Anyone come off HRT due to high cancer risk?

[WhereAreWeNow]

I've been diagnosed with a BRCA gene mutation which puts me at v high risk of breast cancer and ovarian cancer.

No one I speak to (breast surgeon or genetic counsellor) seems to have much information about HRT other than they think it's a bad idea and I should come off it.

I've been on it (Mirena and estrogen patches) for several years now and it works well for me so I'm really nervous about coming off it. Obviously that's what I'll do if it's what I have to do to reduce my risk.

Just wondering if anyone else is in the same boat. How do you cope with life post-HRT?

I think I'm perimenopausal BTW but hard to know for sure because I don’t have periods with the Mirena coil.

I am peri and will not be going on HRT unless I am really desperate, due to the slight increase in female cancers. But I will have to see how it goes..

I've just come off HRT because of bleeding. I had my ovaries out 2 years ago. So far I feel okay. A friend of mine who had breast cancer was told by her Dr to take sage for hot flushes.

I had to come off HRT, due to metastic BC. I also had a full hysterectomy.

To be honest, it's now not as bad as I had imagined. However, I have zero sex drive, fluctuating moods and do get warm quickly. I take amitriptyline for sleep. I'm 53 and post menopausal.

@IsItAllMenopause so you had an oophorectomy and you're not taking any HRT? I'm being advised to have an oophorectomy and I've read that the surgical menopause is pretty horrific and most women have HRT to cope with it. How are you finding it without HRT?

I have a friend who has this. She had a double mastectomy and is about to have a hysterectomy including ovaries. She will go on HRT after that.

Thanks @Enigma52. I hope your BC has been successfully treated.

Is it worth asking your GP to refer you to a menopause clinic? Or could you privately fund nasty appointment?

They may be best placed to offer advice and if necessary, discuss alternatives.

It does feel like outside of these clinics, there isn't much knowledge and it changes from Doctor to Doctor, which is incredibly frustrating when trying to get help.

Hopefully someone can give you some advice.

I had breast cancer at 29 - not diagnosed for several years. If I had any variation of the BRCA gene I wouldn’t go anywhere near HRT. Of course I can’t have HRT anyway. 5 years into full menopause and it’s not that bad. Certainly not worth risking breast or ovarian cancer in my personal opinion.

Apologies for stating the obvious (🙂), but this is where a menopause specialist is probably the best option for you. Might be a good idea to investigate options in your area?

There's a lot of excellent podcasts out there these days. Many of these seem to be American - sadly, they seem to be ahead of the UK, or at least in the podcast world they do. Hit Play not Pause is a good one, Flipping 50. In fact, the latest episode of Everyday Wellness by Cynthia Thurlow is a special episode covering breast health.

I'm not an expert as to whether HRT is an option for you, but I do know there seems to be a lot of ignorance still within the medical system.

Good luck!

Thanks @BellaCiao23 . The brca diagnosis is still very new so I'm just getting my head around what it means for me. The GP has continued to prescribe (quite high dose) HRT since I got the diagnosis. I naively thought the GP would tell me if it was a problem.

Thanks for the suggestion to see a menopause specialist. I'm not sure how to do that. I'll ask the GP if they can refer me.

Are you having a hysterectomy as well as the oopherectomy? If so you might be able to take estrogen only HRT which is associated with a reduction in breast cancer. If not, Duavee might also be worth considering, as it's a hormonal treatment that is being trialled for people with higher risk of breast cancer. Finally Veozah is a non-hormonal medication specifically designed to work on hot flushes if you find those troublesome. All of these a good menopause specialist should be able to discuss with you. And finally healthy lifestyle with plenty of strength training, sleep, reduced alcohol and a good balanced diet are all beneficial for cancer risk, menopause symptoms and so much more.

Also - have a read about how thoroughly debunked the original study by the WHI about the link between breast cancer and HRT has been. Again - not suggesting HRT is appropriate for you - just having a wider read or listen 🙂

I would ask to speak to a specialist if I were you. This podcast I found quite interesting on the topic of HRT and BC. Spoiler .. it's really not as simple as HRT increases risk of BC and so stopping may not be necessarily of any benefit.
I have no other experience, and not recommending what you should do but I would certainly be asking to speak to someone more experienced in this area
peterattiamd.com/caroltavris-avrumbluming/

Peter Attia is a great resource and extremely balanced.

Good luck OP.

My mum had breast cancer, detected at 54, so I was advised no possibility of HRT

My oncologist, who is internationally renowned for his expertise, told me I should never take any form of HRT and warned me that I might be offered it by GPs in the future.

Most SSRI antidepressants are associated with a higher risk of breast cancer as well - I am fairly certain that paroxetine in my mid-20s caused my early breast cancer, as I started to produce milk 18 months after stopping breastfeeding and I have read numerous medical papers linking paroxetine with breast cancer.

There are several SSRIs that stop Tamoxifen working, although not all GPs seem to be aware of this. One GP told me Tamoxifen stops menstruation when I went to her with severe PMS - four years into daily Tamoxifen - that turned out to be PMDD. It was another 7 years after stopping Tamoxifen that my periods stopped.

Venlafaxine is seen as safe and effective for hot flushes after surgical menopause. It needs to be slowly tapered off, though.

Breast Cancer Now have an Ask Our Nurses helpline on their website.

I am aware that many GPs do an excellent job, but I think this is probably a discussion to be had with your consultant rather than a GP.

https://www.sciencedirect.com/science/article/abs/pii/S0959804921000897 from 2021

There is really no solid evidence that modern oestrogen only hrt increases the risk of breast cancer. In particular non hormonal BC. And combined HRT has only been linked to a very slight increase in a very small study ( but not increased mortality ).
It’s just that the NHS advice, which doctors follow, is a blanket “no HRT” for women with an increased risk. This is based on some very tenuous research. The problem is there just aren’t enough studies, with enough subjects for them to declare it safe.
Just a case of not enough of a shit given about the quality of women’s lives.
Im not saying do take it, but definitely dig in to a bit more research.

You should join the Hormone Free Menopause board on Reddit. Many of the ladies on that board had breast cancer.

My DD was advised no contraceptive pill in the UK and has yearly breast scans in the US. None of us have been tested for BRCA genes because there was no family history of breast or ovarian cancer until my early diagnosis. I err on the side of caution and my DD takes her advice from doctors.

Thanks for that link BellaCiao. Just reading it now and trying to make sense… I’m always interested in the data.

If you’re looking at HRT increasing your risk, you also need to look at your weight and if you’re consuming alcohol.

Yes I had oophorectomy when I was 49. It was quite difficult. However the HRT seems to have brought problems too so I'd say overall I'm better off without it. I think some of it will depend on your age.

I had to stop taking HRT after being on it for 4 years. I loved being on HRT, it improved my sleep and mood. I had a breast cancer diagnosis in 2021 and my cancer was ER/HR positive so I'm at high risk of my cancer coming back.

I had 18 Herceptin injections after my chemo and radiotherapy was finished and also began taking an aromatase inhibitor tablet which reduces the bodies oestrogen production. Basically the opposite of HRT.

It's been tough. Aching joints, dry skin, terrible dry itchy ears. I'm on my second one as the first one wasn't great. This tablet is better.

It's recommended I stay on them until 2032.