Information for GPs

Why ovarian cancer?

Around 5,900 women are diagnosed with ovarian cancer in England each year – around 4,900 (more than 80%) are aged 50 and over.[1]

Outcomes in Britain are worse than those in some European countries and recent estimates suggest that around 500 deaths from ovarian cancer could be avoided each year if survival rates matched the best in Europe.

More than 90% of women diagnosed with the earliest stage ovarian cancer (stage I) survive their disease for at least five years. This figure is around 5% for those women diagnosed with the most advanced stage disease (stage IV).[2]

Research has shown that even women with early stage disease can experience symptoms.

References

1. Data provided by the Office for National Statistics on request, July 2013. Number of cases of ovarian cancer (ICD-10: C56-C57) diagnosed in England in 2011 (for age groups, the annual average number of cases between 2009 and 2011 is given. Similar data can be found here: http://www.ons.gov.uk/ons/rel/vsob1/cancer-statistics-registrations--england--series-mb1-/index.html

2. Five-Year Stage-Specific Relative Survival Rates, Adults (Ages 15-99), Anglia Cancer Network 2004-2008, Eastern Cancer Registry and Information Centre (ECRIC). Personal communication. www.ecric.org.uk

Why now?

The Be Clear on Cancer campaign is part of Improving Outcomes: A Strategy for Cancer. This outlines the ambition to prevent 5,000 deaths per year, by 2014/2015, which would bring survival in England up to the average for Europe.

In line with the NHS Outcomes Framework, the CCG Outcomes Indicator Set 2013/14 highlights cancer survival as a key area for improvement under indicator one: preventing people from dying prematurely.

The Be Clear on Cancer campaigns aim to drive earlier diagnosis of those cancers where the largest number of ‘avoidable deaths’ have been identified, when England’s survival rates are compared with the best in Europe.

Only 26% of ovarian cancers are diagnosed via the 2 Week Wait referral pathway. Research shows that the majority of patients with this type of cancer present as emergencies [1]. This may result in poorer outcomes for women with ovarian cancer, as they are more likely to be diagnosed at a late stage.

For ovarian cancer, more than six in 10 women are diagnosed with stage III or IV disease, and only around three in 10 are diagnosed at the earliest stage [2]. Increased diagnosis by primary care could reduce emergency presentations and improve the prognosis for these patients.

The Public Health Outcomes Framework includes indicators on proportion of cancers diagnosed at stages 1 and 2. The aim of the Be Clear on Cancer campaigns is to get people with appropriate symptoms to present earlier and, where appropriate, referred on promptly for investigation.

Find out more about the background to the campaign.

1. Data Supplied by Public Health England using Routes to Diagnosis 2006-2013.

2. ICBP Module 1 Working Group; (2012) Stage at diagnosis and ovarian cancer survival: Evidence from the International Cancer Benchmarking Partnership. Gynecologic oncology, 127 (1). pp. 75-82. ISSN 0090-8258 DOI: 10.1016/j.ygyno.2012.06.033

Is there any evidence this campaign will work?

Results from local pilot campaigns, which ran from January to March 2013, showed:

Confidence in knowledge of symptoms of ovarian cancer increased significantly in the Anglia/Essex pilot area after the campaign, up from 20% to 31% of people saying they were ‘very/fairly confident’
57% of women agreed that ‘the advertising told me something new’

The approval of CA125 as a diagnostic test for ovarian cancer within primary care and work to support direct access to non-obstructive ultrasound has made diagnosing and excluding ovarian cancer simpler for GPs. This adds to the timeliness of this campaign.

When and where will the regional ovarian cancer pilot campaign appear?

The campaign targets all women over 50, the age group most at risk of developing ovarian cancer, and their friends and family.

The regional campaign ran from 10 February until 16 March 2014, highlighting the main message: Feeling bloated, most days, for three weeks or more could be a sign of ovarian cancer. Tell your doctor.

This key message was promoted through a range of different channels across the North West TV region, including:
• Regional television
• Regional radio
• Regional press

The campaign also included PR and face-to-face events in various locations across North West England. They took place in public areas like shopping centres. A schedule of events with more details of dates is available to download.

