Trying to get HRT after breast cancer

[HRTNightmare]

Hi, I am looking for advice specifically for women who have had breast cancer and wish to go on HRT. My experience with the NHS has been a nightmare and I am increasingly desperate.

I had oestrogen receptive breast cancer more than five years ago in my early 40s which was successfully treated with surgery and radiotherapy. I was prescribed tamoxifen as then pre menopausal but I had to stop it after c9 months as I really couldn’t tolerate the side effects, particularly awful joint pains.

I am now 49 and peri menopausal. I knew HRT would be more complicated for me given my history but was told it would be assessed when the time came. Well, the time has come: I have night sweats, hot flushes, awful brain fog, terrible joint pain etc.

I approached my GP three years ago. Wouldn’t help me and told me to come back when I hadn’t had a period for two years and she would diagnose me as in menopause! No advice, no referral. I persisted and saw another GP. She wouldn’t prescribe because of my history but referred me to the Gynae team at my NHS trust to be seen by a consultant. In the meantime, I had blood tests done privately which showed I had an incredibly low level of testosterone which explained my disappeared libido, and I saw a hormone specialist privately and had testosterone gel prescribed. Great product, huge cost. Also discussed with the private specialist the options for me and HRT and decided there was a good chance I would tolerate well. I am fully aware of the risks- they aren’t that big. I didn’t get it prescribed privately as I can’t afford that as well as the testosterone.

after numerous cancellations I saw an NHS consultant who told me she wasn’t qualified to prescribe for me (!!). I went to a private menopause clinic for advice and was reassured that what I believed I understood about the risks was true and so I feel the risks are acceptable to me given the impact menopause is having on me.

I saw another NHS consultant. She was awful. Refused to believe there was a case for prescribing me testosterone (when I know the risk is negligible), refused to prescribe HRT and described it as a situation of her being a conscientious objector!! Also demanded to know why I didn’t just get it prescribed privately if I wanted it. Told me she wasn’t going to risk her GMC registration to prescribe me HRT.

I am now waiting for a second opinion at another trust. Awful NHS consultant said she was happy to refer me to Edinburgh (I am London based) if I thought I could get HRT there (!) but that she couldn’t think of a single NHS consultant who will prescribe for me.

I feel quite broken by this experience. Does anyone have any advice or help?

(Long term user - name changed because this is quite outing)

60andsomething: I have no idea why you have chosen to comment on my thread. What an unpleasant and probably unhappy person you must be.

why are you saying those things? I am not at all unhappy. I have been through the same situation and made the decisions which are going to keep me with my children the longest. You want to know what other people in the same situation have done. I have done this. I have accepted I can't safely use HRT, and to try to do so would most likely leave my children bereaved before it is necessary. And cost the NHS, which has already spent around half a million on getting me back fit for work again.

Sorry if you don't like what I am saying, but really - ask yourself why you have to call me nasty and unhappy for telling you the situation as it actually is

I second dr Louise newson. She's the tv doctor. You'll recognise her. Has her own clinics. Believes in hrt for cancer survivors and testosterone for low libido.

60Something: what I actually asked for specifically was advice from women who have had breast cancer and wished to go on HRT. That’s clearly not you.
What I did not ask for was cancer shaming (crass, as another poster described it), guilt trips about causing my own cancer to come back or any of the other nasty and unwarranted remarks you have made.
The ‘truth’ for me is I was incredibly unlucky to get breast cancer at all. I have no gene, no family history, no other factors that might have indicated it. The truth is also that if I drank alcohol or had a higher BMI or smoked, my risk factors would be higher for recurrence. None of those apply. The truth is that my bones are suffering, my memory is shot, my cardiac health isn’t great and my relationship is suffering. All of those things can potentially be vastly improved by HRT. So actually, do one with your doom mongering.

