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)

I'm afraid your experience is not uncommon. Once you've had hormone positive BC, the prospect of HRT seems impossible. What's the situation with the private menopause clinic? Were they not willing to prescribe? Why a referral Edinburgh?

Chelsea and Westminster hospital have a menopause clinic. They may be worth being referred to?

I've had BC, I was prescribed by a consultant at Liverpool women's hospital. Check out the BMS website and see what private consultants are in your area?

Good luck. It's a hideous journey.

I could have had it prescribed by the private specialist I first saw but the cost was out of my reach at the time.

The remark about Edinburgh was a flippant one made by the consultant to say I could search far and wide to see who would help me and if I thought I could get in Edinburgh, she would refer me there. I don’t know if it was meant to be humour but as I was crying at the time, I think she was just being an arsehole.

Thats a good shout for Chelsea and Westminster, I shall ask about a referral there.

I am pleased you managed to get your prescription - there’s light at the end of the tunnel at least!

There is a large menopause group on fb called the latte lounge. The woman who runs it, her father is Avrum Blooming, bc oncologist I believe and a strong advocate for hrt, I would try asking on there.

Thank you so much for the Latte Lounge suggestion - I have just seen the Kirsty Lang interview. Now feeling like I have the energy to keep trying!

Also, google Paula Briggs/ Louise Newson. Both may be able to help you.

I had strongly oestrogen positive breast cancer 8 years ago, at the age of 46. I went into menopause basically overnight after starting Tamoxifen, I did 5 years on that and 3 years Anastrazole (finally just finished all treatment!). I did get prescribed oestrogen pessaries for vaginal atrophy, I have also recently started using oestrogen cream on my vulva. Both of those are a low dose and very little gets absorbed into the body. I would have been too scared to take HRT I think , but probably could have done with it as I now have osteoporosis sigh….

Good luck, I believe Louise Newson is the lady you need.

I had early menopause at 33. GP was awful, wouldn’t prescribe HRT, and I didn’t go on HRT til I was 42 and paid for private. By that point, I had osteopenia, FSH of 130+ and estradiol levels of 70. I felt awful. HRT changed my life. I changed GP to a much more HRT-positive surgery.

Two years ago, after three years on HRT, I was dx’d with stage zero DCIS, estrogen positive 8/8. When I was told about it, all I could ask was about whether I would ever be to take HRT again. I got no answer then, or speaking to oncologists in preparation for radiotherapy. However, they did suggest a referral to menopause clinic.

The menopause clinic wouldn’t see me until cancer treatment was finished. That was last July, and my GP has just referred me again.

I have always had various mental health struggles, and Im currently in bits. Constantly overwhelmed, unable to manage the smallest amount of stress, confidence on the floor.

When advising me on whether to have radiotherapy, the doctors said that evidence showed radiotherapy doesn’t have an impact on survival at ten years. However, it does impact recurrence and they recommend because of the psychological effects of treatment etc.

I feel that the psychological effects of menopause symptoms are so bad for me, that I would like to apply that logic to the decision to restart HRT. I am also desperate to be a good parent to my teens, be able to support my parents who are both ill, and be able to take some of the every day tasks off DH, who has been amazing, but deserves a better life than he has now.

I have read through a lot of the research on HRT and recurrence rates. I’ll try to come back later to write more about it. But right now, I think I just want to see if going back on HRT has the impact on my life that I think it will. It seems pointless to obsess about risk/benefits without knowing what the benefits to me actually are. I have been anaemic, have some post-viral fatigue going on too. So I’m wary of focussing too much on HRT as a silver bullet.

I want to stay in the NHS, mainly for cost but also legitimacy.

I have osteopenia already and the women in my family die of stroke/heart disease whereas I am the only one in any generation I can find that has had breast cancer. I just want to be able to function properly. For me, quality of life is very important.

I’ve got it in London. You need to be referred to Nick Panay’s menopause clinic (at Hammersmith hospital) and have sign off from your oncologist that they are happy with you having it. I have had a full hysterectomy so only have oestrogen and testosterone (which I lie and say is for libido), but as long as I continue to see my breast oncologist annually they are happy to prescribe. (To add I saw Nick Panay privately for a second opinion but his menopause clinic where I also went is NHS and I saw one of his colleagues there).

There is a reason that so many doctors have refused to prescribe HRT to you. You should listen to them. I had a tough menopause but couldn't take HRT. But believe me it doesn't last forever and does get better. I suddenly realised that the gaps between each set of symptoms were getting longer and the symptoms were milder. Do what you can to get through it. I found a hypnotherapist who helped with the anxiety and depression and he gave me recordings to listen to.

VJBR - I have tried many different avenues. I have weighed up the risk and for me, it’s an acceptable risk. We aren’t all the same.

