Very low natural oestrogen levels - fewer side effects from AIs?

I have been dithering for a few weeks about whether or not to take AIs, particularly as I have a low risk of recurrence, and I am very worried about side effects.

Prior to the bc diagnosis, I had a Mirena coil fitted for years due to heavy periods, so I didn’t know if I was post-menopausal or not. I’ve recently had two blood tests which have determined that I am now post-menopausal, and give my oestradiol level as 54 pmol and <18 pmol, both of which are really low.

I had also been on HRT prior to diagnosis for a couple of years which I stopped on diagnosis and did have some hot flushes etc but these have tailed off recently.

My questions are, given that my natural oestrogen levels are so low, first of all is there still a benefit to AIs and secondly, if I do take them, am I likely to not have a lot of extra side effects as I will be going from <18pmol to 3pmol instead of levels in the high hundreds/early thousands like some women?

Hi @arewethereyet I can’t answer from an objective, science-based perspective but from personal experience. I went through a ‘normal’ menopause in age and length of time and did not experience hot flushes, joint/muscle pain, insomnia or any of the other traditional effects, I just had three years of being in a furious temper with everything and everybody (mainly disguised as dyspepsia :wink:) and managed to get through the hormone changes without being arrested for GBH. I was told that this was because of low oestrogen levels although I was never formally tested to the best of my knowledge. Fast forward 13 years and I was put on Letrozole following a Stage 1 Grade 1 IDC surrounded by low grade DCIS. The IDC was Er+ 8/8 PR+ 6/8 so, despite being low risk, the Allred score alarmed me enough to try endocrine therapy. I haven’t had any of the aforementioned menopausal symptoms on it, what I have had is brain fog and low mood so, in discussion BCN and an 8 week holiday from it, I now take it every other day and so far am absolutely fine. I have no idea if you can draw parallels with your own situation from that but my advice would be to give it a try to see. If it isn’t for you and you are prepared to take the risk of recurrence (which we all face even those of us on the drug, albeit a reduced risk) then you can stop. I’m on it for five years and am halfway through and take each packet as it comes, thinking I can stop if I want to when this one is finished but then generally think “just one more”.

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Thanks @Tigress for replying and that’s helpful to know about your side effects if you probably have naturally low oestrogen levels too.

That’s really interesting about only taking it every other day and something I will bear in mind. And also your technique for getting through it sounds great - I need to remember it’s not a commitment to taking it for the full five years if I just try it and see.

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Hi @arewethereyet. I had a natural menopause aged 46 and had no real problems except for night sweats, and some joint stiffness/pain, which I’ve always been prone to.

I’m now 64 and was diagnosed with BC last year. I started on Letrazole 10 weeks ago. I queried whether I needed it as surely my oestrogen levels would be really low after 18 years and the oncologist said that post menopausal women still produce oestrogen, mainly from fat tissue - plenty of that on me :see_no_evil: - so the Letrazole would target, and reduce, that oestrogen.

My only symptom since I started it has been stiffness and pain, particularly in my neck and shoulders. This started when I i had Docetaxel but now it’s, I think due to the Letrazole. It is perfectly controllable with Naproxen and Paracetamol, and I do not need tablets every day. I am tired, and my mood has been a bit low but I only finished radiotherapy 3 weeks ago so I’m still recovering from all the big, active treatments I’ve had over the last 11 months!

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Thanks so much for replying @pat. I agree, there’s a lot to contend with all at once with the active treatments, and I’m still feeling the effects from the radiotherapy that I finished in Feb. I’m sure if I’d started the AIs I would be blaming it on them!

That’s really good to know that although you’ve had some side effects, they’re all manageable. It’s very encouraging to hear from people who are coping okay on the tablets even though it’s not all plain sailing.

Great question and really useful thread of replies - will help me in my questions when I next see Medical oncologist.

My very best to all.

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You’re absolutely right. Whatever is happening at the time we blame for how we’re feeling when it may be all or nothing to do with it!

25 years ago my mood was very low and i was exhausted - I had a 5 year old, a 2 year old and a 1 year old - mad i know, don’t ask :woman_facepalming:t2::joy:, my father had died suddenly 2 months before and i was perimenopausal - though I didn’t know that at the time I was post menopausal within 5 years. Obviously I thought it was these 3 things. Turns out I had an underactive thyroid. I was given thyroxine and was right as rain :joy:

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I was 63 when diagnosed with BC, HER2- and hormone +. I was 50 when I had my last period. You still produce estrogen after menopause. Taking Letrozole after radiation meant I had some menopausal type symptoms but not all at once. It started with sleep problems, then crazy irritability, then some hair thinning and now joint pain. All bearable to keep cancer from returning. I have 1 year and 3 months more to go, am looking forward to ditching the Letrozole but will continue to finish the course of treatment because, for me, I needed to do everything I could to avoid a repeat. Good luck.

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