ISSUE 2146 Tuesday 10 April 2001

Hunting down the 'silent killer' A 10-year study of 200,000 women will look for a reliable early test for ovarian cancer, reports Christine Doyle

Everyday complaints may be early warning signs

DURING the next few weeks the first of 200,000 women will be given tests to detect the earliest signs of ovarian cancer. They are taking part in a £12 million trial of early warning tests for this most lethal of women's cancers.

Finding a reliable test is urgent. The disease affects more than 6,000 women a year, with 4,800 deaths. More die each year from this cancer than from cervical cancer, for which women are regularly screened. Those most affected are women over 50, although younger women are not immune: one case in 10 is under the age of 45.

The study of early warning tests, directed by Professor Ian Jacobs at St Bartholomew's Hospital, London, is the world's largest and is being supported by the NHS and the Medical Research Council. Two of 12 proposed regional centres, announced earlier this year, are now ready to start testing; the rest will open during the next 12 months.

The disease has been called the "silent killer" because it often develops rapidly with scarcely any warning symptoms. As many as seven in 10 are too far advanced for effective treatment when diagnosed and the overall survival rate is fewer than one in three. However, caught early, when a tumour is confined to the ovary, treatment success can be higher than 90 per cent.

Women will be invited to enter the study during the next three years and will be followed up for six years with a call and recall system similar to that used for breast cancer screening. Of the 200,000 women, half will be screened with either an ultrasound scan of the ovaries or a blood test to measure a protein called CA125: levels usually rise when ovarian cancer is present. The other half will act as controls and be expected to report any suspicious symptoms.

At the same time, Ovacome, the only nationwide support group for those with the disease, is intensifying a drive to increase awareness of the abdominal and other symptoms that can herald the cancer. The charity was founded four years ago by Sarah Dickinson, a young mother of two, who was determined there should be less mystery about the disease.

Tragically, according to a recent survey by Ovacome, fewer than one in 10 women are fully aware of ovarian cancer and the possible symptoms before diagnosis. Many put up with persistent abdominal symptoms for up to a year before seeing their family doctors who may then take six months to a year before establishing a diagnosis.

Usha Menon, a consultant cancer surgeon at St Bartholomew's Hospital, who is co-ordinating the new screening trial - the United Kingdom, Collaborative Trials of Ovarian Cancer Screening - says: "It is heartbreaking to have to tell someone in her fifties that she has advanced cancer." What does she say? "Sometimes, I just hold her hand."

The trial offers hope not only of earlier diagnosis and more effective treatment, but also of identifying women who have early cancer, but whose CA125 level has not yet risen. One estimate based on previous smaller studies, says Miss Menon, is the detection of up to 80 per cent of cancers before symptoms develop.

So why not test many more women now? As yet, explains Miss Menon, we do not have the firm statistical evidence scientifically and economically to clinch the case for a mass NHS screening programme. Problems include both "false positive" and "false negative" results. Another is that some women might have normal levels of CA125 when tested and develop clinical signs of cancer during the next 12 months. The study may throw more light on this. CA125 can also be higher in women with other conditions, including other cancers and during menstruation.

Miss Menon is confident the case for mass screening will be proved. Yet, the study is expected to take 10 years. Important though it is to establish proof, many older women will feel this is far too long to wait. The situation is similar to that with men and screening for prostate cancer. That is said to be about 80 per cent effective, and recently, the Health Department announced that GPs should make the prostate specific antigen test (PSA) available to men who ask for it.

With new treatments and more sensitive blood tests for ovarian cancer on the way, many women might feel that they, too, should benefit from wider availability. Meanwhile, those who can afford it are increasingly likely to pay for peace of mind.

'We need to talk more about detection'

Karyn Connor developed ovarian cancer four years ago. "I had a lot of vague symptoms, and they had bothered me for some time. I was only 27, so even though I was a nurse, cancer was the last thing that occurred to me." There was no history of the disease in her family. Nor did the possibility occur to her GP.

Karyn thought her abdominal bloating and other symptoms, including indigestion and pain across her abdomen and down her legs, might be related to putting on weight.

"My GP thought I might have an infection and, as I was feeling quite ill, referred me to hospital where doctors thought I might have a pelvic abscess and prescribed antibiotics," she says. Only on the point of discharge a week later, and more or less as an afterthought, was she given a blood test to check for possible signs of ovarian cancer.

"The hospital said it would get in touch, but I still felt so sick I went back to my GP. The result had just arrived and I was stunned to learn I had high levels of CA125 and might have ovarian cancer. I knew very little about it, except that it was serious. A doctor where I worked tried to reassure me by explaining that high levels could also be caused by endometriosis or infection. But I felt shocked - and also powerless, because of my lack of information."

Six days later, at Guy's Hospital, London, she woke up in intensive care minus her ovaries and womb. "I had had a hysterectomy. The surgeon found a tumour with a mass of fluid almost a kilogram in weight. I also had necrotic [dying] tissue which could explain the earlier diagnosis of infection.

"The whole thing was a weird blur. I felt so ill, I had no option but to put myself in the doctors' hands." She then faced a nerve-racking six-day wait for the results of tests on the removed tissue. She knew that the overall five-year survival rate for ovarian cancer was far from encouraging.

"The results showed cancer had spread to my Fallopian tubes and to the uterus, but there were no patches in the abdomen itself and it had not spread to the lymph nodes. I was, I believe, at advanced stage two. Everyone is different and, although I know my stage of cancer has a specific five-year survival rate, I prefer not to think about it. I would rather get on with life than label myself a cancer statistic."

Six months' gruelling chemotherapy followed. Being at Guy's, which has a specialist cancer centre, she felt "lucky" to be included in a trial of taxol, an expensive cancer-fighting drug that has since become the "gold standard" for ovarian cancer treatment.

She believes that her experience underlines the urgent need for more awareness and effective early detection, so, as she recovered, she became one of the founders of Ovacome and helped to set up the charity's "Phone a Friend" network.

"One of the most frustrating things for women is not knowing where to find out information. I found myself looking up journals in medical libraries before turning to Ovacome.

"Being treated at a specialist cancer centre is crucial. Many women are still referred to general surgeons. Others find out the best centres or treatment or advice too late. I realise that I was lucky to be in a trial of taxol, but I was perhaps luckier to be in the treatment rather than the control group. Had I known then that in American centres and some European centres taxol was becoming a treatment of choice, I might have opted to pay for it myself. I think it saved my life."

Most older women with ovarian cancer already have a family, but for Karyn this was an important emotional issue. Andrew, her husband who is a physiotherapist, tried to be positive. "He was very supportive, but I think at that time it mattered more to me. Overnight, my long-held expectation of having a baby had vanished."

Karyn was determined not to become obsessed by her infertility, but finds it difficult since, as a health visitor, she sees children and babies every day.

The Connors are considering adoption, yet, as Karyn points out, the latest research suggests it might be possible to preserve fertility in young women who have ovarian cancer. One way would be to freeze slices of ovarian tissue for future use. The eggs might have to be implanted in a surrogate womb after in vitro fertilisation, though in some cases where cancer is detected early, a woman might be able to keep her womb.

Karyn concludes: "This was too late for me, but is another reason why we need to talk more about the early detection of this cancer, the treatment and the issues for women recovering from it. We will not beat it with silence."

-- Anonymous, April 09, 2001