Don't let that tummy trouble just rumble on - it could be ovarian cancer

'I started experiencing intense abdominal pain just before I needed to go to the toilet,' said Caroline Raphael

You may not have heard her name before, but Caroline Raphael is one of the most influential figures in British comedy.
As commissioning editor for comedy and fiction at Radio 4 and Radio 4 Extra, the 55-year-old has been responsible for bringing us some of the most popular comedy shows, including The League Of Gentleman, Little Britain and That Mitchell And Webb Sound.
An otherwise healthy — and driven — woman (in 29 years of working for the BBC she’s had barely any time off, even when her son Tom, now 25, was born), she wasn’t initially overly worried when she developed stomach pain in March 2010.
‘I started experiencing intense abdominal pain just before I needed to go to the toilet,’ says Caroline.
‘It was like someone was gripping my insides and pinching them hard.
‘It took my breath away and I couldn’t speak when it was happening, but then it would fade away and I’d feel fine. I also needed to wee more frequently.
'I had lost a bit of weight and wasn’t eating much, but I put that down to having just moved house.
‘After about ten days I went to see my GP, telling him I thought I had IBS (irritable bowel syndrome).
'My bowels had been a bit unpredictable for years, going from constipation to loose bowels, particularly if I’d had too much of something like strong coffee.

 

‘I assumed it was an extension of this and expected to be given medication and sent on my way, but he said he’d like to refer me to a gastroenterologist for tests.’
Caroline, who has private health insurance, was given an appointment with a specialist the following week — but she assumed her GP was just being thorough.
The gastroenterologist performed a colonoscopy and gastroscopy (investigations into the bowel and stomach using a thin tube with a camera attached), but also sent her for a blood test and an ultrasound.
The ultrasound technician found a mass on her right ovary and suggested it could be a cyst.
‘A few days later, I got a phone call from the gastroenterologist’s secretary saying he needed to see me immediately, so I cancelled all my meetings and rushed over,’ she says.

'My bowels had been a bit unpredictable for years,' said Caroline

‘All he said was that I needed to be referred to a gynaecological oncologist and it slowly began to dawn on me that I might have cancer.
'I went home and looked up my symptoms — I realised then that I probably had ovarian cancer.’
Ovarian cancer is the fifth most common cancer in women, and 7,000 are diagnosed each year. It has poor survival rates (only 40 per cent survive beyond five years) because the symptoms are similar to other conditions, such as digestive disorders, meaning it can be easily misdiagnosed at the GP surgery.
‘Worryingly, I see patients who thought they had IBS and their GP has attributed the symptoms to the condition, too,’ says Professor Hani Gabra, professor of medical oncology and director of the Ovarian Cancer Action Research Centre at Imperial College London.
‘This is why we try to promote awareness of the symptoms and their similarity to IBS.
'It’s unusual for someone to go to their GP as soon as symptoms appear, as they’re often vague and rumble on for weeks or months before a woman thinks a GP visit is needed.’
Symptoms include bloating, abdominal pain, loss of appetite or feeling full very quickly, and — what many women may not realise — changes in bowel or bladder habits, such as diarrhoea or needing to urinate more frequently.
‘The key is that the symptoms are persistent, frequent and unpredictable in nature — they have no obvious trigger, such as eating,’ says Professor Gabra.
‘Symptoms are caused by a tumour large enough to start compressing other organs or wrapping itself around organs such as your bowel, causing obstruction or a build-up of fluids.’
Once Caroline was told she was indeed suffering from ovarian cancer, she says the worst moment was telling her then 82-year-old father.
‘My mother had died from lung cancer at 42, when I was 20, so I knew my news was going to break his heart,’ she says.
‘I could hear him trying not to cry when I told him.’
The oncologist Caroline saw a week later carried out an MRI and CT scan and looked at the results of her blood test — this had checked for levels of CA125, a cancer marker that is implicated in ovarian and some other cancers.
Caroline’s results were high and the oncologist recommended she have a total hysterectomy, removing the womb and cervix, as well as removal of the fallopian tubes and ovaries.

Symptoms include bloating, abdominal pain, loss of appetite or feeling full very quickly, and changes in bowel or bladder habits

‘I was well into my menopause by then and had a child, so I was happy to go ahead with whatever was needed to rid my body of the cancer,’  she says.
She had the operation in May 2010. Caroline also underwent chemotherapy to ensure any spread of cancer cells was caught — undergoing six cycles of treatment over the space of 20 weeks.
‘It wasn’t as horrendous as I’d dreaded,’ she says. ‘I was only sick once and didn’t lose all my hair as I used a cold cap.’
This gel-filled cap cools the scalp, contracting the blood vessels so that less of the chemotherapy reaches the hair follicles, and so preserving the hair.
Her lowest point was the struggle to get a needle into her vein, leaving her with a painful, bruised arm but she was then given a Groshong line (a hollow tube inserted into the chest, through which medication can be given).
‘It was a godsend as it meant no more needles,’ she says.
She did, however, feel desperately rundown at certain points — and for the first time in years, she gave herself a chance to recover.
After her treatment finished in November 2010 she started to look into her family history, and found that two aunts and cousins on her father’s side had had ovarian or breast cancer.
‘I come from a family of Ashkenazi Jews, which has a strong prevalence of the faulty BRCA1 or BRCA2 genes associated with ovarian and breast cancers,’ says Caroline.
‘I decided to be tested to see if I was a carrier.’
Fortunately, Caroline was not. But her experience has confirmed the importance of seeking medical help for persistent gut and bowel symptoms.
‘Before trying a wheat-free diet or pro-biotic yoghurt, just go and get checked out, particularly if you’re over 50, as 80 per cent of ovarian cancers happen in that age group,’  she says.
Other factors that increase risk include obesity, not having children, having a first child after the age of 30, not breastfeeding, starting menstruation before the age of 12, experiencing the menopause after 50, using HRT and never having taken the contraceptive pill (thought to be risk factors because the more women ovulate, the more  wear and tear there is on  the ovaries).
Caroline went back to the BBC in January 2011 and several months later married her partner of four years, Paul, who is a magazine editor.
She still has check-ups  every three months. But,  perhaps unsurprisingly, life has changed.
‘After a serious illness, it may be a cliche to live in the moment and cherish things you took for granted before, but it is true,’ she says.
‘Being off work meant I slowed down for the first time in decades.
'I read books that were not connected with work; I noticed things staring out of the bus window that I would not have noticed before, as I would have been head down checking emails.
‘Now I’m clear of cancer and back at work, I am trying  to hang on to the lessons I learnt.’