HRT

Does anyone take HRT after treatment for OC?

I took it for a short while before I was diagnosed.

In fact I was given it for the symptoms of OC before diagnosis!

I’m wondering if it’s safe to take now?

Sarah

[Sunfleury-UK]

Hi Sarah, you will need to discuss it with your consultant as there are a number of variables to consider and yours will be an individual case. For example, some ovca tumours are oestrogen sensitive so in such cases HRT is usually not prescribed. As with most things, it will be a balance between potential risk & potential benefits.... I was diagnosed aged 39 & not in menopause or peri-menopause and following discussions with surgeon and oncologist I was prescribed very low dose oestrogen only HRT which I have taken since.... HRT can for example protect against osteoporosis/ heart issues especially in younger women as well as helping with the side-effects of surgical menopause. For those whom it is contra-indicated there will be other ways of helping in these areas such as through menopause clinic and monitoring (e.g. DEXA scan for bone density).

It's quite complex so the only advice really is to discuss with your team.

Best wishes Sx

[Hidden in reply to Sunfleury-UK]

Thank you for your reply. I have an appointment next month with oncologist so will ask her about it.

It helped massively before diagnosis. Particularly with sleeping. Sarah x

[Hidden]

no it is not safe to take now.

it is not safe to take anything without discussing with your oncologist. your GP will know almost nothing about it so don't even try to go to them.

HRT before and after ovca will be different. your cancer may be ER/PR positive and you may not be allowed any HRT at all.

and you were given it for the wrong reason anyway, why continue?

[Hidden in reply to Hidden]

Thanks for your reply. I was going to see the GP about so will take your advice and wait until I see oncologist.

I was having menopausal symptoms before as well as OC symptoms. HRT helped hugely with hot flushes and sleeping. The two things I’m struggling with now. Sarah x

[Hidden in reply to Hidden]

you can basically forget about your GP unless they work in the same clinic with your surgeon or oncologist (which mine does for example)

yet I only get oncologist to prescribe anything serious for me, not antibiotics and pain killers, of course.

Kate x

[Flamingobeef18 in reply to Hidden]

Can I just stand up for GPs please?

My own GP is brilliant. She specializes in gyne cancers and will thoroughly research all treatment options.

It is a misleading and unhelpful statement to advise someone to "forget" about their GP.

[Hidden in reply to Flamingobeef18]

Good grief what's your problem with me? I clearly said unless gp works in cancer clinic (like mine does )they wont know much about it.

You just repeated my words, twisted them and spat them out. Either read what i say or just keep your useless remarks to yourself.

[Marieloiuse]

Hi Sarah,

I won't repeat the good counsel already given but I'd just like to say that I had HRT for 20 years after my diagnosis (stage 1 mucinous). I never got much info from my Consultant but when I asked if it was risky for me he said my tumour wasn't hormone dependent (I do wonder if he actually knew but hey ho!). Being only 34 at the time I was worried about bone thinking, heart and ageing prematurely. Took it without problems til they wrestled it off me! Had absolutely no withdrawal symptoms (despite wanting some so I could beg for it back!).

Wishing you all the best.

Catherine X

[Sunfleury-UK in reply to Marieloiuse]

Hi Catherine... great to hear you came off if without symptoms! I'm 5 years post op (also stage 1 mucinous) and just turned 46... was wondering how/when it would be decided to stop HRT. Like l, I suspect most of us, I don't like to get too preoccupied with future events. BUT seems rather fortuitous given your post..... can I ask, did Onc or GP do the wrestling?? Sx

[Hidden in reply to Marieloiuse]

Hi Catherine Did they say why you had to stop taking it?

Great that you had no withdrawal.

I’m 3b high grade serous.

X

[Marieloiuse in reply to Hidden]

Hi Sarah,

GP said simply he (!) didn't like people being on it for over 20 years. I think because there is insufficient data for such long term use. I did ask the Nurse Practitioner about it and she said she'd refer me to an Endocronoligist but it that happened! Interestinlgy a couple of friends who've both had their ovaries removed (not coz of cancer , thankfully, and both early 50's) are not going to take it. But I was so young I just couldn't contemplate the idea of physically being an old lady (unless of course it risked my life and I wouldn't have considered it at all).

Hope this helps and life is going well for you.

Catherine X

[Marieloiuse in reply to Marieloiuse]

PS I mean 'never happened'. Never notice the errors til I press send!

[Hidden in reply to Marieloiuse]

Catherine

removal of the ovaries doesn't make you old it only reduces 50% of the estrogen. other half is still produced by fat cells

for bone density there are other medicines and ways of preventing it. Vit D+calcium and many other things that don't add threat of cancer.

plus removal of the ovaries only reduces but doesn't eliminate 100% risk of ovarian cancer...and there's also a breast cancer which is possible and so on.

basically there's no guarantee either way and you just didn't have it explained properly it seems.

I was 36 at diagnosis with stage 4b ovarian and brca positive so HRT for me wasn't an option. 38 now and still not 'old lady' lol

Kx

[Marieloiuse in reply to Hidden]

Thanks K. I appreciate all you said and I can totally agree with avoiding HRT if there was a risk of it hastening a recurrence and of course if you are BRCA +. But back in '88, when I was diagnosed, not only was it well nigh impossible to drag information out of my consultant (he never referred me to an oncologist - that didn't happen til I came to Manchester) but trying to find information by dragging 2 very small boys to the library was difficult as well as not very informative. It seemed to me the easiest option at the time to take the HRT. Nowadays I would be able to much better informed and perhaps make different decisions.

