My dilemma: should I have my ovaries removed?

Woman's hands on stomach

I’m a cysty woman. So said my gynaecologist as he ultra-sounded me for what seemed the millionth time.

Woman's hands on stomachEvery few months I subject myself to this intimate and uncomfortable probe, so the gynae can check that my ovarian cysts are not, in my words, dodgy.

Sometimes they get a bit larger, and sometimes they disappear altogether. But at the moment, there are quite a few of them and some are getting larger. And my gynae is worried.  He says that there shouldn’t be, as he puts it, any “activity” in my womb, as this could presage cancer.

And there we have it – or at least, I have it. I am faced with the dilemma, much discussed in the media, as to whether to have my ovaries removed, because screening says there is a chance that the cysts could become cancerous.

So how did I end up on the screening path?

I had no symptoms, and only went to visit a gynae because my coil had embedded itself somewhere it shouldn’t and needed to be removed. And while he took a history, I mentioned that my mother had had ovarian cysts, so he suggested I have a scan to check whether I too had them.

And have them I did.

So now I am on the conveyor belt, I’m in the system, I’ve been fingered as a cysty woman, and as such, will at some point need to decide whether to have elective surgery to prevent these cysts turning cancerous.

At this point, I must declare not just an interest, but some prior knowledge of this dilemma, as I have worked for two cancer charities, Breakthrough Breast Cancer – now known as Breast Cancer Now – and Ovarian Cancer Action.

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At Breakthrough, we knew that nine of out ten breast lumps were benign, but we also knew that mammograms save lives. I go for mammograms every three years, and as someone who had a benign lump many years ago, am at a very slightly higher increased risk of developing breast cancer.

I don’t know whether I have the BRCA I or II gene which is implicated in inherited breast and ovarian cancer, and as I don’t have any close family members who have contracted the disease, I don’t see the need to be tested.

And although there is this commonality between the two diseases, ovarian cancer survival rates are very low in the UK, much lower than those for breast cancer. This seems to be mainly because women don’t know they have the disease until it is too late to treat.

Symptoms are often attributed to IBS or the menopause, so awareness of the signs and symptoms is crucial to better survival.

Watch out for:

  • Persistent stomach pain or bloating
  • Finding it difficult to eat or feeling full quickly
  • Needing to wee more often
  • Back pain
  • Changes in your bowel habits (diarrhoea or constipation)
  • Feeling tired all the time

And if you’re worried, don’t hesitate to speak to your GP.

A tough decision…

But I don’t have ovarian cancer – at least not yet.  I am currently awaiting the results of another screening tool used to diagnose the disease: a CA125 blood test.  This test, taken together with the ultrasound, is one of the ways to diagnose the disease. If my CA125 is significantly raised above what it was three months ago, I may have cancer.  If it’s stayed more or less the same, I probably don’t.

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So, let’s assume my CA125 is fine – which, I’m guessing it will be, as I have no symptoms of the disease – then my dilemma is whether to have, to use the technical jargon, a prophylactic oophorectomy. That is to say, to remove my ovaries on the off chance that the cysts may eventually become cancerous.

Now, if you’d asked me a few years ago whether I would have my ovaries out in case my currently benign cysts were cancerous, I would have said yes, absolutely!  But now I’m being faced with this dilemma, I’m not at all sure – in fact, I really don’t want to have them removed.

And this is what critics of the screening programme for both breast and ovarian cancer mean when they say women are having unnecessary surgery – my surgery, should I choose to have it – might be unnecessary.  So if I hadn’t had problems with my lost coil, I might never have got to this stage. I’d never have known I had ovarian cysts, and I might not be considering having my ovaries removed.

So, what to do?  Soon I am meeting with gynae to get my test results. If they are normal, I am fairly sure I will stick with the status quo, and arrange to have another scan and test in a few months.  But I am not anti screening or anti testing.  I think it’s vital, because for every nine women who haven’t got cancer, one will, and she should be able to be treated at the earliest opportunity.

It’s just another example of the more we learn, the more choices we have to make.

Find out more…

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Deborah Granville

About Deborah Granville

I’m an event planner and blogger based in London. I started life as a covers band singer, progressed to the Bar, then to the voluntary sector, whilst bringing up two children and a dog. I’ve run all kinds of events, from large balls to small receptions. I’m co-chair of my local branch of the Women’s Equality Party and have recently published my first book, Fabulous Functions for the Faint-Hearted.