Understanding the symptoms and acting early can save hundreds of lives when it comes to treating ovarian cancer. Here, the author looks at the challenges and emphasises the need for swift and effective diagnosis
Dr Sharon Tate, Head of Primary Care Development at Target Ovarian Cancer
Diagnosis and treating ovarian cancer is a major challenge for health care professionals, but perhaps none more so than those working in primary care. Survival rates for ovarian cancer in the UK are amongst the lowest in Europe. The five-year survival rate is currently just 43%,1 yet if diagnosed at the earliest stage, we could see this figure change to 90%.2
Due to challenges around awareness of symptoms, access to diagnostic tests and simple lack of communication on all levels, more than one third of women are diagnosed following an emergency admission.3
So, how can we change this?
Symptoms and diagnosis
It is a myth that ovarian cancer is asymptomatic or a ‘silent killer’. The majority of women with ovarian cancer experience symptoms prior to their diagnosis including persistent bloating, pelvic/abdominal pain, feeling full and/or loss of appetite, increased urinary urgency and/or frequency. Symptoms will be persistent, frequent and new; happening more than 12 times in a month.4 However, low awareness of the significance of these symptoms is leading many women to delay visiting their GP.
Only 3% of women in the general public are very confident that they would be able to identify a symptom of ovarian cancer.5 Among women diagnosed with ovarian cancer, nearly half wait a month or longer between experiencing symptoms and visiting their GP, and of these 11% never visited their GP.6
Symptoms can be very similar to gastrointestinal complaints, such as Irritable bowel syndrome (IBS), and other common condition, such as ovarian cysts or urinary tract infections. This makes it hard for GPs to diagnose, and delays of six months or more are not uncommon before a final diagnosis is made. To give some context: over 50% of the general population report bloating, and it is estimated that the majority of women attending primary care will have a symptom which could potentially indicate ovarian cancer. It is therefore vital that GPs are including ovarian cancer in their differential diagnosis if women are experiencing symptoms persistently and frequently – over 12 times in a month.
The difference in descriptive language used by medical professionals and patients can often slow down diagnosis. Women often use the term ‘bloating’ to describe the symptoms they are experiencing, including fluctuating bloating and abdominal distension, but in the medical profession ‘bloating’ is only used to describe fluctuating bloating and discomfort.7 Persistent bloating and/or abdominal distention are key symptoms of ovarian cancer, whereas fluctuating bloating is not. A major challenge for healthcare professionals is teasing out and understanding the exact nature of symptoms.
It is also important to remember the key role proper communication with the patient can play. Often women presenting with the symptoms of ovarian cancer experience a protracted diagnosis and are frequently referred to gastroenterology and urology for investigation before being appropriately referred to gynaecology or oncology. The challenge here for GPs is to identify cases of ovarian cancer from cases of non-malignant disease, and therefore speed up the referral process. GPs should look for symptoms that are new for the women and happen frequently and persistently – over 12 times in a month. It is therefore vital that cases that raise suspicion should raise a request for a CA125 test.
Raised CA125 can be a sign of ovarian cancer, but it can also be caused by benign gynaecological conditions such as endometriosis, or non-malignant disease such as sarcoidosis or cirrhosis, or even by pregnancy. It is therefore necessary to refer women with a CA125 of 35 IU/ml or greater for an ultrasound of their abdomen and pelvis and this should take place within 2 weeks of receiving the CA125 test results. Following the ultrasound, if women have a risk of malignancy index (RMI I) score of 250 or more, they should be referred to a specialist gynaecological cancer multidisciplinary team. For those women with a normal CA125, or a CA125 greater than 35 IU/ml but a normal ultrasound, they should be advised to return to their GP for reassessment within one month if their symptoms persist.8
Access to diagnostics
Once women do approach their GP, it is vital that they are referred for the appropriate diagnostic tests and placed on the correct patient pathway.
Guidance issued by NICE recommends that women who experience symptoms 12 times a month or more should first be given a serum CA125 test, particularly if they are aged 50 or over. Raised CA125, i.e. >35 IU/ml should prompt a referral for pelvic and abdominal ultrasound.9 However, a GPonline freedom of information request carried out in 2014 found that GPs in 27% of CCGs had no access to ultrasounds to test for ovarian cancer.10
There is also an urgent need for progress in ovarian cancer treatments, and therefore a need for more research funding. To put this into context: if we matched the achievements made in breast cancer in the last 20 years, over 3,000 more women would survive each year.11 Currently, most women do develop resistance to chemotherapy treatments12 which once again reinforces the need to develop new life extending treatments.
