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Blog: womb cancer

 

Let me tell you a story about two sisters, my half sister and me. We each turned 50 in the last couple of years. We are both mothers, both of a healthy weight and fit - although she's a bit slimmer and quite a lot fitter than me if I'm truthful.

In 2013, we both found our periods going haywire. Neither of us talked about it much. Well, you don't like to, do you? We both thought the changing pattern of bleeding was the start of the menopause and would soon settle down. When it didn't, we each sought medical advice.

She was diagnosed with a benign condition and treated with a D&C. I was diagnosed with advanced cancer of the womb and spent most of 2014 undergoing extensive and difficult treatment.

In short, two women, neither of who had the classic risk factors for womb cancer (post menopausal, no children, obese, diabetes). One had the far more common outcome, one the much rarer. Would you have been able to distinguish between us in primary care?

I was lucky in that my GP took me seriously from the start and ordered blood tests that ruled out menopause, an ultrasound that found a huge mass in my womb, and referred me to a gynaecologist who fast tracked me for a hysteroscopy. It took six weeks from my initial consultation in general practice to my diagnosis.

Not all the women I know are so lucky, though. I'm a member of the Macmillan Womb Cancer Support group - an invaluable email network where women support one another. The stories of delayed diagnosis from young women - some of them in their 20s - are just heart breaking.

Take this from one group member: “My diagnosis was delayed by more than a year because my original GP kept saying I was 'just menopausal'. I can sometimes get quite angry that my tumours grew so large because of this. We need much more emphasis on preventative medicine.”

Or this: “I'm 29 and diagnosed October last year. I was knocked back time after time (nine months in total) to the point I thought it was in my head despite being in agony. It took nine months to be understood, or should I say believed, and to finally get a scan. Now, four months in to remission the cancers returned in breast and nodes and set to restart treatment tomorrow. Being told I was too young for cancer and now it's back for round two is devastating. I find it hard to understand how you can be labeled as too young. Women need to be made more aware, doctors and nurses need to be.”

As with any cancer, an early diagnosis is the key to a good outcome. If it is caught early enough, it can be cured with surgery alone.

So what's the answer? Should the NHS offer suspected cancer referral to all women with abnormal menstrual bleeding? I think not; only 10% of women with post-menopausal bleeding have womb cancer and the condition is uncommon in pre-menopausal women. Of the 8,500 or so womb cancer cases diagnosed every year in the UK, around 15% are in pre-menopausal women. According to Cancer Research UK[1], just 45 women aged 34 and under are diagnosed annually in the UK with womb cancer. On average, a full time GP would expect to see one of these women once every 700 years.[2] I think it would do real harm to young women with abnormal bleeding to suggest to them they might have cancer when the overwhelming majority of them do not.

Yet womb cancer is on the increase. In the UK, the incidence rate has increased by 43% since 1993-1995, from 13.8 per 100,000 female population to 19.7 in 2007-2009. While rising obesity is likely to be a factor, it does not explain the rise completely.[3]

So should there be more emphasis on raising awareness of the signs and symptoms? To me this makes sense. The anecdotal evidence seems to be very strong: women are not aware of womb cancer despite it being the fourth most common cancer in women. I'd never heard of it and it is rarely discussed. Yet Public Health England recently ruled out an awareness campaign.[4]

I know I found it hard to talk about my periods before this diagnosis. I know I was unwilling to go to the doctor for some weeks both because of the sense that, as a woman, my bleeding was somehow to be expected and because of the inevitability of an undignified internal examination. I'm certain I am not alone.

I think there is a role for practice nurses in making it normal for women to talk about their periods in routine health consultations as well as raising awareness of the risk factors for womb cancer where appropriate. Let's just start talking about this more. I don't want to frighten anyone - but I wouldn't wish what I've been through in the last year on my worst enemy.

 

 


[2]Email correspondence between RCGP and Womb Cancer Support UK, November 2014

[3]Outline of Uterine Cancer in the United Kingdom: Incidence, Mortality and Survival Gynaecological Cancer SSCRG. National Cancer Intelligence Network

[4]Email correspondence between PHE and WCSUK, December 2014