Hello everybody,
I thought I would start this post and share my experience so far of trying to navigate a pathway through the menopause whilst trying to ensure I am on the optimal endocrine therapy. Its not been easy so far and I appreciate there are different ways to go about managing this - hence why its so useful to be able to discuss it with you all here and to also hear your thoughts + experiences is really helpful.
I was diagnosed April 2019 at age 51 and had a 30mm tumour removed with spread to 2 lymph nodes so then full node clearance which was all clear - Er 8/8 Pr 8/8 - 15 sessions of radiotherapy - no chemo (oncotype score of 8). Breast care team put me on Tamoxifen as I was still having periods. I did a lot of research and decided I wanted to also be on Prostap (same as Zoladex). Breast care team didn’t support this at all so I went to my GP and he was in favour and we started 3 monthly injections. Periods stopped instantly + welcome to full on immediate menopausal symptoms but at least my head was in the right place knowing that my estrogen levels were now on the floor. I have a history of very bad dysmenorrhea from age 15 so I needed that peace of mind.
Fast forward to earlier this year and one of the breast surgeons phones me completely out of the blue to say she had got my message that I wanted to speak to her - well I didn’t and there hadn’t been any message from me - I was quite happy doing what I was doing. So we had a bit of a chat anyway and I told her I was quite happy on Tamoxifen + Prostap. Oops that went down well - there was no mention on my records I was on Prostap she claimed my GP had not told them. In fact he had as I got in touch with him + received a copy of the letter he had written to them when I 1st started on Prostap - they just never got the memo as they say!
So she wasn’t best pleased and said that I’m just about 53 now so they wanted to know if I’m through the menopause so that I can switch from Tamoxifen to an AI. That means I should not have any further Prostap injections + stop taking Tamoxifen. They had decided I should stop taking Tamoxifen for 9 weeks in total - at week 6 there would be a blood test + then another at week 9 - these blood tests are for ovarian function (oestradiol, FSH, LH). I agreed to this and on 1st Feb as instructed I stopped taking Tamoxifen. I lasted 18 days then I started taking it again. I didn’t expect it to be that difficult but it really did mess with my head - my BCN was so lovely + so very supportive she knew I was struggling. She went back to the team + they accepted (reluctantly) my decision.
The difficulty I have with what they have asked me to do is the timing of all this - the 1st blood test was scheduled for 15th March - that’s the day my 3 monthly Prostap injection would be due. I sought advice from my GP and we both thought my estrogen levels would be very low at that point and even 3 weeks later for the blood test at week 9. This potentially leads to misleading results where I could be put on an AI but then some ovarian function may return as the Prostap wears off completely. Also I have only been taking Prostap since Jan 2020 and at that point periods were still pretty regular. So my breast care team are expecting I will have got thru the menopause + be done + dusted with it in just over 12 months? Maybe but then maybe not.
So where I’m at right now following advice from my GP, discussions with the very helpful breast care nurses here, a chat with ‘Someone like me’ from here along with several private messages with lovely ladies on here x is that I am still taking Tamoxifen and will continue to do so for 3-6 months. As my next Prostap injection should be due on the 15th March (which I will not have) then the effects of the Prostap will slowly wear off and I will just see what happens.
Its not easy making these decisions and I certainly haven’t done this on my own. Maybe you have a similar experience or a complexly different one - do feel free to contribute x