After being diagnosed BRCA1 positive last year, I had an oophorectomy in Feb and was put on Tibolone(Livial) - I feel really rubbish on it. Now have bad spots, facial hair and worryingly started to lose a lot of hair. Has anyone else used this drug? I’ve been told it’s the best for someone with my gene. Has anyone else had oophorectomy and decided angainst HRT? I am 39 and face 5 to 10 years on it and it really is upsetting me ( bad enough worry about BC all the time!)
I would really welcome some feedback Please.
Hi Bridget
I too have brca 1 and had my oophorectomy 2 yrs ago I was 40 at time .Im oestragen neg so was ok for hrt. I have been on Tibolone for about 1 yr . I was on prempac C for 1st year and found I had terrible mood swings to the point I could have done some serious damage! and almost constant thrush. I went to see a Ms Bridges at chelsea and westminster hosp (referred by my genetic team) she specialises in hrt for women with breast cancer. She recommended Tibolone .Have had bad spots but have managed to get my skin under control with trying different skincare regimes .(Rene Guinot has worked for me can only get from beauty salons ,is a bit dear but def worth it!) Have had a little facial hair but no more than my friends of same age who are not on hrt.
Compared to how bad I felt on the other hrt I can cope with these side effects.
May be see your GP or speak to your genetics team to refer you to someone who deals with brca ladies maybe a different one would suit you better.
good luck!
Hi
I am also 40 and due to have oophorectomy after my next preventative mastectomy (not BRCA1 but strong FH). I obviously need to do some reading up on HRT beforehand. I am a nurse but have no experience in this field. Your side effects sound awful and I hope you get an alternative prescribed to you soon. In this day and age there is usually no need to put up with severe side effects.
Do you plan to have mastectomies also?
Best wishes.
Jackie x
Hi All,
I was diagnosed BRCA1 two and a half years ago, had a hysterectomy 18 months ago. I am not on HRT and have not had any other drugs mentioned to me so am experiencing the full blown hot flushes, disturbed sleep etc. When I was in hospital every time the HRT nurse was mentioned they couldn’t find anyone to talk to me so I have just been getting on with things. Sorry it’s not much help with your query, but listening to your side effects I think I’ll stick with the hot flushes!!!
I have a tentative date of 4 August for a double mastectomy and reconstruction. Are you planning on having them too??
Take care.
Cathy
Hi Cathy
Do you mind me asking how old you are? Have you thought of asking your GP to consider prescribing HRT? When I spoke to the nurse who has started me on the Familial Ovarian Cancer Screening Study (FOCCS) she briefly disscussed HRT with me and said side effects are rare.
Good luck with your forthcomming op. I am due to have my second preventative mast & recon in 2 weeks time, then having ovaries removed later.
Jackie.
Hi Jackie,
I’m 38. The only thing that has been said to me about HRT is that it can increase the risk of bc, so I thought if I started taking it, it defeated the object of having the hysterectomy. Am getting used to the flushes now!!!
Good luck with your op.
Cathy