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Over 6,000 women are diagnosed with ovarian cancer in England every year. In recent years there have been increasing efforts to drive forward early diagnosis and ensure more women with ovarian cancer survive the disease:

  • The first government funded ovarian cancer awareness campaign took place in 2013 with a local Be Clear on Cancer pilot. This was followed by a regional campaign in 2014. A further regional pilot, taking a new approach grouping symptoms by body site, rather than type of cancer, ran in 2017 and featured bloating as a key symptom.
  • In 2013 the National Institute for Health and Care Excellence recommended all women with non-mucinous epithelial ovarian cancer be offered genetic testing for the BRCA gene and in 2015 this was incorporated into NHS England commissioning guidelines.
  • In 2011 bevacizumab (Avastin©) became available through the Cancer Drugs Fund for the first line treatment of some women with advanced ovarian cancer and in 2016 olaparib (Lynparza©) was approved by the National Institute for Health and Care Excellence as maintenance treatment for relapsed BRCA-mutated, platinum sensitive ovarian cancer in women who have had three or more courses of chemotherapy.

However, while survival rates have improved in recent years, they still lag behind those for other cancers and nearly 3,500 women die of the disease in England every year.

It is clear more needs to be done and this is therefore a critical time to be publishing the first Pathfinder England, looking at women’s awareness of ovarian cancer, their experience of diagnosis and treatment and GP knowledge.

Pathfinder England is based on three different surveys:

  • Women in the general population
  • Women with ovarian cancer
  • Practising GPs

The report is structured around the patient pathway. It begins with awareness and diagnosis, before moving on to treatment and support. It also has sections looking at genetics, clinical trials and mental wellbeing and body image to present a more complete picture.

While recognising the work that has been done already to improve the diagnosis and treatment of ovarian cancer, Pathfinder England sets out what needs to happen next to transform outcomes for women living with ovarian cancer in England today, and those diagnosed tomorrow.

Pathfinder England

The top three actions identified by Pathfinder England are:

  • A national Be Clear on Cancer campaign that includes the symptoms of ovarian cancer so women know the symptoms to look out for and the importance of going to the GP.
  • NHS England to ensure all women with ovarian cancer are aware of where to go for support, including counselling.
  • An ovarian cancer audit in England mapping and evaluating the diagnostic and treatment pathway for all women with ovarian cancer.

Key findings from Pathfinder England

Symptoms awareness

Women in England have an alarmingly low awareness of ovarian cancer symptoms - just one in five can name bloating as one of them. This leaves women without knowledge that could save lives. Awareness of all four main symptoms – abdominal bloating, tummy pain, difficulty eating or feeling full and needing to wee more often or urgently – is similarly low, while one in four women (30 per cent) wrongly assumes that cervical screening also detects ovarian cancer

 21% of women are able to name bloating as a symptom of ovarian cancer  30% of women incorrectly believe cervical screening also detects ovarian cancer

Diagnosis

43% of women visit their GP 3 times or more before being referred for diagnostic tests43 per cent of women subsequently diagnosed with ovarian cancer visited their GP three times or more before being referred for diagnostic tests and 46 per cent of women were initially referred for tests for something other than ovarian cancer.