Risk reducing BSO in BRCA 1

Hi - I had surgery a week ago. Would you like to ask specific questions or did you want me to tell you about my experience? 

I’m happy to do either or both 

Your experience please pre and post- surgery

Hi - I found out last summer that I was BRCA2 positive and by November I had met with a surgeon who talked me through the options for a risk-reducing BSO. I had the operation literally two months later so I cannot fault his advice to stay on the "pathway" and get the op done. I chose Vnotes so I can't offer any advice about a laparascopic method. I was told that I wouldn't get offered Vnotes at many other hospitals and since it can bring a quicker recovery time, less pain, it seemed the best and most obvious choice. I went in for surgery and was first on the list - I was in recovery by about mid-morning and back on the ward an hour later. They gave me pain relief in recovery but it wasn't too bad and after a few hours on the ward where I was able to have something to eat and drink and mobilise, they allowed me to go home. I had a bit of shoulder pain from where they inflated my stomach - they also inserted a needle in my belly button to release the gas which was a bit sore - but the pain level has generally been quite low. The worse bit was taking antibiotics for a week which gave me an upset stomach. I was definitely walking around quite slowly last week but this week I can feel my fitness gradually returning. Overall, despite my initial nerves about the operation, it all went really well and I put that down largely to having chosen Vnotes. I don't think it would be everyone's choice but personally I didn't want to have any incisions in my stomach. Feel free to ask me anything else

Hi Molly24,

I would likely undergo robotic laprascopic surgery. Is 2 weeks enough for recovery? Did you go on low dose HRT after this op?

Many Thanks,

Losh.

Hi - I guess we are all different but I would say that after 2 weeks you should be pretty much back to normal - as long as you don't over do it! I made sure I was in pretty good shape before the operation - increased exercise, lost some weight, cut out alcohol which I hoped helped with my recovery. They tell you post op not to do too much but at the same time they tell you to mobilise so it's hard to get the right balance!

As for HRT - I have been on/off with this for some months now as I didn't feel the benefits at times so I stopped taking it. When I went for the operation I hadn't been on HRT for a few months and I've just restarted it as my symptoms (hot flushes, insomnia) have not been great. It's worth getting advice about HRT before you go for the op and perhaps even having the medication ready to go when you want to start taking it. 

On another note, don't forget the pre-paid certificate you can get from the NHS for your medication - you pay one yearly charge and that's it but you do need to check your prescribed medication is on the list - here's the link 

Hope that's helpful

Hello, I have recently been told I have BRCA 2, I have been offered this option too, I am 35years old and so worried to have my ovaries removed and do not want to go through the menopause yet. I have decided to have my fallopian tubes removed. What are your thoughts on this. Stacey

Hi Stacey - that's a difficult decision to make isn't it? It was different for me - I'm 51 and have been experiencing menopausal symptoms for a couple of years now. As for testing, I made a conscious choice not to have genetic testing when I was younger. My mum had breast cancer twice when I was a child and her sister died very young from it so I guess I opted for early breast screening rather than genetic testing to avoid finding out what I already knew could be the case i.e. that I would test positive. I think for me personally this was the right decision as BRCA2 was not in my mind when I got pregnant with my first child and again a few years later with my second child. So when it came to choosing to have the BSO this year I didn't really have a reason not to do it - no one chooses to have surgery if they don't need it immediately but the BSO is definitely a good option in terms of removing the worry about ovarian cancer. As for you, having your tubes removed could be an option for now. I don't think anyone would recommend having to go through a surgical menopause. But we are all different and my mum didn't have a great time during her menopause and neither have I. Have you asked your mum about her menopause experience? Was it good or bad? Had I had the BSO soon after having my last child I would have had to juggle looking after small children and dealing with the menopause symptoms. It's not been great the last couple of years but at least my kids are older which makes it a bit more bearable. So I think you should talk this over with your GP/friends/family before making a decision. Don't rush into it. :)

Hiya, sorry to hear about your mum hope she is ok now. This is all so new to me my mum was diagnosed with stage 4 ovarian cancer last year and is still ongoing she had  a 11 hour surgery and been through so much, my nan also passed away from ovarian too 17 years ago but we did not know about BRCA2 then, we only found out from my mums cancer. Me and my sister have both tested positive for it. I have had two children and do not plan to have anymore and 35years old. I have thought about it and really do not want to go through menopause right now on top of everything else would be a struggle. All the women in my family have really had a terrible menopause.I have been referred to have my breasts removed and reconstruction, I just want to give myself the best chances to protect myself and my family. Thank you for your reply I hope you are managing ok. X

Hi Stacey - I'm really sorry to hear about your mum - sending her all my good wishes. It sounds like you have already made your mind up - and I think it's the right choice for you now at your stage of life. Please keep in touch about your referral for mastectomy/reconstruction if that's ok? I'm not considering that at the moment (can't even think about it). I'm having my first MRI soon as they have upgraded me to very high risk screening and that is making me nervous. I think you are making all the right choices for yourself and your family x

Hello, yes I have made my mind up I’m terrified to ever get such a horrible disease and worry about my children. Yes will keep you posted regarding my surgeries. I have had my MRI 3 weeks ago and all come back clear, I understand as I was very nervous too, the staff were lovely and made me feel comfortable and it will be over quickly just try and think positive things. Keep me posted x