Possible endometrial cancer from Tamoxifen?

I didn't have your particulat situation, but I did have endometrial cancer in 2008 when I was 58 (and nowhere near menopause according to hormonal tests 😳). I had a laparoscopic total hysterectomy, and never had any after affects, maybe a few sweaty nights during recovery but nothing like most women go through with natural menopause. But then again, I got breast cancer in 2018 and was strongly ER/PR positive, so I must crank out hormones no matter what, which may have been the reason for my lack of heat waves. I just wanted to let you know that having more than one cancer is annoying but not the end of the world. I've also had multiple low-level skin cancers and a not-so-low-level kidney cancer. It's a lousy hobby, but again, not the end of the world. Or me. 😁

I had thickening of the lining in the first year of tam. It took some time to get in for a d and c after 3:failed attempts at biopsy. It turned out I had a benign 2 cm polyp in the uterus, likely caused by tam. I’ve ha no problems since. I didn’t have any abnormal bleeding or any other symptoms. I can’t remember exactly how I ended up at the obgyn from the oncologist.

Lilac, I had endometrial thickening, found on pre Tamoxifen pelvic ultrasound. Turned out to be polyps that were benign. I pushed for a total hysterectomy (at age 77 and decades post menopause I saw no need to keep "place holders" that could turn on me). Had robot assisted laparoscopic surgery with a path report of pre malignant cells in the uterine wall. Glad to have it done. Recovery was easy for me; cannot find the incision scars now 2.5 years post - op. Best wishes as you move forward.

Hi Lilac17,

I was also diagnosed in 2018, and had my first biopsy for a suspicious finding a couple of weeks ago.

After my initial experience - first ever lump led to first ever mammogram led to malignant biopsy - I didn't *emotionally* believe the statistics about how many biopsies come back benign. But lo, so it was for me, and so I hope it will be for you also!!

Hi Lilac17,

I had a progesterone IUD for years, took it out to freeze eggs, had another one. It was great for me. I would say definitely worth trying before a hysterectomy. It can always come out if you're unhappy with it. I'm kind of surprised that your doc is recommending it though. I basically had to fight my doc to keep it in (my second one was inserted the same day the gyn found my lump) after I was diagnosed. There isn't evidence it increases risk but there are reasons to think it might, and docs are super cautious.

If you've given birth, the insertion shouldn't be bad at all. If not, it can be quite painful so depending on your pain tolerance, that might impact your willingness to give it a try.

In terms of alternatives to tamoxifen, my doctor moved me to toremifene. It was much better for me side effects wise but I had different side effects than you so I don't know. Beyond that thought, it's all AIs that require you to be menopausal. So if your doc isn't willing to try toremifene or if the side effects aren't safer for you, maybe that would push you towards a hysterectomy anyway?

Lilac, usually with ovarian suppression (OS) they will also put you on an aromatase inhibitor (AI). When a woman's ovaries are no longer working she still produces estrogen by converting testosterone into estrogen. The AI stops that process.

Here's an entire thread of other ladies doing OS + AI:

https://community.breastcancer.org/forum/78/topics/870169?page=1

I think a second opinion sounds like a great plan, if not a must.

There is evidence that pre-menopausal women benefit from chemical menopause - in fact, a lot of the benefit previously attributed to chemo turned out to actually be chemo's common side effect of stopping menstruation. But I don't think it's common for doctors to recommend menopause alone. Tons of post-menopausal women get cancer. It tends to be less aggressive than in pre-menopausal women, but standard of treatment for menopausal women still includes AIs if the cancer is hormonal.

But you are absolutely right about one step at a time. Good luck with the immediate procedure and getting the all-clear!!

Ladyc2020 brought me to this thread and thank god for it. I am in this boat, the boat has a hole, it's filling with water and sharks are circling. That is how I feel right now. 

Looking back, I shake my head that when I was diagnosed in 2017, still having periods, (at 53) with a cancer that scored 100% for ER and PR, that no one suggested removal of or suppression of ovaries. Tamoxifen stopped my periods and I have since been treated as if I am post menopausal, which is actually unknown. When I went off tamox last year for about a week or so, shortly after going back on, I had some bleeding. Like my body just can't wait to have a period. As if I am NOT menopausal! Then this most recent bursting forth of the dam in which my uterus expelled over 18 hours what it normally would have over 6 days (I had long, miserable periods). I'm a wreck. I am so scared, so mortified, so pissed off that I am exhausted and out of breath and shaking constantly. Also, when stressed, I quit eating. Some people stress eat, I stress starve. I can't even drink my beloved morning coffee. Nope. Forget it. Gross. This may add to my breathless, weak feelings. Not that I'm running out of stored fat, hah, plenty of that to last through a famine. 

I know when I do get to see the gyno (no appt yet) she will want to do a biopsy but at this point my question is, why? Why waste my time and yours? We know at 20mm my uterus is WAAAY over the acceptable limit. We know that fluid in the lining is BAD NEWS. We know that bleeding and clots the size of the tv remote are bad news. There is nothing a biopsy is going to reveal or change. This uterus is almost certainly cancerous, and it needs to come out. So ixnay on the biopsy. Pass go and head straight to hysterectomy. 

Lady2020, I am right there with you. I hope that fro both of us getting it out will be the end of our trial. Hope no chemo or radiation required. I think I need to hang out with AliceB and have her rub some of her calm life matter-of-factness onto me. Because I feel a crushing despair, dread and grief that has literally taken me off my feet. 

Lilac, huge sigh of relief that you are doing well. I am happy to hear it.