Hysterectomy / oophorectomy anyone else had recommends??

Hi, I am 42 and had dcis with left mastectomy in 2006 with no follow up treatment, then invasive grade 3 ductal cancer on the right with further mastectomy 12 months ago. Since then I have had 26 weeks of chemo, rads etc etc. My cancer was er+++, that is, strongly er pos and I am now on Tamoxifen as still pre-menopausal. I mentioned the possibility of a hysterectomy to my breast surgeon a couple of months ago, he said without hesitation, that he would refer me to gynae consultant, which he did. She (gynae) said yes have it done but recommended ovary removal too which i agreed with but now my husband is asking about risks versus benefits and I am questioning my decision. My surgeon says there is a link between breast and ovarian cancer, gynae says risk of uterine and ovarian cancer is reduced by 90% (not 100% bizarrely) with removal, but the list of potential problems after ooph are immense, osteoporosis, parkinsonism, loss of libido, heart problems and so on…
Its a tough one to call so what has anyone else in this position done? Thank ladies…

Hi I had an oophorectomy in January last year. I was 42 and had er++ breast cancer, but only had it because I tested positive for the BRCA2 genetic mutation which puts you at high risk of breast and ovarian cancer.
As far as I know there is no link between breast and ovarian cancer without one of the genetic BRCA 1 or 2 mutations. I didn’t have a hysterectomy, although I know some BRCA ladies have.
The oopherectomy has had a drastic effect on my bones and I had a baseline bone density scan in October which showed some thinning of the bones already. I also have vaginal dryness and thinning hair. For a few weeks after the surgery I felt very moody, which passed and my hot flushes went mental but have now calmed down.
The reason why surgery doesn’t eliminate your risk by 100% is that some ovarian cells are left behind.
The surgery was overnight stay and keyhole so recovery was very quick.
Personally I wouldn’t have either surgery if there wasn’t a sound reason for it as both carry risks. I absolutely hate being menopausal at 43 and know that if I’m lucky enough that the BC doesn’t come back then I could have other effects later on in life like early onset dementia and heart problems.

Hi daffodil

I wondered if you might be interested to read one of our publications which covers some of the issues you are facing. Here’s the link to the page where it can be ordered or downloaded:

www2.breastcancercare.org.uk/publications/treatment-side-effects/ovarian-ablation-suppression-bcc27

You are also welcome to give the Helpline a call to discuss this further if you think it would help.

They’re on 0808 800 6000.

I hope you find this useful.

Best wishes

Louise
Facilitator

Im presuming you were referred based on gynae symptoms and not because if your BC?

Having gynae surgery is not the recommended treatment for breast cancer but is considered if you have a famil history of ovarian ca, gynae problems or are a known gene carrier… I had a hyst and oophorectomy in sept 2010 as I’m a brca2 carrier.

Have you had any gene testing? Although you may not have a family history which would put you in the risk category there is a research trial called the genetics of familial breast cancer study (often referred to as the brca 3 trial) which will do genetic testing for brca 1 and 2 in people with bilateral BC as part of the research… Your onc can refer you to clinical genetics to discuss this and it may help yo make your mind up.

There is no documeneted link with breast and uterine cancer so wouldn’t really have been a reason your BC team would refer you… With respect of having your ovaries out the most common type of BC is hormone positive and the majority of people who get that are post menopausal… If it was all purely down to your ovaries post meno women wouldn’t get BC… Other glands of you body contribute to making the same types of hormones but we would never consider removing them.

Your risk of ovarian cancer is reduced by over 95% after getting your ovaries and tubes out. Not sure about uterine cancer as it’s not linked to BC so don’t know much about that side of things.

A hysterectomy with ovarian preservation isn’t of any benefit to your BC risk but might be recommended if you are having gynae probs.

