Menopause, breast cancer, no HRT questions… can anyone advise, please?

[TwoBigNoisyBoys]

I’m hoping to get some advice her please because I can’t seem to find what I need on Dr Google!

I started taking HRT for peri-menopause symptoms around 12 months ago, and after trial and error of trying gel and patches, eventually settled on tablet form, which controlled my symptoms well. I was also on the mini pill for contraception, and have been for around 7/8 years. The mini pill limited my periods, to alimony nothing, maybe one a year and the last period I had was September 2019. It was never suggested to me that taking the two together was a problem, and the GP prescribed them both alongside each other.

In October 2021 I was diagnosed with stage 1 breast cancer, (not hormone led) and told to stop taking both HRT and the pill straightaway. I began chemo in November, and have just finished 24 weeks in total. I’m due to have surgery in May, followed by radiotherapy. I may also possibly need oral chemo, but that will depend on pathology results after surgery.

Menopause symptoms have returned, mostly hot flushes, sweats, insomnia…although it’s difficult to know whether other symptoms such as brain fog are due to the menopause or the chemo. My oncologist has said I will never be able to go back on HRT, even if I’m fully cured, as although my cancer is not hormone led, HRT would increase the risk of cancer recurrence. So that’s that. I have to learn to manage the symptoms in other ways; obviously I’d rather do this than risk recurrence but it’s upsetting as the HRT worked so well for me, but that’s the cards I’ve been dealt. Any advice on dealing with the symptoms without HRT would be very gratefully received.

I have no idea what’s happening in my own body…! My last period (while on the mini pill) was September 2019, and I haven’t had one since; coming off the pill upon diagnosis in October didn’t bring on a period, and I started chemo 3 weeks after that, so the chemo may have prevented my periods from returning. I wonder if anyone has any experience of this - am I likely to still be fertile? Would I still need to use contraception? I intend to use condoms with my partner anyway while I’m still being treated/recovering, (not that we’ve resumed sex yet) but I’m just wondering what on earth will be going on inside my own body?! I can’t get the answers I need online and I don’t have an oncology appointment til June now.

(I’m sure I meant to write more but I’ve got such brain fog I can’t remember what it was!)

Any knowledge, opinions or advice would be great, thank you 😊

Hopeful bump for the morning crowd 😊

Hiya sorry my situation is not the same as yours but thought I'd post in case it's helpful.

I was diagnosed with triple neg breast cancer in June '19 and finished chemo Dec '19. Period returned July '20.

However I was in my late 20s not going through peri menopause.

If I were you I would use condoms anyway, and see if your period returns within a year of finishing treatment. When I saw my onc 6 months post chemo she was not worried at all that my period wasn't back yet, she said it can all take time.

Wishing you all the best, cancer and treatment sucks 

Louise Newson seems to be querying this HRT approach. But I’d be cautious like you too. I’d look more into it.

you should still be fine with topical vaginal oestrogen. Gentle exercise with some strength training will really help.

I how everything turns out ok.

Thank you both so much for your replies, I’ve read about the topical gel too, but to be honest I’m so terrified of a recurrence I’m scared to go down any HRT route - I’ve already developed health anxiety and I can imagine that would make it worse for me! So frustrating because the HRT I was in worked brilliantly for me, and I was really getting back on track, then got hit with the cancer stick ☹️

I guess you’re right, @Ruibies and a lot of it will be ‘wait and see’ anyway. I will discuss it with my oncologist but it’s all so inter-twined I just haven’t got a bloody clue what my body is doing. Feel completely out of control!

Thank you for the good wishes 😊

I'm sorry you are suffering like this @TwoBigNoisyBoys

In brief, you need to see a menopause specialist- that's a gynaecologist.
You can ask to be referred to the NHS meno clinic at the Chelsea and Westminster Hospital London where they deal with cases like yours. The clinic is led by Nick Panay and he also has a private practice if that is anything you can consider. Women go from all over the UK and after one appt I think they do phone appts as well.

There is also a lot of controversy over HRT after BC. Not all specialists agree.
There are some who do not believe it will affect your risk especially if you are estrogen-negative. You will find that many menopause experts disagree with your drs!

One of those is Prof Michael Baum who is on this youtube video on the BMS site. thebms.org.uk/publications/bms-tv/

3 minutes in he talks about women like you.

There is a youtube video with Kirsty Lang (radio broadcaster) discussing how she has gone back onto HRT after BC.

Ultimately it is your choice. I'm not saying you should ignore what you have been advised to do, BUT it's definitely worth getting more opinions.

Even if you do not go back onto HRT, you should still see a menopause specialist who can offer you other non-hormonal drugs to help the flushes and insomnia.

Thank you @JinglingHellsBells …you’re right, there’s a lot to think about. I need to do a lot of research, thank you for your recommendations and links…I will have a good look through later.

