hysterectomy suggested to continue taking tamoxifen

highriskz

I have been taking tamoxifen for 4.5 years now as prevention for breast cancer because of strong family history. I have had regular uterine ultrasounds and the lining keeps getting thicker,,,this year it reached 33 mm. I had a hysteroscopy and found a begnin polyp. My gyn is recommending a hysterectomy (and oopherectomy while there) so that i can continue to take tamoxifen without worrying about endometrial cancer. My oncologist, who put me on tamoxifen says to stop taking it (he says it is recommended for only five years anyway) and then i dont need the surgery.

Anyone have any insights? how do i decide? do you know if tamoxifen is recommended for more than five years as prevention?

farmerlucy

I took Tamoxifen for four years and had similar issues. This past January my gyn diagnosed another (or a repeat) polyp and recommended a hysteroscopy. Since I've had 4 biopsies, a hysteroscopy, a d&c, numerous tvus, andan ooph in the past four years and the uterine lining was over 3 cm, I asked for a hysterectomy instead. I had an total open hyst two months ago. The recovery took about a month and I feel great. Also I stopped Tamoxifen last week. Good enough is good enough.

Fitbit

I've been on Tamox for about 2.5 years. Chemo put me into 'chemopause' 3 years ago & I have yet to get my period back. I get pelvic U/S every 6 months for family history of ovarian cancer & monitoring small endometrial cyst that has remained same size for a few years. My endometrial lining has continued to thicken with each U/S - was 5mm, then 7mm, now 12 mm & now I have to have a endo biopsy to rule out endo cancer. Is the endo thickening a common issue from the Tamoxifen? Is thickening of the endo ever benign?

Also, for those who have had endo biopsy's, how was it? I've read its just some cramping, but have read some people say it was torture. I have a high pain tolerance & am very strong, but I am afraid to have the endo biopsy. Scraping the uterine lining just sounds so painful, being awake with no block. Does it just feel like when you get a PAP? I pray its benign, I just can't imagine going through this again. Thanks for any helpful advice or info!

farmerlucy

Thickening is quite common while on Tamoxifen. I think it is generally benign. A gynonc told me Tamoxifen increases your chances of endo cancer from one per thousand to two per thousand. The screening was worse than my actual fear of there being anything sinister. It was a pain and could be expensive, plus I knew since I'd been on Tamoxifen an endo issues would take me down the same rabbit hole of screening. The endo biopsy hurts like crazy, but it is over soon. I learned to take an aleve before and that seemed to help.