Download event schedule

Why focus on the symptom of 'persistent bloating'?

Focusing on just one key symptom keeps the message simple and direct. A panel of experts and clinicians advised that, of the symptoms highlighted in the NICE guidelines, persistent abdominal distension (‘bloating’) was the key possible sign of ovarian cancer.

We know that people delay going to see their GP for a variety of reasons. They may not realise their symptoms are serious, worry about wasting the GP’s time or be embarrassed. When tested with the target audience (women aged 50 and over), women felt the campaign provided reassurance that they should see their GP if they had experienced persistent bloating.

Why does the campaign say 'most days, for three weeks or more'?

It is essential to highlight the importance of persistence and frequency of bloating as part of the campaign message. When tested with the target audience, women felt the campaign needed to explain what was meant by ‘persistent’. They asked for clarity – to know how long they should wait before going to see their GP.

Be Clear on Cancer uses everyday language, so the description in the NICE guidelines (more than 12 times per month) was reworded to reflect how women would describe persistent bloating.

But continue to use your clinical judgment when women come to see you with symptoms of bloating to determine whether it is persistent abdominal distension.

Who is most at risk?

Women:
• aged over 50 – the risk of developing ovarian cancer increases with age.
• who are overweight or obese.
• who smoke are at higher risk of developing some types of ovarian cancer.
• using hormone replacement therapy (HRT), particularly oestrogen-only HRT. The longer women take HRT, the more the risk may increase.
• with a family history of ovarian or breast cancer.

Why is there no explicit mention in the campaign advert that this campaign is targeted at women aged over 50?

Although over 80% [1] of ovarian cancers occur in women over 50, we do not want to discourage those who fall under this age group from going to their GP with persistent bloating.

The campaign leaflets and web copy will use case studies of women aged over 50. Where possible, advertising in the media will also target women over 50. The campaign materials were specifically tested with women in this age group.

Reference

What impact will this campaign have on my practice?

You may see more women coming to your practice with the symptom of persistent bloating, but it is anticipated that this will be manageable.

An average of 28 cases of ovarian cancer are diagnosed in each clinical commissioning group (CCG) per year. To put it into perspective, an average of around 2 cases of ovarian cancer are diagnosed in a clinical commissioning group every month [1]. Analysis of GP attendance data during the local pilots in early 2013 showed a 22% increase. This equates to 0.04 additional patients, per practice, per week.

Whilst bloating may be a symptom seen commonly in the primary care setting, persistent abdominal distension (women often refer to this as 'bloating') present most days for three weeks or more is unusual.

Research shows that it is the persistency and frequency of bloating that helps to distinguish it from less serious causes. Women may use the term ‘bloating’ to describe both up and down swelling of the abdomen, and abdominal distension. Ask women to explain their bloating in more detail and continue to use your clinical judgement to discern those who are at higher risk and warrant investigation.

It may take a few weeks for you to notice the impact of the campaign and any additional patients requesting appointments.

References

1. Number of cases of ovarian cancer (ICD-10: C56-C57) diagnosed in England in 2011 divided by the number of CCGs (211). Calculated by the Statistical Information Team at Cancer Research UK using data provided by the Office for National Statistics on request, July 2013. Similar data can be found here: http://www.ons.gov.uk/ons/rel/vsob1/cancer-statistics-registrations--england--series-mb1-/index.html

We have been criticised for making too many referrals in the past, is it any different now?

Early diagnosis of cancer is a very high priority for the Government. That is why the Improving Outcomes: A Strategy for Cancer, which was published in January 2011, put an emphasis on improved GP direct access to key diagnostic tests for patients for whom the two week wait urgent referral pathway is not appropriate but symptoms require further investigation (MRI brain to support diagnosis of brain cancer, non-obstetric ultrasound scan to support diagnosis of ovarian cancer, chest x-ray to support diagnosis of lung cancer and flexible sigmoidoscopy to support colorectal cancer) to support the diagnosis of a number of cancers.

