Anyone had pre-emptive risk surgery for ovarian cancer?

[MistressoftheDarkSide]

Posting here for traffic as I'm wigging out a bit and know I'm being a bit irrational.

Back story is my Mum and her sister both passed from ovarian, omentum and peritoneal cancer, my aunt in her early 60s, my Mum at 76 last year.

Although there is no obvious genetic link according to the medics, as it hasn't been identified yet, I have been told I'm a good candidate for pre-emptive risk surgery, ie, removal if ovaries and tubes. The process of investigating and deciding this started at the beginning of November, and this morning I have been offered surgery next Tuesday, which has freaked me out a bit, as on the one hand I am extremely grateful considering everything going on in the world right now, but I run a shop by myself and the logistics are a bit complicated as my DP also works elsewhere and can't cover. But that's just a minor detail, because really, if I can reduce my risk of ending up like my Mum it would be foolish not to take it, obviously.

I think I may be being prioritised a bit because my paternal grandmother and aunt both died from breast cancer and my Dad has splendid lymphoma, so I am in a bit of a perfect storm of potential risk.

Anyway, as I'm not able to really discuss this in anything other than an upbeat way with real life people, while churning with inner anxiety, I thought I'd chance my arm here and ask if anyone has any experience of this?

It's down as day surgery but under general anaesthetic and I don't have any other health issues so am lucky in that respect, and am sure that by Tuesday my equilibrium will be restored, but right now I'm just a bit

Thanks in advance.....

I've had half of it as such, fallopian tubes and one ovary (it was only supposed to be fallopian tubes initially, then ovaries at menopause but there was a cyst the consultant removed one ovary due tk caution about (it was normal).

It was laparoscopic and initial recovery was two days, total recovery, maybe a couple of weeks.

If they remove both ovaries, it's surgical menopause. Have they suggested hrt or is it not safe?

When i have remaining ovary removed (at menopause of possibly sooner) they told me not overly happy giving hrt due to family history of breast cancer.

It's strange they're not suggesting hysterectomy too, as I was told that would happen with removal or remaining ovary.

Thst makes op harder on women though.

They aim to do it laparoscopically too, but if they somehow can't, would review to abdominal (open) surgery.

I've read recently that medication is looking as effective as surgery for risk prevention, but I don't know if that is past the test/initial point, and actually being implemented. I think the study was in relation to brca positive women.

Risk reduction, not risk prevention

@Allsortsofroses

Many thanks for your replies, most reassuring x

I'm coming up to 53 and post menopausal anyway, though have been told I might get hot flushes back. HRT was always off the table due to family history so have just muddled through.

Apparently they are avoiding hysterectomy because of the risk of prolapse....

Its keyhole surgery / laparoscopy, so barring complications hopefully I'll be back in the saddle pretty quickly.....

Ah that's a very good age to have it done.

No trying to weigh risk versus early menopause, which had its own problems.

I see (re the hysterectomy).

The consultant who operated on me said she felt I'd need a couple of days in hospital, and I feel she was right. If they really do send you out in one day, I would stay ahead of yourself with painkillers and hopefully your partner will help you so you don't have to move around much for that initial day or two.

Hi OP, I'm in my mid fifties with advanced ovarian cancer, no family history of any cancer and no genetic factors for either ovarian or breast cancer. Is it the fact that you've been offered an appointment so soon which is making you more anxious than ever? This is most likely due to a cancellation becoming available. You don't mention your age, so I'm wondering if you're very anxious about your fertility. I was tested for BRCA1 and 2 after my surgery to inform other family members if I tested positive, my CNS said the usual surgery for say my sister testing positive would be just having her ovaries and tubes removed rather than a total hysterectomy.

I totally get the expectation to be upbeat with others and also the terrible anxiety. I'm happy to answer any questions you might have, on PM if you prefer

Sorry OP, I've crossed posted with you!

I had bleeding after not having a period for years. I was told I was at a higher risk of womb cancer. I couldn’t have hrt due to breast cancer, so opted for hysterectomy.

@FizzyOrange

Thank you so much for taking the time to respond and

I think my anxiety is stemming from several sources, partly logistics and it being so close to Christmas which I am not organised for at all due to the energy of getting my shop ready to open, which happened last week, so as fast as I've got that sorted this is a "spanner in the works" although not one I want to ignore.

I've had one if those lives where "if it can go wrong, it probably will", which I can rationalise mostly, but I cant quite get the "what ifs" under control yet - have just re-read all the statistics and risks etc on my day surgery info and feeling a but calmer now, but my horrible cynical brain keeps nudging towards the irony of doing this to avoid future risk and something going wrong...... I shall just have to put my faith in the skill of the wonderful NHS staff and the universe I guess.

