Are they going to take my HRT away?

[RestlessCreature]

Hi all, after surgery I went into surgical menopause HARD and was put straight on HRT patches. I now have a diagnosis of clear cell carcinoma Stage 1c, shortly to start chemo. They asked what meds I was on in the appointment and I forgot to mention the HRT as I don't think of it as meds as such. I'm now terrified they're going to tell me I have to stop taking it and I'll be plunged into a mental health disaster (seriously, I was a sobbing suicidal mess). I've read some stuff online that suggests it's low risk, safe and possibly even beneficial to stay on HRT with an OC diagnosis but no idea if my doctors will agree with the internet. Not sure if the type makes a difference either. Does anyone have any insight? Thanks

[SarahBa]

Hi, sorry to hear about the situation you are in.

I think I can help you but firstly it would be good for us to know if your ovarian cancer is oestrogen receptor positive? (mine is).

I was definitely advised against HRT due to having a cancer that feeds off oestrogen but before just jumping to take HRT due to my surgical menopause I wanted to first see how my body coped and thankfully absolutely fine without HRT.

Anyway I was told by my gynae consultant (in the UK) when receiving my diagnosis that if my menopausal symptoms were difficult to cope with then I could take HRT. It is, they told me, a case of weighing up my risks (awful menopausal symptoms versus the risk of ovarian cancer returning).

If you insist on taking HRT then I think you will be allowed to have it but please do bear in mind that if your ovarian cancer is oestrogen receptor positive then you run the risk of 'feeding' any ovarian cancer that may return. This is why gynae consultants are reluctant to allow us to take HRT as it is additional oestrogen in our body that then feeds the ovarian cancer if we have an ovarian cancer that is oestrogen receptor positive.

Perhaps your ovarian cancer is not oestrogen receptor positive?

I should add I do read what Dr Louise Newson says but there are so many different types of ovarian cancer and some are oestrogen receptor positive and others aren't. It really is a case of drilling down into your own circumstances.

However, what I have found more beneficial for my situation is the numerous free scientific research articles that are free to read.

I follow many gynae doctors on Twitter and keep up to date with the latest research which they share and there is a wealth of up to date information available.

Hope things improve for you.

[RestlessCreature in reply to SarahBa]

Thanks for the info. I haven't been told if mine is oestrogen receptor positive or not, I will have to ask. I'm not familiar with Dr Louise Newson, what does she say about it?

[Jayniiee]

Hi restless.. I'm sorry to hear what you're going through. I had a radical hysterectomy years ago which induced menopause and was on hrt gel until last year when I had to start chemo for primary peritoneal cancer. My oncologist told me to stop with the hrt because with chemo it increases the risk of having a stroke. He did say however it was my choice if I wanted to continue with it if the symptoms of menopause were too bad i could. Thankfully id been on it since 2015 and after coming off it my symptoms were not bad at all. If your induced menopause is a recent thing though, would a naturopath be able to help? Or maybe your gp might be able to give other meds that would help. Antidepressants can help with menopause symptoms I believe. I would definitely tell your oncologist though and get his advice. I hope you manage to get it all sorted and good luck with your chemo xx

[RestlessCreature in reply to Jayniiee]

Thank you. I had a blood clot in my lung found on my ct scan so there was a huge hoo-hah in the first place as to whether I could have HRT, but the conclusion was the patches were safe. I was so relieved as early menopause was a huge worry for me, now it's all in question again. I'm so confused by everything as I'm reading lots of stuff saying there's no evidence HRT negatively impacts survival and even one large study where the women on HRT lived longer, but it seems to be entirely hit and miss what people's doctors actually say about it.

[Jayniiee in reply to RestlessCreature]

Can i ask how long you've been on it? If it's been quite a while, it might be that you've come through the other side of menopause while you've been on it anyway.. I was absolutely dreading coming off. I didn't want to go back t9 not being able to sleep the awful hot flushes. I was pleasantly surprised to find coming off it has not affected my sleep at all and have only one hot flush a day or some days none at all x

[RestlessCreature in reply to Jayniiee]

I've only been on it a couple of months unfortunately, just after surgery - it's all been hitting me at once, surgery, menopause, diagnosis, now chemo. I was such a mess after surgery they put me on HRT straight away rather than waiting for diagnosis which I think they'd usually do. I think I just need to have an honest conversation with them about risk v benefit. I tried leaving my patch off yesterday just to see if maybe it wasn't as bad as initially, but didn't have a good night.

