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 have a slightly increased risk, am post meno by 3 years and have not taken HRT and wouldn’t for that reason. I know the risk isn’t as high as other factors but I feel great. I use vaginal oestrogen only which is much lower dose.I don’t understand why you’d be on hrt if you’re not sure you’re even peri. You’re adding more hormones to the ones you’re already creating naturally.

I’ve just been on Google Scholar, searched for BRCA hormone replacement therapy with a date search since 2021. If you put a word such as “BRCA” into double quotes it only comes back with results containing that word. I didn’t use the quote marks. There are hundreds of studies, including systematic reviews. There does seem to be more research on BRCA1 than BRCA2 but it’s certainly not under-researched. I just posted one article so as not to overwhelm the OP.,

I am aware the OP is just getting her head around this shock and probably doesn’t want to do an academic deep dive!

Wishing you well with whatever you decide, OP 💐

https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/breast-cancer/risk-factors#heading-Zero

Within that link above.

I don’t drink or smoke and I'm a healthy weight so I'm OK on that front at least.

I'm definitely peri. What I meant was I'm not sure if I'm post menopausal because I don’t have periods.

The person you need to talk to ideally is Prof Michael Baum who is the UK /world expert on this. As far as a I know he's retired (mainly) although he is on the BMS website talking about genetic risks. And he is still listed on UCL's website as a professor. His daughter Katie runs the Latte Lounge support group for women/menopause so it might be worth joining that forum and asking for support.

There may be something on this that helps you find out more.

https://lizearlewellbeing.com/podcasts-videos/podcast-s4e6/

https://www.lattelounge.co.uk/about-us/katies-story/

Thanks @JinglingSpringbells

In Ireland we have specialist menopause clinics in the Maternity/Gynae hospitals that women with complex cases can be referred to. I think you need something similar - to speak to a menopause specialist who can engage with your oncologist. You need an individualised approach to risk and reward of taking/stopping HRT as well as alternatives that you can consider. I think it's simplistic to say just stop HRT as the symptoms that made you start it are a real health issue, not the risk of an issue. Equally they may not have been severe and you may be able to manage those symptoms in another way and eliminate both risks. So find someone who can give you the info for a personalised risk and reward decision.

My mam had hormone receptive BC twice at 52 and 54 ish, never having taken HRT, the pill or even drinking alcohol or being overweight. I turned down HRT when first offered to me in my 30s because of early menopause because of what was still perceived to be the linked risk. I eventually started it in my mid 40s after it felt my life had pretty much come to stop due to post menopause, I was just existing and miserably so, not living.
Things need to get to a stage that every woman is given the full risks and facts of the different HRT and let weigh up that information against how badly they are suffering in menopause. If you don't have any or v few symptoms that's a very different scenario to someone suffering every day

It’s tough if you’re suffering. Did your mum survive the bc? My DM had it twice too at 67 and 74 but it the second time was metastatic She had been on combined hrt for about 10+ years in the 80s/90s. Had been slim and never smoked but did occasionally drink.

I was tested for a BRCA gene mutation. Thankfully I don't have one. However I was retried that o would have to come off HRT if I did (my period symptoms were horrendous) and did a lot of research. My conclusion was that there was no additional risk to using non-oral HRT when you have a BRCA mutation. Obviously, if you were actually diagnosed with an oestrogen receptor positive cancer that's a different ballgame. I can't remember all the research I did now unfortunately, but worth you looking into this to be sure you are getting the right advice.

@NotVeryFunny as a general point, there is no lower risk or difference in risk using tablets or transdermal estrogen. The lower risk only applies to blood clots.

@WhereAreWeNow You may have to look into private consultants for this and possibly London. I appreciate posters have mentioned specialist meno clinics but they are few and far between. Some aren't staffed by consultants, only GPs, and they may not have the info you need.

I'd definitely suggest you contact the Latte Lounge as the link I left says they have a medical team and Katie may be able to suggest consultants for you.

I am aware of other names if you want me to PM any at all.

Please do PM me names of consultants you think might be able to help @JinglingSpringbells

We have the same in Scotland and I'm pretty sure the rest of the UK does too (albeit waiting lists may be long).

I wasn't allowed HRT due to BC risk. My sister died from BC.
I had stage 1 BC detected at my first mammogram.
I'm recovering fine from surgery, but obviously not allowed any HRT.
Honestly it's fine. I'm grateful to be alive. It's not a problem.

She did survive the cancer but almost didn't survive the aftereffects. Whether it was chemo brain or being plunged into immediate menopause we ll never know but she developed bi-polar type behaviours and took an overdose, walked out into a lake and other behaviours swinging from outrageous highs to desperate lows. Lithium calmed those behaviours but she was a shell of herself until she came off it. Now back to herself, mentally and emotionally anyway, physically not in great shape but she's here and happy

https://livefeisty.com/podcasts/193-hormone-therapy-and-breast-cancer-risk-with-mindy-goldman-md-episode-193/ might be useful background for you - obviously no substitute for individual expert advice but might help with questions to ask when you get to a specialist.

Oh gosh what terrible time for you all. Good to hear she overcame the cancer. Have never heard of those effects. Poor thing.

Pretty common for mental health to be affected in menopause, from anxiety to depression to suicidal thoughts, afaik the age-range for highest risk of suicide for women is around that of dropping hormones. Depression and changes beyond that of a reaction to the diagnoses/procedures are believed by many to be linked to use of chemo too given that it kills healthy cells too but I don't know if much actual research has gone into it in the years since my mam was ill

@WhereAreWeNow I did try to PM you but got the message that PMs were temp disabled- not sure if that's you or everyone's!

I did have a look for you and suggest you google BRACa gene / breast cancer/ doctors/London. I found a list of 3 possibles but there are more.

Thanks @JinglingSpringbells . It says PMs are temporarily disabled when I checked too. I'm not sure why.

They're disabled for everyone as they have had some cases of disturbing images sent to people.

I'm surprised by this advise tbh. Can you go back to your genetic counsellor and ask for a second opinion or evidence. As your main risk of breast cancer is from BRCA gene. If you haven't had a previous breast cancer there is no reason you shouldnt take it, imo. Say hrt raises risk by 6% (can't remember figure off hand but it is actually less risk than being obese). And rough figure say risk from BRCA gene is 80%, your risk is 86%. High risk regardless of HRT or not. But someone else might be population risk of breast cancer at 12% and add 6% to that pushes them into moderate risk category. I second asking for referral to local menopause clinic, there are lots of options. You could also ask your genetic counsellor if they can do personalised risk assessment for you with and without taking HRT. What part of the country are you in?

@Beyondbeliefsometimes that's a good idea to get the genetic counsellor to do the risk assessment with and without HRT. I'll ask her. I'll also ask about referral to a menopause clinic. I suspect that will be a quicker route than trying to get my GP to refer me.
I've cut down my estrogen patch to 75 (from 100) today to see how I feel. I figure it's probably worth trying to get to the lowest dose possible regardless of whether the advise is to stay on it or come off.
I'm in SE and work in London so I'm lucky to be within reach of lots of excellent hospitals.