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.

Not exactly the same circumstances but I had a haemorrhage secondary to blood thinners and ended up have a TAH, ovaries everything removed after I had 3 units of blood transfused. I couldn't take HRT due to being on high dose of blood thinners. I did try a drug for a week (have brain fog so can't remember the name of it) but it made me dizzy so I stopped taking it. That was in 2016 when I was 46. I survived it but ended up being diagnosed with primary hyperparathyroidism (an endocrine disease) a few months later and after failed surgery to cure that disease in 2017 I've been slowly getting sicker and sicker,. But it's nothing to do with having no HRT. None of the symptoms I have now are due to the menopause.

I'm in medical menopause because high risk of breast cancer due to family history. I'm actually in menopause as on tamoxifen to reduce chances of BC. Have they suggested this to you?

Anyways, to answer your question I can't take HRT either. I really struggled initially but I adopted suggested lifestyle changes to help with menopause: started working out more regularly and joined a gym, change of diet to include lots of protein and fibre, cut down slightly on alcohol as rare time I go out the hangovers kill me and flare up hot flushes. I have to say, these changes have made a huge impact to me and I feel great.

Yep it's across the whole site.

I picked up a few names for you and when PMs are back on will send. They are all central London with expertise in BRACa.

I don't hold out much hope for you with a quick appt at an NHS clinic. The main one is the Chelsea and Westminster Meno Clinic that used to be headed by Prof Nick Panay. He's not there now (but does work elsewhere.) I'm not sure of the waiting time for that clinic but it needs a GP referral.

@Beyondbeliefsometimes . Say hrt raises risk by 6% (can't remember figure off hand but it is actually less risk than being obese).

The risk (on the old types of progestogen) is 4 extra cases per 1000 women over 5 years. So an added risk of 0.4% in 5 years.

https://www.womens-health-concern.org/wp-content/uploads/2019/10/WHC-UnderstandingRisksofBreastCancer-MARCH2017.pdf

Thanks for the link I was at soft play and didn't have any to hand. I knew it was lower than 6% but went high so people wouldn't have a reason to come at me. The benefits of HRT are also now being understood as well.

Thanks @JinglingSpringbells . I've been listening to the podcasts you linked to. Some interesting discussions about the evidence re. HRT in women with high risk of breast cancer.
@Hollyhobbi that sounds really tough 💐

It is @WhereAreWeNow and the surgeon who did the operation in 2017 told me the day after that he didn’t fancy doing that again as it was a difficult surgery! And he’s supposed to be only one of two surgeons in Ireland that will do the type of exploratory surgery I had. I’ve had loads of contradictory scans over the years but my blood results show I still have the disease and it’s getting worse. I’m been in A n E a couple of times recently with dangerous blood levels. One of them was 0.29 where the normal is btw 0.8 and 1.5. If I hadn’t gone to hospital I could have had a heart attack. I luckily have private health insurance so I’m hoping to have the surgery by a specialist surgeon in England who has even cured a lady who had the same surgery unsuccessfully 3 previous times!!

I was diagnosed with hormone positive breast cancer aged 61, I had been on hrt patches for 13 years and obviously had to stop the hrt immediately. I had been cutting the dosage for several years so it wasn’t too bad re symptoms but I was then put on an aromatase inhibitor for 5 years which has been like the menopause all over again.
I have never been told that it was the hrt that caused it although I suspect it probably was due to the amount of time I took it and the fact my tumour was highly oestrogen and progesterone positive.
I found trying to come off hrt very hard , tried several times and took it very slowly. I would ask if you can reduce the dosage over a few months to try and minimise the effects rather than stop suddenly which can cause a surge of symptoms.
I do think diet and exercise can make a difference and I believe some antidepressants can also relieve hot flushes so that may be worth considering too.

My mam never used HRT (or birth control either, nor drank alcohol or was ever overweight and no family history of BC so none of the usual risk factors but had hormone positive BC within the space of about 2 years, it mutated slightly between the first occurance and the later one in the second breast. I don't know if the rates of BC cancer of women in their 40s + ever decreased noticeably for all those years that women were told to come of or not start taking HRT after that flawed study which I assume they would if there were a strong link.

I think the difficult part is no one can say with any accuracy what your risks are, my mum took hrt for 25 years, never had breast cancer, died age 87 yet my Dsil was like your mum, no risk factors, no pill or hrt and died age 43 of triple negative breast cancer.
I will never know for sure why I got it, my gp said the hrt would not cause it but would make it happen sooner if that makes sense,but I would have got it anyway.
I do know that I had been pretty stressed for many years just with work and normal life stuff we all have to cope with but I definitely didn’t handle stress well and internalised a lot of emotion which is bad for your health.
It’s very hard, you can only weigh up the pros and cons for your situation. I’m not against hrt It helped me immensely and I don’t know how I would have managed without it but I personally think for me it was a factor but not necessarily the cause.

I have the BRCA gene and have also had breast cancer. I am not advised to take HRT, but have started on vaginal oestrogen for atrophy and as a pp has stated, on venlafaxine for hot flushes.

Yes if the cancer is there the HRT can cause it to grow more quickly if it is a hormone receptive type of cancer

Lots info on risk factors on Cancer research U.K., Prevent Breast Cancer and Michelle Harvie websites

I've cut down my patch from 100 to 75 and I feel fine so I feel a bit more confident about at least reducing the dose.
Got an appointment with GP in March. I'll see if they can refer me to a specialist menopause clinic.
Some of the resources people have linked to on here have reassured me that HRT is not a definite no no for women with BRCA. Especially if I end up having preventative surgery which will make me low risk.

If you're still interested in private experts I think PMs are working now .

My mum tested positive for the BRCA gene six years ago. She was on HRT for eight years following a medical menopause and at 76 has never had breast cancer, but… I think you are right to see a specialist because of the potential buts.

My mum only told me recently she was BRCA+. My sister has apparently tested negative for it. I've been on HRT for four years. Now debating whether to come off it.

Looks as if PMs are still not working. Not sure if it's ok to put names here but will give it a whirl if you're looking.

My grandmother and my mum both had breast cancer. Both heavy smokers/drinkers both were in their sixties. I spoke to GP at time about the risk and GP said no need to test unlikely to be BRCA gene more likely coincidence. A few years later my sister goes through early menopause (late thirties) her gp starts her on HRT. I'm 46 and recently went to GP to discuss hrt mostly due to aching muscles and joints. GP said not a good idea due to cancer history my sister has been on it 15 years. 🤷‍♀️

Thanks @JinglingSpringbells

Kefah Mokbel
At the Princess Grace Hospital
Christina Choy - King Edward V11.

There are also many others on the websites of both of those hospitals but look for ones specialising in genetic history.

Saw a lovely GP today who has referred me to the menopause clinic. She thought I would have to come off HRT but was happy to leave that decision to the specialist clinic and has just reduced my estrogen patch from 100 to 75.
No idea how long the wait will be for the menopause clinic.

Be aware that some doctors at NHS meno clinics are no more qualified than GPs (but they've done a bit of extra training.)

You need a specialist who's experienced in the BRACA gene. Maybe they will have one, but I would stress that you should also pursue the private route as a back up.

@WhereAreWeNow I've messaged you.

Yes, I stopped abruptly after being diagnosed with breast cancer. I had only been taking HRT for nine months. Now on aromatose inhibitors that stop your body making oestrogen at all.