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Ovaries - to remove or not to remove??

10 REPLIES 10
Zingy
Member

Re: Ovaries - to remove or not to remove??

In case this info is of any help, I have a family history of BC and OC, i was diagnosed with BC in June aged 42 and now awaiting results of genetic testing. It is worth asking about genetic counselling/testing if it hasn't been offered. I was referred to a gynaecologist by the genetic counsellor and they discovered I have an ovarian cyst which will get monitored while I have chemo. My gynae said he will do whatever I want if the genetic tests are negative ie remove the ovaries if that's my wish. My oncoplastic surgeon strongly recommended getting the ovaries and tubes removed even if the genetics are negative. My oncologist also thinks it's a good idea. So once chemo etc is done, I'll be getting a prophylactic mastectomy on my remaining breast and oophrenectomy. I would advise getting as much info and advice from your medical team as possible and then think about how much risk you're prepared to live with. If, like me and some of the others who've replied you want to reduce risks as much as you can, the oophrenectomy might be a good idea but it's a very personal thing.
Ps. They did tell me if I'm BRCA 1 or 2 there's no choice in the matter, the ovaries etc must go.
ohbaby
Member

Re: Ovaries - to remove or not to remove??

Hi
I was diagnosed with trip neg bc in Oct 2009 which was confirmed as BRCA1. I was pregnant at the time and knew that I didn't want any more children after her so had a full hysterectomy in May 2011. They wouldn't touch me until my daugher turned 1 just in case I changed my mind.
I had the option of regular internal ovary scans which are one way of checking the health of your ovaries but wanted to be sure the risk of oc was minimal. I say minimal because even when they're gone you still have a very small chance of getting 'ovarian' cancer as the cells lining your abdomen are the same cell type and it can grow there. It is a very small risk though which is much better than the BRCA risk of 60%!!
All that I can say is that it was the right choice for me even though a year later I'm still trying to settle my HRT! I was allowed HRT because my cancer was hormone negative and because my onc said life without my ovaries at the age of 35 would be unbearable without it. It isn't the hot flushes that cause issues for me, it is the complete loss of vitality - I have no energy and zero 'drive' 😉
I'd say yes speak to your Onc but perhaps also speak to a genetic counsellor before you make a decision. It is a huge decision and you could always have the scans for peace of mind whilst you're deciding.
Faye

erin135
Member

Re: Ovaries - to remove or not to remove??

If you ring your consultants secretary and explain, they should offer you an appointment very soon. You may also want to contact your breast care nurse about the options, and in many hospitals they can arrange the oncology appointment for you. There's no right or wrong, just various choices hormone treatment wise. Of course you have to be very sure before an oophorectomy, but zolodex has the same effect whilst being reversible, so can buy you some time to decide. All of the various hormone teatment options are available on the NHS, whether just tamoxifen, zoladex plus tamoxifen or an aromatase inhibitor or surgery plus an aromatase inhibitor. Like you I'm in my 30's and don't have children, but since my BC is stage 3C, the children decision was quite easy to make. I got a puppy instead!!! No one has made an issue of my age with respect to my choices, but then again I've been clear about my decisions and the reasons for my decision.
Good luck!
Sascha
Member

Re: Ovaries - to remove or not to remove??

I have asked to have mine removed as OC is so hard to detect and ILC is one of the BC types more likely to spread to ovaries.....waiting to hear what the Onc says......but if not I feel so strongly about it I may go private for peace of mind.....

Bird
Member

Re: Ovaries - to remove or not to remove??

Thanks for your comments ladies. It is altogether very confusing! I wanted my ovaries out years ago but my gynaecologist said no cuz I was only 33 - even though I have never wanted kids he still said no!!! I still do not want kids and would very much like to get rid of the pain - and it would be the best contraceptive!!! But there is still that nagging doubt in my mind - would it be right ect..... do I really want more surgery ect..... Like you say best to talk to my onc - not seeing her til next March though. So that gives me time to really think about it I guess. Still gonna have the worry of ovarian cancer though. Arrrrgggghhh!!! damn you cancer and the brain drain you leave behind you!!!!!!!!!!

xx

erin135
Member

Re: Ovaries - to remove or not to remove??

