I am new to this site and just wanted to know how many people manage to stay on Tamoxifen for 5 years as I have stopped taking it after nearly 3 years as i cannot stand the side effects any more, i am still having flushes and wondered if anyone knows how long this could last whether i could be peri-menopausal or will i get my periods back again. Nobody can give me a diffinitive answer, seeing my oncologist on Tuesday as they are not happy with me and will probably try and persuade me to go back on the dreaded tamoxifen again, I would be grateful for any information anyone can give me. I am 44 years old and have not had a period for 3 years.
Hi jenivive
I am sorry to read you’re having a tough time at the moment. I’m sure some of the other users will be along soon to offer you their support and experiences.
In the meantime it might help you to talk things through with a member of staff on the BCC helpline. Here you can share your concerns with somone who will offer you a listening ear as well as emotional support and practical information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator
Well, where to start? As far as I can tell there is no definitive answer. I managed the full five years of tamoxifen - started Oct 2007 when I was 45, finished last Oct aged 50. I came close to giving up at times because of the hot flushes, but just kept on trying different remedies to try to make them bearable.
My periods finished in August 2007 while I was on chemo. I had a one-off bleed in August 2009 which was investigated (I was convinced it was cancer of the womb!) but it was nothing - they put it down to tamoxifen which can cause the occasional random bleed. Then I finished tamoxifen last October. I had queried going onto an AI two or three years into the tamoxifen, as I considered myself menopausal, but my onc refused, saying that my ‘menopause’ could just be temporary, and could reverse when I finished tamoxifen. I thought that sounded stupid given my age etc, but she wasn’t to be budged. In the weeks following my last tamoxifen tablet I could feel my whole body temperature going down. No more throwing the covers off at night, I could wear jumpers I hadn’t worn in years - hurray I thought. Then in December my temperature went back through the roof and the hot flushes started up again. I went to see my GP wanting to know how long this was going to go on, her answer was that she couldn’t say - it could be days/weeks/months/years. Not exactly what I wanted to hear. Then in January I cooled down again - and had a period! I’m 50! What the hell was going on? In February another one - with hot flushes in between. Now that’s really not fair. Since then no more periods, and hot flushes going mental again.
So what am I trying to say to you? I think the answer is that no-one knows, and anything can happen. I really thought I would be done with all this when the tamoxifen finished. I really though the onc was daft when she said the menopause may only be temporary. Sitting here at my desk just now I can feel another hot flush creeping up to my face. Another trip to the ladies to strip off and cool down…
Thanks for replying to my message. I am sorry to hear that you are still having those dreaded flushes, my poor mother is still having them at the age of 65 and has never had breast cancer, I think it is because she is so slim and has no oestrogen in her body. I have tried sage tincture which seemed to help slightly. I saw my oncologist yesterday about the tamoxifen and she wants me to go back on it in a couple of months after my surgery to make the vaginal opening bigger caused by menopausal symptoms, she tells me that tamoxifen is just as effective as chemotherapy in preventing a re-occurrence. She says as my flushes have not improved by not taking the tamoxifen then i am probably peri-menopausal and that my periods probably won’t come back, i also had bloods done to check my hormone levels. The oncologist tells me that there are new drugs available instead of tamoxifen but they cause vaginal dryness and won’t improve my situation. So i guess i am in a no win situation and must persevere for a bit longer.