HRT with family history of Breast Cancer

[LunaStarlight]

Hi all,

Super stressed and first time posting.
Crying my eyes out.

I’ve been on Evertol Sequi now for 5 months, I’m 48 and my sister whose 40 has just been diagnosed with triple negative BC, I had an aunt die at 49 years ago with BC, I’ve rang the docs and their advice is to stop HRT immediately, I rang the breast clinic and again was advised to stop.I have an appointment in February to discuss, im on the waiting list to see the menopause clinic, I’m waiting to hear if my sister has the BRAC1-2 gene.
lve been looking online for alternatives, the doc could only offer antidepressants??
Being on HRT has changed my life, no more mood swings, hot flashes etc, I’m so happy, but now I don’t know what to do, I can’t go back to being a monster, my HRT treatment has made me feel like a woman again, can anyone please advise me, I’m going crazy not knowing what to do, I’ve read there’s a 1 in 7 chance of getting BC anyway but last night I read my chances have increased to 75%… what’s anyones thoughts on this, has anyone got some real advice or experience.
My doctor will not give me a repeat prescription, if I understand the risks then isn’t it my choice?

Many thanks in advance, I’m not sleeping and stressing my head off :-(

Sorry you feel so awful.

I don't want to underestimate the risk but what you have been told is not what I understand from my own gynae consultant. he says that if there are two first degree relatives (Mum and sister) that is a 'warning' to consider not using HRT.

However, in your case your sister is triple negative. That means her cancer is not hormonal.

It's not driven or caused by estrogen or progesterone.

There are also women who have had b cancer who have gone back onto HRT as their quality of life was so bad otherwise.

Obviously if she has the BRAC gene, that's something for you to be tested for too.

There are two videos on this link from the British Menopause Society that may help ( scroll down- the ones on BC.)

Hope this helps.

thebms.org.uk/publications/videos/bms-tv/

Wow thank you jingling, I didn’t even know about hormone related BC, or non hormone, II’m taking a screen shot to show my doctor, obviously, I will get tested, but everything is a waiting game, makes complete sense. Hugs 🤗

Sorry too, just to add, I am 49, just gone on HRT (same type as you, wow, amazing stuff), family history of b/c, Mum, aunts, cousin. I have been told I can continue until 51, when I then must have genetic testing to see which b/c gene if any I have. I was led to understand that one of the genes isn't a problem for continuing with the HRT. Can they not let you continue until at least the genetic testing is back? Especially if what Jinglebells says about the triple negative b/c not being hormone driven.

Triple negative is not hormone driven, it tends to be down to other factors (genes being one of them).

Having said that, women who have been diagnosed with triple negative, whether they are BRCA+ or not, are usually told to stop using hormonal contraception and advised not to have HRT.

That's a difficult decision for you OP, perhaps wait for the testing to come back and then speak to your doctor again? I guess you have to weigh up the risks against your quality of life.

Blossom, thank you, I can’t go back to being a monster and I was a right devil! , now I have all this new knowledge I can at least let my doctor know what I’ve found out, it seems once BC is mentioned, they shy away and maybe are scared for the implications should they arise, I’m not naive, I’m healthy, quit smoking 3 years ago, dropped alcohol to very little, I think I can decide what’s right for me, and if it’s only for a couple of years till I get tested then I’ll take it.. hubby will be pleased.
Also thanks to Thefartings, great name 😁

I think if she's triple neg then it's not oestrogen or progesterone fuelled so I'm confused why gp would say stop hrt immediately?
I suggest you look up NICE guidelines as a GP is not always totally right.
X

Thanks getting older, I will check out NICE now, x

It is more complex than this. If your sister’s cancer it’s triple negative then it has been caused because of something else (usually a gene) but most BC genes can also cause hormone driven cancers. You need to sit down with a breast cancer consultant really to understand what the level of risk would be to you & get testing as appropriate. Then you may need to talk to a menopause consultant about dosages and alternatives. The GP is probably not the most appropriate person to handle this until the consultant advice is on your medical file.

I have appointments booked, but they are months away, I’ve only been on the combined HRT for 5 months, so I do think I can afford to stay on them until I get the expert opinions, I’ve just requested a prescription, let’s see if it gets honoured, and I agree with you Ozanji, my doctor probably isn’t well equipped with the expert knowledge I need right now, I’ve taken all the above on board, taken screen shots, if I don’t get my prescription, I will have to go down the dark web or go begging elsewhere, I suffered so bad with my symptoms, I became dangerously low, I cannot afford to go back to that, why can’t the professionals understand this, menopause is so complex, I wish they’d screen better early on for all women and men like the do in Europe, I was lucky enough to have a mammogram 2 years ago, its offered at 40… here, its 50, it’s shockingly behind the times. Fingers crossed I can get this resolved, if I’d of known I’d of ordered a years supply…. Grrr

@LunaStarlight If you can be referred the best place for this is the Chelsea and Westminster Hospital in London. Their menopause clinic is for women like you with complex meno issues. They see women from all over the UK. You really need a team of breast experts and meno gynaes to talk it through together.

www.chelwest.nhs.uk/services/womens-health-services/gynaecology-services/menopause-and-pms-clinics/menopause

see the left hand side of the page for Referrals and a form. Your GP ought to be able to refer you. Note that appts are by video at the moment so distance is not an issue.

