I was dx in May 2013, aged 40. Stage 3 IDC, ER/PR +ve (8/8) HER-2 -ve. Neoadjuvant chemo (not a great response), mx, rads and Tamoxifen since December 2013. My periods stopped halfway through chemo (August 2013). It came back at the weekend - should I be worried? It feels like a period and not irregular bleeding, because my hot flushes stopped about 6 weeks ago.
The reason I feel uneasy is that at my end of treatment oncology appointment, I asked my onc if I should let him know if my periods returned. He said that I should, because it would be an indicator that Tamoxifen wasn’t working and because I am high risk he couldn’t take that risk but would put me on Zoladex. He used to tell me frequently how high risk I am and it really got me down, so when my treatment was finished I changed oncs. When I asked my new onc if, hypothetically, my periods returned she would put me on Zoladex she said that no, because I’m premenopausal Tamoxifen is the most effective drug for me, regardless of menstruation.
So I’ve had 2 differing medical opinions and I’m worried. I’m high risk, I didn’t have a good response to chemo and now it seems that, in some onc’s views anyway, Tamoxifen might not be working too well either. But I can’t see my current onc doing anything except waiting and seeing. Has anyone else had this conersation with their onc? Has anyone else Stage 3 had periods on Tamoxifen but still done well on it? I haven’t been able to find much research on periods returning linked to survival. By chance, my oncology appointment is next week but I would like to have some views before I go!
Please do give our helpline team a ring and have a chat with them about your concerns, they’re here to support you. Calls are free 0808 800 6000 lines open at 9am today to 5pm (weekdays) and 10-2 Saturdays
Sorry to hear you have been given such confusing information. I dont think my experience is similiar enough tot be much help but here it is.
I was previously on zoladex and tamoxifen. I was told my periods might stop and might come back. My perods came back after finishing with zoladex and still being on tamoxifen. At no point did my health team mention any concerns over this.
Thank you Jenny. May I ask why you were put on Tamoxifen and Zoladex together - was it to keep you in menopause for a minimum amount of time?
Jo, I did call the helpline yesterday and I have to say on this occasion I didn’t find it very helpful! When I have called the helpline before I have found it to be informative, but this time the lady I spoke to seemed bemused by my concerns, suggested that Tamoxifen was just an “insurance” because surgery was the main treatment (I would suggest this isn’t entirely true for Stage 3) and in the end suggested that I posted a question on the forum about it - which I have done! As I said, I have always found the helpline to be good before so I was very disappointed this time.
I’m sorry you are feeling so anxious - but totally understandable. I came on today to look for some experiences if Zoladex. My treatment and dx is practically identical to yours including rubbish response to chemo. At my last onc appointment she said Zoladex was an option to me, but at the time, more treatment was the last thing I wanted. However, she did say that if my periods returned, she would recommend having my ovaries out - so I got the impression periods were something she wanted me to avoid. On another board we have been discussing how confusing it is that so many oncologists seem to have different opinions. I hope I’ve helped a little bit. Good luck next week x x