Hysterectomy with ovaries removal

[Lilly1812]

Hi all, just wanted to find out if anyone has experience of this. Basically my mum was diagnosed with ovarian cancer at the age of 48 and died at 51. I am 36 now and won't be having anymore kids. Will I be able to have this preventitive surgery on the NHS or do I have to go private? I know it will cost thousands of pounds and not sure I can afford it.. Has anyone been in a similar position? Thanks

I'm sorry for the loss of your mum so young

I dont know whether it would be covered on the NHS, but have you had BRCA1 or 2 testing? I believe it checks for ovarian and/or breast cancer risk for those at a higher level of genetic risk for these cancers. Worth speaking to your GP about as a 1st step.

Thank you. I believe my mum was tested when she was having her treatment. I think she had a blood test and was told it's not genetic. My gp referred me for genetic counselling but they didn't call me because apparently I don't have a strong family history. She's the only one with ovarian cancer so far or any cancer that I know of. My gp only said I should be aware of the symptoms and let him know as soon I develop any unusual symptoms but ovarian cancer is very silent and symptoms are only shown in advanced cases.

I don't think anyone would do that operation for you even privately, as it's not medically 'ethical'. Even where there is a genetic possibility, they simply monitor you with scans.

There are risks of losing your womb and your ovaries. The main one is loss of estrogen so you'd be put into menopause at 36. This means you would need to take HRT (estrogen only) for many years to come- at least to age 50.

Although OC is 'silent' many women also ignore the symptoms as they can be easily confused with other minor things.

You would be sensible to keep an eye on things, but honestly, the way to look after yourself is a pelvic ultrasound. Your GP could arrange this but TBH it's not something they would do on the NHS with resources being so limited, unless you had symptoms. You can buy private scans for yourself at various medical centres. (cost anything between £100- £200.)

Also, OC is very rare in women under 50, and it's also quite a rare cancer anyway compared to other cancers.

There is a charity called Ovacome where you can read stuff online and also talk to them if you are worried. Hope this helps @Lilly1812

Hi OP,

I think some of the pp points are very good about removing ovaries unnecessarily. I have two older half sisters whose mum passed away from ovarian cancer. They have both had the test and been told it's not genetic but they both get private scans (one annually and one every so often - their choices) as like the pp said it can be the silent cancer. I had a hysterectomy for completely different reasons at 39 but my ovaries were left as despite a host of gynae problems it was deemed far more important to leave my ovaries for overall health and only remove them at a later stage if I was having problems. Would it be possible to speak to your GP and have the blood test to determine your genetic chances of potentially developing it or could you go private for it if you really needed to and also have a scan? With your mum sadly having passed from it you should definitely be at least eligible for that I would have thought (disclaimer I am not in the UK so no idea how that works)!! Finally I am very sorry for you losing your mum at such a young age. I recently lost my dad much older than that and I am really struggling and I really feel for anyone who lost a parent so young.

@MrsAliceRichards In the UK, finances are so tight in the NHS as you might know, that they simply don't work on the preventative way that may happen in other countries.

If there was a genetic link, they might.

The best the OP could hope for would be a C125 blood test now and again, but it's very inaccurate and only picks up OC when it's very advanced.

My mum had OC a couple of years ago (thankfully fully recovered after radical hysterectomy). I asked the question about genetic link.
Her tumour was tested and we were told that it was not that kind of cancer.
I would ask for a test for the peace of mind, though you may need to go private.
It is better for you health wise to keep your ovaries if you can but I do understand your worry. As pp have said though it is a rare cancer.
Sorry about your mum

Thank you all for your replies. I really appreciate them. I've been doing yearly scans and ca125 privately but my Gp recently told me a huge research or studies was done on using them as a screening tool and it didn't work in catching OC any earlier or reduce the number of women dying from it so it was disregarded. Once again, thank u all.

I was having heavy periods and got referred for hysterectomy, when I saw the Consultant I asked if I could have my ovaries removed as my GM and 2 aunts died of ovarian cancer. He was happy to do it and I was happy. Had no problems at all, had HRT for a few years afterwards. A couple of years ago I had a bone scan and just registered, only just, for osteopaenia in one area but take vitamin d and calcium for that now.

Years later found out we had a BRCA1 problem in the family and had genetic screening but was clear.

@Lilly1812

Thank you all for your replies. I really appreciate them. I've been doing yearly scans and ca125 privately but my Gp recently told me a huge research or studies was done on using them as a screening tool and it didn't work in catching OC any earlier or reduce the number of women dying from it so it was disregarded. Once again, thank u all.

I think your GP has possibly mixed up something and given you the wrong info.

There is a difference between screening the entire population on a cost V benefit level, and screening an individual.

I know of the screening trial he mentioned. It was in the media a few years ago.

There was a screening programme that ran, as he explained, and it was decided that on a COST basis, it wasn't worth rolling it out nationally. This is how NICE works- cost of screening or drugs versus lives saved.

That is very different to screening for a woman who may have a risk factor.

Scans DO pick up issues. I know it's hard for you and I am sorry about your Mum but if it was shown that her type was not hereditary, you have to try not to worry as much.

If you are worried, carry on paying for your annual, or bi-annual scans, and it might help you to talk to the charity OVACOME to help put your mind at rest.

@Lilly1812 This is an extract from the trial your GP mentioned.

It is all about cost. The conclusion was that for the costs of screening, and maybe more tests for false positive results, there weren't enough lives saved to justify the cost. This is across the whole population.

