BRCA1 gene- When to have ovaries removed?

Hi anon1,
I had my ovaries removed on the 1st of sept. All went well physically, but for about the last 2 weeks I have been sooooooo tearful, at the drop of a hat its really out of character for me. Sometimes I just cant stop.I dont regret having the op but I wasnt at all prepared to feel like this, or at least not so soon. I’ve had the odd horrible headache too. Even after 1 glass of wine it gives me a headache. Hot flushes getting steadily worse but managable. I feel about 87 not 37. Just wondered if you wouldnt mind sharing how you felt emotionally afterwards. I’m meant to be going back to work on Monday, not sure if I am ready.
Thanks Ruth

hi ruth, emotionally i was and am on certain days an emotional wreck i am the exact same as u regardin crying i do it constantly even sitting on buses or in the supermarket. i some days get 2/3 headaches a day and im sorry to say the flushes may get worse i noticed mine got worse about week 4 and are the same now i can flush for britain…what bothers me is when told about gene i believe i was coping with thought of breast and ovary removal well. i did cope great but this menopause thing has thrown me . i too say i feel about 90 not 32. please dont rush back to work too soon i know everyones situation reg work is different but ur health comes 1st… ruth u will have some s##t days i do. where u cant get rid of depressed feeling and i think too why me? what is also difficult is ur monthly cycle as i get the same symptons sore breasts, bloating, sore back very irratated but no bleeding as body still prepares for period. i know others reading my thread may think im moaning but im going through this and im not going to say all is great when its not its hard as im helping other people understand how they are feeling is normal. no matter what i wont regret it as i wont get cancer but remember u r not alone and if u need to have a moan then moan im here if u want to ask more questions or just want to talk p.s u can send me private messages too as im not always on this site… look after yourself xxxx

Hi All
I have been following this thread with interest.

I have had preventative double mastectomies this year and I was due to have ovaries out also, when I was fully recovered. In the meantime I have been put on the ovarian cancer screening trial.

All your comments have helped me decide NOT to go ahead with my ovary removal after all. I havn’t spoken to my specialist yet, but I plan to stay on the trial (blood tests and scans) until I approach the menopause naturally. I am 40 now and my family is complete.

I opted for breast surgery first because I thought I was getting the worst over with, it seems that the aftermath of oopherectomy is far greater. I cannot afford to be feeling as debilitated as you describe, with being a single parent of 2, have 2 jobs, 2 dogs and a horse to care for.

Thank you for your honest descriptions of symptoms etc. It has helped me lots.

Jackie x

Hello all
I have just been reading your thread (not been on the site for a while).
If it helps I will tell you my story -
I have BRCA2, am 40 years old, and am no good at waiting for test results each year, so decided to have all the surgery I could. After seeing my sister die of cancer at 42, I realised that cancer is what I fear most. So last November I had a prophylactic double mastectomy, immediate reconstruct AND keyhole oopherectomy all in one operation.
The surgery was fine, far better than I had feared, and because of my upper body surgery I barely noticed the oopherectomy - though I think going through the menopause at the same time as recovering from the mastecomies has lengthend the recovery period overall (in terms of energy levels etc), as hormones play such an important role in healing, skin condition etc.
However, the menopausal symptoms did come as a shock. I didnt have emotional swings at all, my issues seemed mostly physical, with the nightsweats being the worst, due to interrupted sleep - waking up drenched 3-4 times a night, then waking up cold again half an hour later! I was also worried about my bones, so in the short term took AdCal3 (I think its called!) a calcium and Vit D supplement on prescription from my GP.
After 3 months I decided I couldnt function properly, my quality of life was suffering and my ability to work full-time was impaired, so I asked my GP to investigate HRT for me. She contacted the Gynea consultant, who recommended LIVIAL - a one-a-day combined HRT - it is steroid-based and seen as less risky for genetic people as it only mimics hormones and doesnt contain them. Within a week my symptoms had disappeared. I have no periods and no pre-menstrual symptoms. Side affects can include increased facial hair (i have a bit more, but no more than other women my age!), spots (havent had any of these), and increased libido (yes, its quite amazing - though my husband is a bit more tired than normal!). I can only be on it about 5 years (in line with other HRT recommendations).
ITs a minefield, and I have received conflicting stories and advice from professional and friends. A friend is having the same op as me in December, and she has had more input from her gynae than me, with bone scans and stuff. I think you have to make your decisions based on what you can find out, and then be flexible if you find out new stuff. There is probably no “best” way to handle it as people as all different.
Good luck with your decisions.