[Jayniiee in reply to RestlessCreature]

Ahh i see! In that case then I'd definitely speak to your gp about them giving you something else.. I know there are other things they can give you.... My oncologist said i could take nytol and nytol definitely works to stop the steroids keeping you up all night after chemo but do speak to your team xx good luck with it all, it's not a lot to process but you will get there xx

[RestlessCreature in reply to Jayniiee]

Thank you so much x

[Jayniiee in reply to RestlessCreature]

It's a LOT to process i meant to say, excuse my typo! x

[Notage in reply to RestlessCreature]

That's what I've read too. I can't find any negative research just that HRT could have positive benefits for longer survival (it doesnt break the ovarian cancer down to high and low grade). Obviously if someone is on a hormone blocker it wouldn't then make sense to take a hormone. Even if ER the research didn't seem to preclude HRT it just said it's a complex picture overall. If there is evidence contrary I'd be glad to read it. Given some cancers are quite life limiting Quality of Life (QofL) is also a priority. The medical community can be quite risk adverse (even if there is no contrary evidence). Saying someone can't have HRT because in a few years there's a tiny risk from it when some people don't have a few years is not prioritising women's QofL. Some women are going through additional misery when it could be avoided. Give women a choice. Women ask for the written research if you are being declined.We need to make our own choice as well based on the evidence\high quality information.x

[OvacomeSupport Partner My Ovacome Team]

Hi there RestlessCreature

Thank you for your post. I’m really sorry to hear that you’ve been feeling terrified at the prospect of HRT being stopped due to your recent diagnosis. I can see you’ve had lots of supportive responses from the forum community, so just wanted to to share these resources with you which I hope may be helpful:

- Our information booklet about surgical menopause can be found here: ovacome.org.uk/surgical-men... - This explains

‘The decision to start hormone replacement therapy after treatment for ovarian cancer can be difficult. Many research studies refer to the use of HRT after the natural menopause, rather than after treatment-induced menopause.

Research has shown that using oestrogen-only or combined HRT increases the risk of ovarian cancer for those who have not had ovarian cancer before. A 2015 study found for every 1000 women taking HRT for five years there will be one extra case of ovarian cancer.

Stopping HRT reduces this risk over time. Few studies deal with the effect of HRT on ovarian cancer recurrence, but no overall increased risk of recurrence has been reported. There are conflicting views amongst healthcare professionals about whether those who have had ovarian cancer should have HRT so you will need to discuss this, weighing up the risks and benefits, with your oncologist.’

- ovacome.org.uk/menopause - This page on our website links to a webinar hosted by Ovacome in June 2020 with Dr Louise Newson, a GP and menopause specialist about managing menopause which may be of interest to you. We also ran another talk with Kathy Abernathy, a menopause specialist nurse, titled ‘managing menopause without HRT’. During this talk, Kathy discussed a range of approaches to help manage various symptoms and gave information about lifestyle triggers as well as supplements, psychological therapies, acupuncture, and medical methods that have been used to address these. This webinar wasn’t recorded but please let us know if you would like us to send you a transcript of the webinar instead.

- The Menopause Exchange is an organisation supporting people going through menopause, offering a range of information and guidance. More details can be found on their website here: menopause-exchange.co.uk/

- The Daisy Network is a charity for those with going through early menopause. Their website can be accessed here: daisynetwork.org/

I hope that this information is useful in preparing for a conversation with your clinical team. They will be best placed to advise you about HRT in relation to your own individual circumstances and medical history, and will be able to explain whether this is safe and appropriate for you. Your oncologist or GP may also be able to refer you to a clinician specialising in the menopause for additional guidance.

In addition, I wanted to let you know about Ovacome’s rarer cancers support group, for anyone diagnosed with an ovarian cancer that is not high grade serous. These group sessions offer a supportive environment to speak with others who may be in similar circumstances, raise queries and share advice. We meet online on the second Thursday of every month, with our next session taking place on 12 May between 2-3:30pm. For more information and registration details, please visit: ovacome.org.uk/event/rarer-.... You would be really welcome to join us.

Please don’t hesitate to get in touch with us if you have further questions or would like to talk anything through. You can reply to us directly through this forum, email us via [e-mail] or call our support line on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm, to discuss queries, provide information, or just have a friendly chat.

Best wishes

Annie – Ovacome support