Early diagnosis of ovarian cancer saves lives. Shockingly, over a thousand women die each year within two months of diagnosis, and they represent half of all those who die within the first year.13
In order to reduce mortality and improve survival chances for women with ovarian cancer it is imperative that we reduce the number of women diagnosed following an emergency presentation and drive up the number diagnosed via a GP referral route. To achieve this we must address fundamental issues of low symptoms awareness, late presentation and poor access to diagnostics. Opportunities to drive positive change include:
Be Clear on Cancer awareness campaigns
Ovarian Be Clear on Cancer awareness campaigns are vital if we are to improve knowledge ofsymptoms among the general public and encourage patients to visit their GP with their symptoms concerns. An interim report published by Public Health England has clearly demonstrated the positive impact awareness campaigns can have on public knowledge of ovarian cancer symptoms and on health seeking behaviours. In fact, the ovarian cancer campaign was the most successful of all the regional pilots in the Be Clear on Cancer pilots. Overall, the campaign saw a 40% increase in confidence in the knowledge of symptoms, and 9 in 10 women agreed that the advertising made them more likely to take action.14 Raising awareness of the symptoms among women is vital, as is funding a nationwide campaign to continue this positive start.
Improved access to diagnostics
Ensure all GPs have direct access to urgent nonobstetric ultrasound and are able to refer patients for CA125 serum tests.
Implement clinical guidelines
In April 2011 the National Institute for Health and Care Excellence (NICE) published the first clinical guideline on ovarian cancer, later followed by the NICE Quality Standard for Ovarian Cancer.15 The current guidance recommends referring a woman urgently (within the national target for England and Wales of two weeks) if a physical examination identifies ascities and/or a pelvic mass, as well as using the CA125 test in women who are showing symptoms. It is vital that these guidelines are implemented across all levels of care.
Continuing Professional Development (CPD)
Target Ovarian Cancer has worked in partnership with leading CPD providers BMJ Learning, RCGP e-Learning and Pulse Learning to produce a suite of free online
educational resources which are designed to give GPs a detailed overview of ovarian cancer symptoms and advice on managing symptomatic women in primary care. All the modules can be accessed through http://www.targetovariancancer.org.uk/health-professionals/gps/get-trained
Decision support tools
Macmillan Cancer Support and BMJ Informatica have developed an electronic cancer decision support (eCDS) tool, which integrates with the general practice’s desktop software producing a risk assessment score based on symptoms data. The eCDS supports clinical practice and help GPs consider whether or not to refer a patient for diagnostic tests or a referral via the two week wait. Having piloted the tool with over 550 GP practices Macmillan are now working with the different GP software providers to develop versions of the tool.16
It is unacceptable that mortality among women with ovarian cancer is so high, especially in the early weeks following diagnosis. Emergency presentation and advanced age are key risk factors for short-term mortality, significantly contributing to the one thousand lives lost each year immediately following diagnosis. To improve outcomes for women with ovarian cancer GPs need to be supported to develop their knowledge of symptoms so they can consider ovarian cancer in the differential diagnosis, and we need to empower women to communicate their concerns more effectively by educating them in the signs of ovarian cancer.
1. Cancer Research UK [online]. http://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/ovarian-cancer, Accessed 2 Sep 2014.
2.Cancer Research UK [online]. http://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/ovarian-cancer/survival#undefined Accessed 29 Jul 2014.
3. Short Term Ovarian Cancer Mortality data briefing. National Cancer Intelligence Network. 2013. Accessed 29 Jul 2014.
4. Target Ovarian Cancer Pathfinder Study 2012. Ipsos Mori. http://www.targetovariancancer.org.uk/sites/default/files/Research/Pathfinder-Study-2012-full-ipsos-mori-report-Target-Ovarian-Cancer.pdf 15 Jan 2014, page 15.
5. Women's knowledge and beliefs regarding breast cancer. Grunfeld et al. http://www.nature.com/bjc/journal/v86/n9/full/6600260a.html#tbl3 British Journal of Cancer (2002) 86, 1373–1378. Accessed 2 Sep 2014.
6. Bankhead C, Collins C, Stokes-Lampard H et al. Identifying the symptoms of ovarian cancer: a qualitative and quantitative study. BJOG: An International Journal of obstetrics and Gynaecology 2008.
8. Target Ovarian Cancer Pathfinder Study 2012. http://www.targetovariancancer.org.uk/sites/default/files/Research/Pathfinder-Study-2012-full-ipsos-mori-report-Target-Ovarian-Cancer.pdf Ipsos Mori. 15 Jan 2014,
9.Direct Access to Diagnostic Tests for Cancer, Best Practice Referral Pathways for General Practitioners, Department of Health, April 2012
10. Target Ovarian Cancer Pathfinder Study 2012.http://www.targetovariancancer.org.uk/sites/default/files/Research/Pathfinder-Study-2012-full-ipsos-mori-report-Target-Ovarian-Cancer.pdf Ipsos Mori. 15 Jan 2014, page 39
11. Cancer survival in Australia, Canada, Denmark, Norway, Sweden, and the UK, 1995—2007 (the International Cancer Benchmarking Partnership): an analysis of population-based cancer registry data. Coleman et al. The Lancet, Volume 377, issue 9760, http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(10)62231-3/fulltext pages 127 - 138, 8 Jan 2011. Accessed 29 Jul 2014.
12. Cancer survival in Australia, Canada, Denmark, Norway, Sweden, and the UK, 1995—2007 (the International Cancer Benchmarking Partnership): an analysis of population-based cancer registry data. Coleman et al. The Lancet, Volume 377, issue 9760, http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(10)62231-3/fulltext pages 127 - 138, 8 Jan 2011. Accessed 29 Jul 2014.
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