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)

Or maybe you thought I was replying to the OP rather than @Hamsterdamn ?

My comment about randoms on the internet is really passive aggressive now I read it back 😳 I’ve just spent 24 hours fuming about the ill-informed and inflammatory posts saying HRT after bc will def kill you, and I was resisting the urge to address those particular posts by keeping it broad.

Ive had er+ bc and am seeing menopause clinic in a few weeks because my qol is so bad. I have read and re-read so much on this area. I think we share the same perspective.

However, my point still stands that the reason HRT is not advised after BC is because of a lack of evidence from RCTs. Not because it’s necessarily unsafe, but because BMS, NICE etc can’t confirm that it definitely is safe.

But they all advise to take qol into consideration, patients needs should be looked at on a case by case basis and that risk factors are much more complex than simply hrt = bad.

However, my point still stands that the reason HRT is not advised after BC is because of a lack of evidence from RCTs

Who would ever take part in such a trial?

Similarly, there has never been a RCT of any HRT.

ALL the stats on risks of HRT come from observational studies, and some rely on women attending breast clinics (again, mentioned on the Panay interview) so the bias is there with those.

You're right that it's not black and white - listen/ watch the Nick Panay Youtube interview on it - which perhaps you have already?

There are women who use HRT after breast cancer, prescribed by specialists.
Prof Michael Baum has prescribed HRT to women after BC for years - he's online in interviews explaining his rationale behind this.

There will probably never be any RCT for this- which woman wants to take part in a trial that may cause recurrence of her BC? Where would they find the numbers to make it a worthwhile trial?

I hope you find a way forward with your own situation.

Thanks @LawrieForShepherdsBoy I appreciate it. Yes, I think this is exactly what happened. And I know I should listen to experts but cancer is so emotive.

I think you may have been hacked by Rowan btw

@JinglingSpringbells - I wouldn’t do hrt rct cause of fear of getting the placebo! You may be interested in this article which discusses problems doing this research.

In the interest of keeping accurate info out there, there have been RCTs - HABITS, Stockholm study and and most recently Women’s Health Initiative. So it’s not like there’s no double-blind placebo research, just less of it compared to observational studies.

In case anyone is interested, here’s a link to most recent BMS statement on the subject. It basically says that we need more research, but that ‘no arbitrary limits should be placed on use of HRT’ and decisions should be made on case by case basis.

@Hamsterdamn Twas Tim who hacked me 😁

RCTs don't have to be double blind or placebo. They can be placebo and active drugs.

There are many trials taking place where the subjects know what they are taking.

I didn't think the WHI research was on HRT after BC? It was over 20 years ago unless there is a new study you're mentioning.

Nick Panay mentions the other two in his interview.

He also says that what it needed for the risks of HRT per se, especially the different progestogens, (not necessarily after BC but generally) are RCTs but admits they may never happen owing to taking time (they'd need to be for at least 10 years), hundreds of 1000s of women, and rely on women not using HRT and using HRT.

My consultant has told me it won't be happening any time soon or at all ( and for the pharma companies there isn't enough profit in it anyway- they're investing in cancer treatments, etc.)

The other important issue is that ( in the BMS link), the most frequently prescribed progesterone now - Utrogestan- was never used in any trials (it says in 'numbers too small to be significant') and this is the most frequently discussed issue.

The BMS gives the 'ok' for micronised progsterone for up to 5 years' use. Other studies in Europe like the French EN3 study showed no increase after 11 years' use.

To quote my consultant 'We just don't know' [because there are no proper trials - it's all observational and not with Utrogestan.)