Oophorectomy Advice

Hi
I am booked in to have this operation on Monday but am no longer sure whether to go ahead. I have read some information regarding risks associated and dont know whether the benefits outway the risk anymore. I will give you the info I have and would love your input as to whether you would go ahead and even whether the info I have is correct (I know its my decision at the end of the day but any advice would be greatly appreciated).

‘Women younger than 45 who have had their ovaries removed face a mortality risk 1.7 times greater than women who have retained their ovaries.’
‘The most common causes of these excess deaths were neurological conditions, hormone-dependent cancers, cardiovascular disease and stroke.’
‘The findings suggest that younger women who have surgically induced menopause should consider low-dose hormone therapy until age 45 or 50.’

I am 38.
Genetics have said I ‘probably’ have faulty gene, even if they can’t find it.
Triple neg tumour

Now, do I cancel the operation, go ahead anyway but take HRT, or just go ahead anyway without HRT and hope for the best.

My decision making skills are really shot anyway without making a decision this big so any help would be great.

Thanks
Karen

Hi Karen, this is a permanent op that can’t be reversed so if you are not sure then I think you should wait. The thing is we go through so much and can get so much information thrown inour direction that the mind goes round and round in circles and making a decision is really hard.Don’t Know what to suggest?!?

I had my ovaries out 3 years ago and touch wood had no major side effects except bad headaches for a few weeks. Have you thought of trying Zoladex first for 6 months? That puts you in a chemical menopause and you can see how it goes before making a permanenet decision.

I think that the main problem of early menopause is brittle bones, but I take a tablet once a week to build mine up and have loads of calcium (my excuse for whole tubs of Ben and Jerry’s in one go!!!)

I did hear that we are more likely to get dementia when we hit 80, but my attitude is I live for today and if I get to 80 then great, will worry about that then!!!

Karen it is a very personal decision so take your time if you need it.

Take care

S x x x

Hi Karen i am hoping to have my ovaries out before the end of the year, i am 45, i don’t have a genetic cancer, my Mum and Gran went through the menopause very late, so this is an option that i have gone for as i do not want to go through the menopause twice, i am hormone receptive so i can’t have hrt anyway, so having my ovaries out should help prevent any more breast cancer i hope. have you rang your bc nurse or onc to discuss your fears with them? or the helpline on here is very good

Alisonxxxxx

Hi Karen
Many sympathies. I am 45 and will face the same decision as you in a few months…I am finding the research really difficult to understand. My onc says the picture is not clear. But one thing I wonder reading the quote in your post is that those survival statistics are just general statistics, right? So, its a general picture of the state of play for woman who have their ovaries removed and cancer is one of things that might be a problem. So its women who might have a number of health problems. If that is the case, I wouldn’t necessarily pay too much attention to those findings specifically - its too general. Does that make any sense? Can you have another discussion with your onc? Have they given you clear advice?
All the best
Jo
x

hi karen,
i am also about to have mine out! i have tried zoladex for 7 or 8 months and found it ok.( found the monthly better that the 3 monthly)
however over the last 2 month have experienced periods hence the next step being removal.
i too am extremely concerned by the cardiovascular risk, and the bone risk but feel it must come seconnd to the cancer risk.
does anyone know what the neuro risks assoc. with oopherectomy are?

markie.

Karen

Presumably you couldn’t have HRT even with negative tumour?

I had BSO in March and it was a doddle and I was told my ovarian cancer risk would be reduced to 0.01% so far less than the general poluation. It ALSO reduces the risk of another breast cancer. Once the ovaries are gone I’m not sure what your hormone treatment would be as my tunours were Oestrogen positive so that took me off Tamoxifen and put me on Arimidex which is daid to be more effective. Plus Tamoxifen raises womb cancer risk by 10% so that was a plus too.

I’m puzzled that you cannot get more information to help you on this. I had a few sessions with a genetics nurse and also saw an excellent cancer genetics doctor in Oxford who spelled out the risks/statistics.

You can’t reverse this so if you are in severe doubt or uncertainty then cancel, get more advice, get a second opinion for sure, and then reconsider. Is there really any reason to rush? My reasons for rushing were 65% chance of ovarian cancer, 50% chance of contra lateral cancer and the 10% chance of womb cancer but then I knew at that stage I had BC and also BRCA1.

Do some more research and don’t worry, your cancellation will mean someone else doesn’t have to wait so long!

Best wishes
D

Dear D
Sounds like you got really useful advice. Can I ask where you are being treated?
Best
Jo

Hi Karen

It is difficult to take such a big decision and weigh up all the conflicting evidence. I think it might be a really good idea in your situation to give our helpline a ring. They are on 0808 800 6000 and open Monday - Friday, 9am - 5pm
Saturday, 9am - 2pm

Our helpline is a free and confidential service. It is run by specially trained nurses, we can help you make informed choices about what you should do.

As you say you have to make the decision in the end, but talking it through with an expert might help to clarify your thoughts.

Best of luck whatever your final decision and I hope you are finding the support on the forums some help.

Sam

Moderator

Breast Cancer Care

Hello

Wait on i had this done at 29 because i was told the hormone dependant cancer was being fed from the hormones that come from the ovaries??? And I have the BRAC2 gene so my chances of Ovarian cancer were high…completley confused can someone please clear up for me cause this is just one extra worry i just dont need at the moment! I wasnt informed of these risks and im sick of tryin to get info online because is soooooo conflicting and different.

Sorry to sound cross but im seriously losing my rag with the whole thing!

lynnc

Hi everyone
Just wanted to say a big thanks to all of you for your comments, they have been really useful. I have spoken to various people and have decided to go ahead and have the op and worry about the rest of it if and when I need to. My main priority is to see my two girls grow up and this is the best way to maximise my chances of that happening.
Thanks again, I don’t know what I would do without this site to keep me sane.
Karen
x

Hi Karen
great to hear that you’ve made the decision - good for you. it does seem that a lot of people have had very good results with this operation. let us know how it goes and here is wishing you all the best with it.
Jo
x

Hi everyone
Well I had the op last Monday as planned and am doing really well. Had the op by keyhole so just three small wounds and was home the next day. The ‘wind’ pains have now gone and I’m just a little sore. However, I was given very little ‘after’ information by the hospital and have a few questions I am sure some of you will be able to help me with.

  • Will I ever have another period
  • How long (approx) before I can drive, lift, carry, etc
  • How long before menopausal symptoms kick in

Thanks
Karen

Hi Karen, glad verything went well last week.It is amazing how they do it through such small holes. I had mine out 3 years ago and didn’t have another period but I suppose it depends on where you were in your cycle. I did have a really small amount of bleeding for a couple of days afterwards though. I do remember being quite sore afterwards for a few days but within 2 weeks was fine and driving again. I think drive when you feel ready. Luckily I didn’t have any hot flushes and still haven’t but just a few headaches that went after two months. No other symtoms really apart from finding hard to keep my weight down now - I just like my food and wine too much though!! I have real peace of mind now they are gone and feel fine in myself.
Take it easy and let people wait on you until you feel fine!!
Take care
Sarah x x x