Hi…diagnosed jan 09 and been on tamoxifen just over 8 yrs, this was second lot of worry re bleeding but first one was when I was still pre-meno. Now I was 18 mths since last period and recently had episode of bleeding, very like a period, was referred on the two wk rule to gynae clinic and had a hysteroscopy and biopsy. I got the results today after having to go in for another one under general anaesthetic, they said the sample was small but normal and they should get a better result this way…my worry is that I am discharged by surgeon and oncologist as per normal so who decides about the tamoxifen?? I was happy enough to hear that 10yrs treatment was ok and recommended as I felt that little bit or security and protection. The gynae doc wont make a decision…
…I dont know much about Ai treatments as compared to tamoxifem only that you need to be post meno, is there any likelyhood of “them” letting me transfer to an AI instead for a while, does anybody have any advice…would anybody def not recommend AI, I always seemed ok on tam but I know lots of different side effects with AI…help please!!! and thankyou for reading the boring bits…xx
Hi Mary ,is it worth waiting until you have a clearer picture about what’s going on the bleeding before making a decision ? I would be tempted to ring BC unit and speak to one of the nurses for advice -maybe GP could refer you again for a review appointment to discuss Ais v Tamoxifen ? I think you will need all the info from gynae investigations to help inform your decision. .When is your op?
Hopefully they won’t keep you waiting too long for the results .
Hi Mary
I was post menopausal when I was prescribed tamoxifen. On the third day I had a bleed, and like you was hauled off for a hysteroscopy and biopsies. I had an abnormal endometrial thickness and a polyp removed, and the biopsies came back clear. The gyne consultant said he thought it was a bad idea for me to take tamoxifen, that if I was starting out with this problem, the tamoxifen was likely to make it much worse.
My oncologist said he really wanted me to take tamoxifen, though if necessary I could switch to Anastrazole. But his view is that tamoxifen is much better tolerated in terms of quality of life issues.
The upshot is, I 've continued with tamoxifen, but have an annual transvaginal ultrasound to check everything’s still okay. I know I have a higher than normal risk of endometrial cancer but this way it should hopefully get picked up early. Im a year in, and have had one episode of bleeding, but the ultrasound showed there was nothing concerning.
So for the time being I’m plugging on with tamoxifen, but with the option of switching to an AI if there’s a problem.
I had DCIS, and at the time only tamoxifen was licensed to treat it. They changed things to allow AIs just after I had the biopsy, originally I was told it was tamoxifen or nothing.
Sorry if that was a bit rambling, it was all very worrying at the time, and I was left in limbo for a while, with the gynecologist saying one thing and my oncologist saying the opposite. But I’m satisfied that the annual scan is checking on things.
I hope you get some answers soon, but I would have thought an AI would be a reasonable option if you do need to stop the tamoxifen.