Central to the plans outlined in the Cancer Strategy is an investment of more than £450 million of additional funding over four years to achieve earlier diagnosis. This funding is designed to meet the costs of additional diagnostic tests and treatment and to support awareness raising activities.

Patients urgently referred for suspected cancer by their GP still have a right to be seen within two weeks under the NHS Constitution.

What impact will the campaign have on other local services?

NHS Improving Quality, part of NHS England, will be working with Strategic Clinical Networks to help ensure the NHS is prepared for this regional campaign. Trusts have been informed about the campaign and advised to plan for anticipated increases in referrals, diagnostic tests and treatment.

Download NHS tripartite letter (campaign announcement)

Do activities of this kind cause unnecessary anxiety?

Be Clear on Cancer materials promote the potential benefits of early presentation and reassure people that the symptom is unlikely to be cancer, but that it’s best to get it checked. The tone is balanced, practical and reassuring.

There was overwhelming support from the public following the first national bowel cancer campaign in January 2012. More than nine out of 10 people (92%) and 89% of GPs said it is important for the Government to be communicating these kinds of messages.

What are the cancer statistics for my area?

You can find out more about the cancer statistics in your area using the Public Health England's National General Practice Profiles.

Take a look at ovarian cancer statistics for your area, and compare them with other places in England, using Gynaecological Cancer Profiles.

What do I need to do as a GP in the pilot area?

GPs have a pivotal role as the gatekeepers to investigation and referral, but the task is a difficult one as the number of new diagnoses encountered each year is typically very small. To put it into perspective, an average of around two cases of ovarian cancer are diagnosed in a clinical commissioning group every month [1].

For ovarian cancer, more than six in 10 women are diagnosed with stage III or IV disease, and only around three in 10 are diagnosed at the earliest stage [2]. We also know from routes to diagnosis work conducted by Public Health England that 29% 3 of ovarian cancers present as emergencies. So there is a clear role for GPs in the early diagnosis of ovarian cancer.

We hope you will see an increase in the number of people presenting with persistent bloating as a symptom and continue to use your clinical judgement.

The NICE guidelines recommend carrying out diagnostic tests, including measuring serum CA125 in primary care and arranging an ultrasound scan of the abdomen and pelvis as appropriate.

Remember, if physical examination identifies ascites and/or a pelvic or abdominal mass (which is not obviously uterine fibroids) you can refer urgently under the two-week wait referral system.

As highlighted in the NICE Quality standard for ovarian cancer, women with normal CA125, or raised CA125 but normal ultrasound, with no confirmed diagnosis but continuing symptoms, should be reassessed by their GP within one month.

So, as a GP in the pilot region, you can:

1. Talk about ovarian cancer symptoms. This campaign may prompt women who’ve previously ignored persistent abdominal distension to come and see you. They may worry they’re wasting your time, be afraid of what you might discover or find it difficult to communicate their symptoms. Remind female patients of the key signs and symptoms to look out for and reassure them that they wouldn’t be wasting your time to get them checked out.

2. Make the most of available support. Useful resources include:
• NICE guidelines specifically for ovarian cancer
• RCGP Online Learning, ‘Bloating and Other Abdominal Symptoms: Could it be Ovarian Cancer’
• Tools for GPs, ‘Direct access to diagnostic tests for cancer: best practice referral pathways for general practitioners’
• Cancer decision support tools, including an ovarian cancer risk assessment tool (RAT) and Qcancer;
• Take a look at ovarian cancer statistics for your area, and compare them with other places in England, using Gynaecological Cancer Profiles.
• The NHS and local authorities are being encouraged to work together to plan for this campaign. Your CCG may have a GP cancer lead who can give you further information relating to your local area.

3. Encourage your colleagues to support the campaign. Practice nurses, receptionists and practice managers all have an important role to play in this campaign. There’s a separate briefing sheet for nurses and practice managers. Ensure everyone is briefed, so they can support it.

References

1. Number of cases of ovarian cancer (ICD-10: C56-C57) diagnosed in England in 2011 divided by the number of CCGs (211).

3. Data Supplied by Public Health England using Routes to Diagnosis 2006-2013.