hi jane im glad its worked out well for u it does come down to each individual also tolerance levels etc. i find medical people arent me arent so amazing im sorry to say…im going to ask about adcal3 as im sufferin. even a godd nights sleep would be amazing… lainey


Thanks for your post. Wow! to have all that done in one operation. What type of recon did you have?

I am finding this so difficult to know what to do for the best. I just dread wishing I hadn’t done whatever I decide to do. If I do go ahead I may be feeling so awful I wish I hadn’t, but if I dont, there is always that lingering fear everytime a scan is done, I have already been re-called for an abnormal scan. The pattern of cancers in my family tree seem to be breast, ovarian and leukemia (in that order), but genetics could not find the faulty gene.

I have been told I can have HRT until I am 50 (10 years) but is this just defeating the object. At least when deciding whether to have the mastectomies it was based on the recovery and the cosmetic result afterwards… That was a doddle compared to THIS.

I am grateful to be making this decision now rather than facing a diagnosis, so I feel guilty to be making such a fuss about this. I currently get PMT symptoms and I think it depends where I am currently in my cycle as to how I feel about all this. lol.

Thanks again for your experience.

hi jackie its because its such a big decision and not to be taken lightly either way. i dont think your making a fuss i think your being sensible doing as much research as poss to help u do whats right in the end. although im suffering my aunt had same operation 4 weeks or so before me and is fine she is 44yrs old and has had no problems at all. so again its dependant on the person. i forgot to say though have u saw the article in the newspapers and on tv stating hrt MAY reduce risk of BC by 42% in brca carriers. i find this so positive and after my mastectomy i will take hrt irrespective of this new research as it can give a better quality of life. its because its such a minefield its difficult to know if we are doing the right thing. but u can only do whats best for u and as i say we are all different and we all respond in different ways xx lainey

I had expanding implants - and very little problem with them.
It is not making a fuss - it is a massive decision that will alter your life, and cannot be undone after surgery.
If you are very worried about your decision, then it sounds as if you might need to have a bit more counselling. AND I would ask your geneticist/surgeons to give you a full breakdown of the likely risk percentages that you might face (even if they dont know what gene you might have), AND what they know about the percentage reductions in risk that each op may produce, and the relevant increases that things like HRT may produce. surgery lowers it, HRT increases it, but not by anywhere near as much as before surgery etc. This may help you make your mind up and stick with your decision.
I know what you mean about fearing that you may regret what you have done - but dont underestimate the balancing relief of having removed a lot of your cancer risk. Each time I feel a bit down about “niggles” with my finished results I am reminded of two things that have been said to me. A) my breastcare nurse “if you make a decision not to have the preventitive surgery, project yourself 10 years into the future and imagine us telling you that you have cancer and there is no treatment we can offer you - will you still feel you made the right decision, if so then dont have the op”, and B) my husband when I complained of discomfort under one armpit “well its better than being dead” (very blunt, but true, I suspect my deceased sister would agree with him.
NOne of this is easy, but I have not yet regretted any of it - and would do it again tomorrow.
Ask if you have any other questions.
Jane x

Jane and lainey

You have remminded me of that huge feeling of relief after waking up after my breast surgery. I actually feel quite proud of myself for going through with that!

This has taken me by suprise a bit, I had focussed so much attention on breast surgery I guess this had all been put to the back of my mind.