Alternatively you may be able to access them privately and many of the consultants on the team work privately.

OP I would strongly advise getting advice from an oncologist. All breast cancer starts off in cells with hormone receptors, as all healthy breast cells have them. It is not understood why some go on to lose those receptors and become triple negative whilst others make use of them to grow. One possibility is that it is linked to whether certain proteins and /or hormones best favour growth in an individual and that is certainly what my oncologist thinks may explain why I developed a fast growing aggressive hormone positive tumour at 43. Your vulnerability to hormone related Cancers is related to your lifetime exposure to estrogen, so HRT may be topping some women over the top whilst the statistics on individual risk due to HRT do not take that lifetime exposure to other sources into account. I never got to taking HRT but I was on a high dose estrogen pill for several years in my twenties and infertility investigation found high levels of estrogen preventing pregnancies. I now realise I had all the symptoms of Estrogen dominance.

Nethertheless the menopause society suggested it might be a risk worth taking for me though I manage my menopause symptoms (bought on hard and fast at 43 by treatment) with diet and exercise! My oncologist was appalled!

I get that GPS are ignorant about HRT, breast Cancer and hormones in general and have deprived many women of quality of life. And that the impact of menopause on some women is devastating. However I can’t help thinking the danger is the pendulum swinging the other way and putting women with increased risk, either genetic or due to lifetime hormone exposure, in the way of a diagnosis and treatment I would not wish on my worst enemy. I would therefore err on the side of caution and take advice from the oncologists who do understand. I know menopause can be shit but bc is almost always much shitter (and the rep of the menopause society actually said as one of her arguments that BC is now mostly survivable - at what cost? - as if that was an argument for taking the risk!)

Also the guidelines about only suspecting genetic factors if you have two immediate family members diagnosed is out of the window as they are finding that even for known genetic factors that is not true but even more so where there is reason to suspect genetic factors, direct and indirect (in terms of increasing vulnerability to hormones for instance) as yet to be identified

I do sympathise with your shock and disappointment but I would really be careful to get the right up to date advice from oncologists who seem to understand the risk much better than the menopause society etc.

Good luck to your sister, it is doable but never pretend it isn’t shit. The pressure on you to be all positive, pink and a good girlie patient does not help.

Emilyontmoor, My Jaw has hit the floor, an outstanding explanation, I will have to read many times before your message sinks in, I guess I’m feeling vulnerable and scared, confused and stressed, you have smokers told to quit due to lung cancer copd etc, alcoholics told to stop due to liver damage, I guess HRT is in the same category, it’s a lot to take in, and right now I’m only thinking, one day at a time, I do know long exposure is relevant and the risks can be high, ( JinglingHellsBells) I will take a look at the link you posted to, I must get the right advice from the best people,
Does it matter if it’s on the male or female side of the family? Does it make a difference, it seems my biological father has it on his side, but not my mum, but me and my sister are completely opposite, body frame, weight etc… I wish there was more intel out there, every silly question I can think of I’ve googled, but am only hit with nhs, cancer.org and herbal remedies… there isn’t enough for us ladies or men,, it was pure chance on radio 2 I’d heard of Louise newton and the balance website, but alas, it doesn’t cover enough of the HRT and BC Family histories, slowly slowly.. I’m to zz and wish to thank everyone for there great advise and support, I’ll check in tomorrow.
Ps, I’m now on breast checking 24/7, I’m quite small in that department, my sister is bigger, it can make you go into overdrive over thinking… I miss my 30’s 😞 x

I had low grade DCIS four years ago and had two lumpectomies (did not require chemo or radiotherapy) and have just been put on HRT with no issues. I have no family history of BC. Should this not have happened?

I wish you well.

@Aurea

I had low grade DCIS four years ago and had two lumpectomies (did not require chemo or radiotherapy) and have just been put on HRT with no issues. I have no family history of BC. Should this not have happened?

I wish you well.

I am so grateful for this thread and the wise advice arriving.

@Aurea I don't have any answers but who prescribed the HRT for you? GP/Specialists? Yay to your good health!

@Emilyontmoor I know you have posted before and I appreciate you are trying to help. I am truly sorry you have gone through what you have.

However, and I may have said this at the time, oncologists vary in their opinions.

For example, women on estrogen-only hrt have less BC than the population NOT using any HRT.

The recent thinking is that it's the combination of some types of progestin, used with estrogen, that influence the growth of cancers.
There are quite significant differences in BC rates between the different types.

There is also the work of the US oncologist Avron Bluming who disputes any connection between estrogen and BC (and his daughter and wife had BC.)

So it isn't that simple.

If by the 'menopause society' you refer to the BMS, I think you are doing them a disservice to suggest they are not up to date or take a casual approach to HRT and cancer.

The drs in the BMS are also doing research (Nick Panay for instance) and others are world experts. The journal Climacteric is full of research on an international level.

