Can't decide - ovaries out or not?

I am really hoping for some thoughts on my dilemma.

I have been offered a slot for an oophrectomy in March by my gynaecologist who knows my history. He’s neither recommending an oophrectomy or not recommending it - he says it’s my decision and he’s happy to do it if I want it. He is an incredible surgeon and the only one I would trust for this op.

I was diagnosed with ER+ 8/8, PR 8/8+ lobular cancer. This was after having severe endometriosis for 20 years.

My breast surgeon feels that I probably shouldn’t have the surgery as it isn’t necessary. My onc feels the same.
Here are my issues:

  1. I am in chemo induced menopause although my last blood results are heading the wrong way with FSH levels dropping.

  2. I have a small increased risk of ovarian cancer due to long term endometriosis. The overall risk remains low.

  3. I had lobular cancer which is more likely to metastisize in the ovaries than other types of BC.

  4. I’ve had a huge amount of pelvic surgery due to endometriosis so the operation, that would be straightforward on most women, won’t be so with me. This means possibly increased risk of nipping the bowel for example.

  5. I had a lot of surgery in 2009 for BC with a double mx, full axillary clearance. On top of all that I had a lot of problems during treatment and now also have lymphodema and shoulder problems.

I can’t decide whether my body just needs a break and a rest and try to get stronger. Or am I being silly and should go for it?

Any views or thoughts greatly appreciated. I can’t put this to rest and have been mulling over for months…

thanks, Elinda x

sorry im not much help in this respect but did have an open hyst and ooph recently and was very straightforward and a quick recovery… but as for having it mine was based on the fact im brca 2. even though one of my tumours was ER 7/8 it wasnt recommended on this as my prgnosis fro it is excellent anyway.

why not ask your gynae to put you back at the bottom of his waiting list so you have a little ore time to think about it… you need to feel comfortable with your decision and be able to live with it… that includes the possible complications.

i would def say dont rush into something your not certain about.

Lulu xxx

Hi Elinda

I looked into this as an option and has a brilliant consultant who was extremely kind and thorough. I decided against it.

Partly because it was going to be a form of contraception and I broke up with my boyfriend 2 days before the appointment! But even if I was still with him I don’t think I would have done it.

My main reason was that our ovaries produce lots of hormones that take us through our lives, not just oestrogen. If your body goes into melt down (as mine did on Generics brand of tamox), you can’t just put them back in like you can change a brand of drug.

I couldn’t be doing with anymore ops ( I had three in 6 months, along with the full arsenal of chemo & rads). My priority now is being ‘well’. The only surgery I will have in the next few years is that which is essential.

These were my main reasons and I felt my consultant was with me on this. He was also of the opinion that a lot of cancer is caused by weakend immunity and that in the future drugs like tamox will be replaced with immunity based drugs. Another reason to avoid a general anesthetic and operation.

You don’t seem to have a main reason for the surgery, and you have several other factors which make the op risky. To read your email, it seems like you don’t really want to have the op?

Lulu - thank you for your suggestion which is what I may do. I can’t leave the decision and if I don’t want to go ahead somebody else needs the slot so a delay might be best.

Gretchen - I’m fed up with having had so much surgery and treatment. Physically and emotionally I want to recover now. But there’s that back of the mind stuff going on saying you’ve got your chance now, you might regret it if you don’t.

I think I’m also quite afraid of having anything done as all through my BC treatment I had problem after problem - wound reopened, seromas and haematoma, neutropenic sepsis, thromboses in my arm etc.

I think I feel that whatever decision I make will be the wrong one. I’ve lost faith in myself and my body with all this if that makes sense.

You still haven’t really given a good reason to do it, but the list of why not too seems very long! I know we are not supposed to give strong opinion on this forum (lol!), BUT this is only feeding back to you what you have written. You sound like you’ve had a hell of a time, maybe you just need to fully recover so you can listen and trust yourself and your body.

I am sure if you need the op in the future you can be re-referred.

Hi Elinda!

Just wanted to throw my experience into the mix. I had rads to ovaries last Nov. - only 4 sessions and pain and SE free. Now in menopause (I’m 43, so would have been a few years off yet) and going to be starting Letrazole soon. Could this be an option for you to avoid more surgery?

All the best, Sarah.

Mmm, good points Gretchen! I suppose it’s the small increased risk, and the fact that it’s hard to detect. I can’t have scans or blood tests because they are unreliable at the best of times, and not possible with endometriosis (false positives).

I think I’m just terrified of cancer full stop. At the same time I realise I can’t keep having bits of me chopped away just in case. As my gynaecologist said ‘oh hell! I wish I’d removed them in 2009’ when he did all the other major surgery.

Sarah, thank you for posting. Bizarrely I’m more terrified of rads. I absolutely hated going for rads even though physically it wasn’t difficult at all. Also won’t protect against cancer only put me into a definite menopause.

I had this surgery on Friday and it was very straightforward, but only because they could do it as keyhole surgery, which might not be an option for you because of your previous surgery.
I chose to have this because I was diagnosed as BRCA 2 in October last year and have a much higher risk of ovarian cancer. Unlike you my gynae onc strongly recommended this surgery for me.
Personally, I would never have any surgery unless there was a real proven benefit for me. There is also the side effects of removal of the ovaries to remember…higher risk of bone thinning and heart disease. I’m only 42 so even though I was in a chemo induced menopause, this is now permenant and because my BC was er and pr positive, HRT is not recommended for me.

Hiya, another lobular lady, trying to understand the risk of bc turning up in ovaries and on my “good side”. Similarly, after 4 ops last year, can’t bring myself to sign up yet to risk reducing mx, or having ovaries removed. Have, like yourself, been treated for endometriosis. Difficult decisions to make! X

Hi Elinda - I haven’t got any experience to offer but I have been through quite a lot of the thinking process as I have fibroids and ovarian cysts and 7/8 e+, so I thought that maybe oopherect would be good choice for me after bilat mx. Actually I feel much like Gretchen -avoid yet another op if you can, and also ovaries maybe do more for you than you appreciate! I am 51 and still going strong with periods and I’m feeling that after all the battering my body’s had, its kinder to let it go into menopause naturally rather than precipitously. I stopped tamoxifen because my mental health deteriorated rapidly, and I have felt much more balanced without blocking the action of oestrogen, while trying to balance it and boosting my immune system. Just my own opinion - I don’t advocate it! - but sometimes its good to think beyond the BC and think what else your body needs.
Hope this makes sense
Maggyxx

Hi Elinda, I personally would not have a oopherectomy as there are many possible long term side effects such as heart problems, cadiovascular diseases parkinsons and cognitive impairment. I agree with meggy that our ovaries do more than we appreciate and doctors know about!
I also want to avoid more operations after going through the batterings of breast cancer.
best wishes
Leadie

Thank you so much for everyone for your replies to my long posting. I am strongly veering towards not having them removed as I don’t really have a good enough reason for doing so plus I want my body to recover. I have had a lot of anaesthetic over the past 4 years and I feel it takes it toll.

I’m going to write to the gynaecologist and say I want to put it off for a year. That way I haven’t shut down the possibility but take the pressure off myself.

Thanks again, elinda x

Hi Elinda!

Thicko here! I realise your decision has more-or-less been resolved, but I wanted to say Sorry for getting the wrong end of the stick! I saw “ovaries” and jumped in, without reading your post carefully.

All the best, Sarahxx

Sarah - there’s absolutely no need to apologise. It was a long posting and I’m grateful to everyone who’s responded.
take care, Elinda x