Lainey I hope your symptoms settle very soon, if I remember rightly you are quite a bit younger than me. Jane, you are right I need to ask more questions at my next appointment and I will make a list of yours.

Thank you.
Jackie. x

Hi All,
Thanks for all your experiences, but I still don’t feel any better. My husband and the consultants letter to my genetesist all state that its MY choice to have my ovaries removed, but, although they are right in a sense- what choice did I really have? To be told i am a 75% risk of ovarian cancer which will reduce to under 2% if my ovaries are removed is a no brainer and No choice at all as far as I am concerned. I have a 6 and 8 year old and need to be around for them.
I had breast cancer at 34 for goodness sake- can I really risk it???
I am now shi*t scared at what a premature menopause will do to me mentally and how it will realistically affect me. My gynacologist made it sound so easy “yes, we’ll fit a coil and you can have HRT (I’m triple negative) so it won’t affect your life at all” Now I’m really not so sure.
Other people have told me “well, you’ve had both breasts off and coped- this will be a doddle” However, from my view, my double mastectomy WAS a doddle cos my surgeon done such a fantastic job and I had immediate reconstruction, so to me, I have never actually LOST my breasts- they have always been there (albeit implants now)
Am just really really scared about all of this and wish I knew now how it would be after (if you know what I mean)

You describe exactly how I feel, but I was unable to put it into words as well as you have.

It is like you are making a really hard choice…but you have no choices to choose from!!! and then you have to live with the consequences. Friends etc keep saying what a minor operation it is…no help at all.

Jackie x

hi katy i felt that too, its like i said earlier those people which say things really dont matter though its whats best for u. but its so true what jane’s husband said that its better than being dead. the way i saw it was that the menopause can on some days be difficult but then there is medication to help with that the menopause cant kill me and leave my little ones without a mum cancer can and screening etc FOR ME didnt give reassurance as i was always watching their faces to see if they look worried or wondering why on earth they are speaking to me when they should be concerntrating its the same attitude i have with the mastectomy i cant bear the screening every 6months and sitting worrying waiting on results but again everyone is different. it will always come down to that and i feel there is no right or wrong answer as just because i have had ovaries removed i cant think another lady is wrong deciding to keep hers. we all have to look after ourselves… lainey xxxxxxx

Just to let you know- the UKFOCCS trial was the one I was offered and after I told the gynae I wanted my ovaries out- he really slated this trial telling me that statistically it wouldnt pick up any more cancers that they would expect in a population of that size anyway. He also told me that if you get Ovarian Cancer grade 1 you have a 70% chance of survival and that as soon as it goes to grade 2 your survival rate drops to 20-30%…
Have you definitely decided that you are not gonna go ahead- or are you still on the fence?
As much as I keep reading negative stuff about it, I WILL be going ahead- not happy though at all!

God Im scared now, didnt thing about all the menosopal symptons and how they would effect me. Have just finihsed chemo, started rads and already agreed to having ovaries out, have been so based ont eh fact cant have kids (35, widowed) and going through another op didnt think of the conseuqesnces that much and now really scared as said will hopefully get a date soon after rads finish, also said I cant take HRT cos my cancer is highly hormonse sensitive. I took this decision as I want to do everything I can to prevent this, still awaiting genetic results but with 12 people on one side and 3 on other with cancer, think its likely I have the BRCA gene, and with my mam in law and grandma dying young of ovarian cancer said yes


Hello Katy

I think deep down I know that I should go ahead and have them removed but I have read so much horrible stuff about the symptoms, I couldnt actively put myself through that. I am a single parent with 2 jobs and I have been told I cannot take anymore time off sick without having my pay halved. I have a partner who is very supportive but we do not live together. I wont even have a few drinks anymore because I cant stand having a hangover and not feeling well for half a day.

I get some reassurance from the UKFOCCS programme and that will do for now, maybe I will think differently in a year or so. I feel guilty when I think of my relatives who have died of ovarian cancer and how they would have jumped at the chance of having preventative surgery. I wish I could be like you and still determined to go ahead and I wish you all the best and minimal symptoms.

