HRT and cancer risk

[Idontknowhatnametochoose]

I'm in peri and can't continue like this. I'm constantly stressed and angry, feeling hot, exhausted, can't sleep, have worsening of other conditions. I feel literally like I can't cope.

Dr (I think it was a Dr anyway- phone appt) will put me on hrt. However, my mum had breast cancer (triple negative) and my paternal nan died of an unknown type of it. The Dr said there's a high risk if I have a breast cancer gene. She didn't seem to know what triple negative cancer is. Well I have no idea about the gene as my mum died so I can't ask her. I would really rather not deal with bc even though currently i feel so depressed and don't much care.

Has anyone with a family history of bc taken hrt? Was it OK? Do you have the bc gene? Was hrt worth it for you?

Im in a really similar position so watching with interest

You can request a referral for gene testing, I can remember the exact parameters but I think you fill out a form and they’ll tell you if you’re eligible. I believe the gene means you’re more likely to get cancer at a younger age, idk if that’s reassuring if you’ve reached perimenopause age safely.
I remember reading a comment on MN from a woman who avoided hrt due to the bc risk and ended up getting bc anyway, which made me think about it in a different way.

Oh and only a small percentage (15?) of breast cancers are caused by the BRCA mutation.

You need to ask for the genetic BRACa gene test.
I don't know why your GP isn't doing this although the criteria is usually 2 first degree relatives (mum and sister) not a generation back (ie your gran.)

I'm no expert on this but my understanding is that triple negative means it's not hormone dependent- that means it's not triggered / accelerated by estrogen, estrogen+ progesterone, or progesterone.

Do some searching online about it and maybe call the helplines of one the breast cancer charities- they can help guide you.

If you google triple neg breast cancer, lots of info comes up.

https://www.macmillan.org.uk/cancer-information-and-support/worried-about-cancer/causes-and-risk-factors/brca-gene?gclsrc=aw.ds&gadsource=1&gadcampaignid=19936005343&gbraid=0AAAAAD1mVXHJf40ZRJvaq84ca8nYW

I had breast cancer so am not allowed to take HRT by oncologist as was a hormone positive one. Triple negative means not hormone positive and HER2 negative. Even though I got breast cancer at 48 my DD would not qualify for testing but in her case I think its worth getting privately. It may be worth discussing with an oncologist but suspect would need to go private.

Triple negative is one of the worst types of breast cancer to get and treatment is very aggressive. It seems to say online HRT is not recommended after it but don't know about before whether it would increase your chances but sounds like your doctor is concerned.

We can take certain anti-depressants (I don't but quite a few do but needs to be one which doesn't interfere with hormone therapy). I find swimming helps a lot and exercising 3 to 5 hours a week is supposed to reduce risk of breast cancer coming back 30% to 50%. Vitamins help me and tend to stop bone pain, take Wellwoman 50 ones. My sleep is awful, anti-histamines can help with that when I really want to sleep.

I’m in a similar position. My mum has breast cancer in her 40s and now in her 70s has two more kinds of breast cancer. All three kinds are hormone receptive. Her mum also had breast cancer (not sure what type).

My GP has said I might be able to have HRT but I am reluctant despite awful symptoms. I’m currently trying to manage by treating the worst of the symptoms. I currently have triptans for the hormonal migraines and tranexamic acid to reduce the flooding. I take magnesium to help with sleep. I have found anything for the hot flushes or awful low mood though.

I have a family history of breast cancer but I choose to still take HRT.

My Mum had breast cancer twice (first time in her late 30s) and it finally came back as secondary cancer in her liver and stomach and she died age 51. Her sister also died from breast cancer in her late 50s. This was 30-40 years ago so there was very little information available then re types and/or genes and I’ve never been tested.

I was 25 when my Mum died and I’m now 55. I’ve been under the supervision of the Barts breast cancer family history clinic for the past 2 decades. I even took Tamoxifen (bloody awful stuff!) as part of a trial for 5 years to potentially reduce my breast cancer risk.