I think I will ask for a gynae referral. I don’t think going private would be an option, unfortunately, financially it wouldn’t be manageable.

So I had triple neg BC, pushed into meno by chemo. Then risk reducing oopherectomy so definitely menopausal, no going back. I went into meno at 38. The age is really important because of the increased osteoporosis risk in later life.

You need to go to your GP, and you need to be referred to a specialist. I am under a breast endo gynae. There are a few options for non-HRT treatment of meno that they can try. For my (obvious) meno symptoms I currently take gabapentin 300mg at night. It has reduced my hot flushes (though I haven't been on it through summer so let's see). It also knocks me out a bit, so the hot flushes don't wake me and I'm getting sleep, so my mood and concentration are vastly improved. It's good enough for me.

You need to keep your oncology team informed about changes in meds though, because some can sensitise you for radiotherapy.

But ALSO I have had a bone density scan, which we are yet to discuss. He will monitor this with me over time. HRT protects against bone loss in a way other menopause treatments don't. This is a less visible symptom of early meno, which has huge consequences in later life if not managed. All you can do is take calcium, vit D and do weight bearing exercise. But if you had poor bone density it would add strength to the argument to take HRT.

Re fertility, yes you might be fertile. Periods can return after treatment so do use contraception if you don't want to become pregnant.

Thanks @Starface . I’m 48 now, so started HRT when I was 46/47 (I think). That’s really useful information, loads to think about. Thank you.

The cost of private appts is around £250-£300 for the 1st appt ( can last an hour) and subsequent ones are around half of that. You might only need 2-3 appts in a year and once any treatment is decided, your GP may continue to prescribe.

The bone density issue. Depending on what treatment you take (some women are on anti-estrogen meds for 10 years) bone density monitoring is supposed to happen and they are given drugs to prevent bone loss. This may be something they discuss with you further down the line, but don't be fobbed off just because you are 48 (and they will consider that close to natural menopause.) Again, your GP may be able to request a baseline DEXA scan now.

I think I will ask for a gynae referral

Do your homework! Don't just go along with whoever your GP refers you to as you need one who is a menopause specialist. Not all gynaes 'do' menopause .

On the link I left to the BMS videos, there is also a link on the Home page to SEPCIALISTS- top of the page. You can search by location for menopause experts in your area.

Brilliant @JinglingHellsBells …thank you so much for taking the time to post all that. Really helpful 😊

I know Dr Newson has already been mentioned up thread, but this episode of her podcast might be worth you listening to in order to help inform your decision: podcasts.apple.com/gb/podcast/the-dr-louise-newson-podcast/id1459614845?i=1000550411134

This is the blurb for that link:

Medical oncologist, Dr Avrum Bluming makes a welcome return to the podcast this week to re-visit the hot topic of menopause hormone therapy after breast cancer. Avrum has spent decades studying the research on the benefits and risks of HRT in women with a history of breast cancer and is passionate about giving women clear, evidence-based information that dispels myths and combats the misinformation that has unnecessarily frightened women and clinicians for over 20 years.
In discussion with Dr Louise Newson, Avrum clearly explains what his recent review of the literature reveals about the safety of HRT and the benefits it brings for your future health. The experts highlight the gender disparities that are commonplace in how women with cancer are treated with regard to their hormones compared to men, and they also discuss the importance of patient-centred medicine and giving women choice.
Avrum’s 3 tips for women interested in exploring their menopause treatment options after breast cancer:
1. Speak to your oncologist. Tell them about your menopause symptoms, ask to discuss the possibility of starting HRT and have a conversation about the benefits and risk for you individually.
2. When it is available, take Avrum’s article that will be published in the ‘Cancer’ journal in May/June 2022, and show it to your oncologist and GP. Don’t accept a dismissal of your views – engage them in discussion.
3. ‘Oestrogen Matters’ (2018, published by Little Brown) is a book co-authored by Avrum that is for women and clinicians, including a chapter on HRT after breast cancer, and it is heavily referenced to show all the evidence behind the information given.
Links to Avrum Bluming’s upcoming journal article will be published on the balance-menopause.com website when it is released.

Sorry @CaveMum I’ve only just realised you’d posted here. Thank you so much for that; I have a lot of reading to do!

My oncologist has advised me not to go back on HRT as she says although my cancer is not hormone led, I do have an increased risk of recurrence which increases further if I return to HRT. I literally cannot BEAR the thought of recurrence. It fills my days with negative thoughts and my nights with nightmares. And I’m not even at the end of treatment yet, let alone received an all clear.

Yet I’ve spent another night tossing and turning in a pool of sweat 😩😩😩 I can’t remember the last time I had a full nights sleep.

Has anyone had any success with anti-depressants helping hot flushes? Feeling so bloody miserable.