Jackie x

Its rubbish being a BRCA person - I felt like I didnt have any choice except to have surgery because cancer scared me so much. But then I look on the bright side and think that at least I know about it and have some options as to what I do about it, and can be monitored very closely.

It is unfortunate that your workplace isnt being supportive as to time off sick, and I hope that isnt swaying your decision not to have surgery. However, that is the important thing - It is YOUR decision. If you dont have surgery now it isnt the last chance you have, like you say you may feel different in time, but if now isnt the right time for you to face the menopause, then you have made the right decision for you. We all live with risk factors, and you have decided what yours are going to be… for now. Surgery isnt for everyone, so dont beat yourself up about it. Live your life, and put it to the back of your mind as much as you can.
Try not to be scared. As lainey says the menopause cant kill you. similarly to Jackie, you decide what you can live with - risk of cancer, or menopausal symptoms that might be eased with alternative therapies - and then make the best of it. If you have a good GP or gynae consultant, you could talk the menopause through with them and get their support for helping you deal with symptoms afterwards.

Best wishes

hi jane u are spot on brca is shit, i feel blessed thinking if through some faulty gene i was going to get it and i can do something to perhaps stop it great. but i dont think its a blessing having to go through surgery etc and all that follows… but we are all different and will do what we are comfortable with or need to do lainey xx

Hi everyone- Luan back here again- I posted the inital posting,

Just giving everyone an update- I went for bone scan on Thurs am which showed bones of a 35 year old and def will have to take HRT straight after hysterectomy if I go ahead.

Then saw my gynae in the afternoon who had had a total turnaround from the last time I saw her. My CA125 had come back slightly raised at 38 although ultrasound all clear. She asked me if I had given the decision anymore thought and I told her that I thought it best I have the op as had spent the last few weeks chasing these bloods and noone would give me answers until I got a call from the hospital saying gynae wanted to see me sooner that Feb (which is when she initially asked me to go back with a decision)- to then be told by her bloods only 38!! Have spent weeks worrying again as had elevated bloods in Feb this year also. Told her I couldnt be doing with the worry of it all the time and have 1 year old son I dont want to leave behind. This time she completely agreed with me and said I think it is for the best and asked for op in Jan. She is going to take everything via keyhole- she said quicker recovery and less pain.

Has anyone got any theories as to why all of a sudden she is agreeing with me rather than trying to put me off as she did on last app???

Has anyone else had full hysterectomy via keyhole?



Not had full hysterectomy via keyhole, but that was because I decided just have ovaries and fallopians removed, so cant help you i’m afraid.
Not sure about your surgeon’s change of mind either - could just be that they have read something/received new instructions from “above” that removal is the preferred method of dealing with the risk. I have read somewhere recently that many cancer specialists still dont think the screening is as effective as organ removal.
sorry cant help more

p.s to my previous - one of the problems seems to be the lack of consistant information out there. I was told a hysterectomy made no difference to my risk, as opposed to just ovaries and fallopians removed. Surgeons dont seem to be able to agree what is the preferred treatment/screening. It makes it very difficult for us to make decisions doesnt it.
I suppose the main thing is to make your decision to have or not have surgery, or what type of surgery, and what type of follow-up treatment, and then “hope” you have done the right thing. It sounds a bit rubbish that - hoping you have done the right thing - but thats all there is - at least we have choices!!
I was discussing this with my best friend and her husband whilst I was still making decisions about whether to have surgery or not, a long time ago it seems now. And I asked them the question “what if I have the surgery, and then five years down the line they find a cure for the genetic mutation, or find that the surgery doesnt get rid of as much risk as they thought?” My friend’s husband is a scientist, so for him it was all pretty unemotive - “it doesnt matter - you’ll have had 5 years of peace of mind”
I’ve kept that thought with me - I’ve done what I thought right at the time, based on what I and my surgeons knew. I could not have done any more than that.
Best wishes