times.

Veeder14

thanks hopeful8201

lnanne

I'm so glad you asked this! My MO recommends Tamoxifen because my DEXA scan showed osteoporosis. My Oncotype was 15 and PREDICT showed a 2-4% benefit (depending on the age I used since I'm almost 65) with hormone therapy. It doesn't say which hormone therapy so if Tamoxifen is less effective than AI and with the chance of potential serious side effects (like clots), am I better off not taking anything? I guess what worries me is all the comments here that say they're so glad to be off Tamoxifen and they'll never take it again although I'm not sure why.

PurpleCat

Thanks, all. Even though my team said it was fine to keep on with tamoxifen, I feel like I'm doing something against best practices. It helps to know I'm not the only one.