Ovarian cancer: the urgent need for a screening programme

Ovarian cancer strikes 7,000 women every year and kills 5,000, yet there is still no proper screening programme. Maxine Frith speaks to a survivor on a mission
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She'd gone to her GP when she noticed her stomach was a little distended. "I wasn't even thinking about cancer," she says. "I thought he was going to say I had an ovarian cyst and that I would need an operation, and everything would be OK. Then he started talking about shadows and lesions, and I said, 'Do I have cancer?' He said yes. At that point, I stopped listening. I just shut down."

Now, Ford is leading a campaign to launch a screening programme for a disease that has been dubbed "the silent killer" thanks to the lack of early diagnoses and the high death rates among sufferers.

Almost 7,000 women are diagnosed with ovarian cancer a year in the UK. Only half of them will be alive five years later. While survival rates for breast cancer have improved exponentially, there has been little change for ovarian cancer and 5,000 women die from the disease every year. The biggest problem is the lack of an effective screening programme or diagnostic test.

For Ford, the timing was cruel. It was just before Christmas 1997 and she had just moved to Sheffield for a new job. She'd bought a house with her partner Ian and was fit and healthy. The first sign that something was wrong gave her no particular cause for worry. "I was lying on the floor watching TV and I noticed that my stomach was slightly sticking out," she recalls. "Then, a bit later, my partner made a curry and I suddenly realised I just couldn't eat. It was so sudden that I went to see my GP."

Luckily, her GP realised it could be an ovarian cyst and made an urgent referral for an ultrasound scan. That raised concerns, but the uncertainty of the diagnostic tools for ovarian cancer meant that Ford was left to ride what she can only describe as a "roller-coaster" for days.

"After the GP told me I did have cancer, a specialist did an internal examination and said he thought it wasn't malignant," she says. "So I went for an operation to remove one ovary, thinking, 'Hurrah, I don't have cancer.' Then, when I woke after the anaesthetic, he was saying, 'Let's wait and see.' It was appalling."

Finally, Ford received the phone call she had dreaded; the biopsy confirmed that she did have cancer in the ovary, and it was unclear whether it had spread. "All this must have been a nightmare time for Ian as well, as he had a friend who had died of ovarian cancer and he knew the statistics. He didn't tell me, and was a wonderful support, but I know he went to see some friends and talked to them."

Somehow, the couple got through Christmas, still not telling anyone. Then, on New Year's Eve, Ford was told that the disease had been caught in the earliest stages; it was confined to the ovary and she would not need chemotherapy. "It was the most enormous relief," she says. "Then, on New Year's Day all these people started arriving at the house with champagne and we had an enormous party. So now, we always have a New Year's Day party instead of one the night before."

But the roller-coaster had not stopped. Ford had to make an agonising choice; whether to have her other ovary removed, destroying her chances of being a mother, or to try for children quickly but run the risk of the cancer returning in her second ovary.

"My partner didn't really want children and I wasn't massively bothered, so I decided to have it out," she says. "But it was hard, lying in the hospital bed the night before, thinking, 'What if I'm making a mistake, this is it, this will mean I can't have children.'"

Through all this, Ford had still not told her parents. "I hated having to tell people, to deal with their reactions. I never read anything about ovarian cancer, I just didn't want to know. My mum was very upset when I did tell her, after I got the all-clear, but I needed to get through it."

The removal of her ovaries and uterus brought on the menopause, and Ford has been on hormone replacement therapy since. But she was given the all-clear at the crucial five-year stage, which led to a change in direction. She went to work for the Breast Cancer Care charity. This month, she became chief executive of the Eve Appeal, a new charity raising funds for research into ovarian and other gynaecological cancers.

"I wanted to give something back, but I don't think I could have gone straight into working for an ovarian cancer charity," Ford says. "It was all too raw. I still get very emotional about it, but now I feel I can use my experience in my job."

The appeal aims to raise £5m for research into a potential screening programme. Professor Ian Jacobs, who heads the research team, says: "Our ambition is to develop techniques capable of cutting the number of deaths from ovarian cancer by 50 per cent. The screening programme is absolutely vital."

Working in the field has made Ford realise how lucky she was. "We'll know we are making an impact when we have more women like me, who have had ovarian cancer - and survived."

See www.eveappeal.org.uk