You may want to ask your oncologist about whether they would consider a trial of zoladex first. Many centres offer this prior to an oophorectomy, as the effects are similar but reversible if you find you can't live with the flushes/sweats etc. I've just started zoladex, and have found the flushes to be on a similar level to those I had on chemo. I'm going to make sure I feel OK on it over the next few months before going ahead with an oophorectomy. Both of these treatments increase you risk of osteoporosis, so make sure you've found out about this aspect too.
dib
Member

Re: Ovaries - to remove or not to remove??

hi,
i had mine out last aug but i was 49 at the time,my daughter carries the brca 1 gene and has been advised to have hers removed at about the age of35 because the risk of getting ovarian cancer is as high as 50% but they dont want to do it before 35 because of the side effects,she is 28 now and awaiting a date for double mx with recon.

lisaf
Member

Re: Ovaries - to remove or not to remove??

Hi, I had my ovaries out when I was 36, about 4 months after chemo. I was worried I had the gene after some family histoery (distant though) I made the decision which was supported by my hospital which in the end was the right decision as I had BRCA 1 gene. I had this done by keyhole surgery and came out of hospital the day after the op, I was off work for about 3/4 weeks and it was okay. I was more nervous about the side effects but to be honest wasnt as bad as I thought, yes had the hot flushes and sweats at night but these ease off and I was much happier knowing that I had reduced my risk, the down side was as single making the decision to not have children :-(Good luck with your decision xx

smk
Member

Re: Ovaries - to remove or not to remove??

Hi Bird,
my bc came back in my ovaries.It was tested to see whether it was ovarian or breast and it turned out to be bc.Unfortuantely it is also in other places too.This was after about 8/9 years since first diagnosis at the age of 38.I have no family history of bc or ova c .If you're worried speak to your onc.Good Luck.
xxx

Lulu34
Member

Re: Ovaries - to remove or not to remove??

Hi Bird

As i dont know your history it maybe that you are at an increased risk because of your grandma or maybe not......if its your dads mum then it might be worthwhile being referred to genetics, but if its mums mum and mum is fit and well then its unlikely to be increased risk.

I had my ovaries out at 42 becuase i carry brca 2 gene mutation so have a higher risk of developing OC.

They dont tend to do it unless there is a clinical need but sounds like it maybe in your situation..... Did you have the bleeding checked out? If you havent then it might be worthwhile as you can get endometrial changes and fibroids caused by tamoxifen so they often want to check that in the first instance..... I i bad bleeding on tamox after aout four months and had investigations which just showed thickening but asked to have a mirena inserted which helped a lot. When i was getting my ovaries removed i opted for a full hysterectomy as didnt need my uterus either if didnt have the ovaries.

In terms of side effects i got hot flushes pretty much as soon as the op was over. And achy bones especially in my neck. But pretty much ok otherwise.

Good luck
Bird
Member

Ovaries - to remove or not to remove??

Hello fabulous ladies
I won't go on about my BC history. But I have now been on tamoxifen for about 18 months. During chemo my periods stopped, which for me was a blessing cuz ovulation for me has been horrendously painful for a long time. Anyway I didn't have a period for a very long time. They started again about 6 months ish ago. joy. for the first couple of periods I had no ovulation pain what so ever and I thought, at long last its all gone! However it has now come back three fold. The last ovulation was so painful it was just awful. Anyway I was just wondering if anyone of my age (37) has had their ovaries removed since getting over the BC treatment? Is it a good idea? The reason I ask is cuz I am now very worried about ovarian cancer (which my Grandma had). Am I more susceptible to getting it? has anyone out there gone on to develop ovarian cancer after BC? Lots of things running round my head.
Thanks Gals
xxxxxxx