Then peri symptoms hit me hard in my late 40s. This was at the same time as I was diagnosed with long Covid so I was being hit with brain fog and fatigue (amongst other symptoms) by both of them. I took extended sick leave but I need to work and earn an income as there’s only me to rely on. I have a high pressure job in Financial Services so there’s no coasting and nowhere to hide at work. I needed to perform but I felt like a vegetable and a pretty rotten limp vegetable at that. I pushed for HRT and was referred to a NHS menopause clinic (due to the complexity of my circumstances). They advised me to try HRT but my breast cancer clinic freaked out and advised me against it. After much debate between both consultants and myself, they agreed it was my decision. They estimated it would increase my breast cancer risk by 2-3% if I took the least risky form of HRT (Oestrogel and Utrogestan). I decided to go ahead with HRT as I had zero quality of life by this point. It wasn’t an easy decision but it was the right one for me. That was 3 years ago and my mammogram in March was clear. I’m 4 years older than my Mum was when she died so to me every year I live past 51 is an unexpected bonus. I’m willing to accept the risk in order to live the life I want. HRT has helped me massively so for me it’s been worth it.

I’m not advising anyone to do this. I will talk about my experience.
I’m 46 and have had breast cancer twice.
My menopause was forced and hit me so hard I couldn’t function in so many ways.
I decided to start HRT (transdermal) as I couldn’t cope with the lack of sleep, loss of concentration and pain in my joints (there were many symptoms but these were the worst).
My BCs were hormone receptive.
I have made the choice to improve my quality of life now, so I can work and not risk living in poverty, it’s expensive but I do extra shifts to cover it.
If I didn’t take HRT I would be useless to my son, I’ve had to think about now and not live in fear of what may or may not happen. I’ve been put in this difficult position but it’s my life and my cancer risk, the Drs refuse to empathise with this and refuse to let me take it through the NHS, even the guidelines state BC survivors can have it in severe cases, mine was severe!
There is more research available now and it’s a lot easier to weigh up the risks and benefits. Do what’s right for you.

My mum and her sisters all had breast cancer and then secondary cancers at very different ages. Difficult to say whether it was / is genetic or also attributable to living envt where they grew up, as it was very industrial. I’ve tested negative for the BRCA gene and did some research on HRT risks as the GP was ‘we can’t recommend either way’

I decided to go ahead and start HRT patches. I also made some lifestyle changes post reading up on potential BC factors, I now exercise at least 5 times a week and have massively reduced my alcohol intake. I also pay for yearly private mammograms

Having HRT has made such a difference

Thanks for sharing your very personal stories everyone. I appreciate it. I'm here reading I'm just unwell and have limited energy. I've been prescribed the gel but very reluctant atm. I'm certain my mum had triple negative bc but my sister thinks it was hormone related. She's not always very accurate in what she says though. I want to find a letter somewhere which states what type my mum had...if I can find them.

Apparently hrt is not too risky if you only take it for a year...anyone know if that's correct?

I'm going to leave you a link to a video by Prof Michael Baum who was/is the world expert on this- breast cancer surgeon, genetic risk, researcher etc.
He is no longer seeing patients as far as I know (is in his 80s) but there will be other specialists who can provide support. His daughter Katie runs a Facebook meno group called the Latte Lounge.

His video is on the left towards the bottom of the page.

I really suggest you see a specialist and don't rely on your GP.
The Latte Lounge may have names ,although I can mention Prof Nick Panay as one- his private practice has a long waiting list but if you're desperate it's one option.

https://thebms.org.uk/publications/bms-tv/

It might be worth getting genetic testing to see if you carry the BRCA1 or 2 genes as that vastly alters cancer risk. I am not sure if it puts you at higher risk (c61-77% lifetime cancer risk) of any breast cancer or the same type as your Mum had. If there's no inherited component then your risks are probably not much different from anyone else's. I don't know if they will do the test on the NHS, I think they should, but there are strict criteria. Privately it says around £1,000.

This has some information though their lifetime figure of 10% of women getting breast cancer is different to Macmillan's 15%.

https://thebms.org.uk/wp-content/uploads/2022/12/12-BMS-TfC-Fast-Facts-HRT-and-Breast-Cancer-Risk-NOV2022-A.pdf

https://www.macmillan.org.uk/cancer-information-and-support/worried-about-cancer/causes-and-risk-factors/brca2-and-cancer-risks-for-women

I presume your Mum was relatively young when she got it (under 50 is classed as young).

Gels and patches don’t have the same risk of Cancer. Speak to a menopause specialist

I can't afford a specialist sadly.

My mum was in her 70s when she got it. Very rare. Then she got a rare uterine cancer. Didn't die of either though!

Gels and patches have a lower risk for blood clots compared to pills @pottylolly .

There is no difference in breast cancer risk with them compared to pills.

Have you watched the Michael Baum video?
It will be far more helpful than anything your GP can tell you.

