Hi, I was diagnosed last year and had a mastectomy and on Tamoxifen since then. Im 44 and I understand tamoxifen is the standard treatment for premenopausal women.
I was also diagnosed with severe endometriosis around the same time. I’m wondering if the Tamoxifen is aggravating the endo as I’ve recently had to have a polyp removed.
Is anyone on here who has had breast cancer along with endometriosis, and what hormone therapy are you on? Can you let me know any side effects as well with your hormone therapy? I’m scared to move to an AI due to side effects I keep reading about.
Dear @zara_xo, I am a 67 year old woman who was prescribed Letrozole. I took it for 11 months but came off it because it caused me to develop another fibroid ( I already had an 8cm Fibroid prior to cancer diagnosis) and, alarmingly I also developed an ovarian cyst described as an endometrioma indicating the presence of endometriosis. I am now under the gynaecology dept for quarterly surveillance. When I discussed my situation with the gynaecologist, in particular the possibility of swapping to a different type of hormone therapy, his advice was that if I did so then Tamoxifen should be right at the bottom of any list due to its tendancy to cause polyps.
That’s really helpful, thank you. Did you switch to anything else? Do you remember what his recommendations were? I feel like both my oncology and gynae teams keep referring me back to each other and nobody will make a decision. I also have a large ovarian cyst on my left ovary (9cm) and a smaller one (2-3cm) on my right. I’ve asked for frequent gynae checks but was told it wasn’t possible, and would only be done if I had any abnormal symptoms!
Hi @zara_xo , I did not switch to another hormone therapy but stopped altogether. I had to weigh up actual harm v possible harm in my own case in which my age and menopausal status was also a factor. Breast and gynae cancers may be related if ER positive. Follow your instincts in pushing for regular gynae surveillence for your own peace of mind. Involve PALS to help you if necessary. Let us know how you get on. I wish you well x
@zara_xo hey! I know this is a long time after you posted, but I have just been diagnosed ER+ & PR+ and have endometriosis/adenomyosis (I’m 37 so pre-menopausal). I’ve read that studies have shown that Tamoxifen can make endo worse, I was wondering if you continued with Tamoxifen or moved to something different and how you are getting on?
Hi @nik1 sorry for your diagnosis, hope you’re coping ok!
I’m still on tamoxifen - it’s suited me in every other way (no other side effects) so I stayed on it. My periods seem to be stopping (possibly due to my being extremely anaemic but also might be menopausal, can’t tell at this point!)
I’ve been told a full pelvic clearance (hysterectomy and oopherectomy) would be safer for me as I also have large cysts on both my ovaries - these were found around the same time as my breast cancer but they wanted to prioritise the cancer treatment.
I’ve actually been cramping for a couple of weeks and spotting so I need to call my GP in tomorrow for a possible polyp again! So if you haven’t already started Tamoxifen I would definitely look into other options with your Oncologist.
Thanks @Tulip29 hppe you’re getting on well? I’ve been told regular scans aren’t part of their standard protocol so they can’t offer it. Where are you based?
Thanks so much for sharing! So sorry to hear you are suffering with cramps etc. and in need of pelvic clearance! Really hope that it helps you feel better though!
Yeh I think I’m going to talk to my consultant and avoid going on Tamoxifen in favour of a different endocrine suppression treatment if that’s an option!
