Women may be dying because of diagnosis confusion

A groundbreaking new UK-wide study reveals today (June 29) widespread GP confusion about ovarian cancer - and that women generally don't know much about the disease. Some may be dying unnecessarily because their diagnosis takes too long.

Ovarian cancer affects 6,800 women each year. Only 30% survive, a five-year survival statistic that has not improved in 30 years (unlike breast cancer survival which has increased from 50% to 80% in the same period). It is the deadliest gynaecological cancer, but if women are diagnosed at an early stage 90% could survive. At present three quarters of women are diagnosed with late stage cancer i.e. the cancer has already spread. There is increasing evidence that symptoms may be present for an average of 12 months before diagnosis.

Target Ovarian Cancer, http://www.targetovarian.org.uk/, the charity behind the new study, believes ovarian cancer has been under-funded, ill understood and neglected compared to other cancers. The charity commissioned the Target Ovarian Cancer Pathfinder Study to undertake the most comprehensive mapping of ovarian cancer in the UK ever carried out. It publishes its first findings at the House of Commons (today) June 29.

"Change is long over-due and ovarian cancer needs to become a priority. Our in-depth investigation into the diagnosis, care and treatment of ovarian cancer patients and their health care professionals is starting to tell us what can be done to save some of the 12 women a day who are lost to ovarian cancer," said Annwen Jones, Chief Executive of Target Ovarian Cancer. "The Target Ovarian Cancer Pathfinder Study is the most ambitious research exercise of its kind and has helped spotlight gaps in provision as well as examples of good practice."

As a result of the study, Target Ovarian Cancer is calling first on the Department of Health to spearhead a national symptoms awareness campaign after it found:

• Among 400 GPs surveyed:
• About 80% wrongly think women with early stage ovarian cancer do not have any symptoms.
• Doctors do not know about important Department of Health guidelines issued in February that spelt out the exact symptoms doctors should watch out for. Only 27% of GPs in England were aware of this guidance.
• While 51% correctly identified ‘increased abdominal size' as the most important symptom of ovarian cancer and less than 2% of GPs picked out ‘difficulty eating' or ‘feeling full'.
• 61% were not aware that a strong history of ovarian cancer on her father's side of the family could increase a woman's risk of the disease.
• 51% did not know that the UK has one of the lowest survival rates for ovarian cancer in the developed world.**
• The majority of GPs (69%) surveyed seemed unaware that women with ovarian cancer were more likely to experience frequent, sudden and persistent symptoms than women with irritable bowel syndrome (IBS), for instance. To know this would assist them in a diagnosis. (One of the big problems women face is misdiagnosis. Women are sent for gastric tests for irritable bowel syndrome and by the time the mistake is discovered their cancer is often terminal. When asked what other diagnosis they had made when a woman presented with symptoms, seven out of 16 GPs answered IBS).

Among 1000 UK women surveyed***:

• Only 4% said they could very confidently identify a symptom of ovarian cancer.

• Most common symptoms, such as ‘increased abdominal size', went largely unrecognized, but pain in the abdomen was correctly identified by 24% of women surveyed.

• Two thirds (63%) thought ovarian cancer was unrelated to age (in fact, older women are more likely to have ovarian cancer).

• 80 % did not know that childless women are more at risk of ovarian cancer.

"Ovarian cancer is not a silent killer ...it is just not being heard," said academic GP, Willie Hamilton, who is based at the University of Bristol and is a member of the Target Ovarian Cancer Pathfinder Study Advisory Panel.

GPs are aware there are problems and 93% of those questioned acknowledged that women often experienced a delay in getting a diagnosis. Over six in ten GPs said they would welcome improved NICE guidance (not due till 2011) and over a half would value family history tools to help them. All GPs (100%) said they would like women to tell them if they think their symptoms might indicate ovarian cancer particularly as some reported only seeing a case of ovarian cancer once every five years.

However, nearly two thirds of 132 women with ovarian cancer interviewed for the Target Ovarian Cancer Pathfinder Study felt their doctor did not take their concerns and symptoms very seriously. Those who are wrongly thought by their GP to have IBS fare the worst. Forty-four per cent of the women polled had to wait more than six months for a correct diagnosis. Other women (37%) had to visit their GP three to five times before being referred to an appropriate specialist and the majority (65%) said they were not referred for a CA125 blood test and/or internal scan straight away. Women referred quickly were diagnosed faster.

Health Minister, Ann Keen commented, "The Department of Health is committed to working with Target Ovarian Cancer and others to increase survival rates particularly in the areas of symptom awareness amongst women and GPs. As a nurse, I understand how important early detection is in helping to fight this deadly disease as well as improving emotional support available to women. I welcome the breadth of the Target Ovarian Cancer Pathfinder Study, which identifies the challenges and opportunities of improving survival and quality of life for women with ovarian cancer. By highlighting the experiences of those living or working with ovarian cancer in the UK, there is a clear focus on where we may be able to make progress, both now and in the longer term."

Anyone who wants more information about ovarian cancer symptoms or about becoming involved in the continuing Target Ovarian Cancer Pathfinder Study can visit http://www.targetovarian.org.uk/ or call 020 7923 5470.