It doesnt mean that scans do not pick up issues for individual women. The report says that MMS ( multi modal screening) and USS (ultrasound scans) do work, but it's simply too expensive.

Our two aims were to evaluate the lifetime cost-effectiveness of ovarian cancer screening and the value of further research. The results of our economic evaluation suggest that either an MMS or USS screening strategy is likely to result in health benefits when compared to no screening, but at increased costs

@JinglingHellsBells, Thank you so much for that. I think I will continue with checking yearly and also keep an eye out for any unusual symptoms. @ancientgran thanks for sharing ur experience. Appreciate it.

Those of you saying it is a rare cancer. It is the gynae cancer with the highest death rate, and the NHS call it a common cancer. I am fighting it at the moment.
I believe it is possible to have scans done privately, I remember a colleague years ago having a yearly one done.

Hi, @Lilly1812.

I've had a BSO total hysterectomy (laparoscopic) without having ovarian cancer. This meant that I had my uterus, cervix, fallopian tubes and ovaries removed.

I was in my 50s. My NHS gynae surgeon had already offered me a hysterectomy for debilitating bleeding relating to fibroids, and he also offered me the 'full package' if I wanted it. After some thought, I accepted.

One of the conditions was that I had HRT already prescribed and standing by, and boy did I need it. The sweating, the unbelievable sweating, started on the evening of the operation, and I had an oestrogen patch on by the next day. Things settled then.

I still have some menopausal symptoms, even with HRT, which I work hard to keep on top of. I've also had IBS-type digestive issues since, which may be co-incidental (or not). But I don't have the awful constant bleeding any more.

So, swings and roundabouts, really. But I do have that knowledge that I am safe from ovarian and cervical cancers, which was the gynae surgeon's intention. I guess he must have seen a lot of advanced stage cancers in his career where there was little left he could do. So in effect, a NHS surgeon operated preventatively on me. This was about 3 years ago btw.

@thereisonlyoneofme

Those of you saying it is a rare cancer. It is the gynae cancer with the highest death rate, and the NHS call it a common cancer. I am fighting it at the moment. I believe it is possible to have scans done privately, I remember a colleague years ago having a yearly one done.

I'm so sorry, @thereisonlyoneofme, our posts have crossed and I hope that mine doesn't seem too insensitive. My apologies and I hope you getting the care and treatment that you need right now

@thereisonlyoneofme, when my mum was diagnosed in 2015, I did a research and the statistics was 1:70 and most Gp surgeries will or might see a case in every 5 years and so most Gps are unaware of the symptoms. My mum was told the tumour size of a human head was constipation. I had to take her and demand for the ca125 blood test as I have health anxiety so very aware of different symptoms and tests. I agree, it causes a high number of deaths as it's mostly caught in late stages and has a high rate of reoccurring. Most women are fobbed off with ibs diagnosis.

@SpindleyCrow It's a very contentious topic. A great many gynaes will definitely not whip out ovaries as it's now known they have some function (including testosterone) for life. Many very good gynaes will never remove ovaries unless it's for cancer. Likewise, having hysterectomies is now quite outdated unless there are no other treatments available, because there can be side effects from that too.

Private scans are available quite easily although it's important to have them done by drs experienced in looking for OC rather than simply a 'technician' who does pregnancy scans at private scanning centre. Scans are often only as good as the person doing them.

@thereisonlyoneofme Wishing you a good recovery

@SpindleyCrow, I think the reason why u had that option was because u were having a hysterectomy anyway and they may be more accepting of removing everything once they are doing the surgery.

And my age, I suppose, @Lilly1812.

@SpindleyCrow

Hi, *@Lilly1812*.

I've had a BSO total hysterectomy (laparoscopic) without having ovarian cancer. This meant that I had my uterus, cervix, fallopian tubes and ovaries removed.

I was in my 50s. My NHS gynae surgeon had already offered me a hysterectomy for debilitating bleeding relating to fibroids, and he also offered me the 'full package' if I wanted it. After some thought, I accepted.

One of the conditions was that I had HRT already prescribed and standing by, and boy did I need it. The sweating, the unbelievable sweating, started on the evening of the operation, and I had an oestrogen patch on by the next day. Things settled then.

I still have some menopausal symptoms, even with HRT, which I work hard to keep on top of. I've also had IBS-type digestive issues since, which may be co-incidental (or not). But I don't have the awful constant bleeding any more.

So, swings and roundabouts, really. But I do have that knowledge that I am safe from ovarian and cervical cancers, which was the gynae surgeon's intention. I guess he must have seen a lot of advanced stage cancers in his career where there was little left he could do. So in effect, a NHS surgeon operated preventatively on me. This was about 3 years ago btw.

When I had my op I was in a bay with 3 other women, all older than me, I was the only one having ovaries and fallopian tubes removed. I was the only one with no problems for the rest of the time we were in hospital, 3 days I think. I used to joke that they hadn't actually done anything, I didn't even have a scar as they reused my cesarean scar. I did eventually have HRT but it was weeks after the op.

I was in my 40s at the time and believe I was perimenopausal at the time but after a lifetime of difficult periods which went in cycles it is hard to say.

The only difference for me was no more flooding, no more pain, no more migraines. It was fantastically liberating to lose the worry about ovarian cancer, when you have seen 3 close relatives die of ovarian cancer it does tend to worry you.

@SpindleyCrow

And my age, I suppose, *@Lilly1812*.

That is quite out of date though now, because it's become apparent that the ovaries maintain some function for life. I know you are happy with your outcome, but it's probably not a procedure recommended now unless absolutely vital.