Hope all is going well.

Catherine X

P.S. If you're amazing head of hair is anything to go by you are obviously doing the right thing!

[Hidden in reply to Marieloiuse]

Goodness Catherine I've not realised it was so long ago lol

Yes def see what happened there... a lot has changed and def a lot more info out there and more research happened. Alas not better OS rates still!

Hair is doing better than everything else lol but chuffed i got perfect hair every day now!

Have they tested you now for brca?

Kate x

[Marieloiuse in reply to Hidden]

Hi Kate,

I did ask for the test years ago as I was aware of the connection (an aunt had breast cancer - tho she was the only one of my 6 aunties) but the GP implied it was highly unlikely in my case. Did you know you were BRCA before the OC?

Catherine X

[Hidden in reply to Marieloiuse]

Tell your gp to refresh his knowledge and insist on testing.

I didn'tknow neither had any family history at all. I'm treated privately so it was easier process. NHS needs a lot of persuading at times

Kx

[Sunfleury-UK in reply to Hidden]

Hi K, Catherine & I both had mucinous type ovca which is very very rarely associated with brca... in fact, it's the one type excluded from the new guidelines 're testing... Sx

[Hidden in reply to Sunfleury-UK]

Theres whole bunch of other genes and rare must not be reason for refusing testing otherwise it'd be nonexistent lol

But i know nhs is hard to get through

Kx

[Sunfleury-UK in reply to Hidden]

There are already known and possible potential genetic links with mucinous e.g. kras (different sort of genetic influence & the test is done on the tumour rather than person I think) Am sure in very near future more will be discovered. Definitely always worth asking and signing up for anywider genetic tests beyond brca wherever possible. For non-mucinous types of ovca test for brca should now be approved automatically within nhs regardless of family history. Theres a recent post about this with Ovacome's guidance. Sx

[Marieloiuse in reply to Sunfleury-UK]

Ooh thank you Sarah. As you mention it I think I possibly had read that somewhere! Also you mention the Kras connection which rings another bell. I also read about mucinous and smoking; something I have never done but my mum did whilst pregnant and I was brought up in a smoke haze! Then again so were lots of people. But you do try to find reasons for this awful disease. I am going to go to my GP and see what testing might be available particularly as I have now a 2 year old granddaughter as well as the possible risks to my sons. Hope you are doing well. X

[Sunfleury-UK in reply to Marieloiuse]

I'm good thanks... quite reflective as it's pretty much 5 years to the day I went in for the big op! I did ask my surgeon last year 're the kras but he said as was 5 yrs ago tumour would not have been tested (but would likely be done now) and can't be done this far on. I do try to stay aware of developments and will happily be part of any wider genetic testing in the future. Apparently a few years ago there was a trial which started with mucinous type but was cancelled as not enough participants... X

[Marieloiuse in reply to Sunfleury-UK]

Well done S (sorry I called you Sarah before - not sure that's even your name!) Yes the anniversaries do make you reflective don't they and just so grateful to still be here. And sadly I'm always reminded of the lottery this insidious disease is. I remember at my diagnosis just praying (I'm not religious!) for 10 years til the boys were teenagers (not that my husband wouldn't have coped wonderfully but no one wants their children growing up without a mum). But of course, perversely getting another 10 decreases the chance of recurrence hugely.

Wishing you continued good health. It'll be 30 for me next year. Can't believe it but let's not tempt fate!!!

Catherine X

[Marieloiuse in reply to Hidden]

Ha ha not brave enough but you have got me thinking. Given my age now (63) and that I could potentially have passed an unwelcome gene on to my sons and 2 year old granddaughter I am most definitely going to insist this time. I see from your posts you are going for a mastectomy. I admire your decision and I will absolutely if I am BRCA.

Hope all goes well as possible when you have your surgery (If you've not had it already. X

[Sunfleury-UK in reply to Marieloiuse]

Thanks so much, that's really helpful & do appreciate you sharing your experience. Very best wishes, sxx

[Zena41]

Hi I started taking it last week as my cancer is low grade and feeds off oestrogen consultants advice for treatment x

[Hidden in reply to Zena41]

Thank you. I had made app with GP but will cancel and wait for oncologist app next month. X

[Hidden in reply to Zena41]

Zena

I think you confusing hrt with hormonal blocks....

If cancer feeds on er you'll be taking blocks like letrozole and tamoxifen alike

Hrt is artificial hormones

[Zena41 in reply to Hidden]

Hi I’m on tamoxifen too

[Hidden in reply to Zena41]

Yes it hormonal block which is oposite of hrt. Hrt provides body with artificial hormones whilst block - block production of natural hormones.

[Zena41 in reply to Hidden]

Ahh makes sense! Can u tell I’m new too all this? Whatever they can do too keep me around for my baby girl x

[Hidden in reply to Zena41]

How old is she? Mine was 4, now coming to 7...

Blocks can help. They were too bad for me so i had to stop. Your onc should talk to you more in detail...

Kx

[Cathy90]

As far as I was aware, certain types of ovarian tumour e.g clear cell- it's better not to be on HRT, as they really don't know if this type feeds off hormones.