I wondered if anyone here was diagnosed in their 30s and did not take an AI, but took Tamoxifen instead?
I was diagnosed with ER+ Her2- BC in 2016 when I was 33. I had surgery, chemo, radiotherapy, and then when my period returned six months later, i had zoladex for 3 years until my GP stopped offering it due to covid. I was prescribed tamoxifen during this whole time, apart from a month where I took exemestane but it made me feel weird so I went back to Tamoxifen.
I’m now in my 9th year of taking Tamoxifen and I’m now 42. I haven’t had a period for nearly 9 weeks, which is very unusual for me. They have always been pretty regular. (Husband has had a vasectomy and have taken a test to double check I’m not pregnant!) Is it Tamoxifen causing this irregularity? Is it perimenopause?
I’m also experiencing some heaviness in my lower abdomen, some back ache, some fatigue… all things that can probably be explained away.
I just don’t know if this is anything to be concerned about.
Incidentally, my mother has a blood cancer, and one of her first symptoms was fatigue and back ache. I should probably go to my GP - would I ask for a blood test? Will they think I’m making a fuss about nothing? My mum’s cancer is an MPN, which was mentioned in a study as being more of a risk for those who have previously had breast cancer. That’s separate to my Tamoxifen worries, I guess, but it’s on my mind.
There seems to be so little info on young women taking Tamoxifen long term. I know most young women are prescribed an AI.
Welcome to the forum. I was 49 when diagnosed, so in an older age range. Started briefly on Tamoxifen and moved to Exemestane with ovary suppression.
My reason for responding to your post. It’s my understanding Tamoxifen is generally preferred for premenopausal women. Post menopausal or ladies with ovary suppression tend to go on an AI. The chemical “science” is slightly different before or after menopause hence the two different types of hormone therapy. There are instances when this arrangement is not suitable and can be juggled about. It may be that you’ve reached a natural menopause and need reassessing……there are other AI to consider.
I heard you are worried, about aches and pains, and you have good reason with your mum’s history. Oestrogen depletion can cause joint pain etc… and you’ve been on it quite a while. It’s very possible the symptoms you are experiencing may be linked to that. But I am no doctor, and if you are worried you should definitely speak to a professional. You have a genuine reason to be concerned and should get it checked out.
Hi @coldfact , welcome to the forum . I’d get some advice from your GP as your symptoms are obviously worrying you .Tamoxifen can cause changes to your womb which may need investigating but also you could be entering peri menopause and that combined with Tamoxifen may be resulting in missed periods . Im older than you but my periods were very regular before I started Tamoxifen ,they stopped completely on it . Best wishes Jill
Hi @coldfact - Welcome to the forum , I would suggest a trip to the gp to further investigate what’s going on. With your history , you may need a gynae referral too for a scan as Tamoxifen can cause womb lining changes x
Thanks so much for taking the time to respond to my post. You are right, of course, I do need to go to my GP. The Easter holidays just started so i’ll have to wait until my kids go back to school. Maybe my period will have turned up by then!
Again, so little info about young women and tamoxifen. Most women I’ve spoken to who were diagnosed in their 30s had ovary suppression for 5 years and an AI. I only had ovary suppression for 3 years and only a month of an AI.
Anyway, thanks. X
I was 36 and had 5 years of tamoxifen, which was what was prescribed at the time. I ended up with very heavy periods, which were probably caused by tamoxifen. I had a thermal ablation in the end which was amazing, day surgery and no more periods. I think you probably need a chat with your gp and maybe a gynae referral. Hope you get to the bottom of it soon, best wishes.
Arty1