The breast clinic at the RVI in Newcastle has an HRT specialist. Maybe worth trying to get referred there or asking your specialist to seek advice from them

sorry you dont like my advice. But you asked for advice from people like me, and I have given it

I was told absolutely no way that I could take HRT. My BC was "likely" triggered by heavy doses of progesterone prescribed to me to stop peri bleeding. It's not a risk I would be prepared to take or allowed to for that matter. I have managed to cope with chemo induced menopause quite well but appreciate it's not the same for everybody. Exercise and specifically strength training helped a lot.

In terms of tamoxifen, I struggled with this too but have persevered and the side effects have dwindled greatly now. I'm four years in. There are other things you can take if it doesn't suit you.

I’m going to leave the thread now as 60Something has made it her personal bile platform.
Thank you so much for the very helpful advice from those of you who offered it.
For the avoidance of doubt, just so people know I have actually tried everything before begging for HRT, I take black cohosh, magnesium, Vitamin D and evening primrose oil. I weight train, box and do cardio every week. I meditate. I have researched and researched. I don’t think any woman who is desperate for HRT after BC is stupid or ill-informed. Perhaps I have just decided I would like some quality of life.

Hi OP- it's perfectly reasonable to choose what is best for you overall. Anecdotes are meaningless - a decent specialist will be able to talk you through the risks and benefits based on actual data and you can then decide.

Thank you for calling it "bile" for me to tell you about the deaths of my friends. You don't want to hear the truth. Many medical professionals have already told you the truth.

I don't think the other poster meant harm to be fair. I'm really sorry you feel so shit. I can't say go and find somebody to prescribe because my own consultant was adamant it was far far too risky to take. Similar from the specialist BCN. However, that doesn't help you right now. I imagine you'll have to pay to see an expert and take the risk if you feel you can. I wish you good health going forward.

This is very helpful, thank you. Was your bc er +? And do you mind if I ask whether the hysterectomy was linked to your bc?

@HRTNightmare I'm sorry you have come in for some unkind and very judgemental posts here which aren't at all helpful.

It is not so black and white as some posts have implied - that's obvious by the online information available from specialists treating women like you.

My understanding is that the best menopause specialists will discuss the pros and cons and leave the decision to you. I'd assume a lot depended on what stage your cancer was and your future risks.

And to imply they are simply intent on making money out of you is unacceptable. Many of these specialists work in the NHS (but also run private clinics.)

The outcome you may have after discussions with an expert, is that you will be asked to choose between potential length of life and quality of life, and maybe use HRT after trying all the other alternatives that they can offer.

There are many experts out there - mainly in London - who it's worth having a conversation with. Yes, it will cost you, but you'd be accessing world-leading experts.

Maybe follow up the leads here, take your time to take advice from experts and then decide what you want to do. It's your life, after all.

Yes my BC (over 15 years ago and very young to get it - I was in my late 20s) was both oestrogen and progesterone positive. Hysterectomy due to massive fibroids which had degraded and were worried might be cancerous but were not. That was late 30s, and no one thought (at least no one mentioned) it was related to the BC, but I had a full hysterectomy as a precaution.
I appreciate HRT is not for everyone, but quite frankly I believe I would kill someone if I wasn’t on it despite taking a plethora of different herbs and vitamins, doing yoga and breath work etc etc. I would also be unable to walk due to crippling joint pain nor work because of the insomnia and brain fog. It a very personal choice not helped by emotive rhetoric or people telling you it gets better and you’ll be fine because they were. My mother is in her 70s and still gets hot flashes and doesn’t sleep, she’s chosen not to take hrt, good for her she doesn’t need to get up at 6 to hold down a reasonably senior job and take care of tweens. I’ve been told off before on here for suggesting Dr Mindy Peltz (apparently a quack!) but she says be your own study, look what’s out there and pick what’s right for you.
Best of luck to everyone, and hopefully we all stay in strong remission.

My advice is forget it. Every single person I know from my original support cohort who tried this is dead.

@60andsomething One thing puzzles me.
You've made your opinion very clear to the OP but it is really your opinion, not facts.