Take care
Lulu x

Hi all, no I wasnt having gynae problems, I mentioned hysterectomy to breast surgeon and he said he thought it was to be recommended, because I was young, at 42 to have had 2 bouts of breast cancer, he thought it likely that a gene mutation was present and though he has referred me to the genetics team he didnt think there was any need to wait. I expected him to say no, or gynae consultant to say not worth proceeding, so when they both said yes, and they wouldnt hang about, I began to panic! Its scheduled for 3 weeks time and though I know 2 ladies who have had it without effect, clearly some people are more affected than others. Ive got 3 young boys and really just want to do whatever I can to improve my chances of survival. Is it the right thing to do though??

Hi
I had the keyhole oophorectomy in September as my bc has spread into the bone (cervical spine). The op was ok and recovery quick. I didn’t have a choice as my quality of life was dulled by extreme back pain and it was clear the tamoxifen hadn’t worked and so letrozole was the next choice and would only work if post menopausal.

My gyneacologist did say that the op would be beneficial with regards to the chances of ovarian cancer.

Since the op I have been having the usual ‘hot flushes’ which are a pain sometimes and have been a bit moody but my husband says ‘nothing’s changed there’. Things haven’t changed much apart from no monthly cramps.

I was first diagnosed when I was 38 with a small lump in left breast and 2 lymph nodes affected.I had chemo and rads.No one in my family has had breast cancer.Last March I was diagnosed again, aged 47 now,with it now in my ovaries peritoneal and bones.I would do any thing I could to prevent a return.I wasn’t given any options apart from 5 years of tamoxifen and then that was it!I know we are all different but I just thought I’d share my experience if it can help at all.x

Having a hysterectomy makes no difference to your risk of breast or ovarian cancer… It’s the ovary and tube removal that is the bit that reduces your risk… So women with a gene change or strong family history of greats and ovarian or just ovarian may opt to have their ovaries out and some may decide o have a hyst at the same time (like me) but a hyst alone won’t change your risk.

As to whether it’s the right thing for you to do it’s really up to you… And nobody can make the decision on your behalf but something’s you may want to consider before going ahead with surgery (you can cancel it any time even 2mins before you o to theatre)… If you decide to have surgery and then have a gene test and no gene change is found how would you feel? If you get symptoms like osteoporosis and vaginal dryness and other menopausal symptoms how would you feel? If you have surgery and then get breast or ovarian cancer how would you feel? If you don’t have surgery and get breast or ovarian cancer how would you feel? Nothing is 100% but you have to make the best choice that u can live with and everybody is different.

In families without a gene mutation ( and if you are the only person with either breast or ov ca then you wouldn’t be at a significantly increased risk of carrying a gene change) where there is no previous ovarian cancer then the risk for ovarian is much lower… Even in families with a gene mutation but no ovarian CAs the risk is lower, but still higher than the general population.

In families with a family history of ovarian cancer but no gene change identified then some people will still choose to have a BSO (bilateral salpingo oophorectomy which means removal of the tubes and ovaries on both sides).

The risk of ovarian cancer is low in women under 50 but the biggest benefit comes from removing the ovaries during the premenopausal period… Not sure why that is though… So they normally say after completion of your family or around age 40… I was 42 when I had my hyst.

Don’t feel pressurised into doing it too soon if your not confident ints the right decision… You can ask to go to the back of the waiting list if you like too without having to be re referred.

Sounds like you have had some muddling advice… But basically uterine cancer has nothing to do with BC however if your on tamox then it can increase the risk of womb cancer in later years ( from around 18 in 100,000 to 36 in 100,000) so still pretty low chance… The risk from ovarian cancer in a gene carrier is between around 20-60 in 100 depending on the mutation.

Even without a family history of BC or OC although you would be moderate risk and not high risk there is stil a chance you could be a gene carrier… I got the gene from my dad and found out out after I had BC twice age 37 and 40 (now got it again at 43) but we have no history of any breast cancers on his side of the family going back 4 generations… So although rare it can happen.

Take care

Lulu x