I'm not disagreeing with your view, just pointing out that not everyone would agree with your dr.

Ultimately, no one is really sure. But also, equally, different drs have different opinions.

@Emilyontmoor I left a link for the OP which is on the BMS website. The videos there are not simply 'menopause drs' . There are at least 2 very well respected breast specialists, one who is one of the best in the world.

A GP who had watched Louise Newson's podcasts. x

How do you think you will find a way forward @LunaStarlight

In the UK at the moment and the NHS as it is, it's highly unlikely you can see an oncologist as you do not have cancer.

(I may be wrong and your GP may be happy to refer you, but it probably won't happen any time soon.)

Your realistic option is to see someone privately. London is the best place and TBH I'd say you need to see a breast consultant as a starting point. Most of them are breast and oncology experts.

Some of them specialise in your kind of situation - family history and risk.

Is something like this an option for you?

Luna The link to Chelsea and Westminster which crossposted my post is good advice. Your GP may say they can’t refer you but they can. We just had a similar fight with getting a family member referred to their pain clinic, in spite of a Consultant recommendation for referral the GP refused to act on it saying they didn’t have the power but when they relented and we chased it via the NHS app (which you should download) we were seen within a month (after a nine month delay ).

And yes my oncologist thinks that the link between lifetime exposure to hormones, particularly Estrogen, will prove to be akin to the link between smoking and lung cancer because of what she sees coming through her door. The reality is that even for lung cancer where the link has been established for decades we do not fully understand why some people, some who never smoked, develop it and others don’t. The truth is probably a mix of either directly causal genes or genetic vulnerability, environment and the direct risk factors. For BC those known risk factors account for very little of your risk. Known genes account for only 4% (though unknown ones, and there are many suspects being investigated, probably account for many more. My DD is involved in that research), known lifestyle factors account for only 1% (whatever the Daily Fail would have you believe) . So the reality is very complicated and far from fully understood. I understand your concern given I have two DDs who suffer the symptoms and appear to have inherited my estrogen dominance (though we have no family history of hormonal Cancers).

Jingling I do understand that research is going on all the time. I and my friends who shared the BC experience obviously follow it . However as you rightly say the researchers take different positions and there was clearly an over bias towards the link between HRT and BC but I worry that that pendulum may have swung too far the other way. All we can do is access the best advice, which I am sure Luna could get at C&W and reach your own decisions. I am afraid I do detect bias in the recent pro HRT “movement” but women will have to decide for themselves.

Jingling, your right, it’s a nightmare, I’ve contacted one specialist £135 for 30 mins, husband seems to think I should just wait till February then June, I’m still waiting to see if the doctor will allow at least another prescription while I work through the minefield… I’ll do what I think is best for my personal circumstances, I have the time to read all the links and watch videos and draw my conclusions, I wouldn’t wish BC Or and C on anyone 😞

Emily, thanks ever so too, I’ll re read over and over until it sinks in, brain fog today x

@LunaStarlight

Jingling, your right, it’s a nightmare, I’ve contacted one specialist £135 for 30 mins, husband seems to think I should just wait till February then June, I’m still waiting to see if the doctor will allow at least another prescription while I work through the minefield… I’ll do what I think is best for my personal circumstances, I have the time to read all the links and watch videos and draw my conclusions, I wouldn’t wish BC Or and C on anyone 😞

@LunaStarlight I feel a bit concerned over the way those fees work.

(I've a LOT of experience of the private sector, both professionally and with insurance/ company cover for over 30 years.)

It's actually cheap what you have been quoted.

Most top specialists don't define the first appt by minutes. They quote for the 1st appt and it can be anything up to an hour.

The going rate is usually £300 for the 1st appt.

Please be sure that the dr you are booked with is really an expert. (I am happy to give an opinion if you wanted to share by PM, simply as I am familiar with many through my work.)

One thing other than this to bear in mind is that at 48 you are still not at the average age of the menopause which is 51.

Most drs would say you are now replacing what you should have till at least 51. That means the risk is minimal.

It's a very hard call for you and for many women.

Let me know if I can provide you with any more info.

I won't take hrt because of breast cancer family history.
I have found anti depressants have been helpful in alleviating some menopausal symptoms - and it was unexpected because I wasn't prescribed them because of the menopause.

@Emilyontmoor Out of interest (and not wanting to argue with you!) how long ago did your oncologist say this?

It's just that the message recently from specialists is that estrogen does not cause BC but may accelerate the growth a cancer already there (and which would grow anyway in time.)

This is what my own gynae told me (and they are one of the top in the UK, training other drs .)

Because if estrogen caused BC why would women on estrogen only HRT have less BC than the base population? Why would women who have had more children (so high levels of estrogen) not be at more risk?

This is explained here by another meno gynae.
www.menopausematters.co.uk/risks.php

Also, the Pill is not the same as HRT. It's all synthetic formulations, and in much higher doses.

As a long-term user of HRT I'm always reviewing the evidence because I have to balance the risks me for of stopping, against other risks. It's just not easy!