Women who are diagnosed with advanced ovarian cancer are less likely to survive in the UK than in similar countries around the world, according to government-funded research which also suggests that their treatment may not always be as good as in other countries.
The results of the study were described as "disturbing" by Cancer Research UK, whose experts analysed the data. They show clearly that the poor survival rates are not due to women delaying going to their GPs with their symptoms, as has often been suggested. That happens just as much in some other countries such as Denmark, where survival is better than in the UK.
Instead, it looks likely that the issue is with the care some women receive – and more likely about the standard of surgery than about drugs.
The research comes from the International Cancer Benchmarking partnership, which was set up with funding from the Department of Health to compare cancer outcomes in a group of affluent countries around the world. Experts hope the UK will be able to improve its diagnosis and treatment of many kinds of cancer as a result.
The UK's record on ovarian cancer was compared with that of four other countries: Australia, Canada, Denmark and Norway. Overall in the UK, 69% of women survived for more than a year after diagnosis, compared with 72% in Denmark and 74-75% in the other three countries.
But survival in the UK was lower for those women diagnosed with advanced cancer. In women over 70, only 35% with late stage cancer survived for a year, compared with 45% in Canada.
Data from more than 20,000 women between 2004 and 2007 showed that all five countries had similar proportions of patients being diagnosed at each stage of the disease. That suggests that late presentation - not going to the doctor with symptoms until the disease is advanced and harder to treat - is not the reason why women are less likely to survive here.
Annwen Jones, chief executive of Target Ovarian Cancer, said: "It is unacceptable that women with ovarian cancer in the UK face a lower survival rate than those in other countries."
She added that earlier diagnosis was crucial. "It is vital that women are diagnosed at the earliest stage possible, so they are able to access the right treatments as quickly as possible. When women are diagnosed late, their treatment options are more limited, so likely to be less effective," she said.
Dr John Butler from the Royal Marsden Hospital, one of the authors of the study and a Cancer Research UK clinical adviser for the project, said there were probably three major factors in the low UK survival rates.
"Patients in the UK may be less fit, with more obesity and more co-morbidities (other illnesses)," he said. "They may not be able to tolerate some of the treatment as a result. I see some who are pretty fit and well," said Professor Butler, a gynaecological cancer surgeon, "and others who are not fit enough to anaesthetise for an operation."
The second possibility is that the quality of treatment in the UK may be lower than elsewhere, he said. The third is that patients diagnosed at stage 3 - with advanced cancer - may be being diagnosed later in the disease progression than women diagnosed with stage 3 in other countries.
Access to drugs for ovarian cancer is probably not the issue, he said, because they are "pretty universally available" for the disease. But the most important treatment for ovarian cancer is radical surgery. "It is likely that the availability and quality of that is less than in other countries," he said.
Women need to be referred to a dedicated cancer centre by their doctors so that they get their operation from a surgeon who is a gynaecological oncologist, which means he is expert in removing ovarian tumours. However if they need urgent surgery, for instance because their cancer is causing a bowel obstruction, it may be necessary to have their operation elsewhere.
A Department of Health spokeswoman said: "We are working to bring England's survival rates for all cancers up to the level of the best – by investing in earlier diagnosis and ensuring people get the best possible treatment.
"The National Institute for Health and Clinical Excellence has recently published clinical guidance and quality standards for ovarian cancer, to help professionals recognise the condition and make it clear what good care looks like. We would expect clinicians to put this guidance into practice and make sure all patients are offered the treatment that will work best for them."
A patient's story: 'I don't think they knew what was going on'
Tracey Toop suspected something was wrong about 18 months ago but, oddly, it seemed that the trouble was with her right leg. "Every time I tried to sit down and relax, my leg started hurting," she said. Sometime she was in agony. "Then I started getting stomach problems. I went to the doctor a couple of times. I was even taken to hospital because they thought it was my appendix."
The 43 year-old teaching assistant probably visited the GP four or five times: "I don't think they knew what was going on and it was hard for me to explain. Perhaps I should have made more of it myself, but I thought they will think I'm making things up."
Six months after the leg pains began, and with nothing resolved, she had a conversation with her aunt. "My auntie said go to the doctor and tell them you have a cyst on your ovary – because she had one that caused leg pains."
Toop went back to the GP one more time just before Easter and demanded a scan. "Then it snowballed," she said.
Toop had stage 3c ovarian cancer – as bad as it can get before it is classified as terminal, at stage 4. She had three tumours, some of which had stuck to her pelvis causing nerve damage in the leg.
There was no time for drug treatment to shrink them. "Because I was in so much pain, the surgeon decided to remove it all first," she said. After that, when she had recovered from the operation, she began chemotherapy which she is still undergoing every three weeks at the Great Western hospital in Swindon.
Toop, who has two sons aged 16 and 20 and a daughter of 14, says she has had incredible support and is fundraising for the charity Target Ovarian Cancer because she wants other women to be aware of the disease.
In an amazingly cheerful and matter-of-fact way, she said it was going alright. "I try to stay positive. When it is my chemo week it is really hard because I feel so ill." But the doctors tell her it is not a cure – in fact they say she probably has less than two years to live.