In a nutshell, his advice is go for quality of life EVEN IF you tested positive for the BRACa gene.

What do you mean by 'rare'? The fact your mum was in her 70s or the type of breast cancer?

It's not rare to get BC as you get older- age is the biggest risk factor. Most cases are in women over 70.

You don't need money to see a specialist, I saw one on the NHS. I had stage 3 hormone driven breast cancer and had a full hysterectomy that pushed me into an absolutely vicious menopause.

I'm lucky in that I had a fantastic GP who referred me to the specialist, who is attached to the breast clinic in my local hospital. They deal in complex menopause/HRT cases and most of her patients have breast and/or gynaecology cancers( or are very high risk).

She fully explained all the pros and cons surrounding HRT , but ultimately left it up to me to decide. I decided to try the gel and am just awaiting the prescription to come through. I live in the North East of England and have her contact details if anyone wants to PM me.

There are many risk factors for cancer. BMI, alcohol etc. if you are very low risk in other areas, maybe you will be ok with a low dose of hrt? It does apparently protect against other illness too eg osteoporosis.

one option is to try for six months and see if it even works for you?

I would see GP and see if they will refer for genetic testing. The advice is not to do HRT if BRCA1 or 2 until had treatments for that and in that video the surgeon is talking about after an operation for those genes. His advice is also the opposite of my oncologists re breast cancer. But often inherited is younger aged cancers so hopefully the late onset means it's not inherited, in which case your risk is more like double the average. Very unusual to have triple negative at that age. This is criteria for testing
https://www.cancerresearchuk.org/about-cancer/breast-cancer/risks-causes/family-history-and-inherited-genes

I would try and stay normal BMI, exercise, no alcohol but loads of us on the cancer thread like that and still got it with no inherited link as far as we know.

@MagellanicPenguin I think the problem is that OP doesn't know the full story about her mum and also her other relatives. I genuinely don't know if she could have genetic testing on the NHS because from what I've read it says 'two first degree relatives at a young(er) age' - which usually means your mother and your sister. And OP's mum was 70.

@Ashipcalleddignity Sorry to hear of your own diagnosis. I think availability of specialists on the NHS is patchy across the UK. In the SE, the Chelsea & Westminster Hospital deals with complex cases (used to be headed by Prof Nick Panay, which is why I mentioned him.) They do see women from anywhere in England, but not sure of the waiting times.

The situation is complex as women using only estrogen (who've had a hysterectomy) have a lower risk of BC compared to the rest of the population. It seems that it's a combination of estrogen+progesterone that is the risk factor, not estrogen on its own.

I think if paternal nan is a great grandparent that's a third degree relative so probably wouldn't qualify as it says needs to be one first and one second at any age. Though if it's a grandparent it would qualify and also as they ask they obviously don't have records. I don't know if there's any flexibility. It's annoying for my DD as I was under 50 and had 3 cancers but as all in same breast doesn't qualify. Though it will be later we would look and would go private.

Your GP will refer you to a specialist breast clinic or genetics clinic for assessment if you have any of the following:

• one first degree female relative diagnosed with breast cancer aged younger than 40 (a first degree relative is your parent, brother or sister, or your child)
• one first degree male relative diagnosed with breast cancer at any age
• one first degree relative with cancer in both breasts where the first cancer was diagnosed aged younger than 50
• two first degree relatives, or one first degree and one second degree relative, diagnosed with breast cancer at any age (second degree relatives are aunts, uncles, nephews, nieces, grandparents, and grandchildren)
• one first degree or second degree relative diagnosed with breast cancer at any age and one first degree or second degree relative diagnosed with ovarian cancer at any age (one of these should be a first degree relative)
• three first degree or second degree relatives diagnosed with breast cancer at any age

It does get complicated with the cancer stuff and also you have to get them to be very clear what say a "5% benefit over 10 years" means. I asked and it turned out "benefit" was being alive rather than dead in 10 years time.

I took hrt for a year and developed breast cancer. I just wouldn’t risk it.

I'm really sorry to hear that. I hope you're ok?

The newest types of HRT have been shown to have no added risk for at least 5 years .

The latest medical opinion (I can link if anyone wants to read this- it's on Menopause Matters website) is that HRT does not cause breast cancer but accelerates cancer that is already there.

Obviously the risk is always concerning for all women.

I have triple negative breast cancer isn't hormone reactive as other breast cancers are. Get yourself on hrt. :)