Also I think because they were never sure which was actually the primary cancer for my Mum as it was stage 4 when discovered (after two years of being advised to try the Fodmap diet for IBS) , I need to talk to my gynae about that too. Eliminating the ovaries might be great to reduce one risk, but are there any others? Trying not to dwell on that right now, one step at a time and all that.

I have another gynae appointment on 17th January, so they seem to have anticipated follow up before surgery was booked.

I am overall very grateful but overwhelmed, and also ever so slightly guilty because of hearing of all the urgent surgeries being cancelled....

I am very grateful for your input, I have a tendency to overthink and guess after the last couple of years it's just put me into overdrive.....

I have the BRCA 1 gene and my mother and her mother passed away from ovarian cancer. I had a preventative double mastectomy at 35 (as the gene is linked to breast cancer too) and then had my ovaries removed at 39.
I would say that having my ovaries removed was one of the best things I've ever done. The sense of relief afterwards was huge, I hadn't realised exactly how much anxiety about ovarian cancer I had been carrying. The op itself was very simple and painless. I was in and out on the same day. I hadn't gone through the menopause and was worried about being thrown into medical menopause but started taking HRT immediately and have had no symptoms at all. That was 5 years ago now.
Please message me if you need to ask anything.

@HollyHocks13

Thank you so much for your reply x That is massively reassuring x

No worries. I completely understand the anxiety you're going through right now but I just wanted to reassure you that it really is worth doing for your own peace of mind. I can honestly say that I was in no pain at all after the op and was back at home that evening. The worst bit I think was the feeling of bloatedness for a week or so afterwards and bleeding for a while which was like a light period for a few weeks.
I would do it again in a heartbeat. It was also nice to have the excuse to put my feet up for a week whilst not being in any discomfort!!

My cousin had the BRCA2 gene and had a double mastectomy in her 30's and had her ovaries taken out a few months later, it was hard but she was okay quite quickly and said it was a weight off of her

OP, I totally get the 'what ifs', I have severe anxiety which I take prescription medication for and overthink everything. I can understand the worry of your business and Christmas too. What is frustrating in your situation is that anyone can point out the benefits but those anxieties still exist and are impossible to ignore. I'm really sorry to read about your Mum, sadly, OC is often misdiagnosed for IBS if indeed that was her primary.

Have you thought about ringing Macmillan to talk over your anxieties? You would be 'allowed' if that makes sense, as cancer is affecting your life and you have concerns. I have found them to be a lifeline when I have 'used up' how much I can moan to friends and family, people mean well but say things which really don't help. You just ring between 8am and 8pm, press the option for emotional support and you're through to someone who will listen for as long as you want, however often you need to call. Xx

I had both ovaries and tubes out in 2009, but not my uterus. There were concerns about whether or not it could be done via keyhole because of scarring from appendicitis but apparently it was very straightforward keyhole surgery. I went home that evening. I did get a bit of an infection a few days later - probably did too much (went on holiday four days after surgery- the surgery had been delayed due to doctors holiday. But it was nothing that a dose of antibiotics couldn’t cure. )
I have never regretted it. My mother died in her mid 40s and I would have done just about anything to reduce the risk of the same thing happening to me. Menopause was ok, weight gain less good, but not horrific.
I would do it again without hesitation. No contraception needed, no periods - brilliant. Wounds were tiny and one healed very quickly, the other was fine after the infection cleared. Very little discomfort, and nothing I would describe as pain.

They don’t offer this sort of surgery unless the benefits outweigh the risks so on that basis I’d go for it.

[quote MistressoftheDarkSide]@Allsortsofroses

Many thanks for your replies, most reassuring x

I'm coming up to 53 and post menopausal anyway, though have been told I might get hot flushes back. HRT was always off the table due to family history so have just muddled through.

Apparently they are avoiding hysterectomy because of the risk of prolapse....

Its keyhole surgery / laparoscopy, so barring complications hopefully I'll be back in the saddle pretty quickly.....[/quote]
I had ovaries, tubes, womb and cervix removed at 48. They reused my CS scar, I felt well afterwards, I would say I don't think they've done anything I hadn't even got a new scar to show for it.

I was menopausal when I had the surgery, I wasn't having many symptoms anyway but nothing after the op. No hot flushes or anything.

After seeing my gran and two aunts die of ovarian cancer and my mother die of cervical cancer it was a no brainer for me.

Good luck with your decision.

Op, I’ve had the experience of ovarian cancer this year and I wouldn’t have hesitated to have the surgery you’ve been offered if anyone had felt I had a need for it prior to this year. Even compared to staging and debunking surgery what you’ve been offered is a much easier op than being filleted like a fish from just under the breasts to the pubic area and having everything (including any spare kitchen sink they may find) removed.

I hope you can come to a peaceful conclusion soon.