I had breast cancer at 48 and chemo put me in menopause then 10 years Tamoxifen in theory. Told must not go on hrt and I would be too scared to.

I have found various things that help - swimming 3 times a week around a mile each time helps mentally, physically and don't get many menopause symptoms at all other than pre swimming. Brain fog I only had for a few months and it improved with researching things that used brain and going back through what happened in that period and now my memory is the best in my family again. I do occasionally get a blank moment but quickly comes back. Aches are minimal, take Well woman 50 occasionally. Now building up walking. Also put on weight with Tamoxifen and went out of normal BMI so losing that weight and nearly back to normal BMI and that helps with walking etc. I have found the lack of aftercare quite shocking but state of NHS I guess. I hope you can find a solution.

Podcast and transcript on HRT after breast cancer here:
https://www.drlouisenewson.co.uk/234-breast-cancer-treatment-and-hrt/

And another one here:
https://www.balance-menopause.com/menopause-library/029-life-after-breast-cancer-kirsty-lang-and-dr-louise-newson/

Hi OP. Can you ask the private consultant to send a letter to your GP recommending HRT?

I am seeing a private gynae who has written to GP recommending an increase in oestrogen over 100mcg as I need more but GP won't prescribe.

I don't need a private prescription, I just get it via GP.

@HRTNightmare What a horrendous experience you've had with the NHS and particularly that one Consultant! I am in Scotland and can tell you that NHS Scotland is devolved and there is no chance of you being referred here for treatment, so she was very wrong to have said that to you! I would complain formally to your NHS trust through the complaints procedure given the experiences you've had. You have nothing to lose at this point and possibly everything to gain.

I think a referral to Chelsea & Westminster would be your best option - ask for this in the body of your complaint as the outcome you are seeking.

(Wondering who precribed you Testosterone only - that's an extremely unusual move and unlikely to be helping you much during perimenopause by itself).

I may be a bit late to this, but have you tried Dr Louise Newson?

Was this your first try and too expensive?

Unfortunately, you are probably going to have to find a private consultant, which means forking out if you can.

You've had some great names here to follow up, if you can.

@LuckyCharmz Her father is Prof Michael Baum (A Bluming is US based) now well into his 80s but Katie is worth connecting with in case she has avenues to recommend.

@HRTNightmare If you goole the Chelsea and Westminster Hospital Meno Clinic, there is a referral form/ process set out there for GPs.

The answers I have had from the NHS about HRT after oestrogen positive BC is no way, never.

of course if you hunt high and low you can probably find some outlier who will claim that the risks are smaller then others perceive them to be, etc etc etc , but you are really scraping the barrel.

Other people I know who went down this route are now spoken about in the past tense.

The reality is, no, it has a good chance of killing you, ( and incidentally costing the NHS hundreds of thousands, and taking up a space in a cancer ward that someone else needs) and the consultant who said it could cost them their registration is right, it could.

Nick Panay’s team on the NHS are happy for me to have it after oestrogen positive breast cancer. I’m not sure his menopause clinic team are outliers or scraping the barrel, he’s widely acknowledged to be one of the top specialists in this field. Yes there are risks, and everyone should do their own research based on their own symptoms and quality of life. Trying to make people feel guilty for being on a cancer ward is pretty crass too.

Can you see the Menopause clinic at the Whittington?

I had breast oestrogen receptive breast cancer 15 years prior to taking HRT. I was wary of the Whittington but they’ve been amazing.

60andsomething - I’ve already done the cancer ward thing - should I feel guilty about what I cost the NHS for treatment? What a bizarre thing to say on a thread seeking advice.

Thank you to everyone else who has given such great advice, it’s much appreciated.

@HRTNightmare Get in touch with Katie Taylor at the Latte Lounge as someone else said.

I doubt her father Prof Michael Baum is still prescribing, but as a former breast specialist he has some videos online, where he says the choice must be with the woman, to choose quality of life (even if it comes with some risks.)

He worked for decades in BC within the NHS and was renowned for taking women's choices into consideration.

https://www.whittington.nhs.uk/mini-apps/staff/profile/?id=332

and

https://www.whittington.nhs.uk/mini-apps/staff/profile/?id=3588

are the team I see at the Whittington. They’re great. I haven’t been offered, or asked for testosterone though. I’m on oestrogel and Utogestron

I am a medic and attended a conference recently about managing menopause after HRT. The consensus was that oncologists worldwide generally agree that systematic HRT after breast cancer is not a good idea.

However, they will try lots of alternatives to try and help your symptoms.

Have you done your predict score? If your risk of recurrence is small and you have tried all alternatives and are really suffering, then I feel HRT would be considered- however, in reality, it depends on the practitioner