For example, given that it is very hard for women to use HRT post-BC, which you acknowledge, how many women in real life do you know who have used it after a diagnosis and died?

In your opinion, doctors are telling the OP 'the truth' but the reality is that doctors have different opinions and levels of expertise and 'the truth' is far more complex.

Some doctors would argue that quality of life, not quantity of life, is important
(which is why it's acceptable to refuse medical treatments like chemo.)

It's also just your opinion that if the OP took HRT she'd die .
You don't know this.

The connection between HRT and BC is very unclear and complex which is what the best doctors will admit.

@HRTNightmare If you're still reading, there is a very informative Youtube interview with Nick Panay (and Diane Zanzebrink) on Understanding Menopause - Management after cancer treatment.

Round about minute 20, he discusses BC and (HRT after diagnosis.)

To summarise, he says -

-The jury is still out.
-One study at the Royal Marsden showed no reoccurrence when women used Tamoxifen along with HRT.
-He stresses that women need expert help, not from a GP or even a gynaecologist but a very expert gynaecologist.
-Decisions are made on an individual basis when looking at the whole picture of symptoms, risks, quality of life.

I hope you find a way forward and whatever treatment you choose helps.

Don't give up.
There WILL be a clinician who recognises quality of life versus risks.
Each and every woman's situation is unique; it's not one size fits all.

You wouldn't be researching and asking questions, if you were not desperate. The names which have been mentioned ( Newson etc) could help you.

Best of luck x

This thread has really frightened me. When I had oestrogen positive breast cancer I understood that hormonal contraceptives and HRT were contraindicated.

15 + years later I was seen by a specialist team who I formed me that there had been a lot more research in the area. They looked at my individual risks ( age, stage, size, operations) and worked out that my risk was actually lower than that of the general population.

But now I’m wondering if I’ve been stupid!

I take anti depressants OP as I decided against HRT although my breast cancer was not hormone receptive. It’s dealt with the fatigue insomnia and the anxiety. Obvs diff symptoms to you but might be worth a try. They’ve been revolutionary for me.

equally, if I needed HRT , I would take it. I’d already researched Louise Newson as realised I’d have to go private. It’s your risk, and it’s all risk-benefit choices. Drinking alcohol nightly has a higher risk than hrt and plenty of women do that. You can balance out your risk , and obvs sport helps which you do.

You haven’t been stupid - you’ve followed the advice of experts. I’d take their perspective over random internet posters!

Most data on HRT after breast cancer is from observational studies. This means that researchers look at pre-existing medical records, rather than start their own trials. The data from these studies doesn’t show significant risk of recurrence.

However, the problem with observational studies is that there is an implicit bias. Doctors will have been more likely to give HRT to women with smaller recurrence risk: eg younger, healthy weight, earlier stage cancer, no node involvement etc. So it can’t really be considered good data and thus can’t be used to inform guidelines at a national level.

However, it sounds your doctors have used exactly this kind of case-by-case decision making: they looked your individual risk factors and then used their knowledge of research to give you the go ahead to take HRT.

@LawrieForShepherdsBoy The posts by people here are signposting the OP to world-experts. It's not personal opinion. I can't see any post at all where someone says 'Yes, go ahead and use HRT' for the OP. They've said find an expert to talk to.

Research has changed. Look at an interview on Youtube between Diane Danzebrink and Prof Nick Panay discussing HRT post cancer (all female cancers.)

He says that research at the Royal Marsden showed no recurrence, especially when women used Tamoxifen, and that the jury is still out in terms of 'okaying it' for all women.

Was the Marsden study the observational one you were referring to?

And if it's given to women with low risk of recurrence, then that's a good thing surely. selecting women who can use it again is the whole concept of individualised treatment. It's good practice. NO drugs should be given 'at a national level as everyone is different and drugs are prescribed after a risk/benefit analysis.

@JinglingSpringbells - I think think maybe you misread my post?