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Ovarian cancer is the deadliest of gynaecological cancers with over 4,000 women dying from the disease in the UK each year.3 Although survival rates have improved in recent years, they still lag behind those of other countries and while it is true that overall more people now survive cancer than die from it, this is far from the case when it comes to ovarian cancer.4

Target Ovarian Cancer was founded in 2008 to change this. One of the charity’s earliest acts was to carry out the first Pathfinder, to identify what was working and what needed to change. Since that first Pathfinder we have seen:

  • National guidelines setting out the diagnostic and initial pathway for women with possible symptoms of ovarian cancer.
  • The piloting of government funded symptoms awareness campaigns for ovarian cancer.
  • New drugs for the treatment of ovarian cancer, particularly olaparib (Lynparza®) and bevacizumab (Avastin®).
  • The introduction of genetic testing for all women with ovarian cancer who are at risk of carrying a BRCA mutation.

Pathfinder is unique in having charted the wider ovarian cancer landscape throughout this time, gauging women’s experiences, public awareness, GP knowledge and clinical practice.

Among other issues, the two previous Pathfinders identified difficulties accessing diagnostic tests, low GP awareness of the symptoms of ovarian cancer and poor access among women with ovarian cancer to clinical trials. Target Ovarian Cancer responded by campaigning for, and securing, a government commitment on diagnostic tests. The charity invested in GP education, with over one in three GPs having now undertaken one of Target Ovarian Cancer’s accredited training modules. Finally, the charity launched the award winning Ovarian Cancer Clinical Trials Information Centre to ensure all women, wherever they live in the UK, have access to reliable information on the latest trials.

Pathfinder 2016 shows real improvement in certain areas. Although still low, there has been a noticeable rise in awareness of the key symptom of bloating. Long held myths around the challenges of diagnosing ovarian cancer, including the mistaken belief that it is a ‘silent killer’, are slowly being broken down among GPs. There is now much better access to diagnostic tests and more women are receiving written information about their diagnosis and treatment.

This progress is also reflected in the wider statistics and reporting, which has improved significantly with the formation of the National Cancer Registration and Analysis Service and its predecessor the National Cancer Intelligence Network. Crucially, the number of women with ovarian cancer diagnosed following an emergency presentation (typically Accident and Emergency) has fallen from 31 per cent at the time of the first Pathfinder to 26 per cent in the most recent figures.5

Finally, we can see the change in women’s chances of surviving this disease. Of those women diagnosed in 2016, 500 more will survive five years or longer than when we commissioned the first Pathfinder in 2009.6

However, much more needs to be done, urgently, and Pathfinder 2016 shows where action is required.

Diagnosing women sooner

If diagnosed at the earliest stage (Stage I), up to 90 per cent of women with ovarian cancer will survive five years or more, yet currently nearly two thirds of women are diagnosed once the cancer has already spread (Stage II-IV).7,8

Improving early diagnosis requires a two pronged approach. The first is ensuring women know the symptoms to look out for; the second is that GPs have the knowledge and the support to refer women promptly.

Awareness of bloating as a symptom of ovarian cancer has risen among women since the first Pathfinder, but this is beginning to level off with just 20 per cent able to name bloating as a symptom of ovarian cancer when asked in 2016.

Among GPs, attitudes towards ovarian cancer are shifting, but 44 per cent continue to falsely believe that symptoms only present in the later stages of the disease. In contrast, of the women responding to our survey, of those diagnosed with either Stage I or Stage II (early stage) ovarian cancer, 86 per cent experienced at least one of the symptoms recognised in national guidelines, showing it is a far from silent disease.

Other cancers have seen significant improvements following the introduction of national screening programmes. However, with the recent findings of the UK Collaborative Trial of Ovarian Cancer Screening this now looks unlikely in the immediate future for ovarian cancer.9

If we are to diagnose more women sooner, action is needed on improving awareness of the symptoms of ovarian cancer among women in the general population and GP training.

Action

National awareness campaigns that include the symptoms of ovarian cancer in England, Northern Ireland, Scotland and Wales to ensure women know the symptoms to look out for and the importance of going to their GP.

 

Action

Target Ovarian Cancer to double the number of GPs who have completed accredited training on ovarian cancer.

Supporting women through treatment

While the vast majority of women diagnosed with ovarian cancer are assigned a Clinical Nurse Specialist (CNS), nurses are becoming increasingly stretched and unable to spend the time they want with women.

Large numbers of women reported unmet medical needs, including managing the side effects of chemotherapy, and very few women are receiving any support around needs such as body image and intimacy. 37 per cent of nurses are unable to fully meet all of women’s medical needs, such as helping with symptom control, and 53 per cent are unable to meet women’s wider needs.

Only 36 per cent of women with ovarian cancer said anyone involved in their treatment had talked about their mental health with them. This is despite the fact that 80 per cent of women reported experiencing mental ill health as a result of their diagnosis.

If all women are to receive the support they need through treatment, investment is needed in CNSs to enable them to spend the time they want, and that women need, supporting women with ovarian cancer.

Action

For the NHS to honour the commitment in the new cancer strategy in England for all people with cancer to have access to a Clinical Nurse Specialist and for an equivalent commitment to be made in Northern Ireland, Scotland and Wales.

 

Action

Target Ovarian Cancer to invest in new services and support to help meet the wider needs, including mental health and sexuality, of women with ovarian cancer.

Supporting women through recurrence

53 per cent of women with ovarian cancer reported that no one discussed the possible symptoms of recurrent ovarian cancer with them. Of those women whose cancer had returned, fewer received written information than when initially diagnosed and women were less likely to have their case discussed by the Multi-Disciplinary Team responsible for their treatment.

This reflects the lack of guidelines for recurrent ovarian cancer for the majority of women with ovarian cancer living in the UK. While guidelines in Scotland cover treatment for recurrent disease, those covering the remainder of the UK address only the initial diagnosis, surgery and first round of chemotherapy treatment. 

Action is needed to develop a clear treatment pathway for all women with recurrent ovarian cancer wherever they live in the UK.

Improving treatment

Pathfinder helps measure women’s experiences, and maps out both challenges and progress in awareness and diagnosis. However, clinical data is needed to map women’s journeys through treatment, to help demonstrate what works and what doesn’t and where standards are being met and where they are not.

To ensure all women are receiving the right treatment at the right hospital, we need an ovarian cancer audit in each of the four nations.

Action

An ovarian cancer audit in England, Northern Ireland, Scotland and Wales mapping the diagnostic and treatment pathway for all women with ovarian cancer.

 

Action

The National Institute for Health and Care Excellence to develop clinical guidelines for recurrent ovarian cancer.

Finally, while not something directly addressed in Pathfinder itself, if we are to see more and better treatment options available to women with ovarian cancer, we also need to see more investment in research. While Target Ovarian Cancer has invested nearly one million pounds in research in recent years, overall levels of investment have fallen, jeopardising the treatments of tomorrow.10

Pathfinder 2016 shows that steps have been taken, but we are still only at the start of the journey we all must go on to achieve the transformation in diagnosis and treatment of ovarian cancer that is so clearly needed. 

Professor Michael Peake
Chair, Pathfinder 2016 Advisory Panel
Clinical Lead for the National Cancer Registration and Analysis Service

Annwen Jones
Chief Executive, Target Ovarian Cancer

Thank you

Target Ovarian Cancer would like to thank The Peter Sowerby Foundation whose kind generosity made this research possible.

We would also like to thank all those who took the time to complete the surveys that make up Pathfinder 2016; we could not have done it without you.