Key learning points:
- A woman’s journey to a diagnosis of ovarian cancer is often a difficult one
- Treatment and the heavy symptom burden are hard to endure and women experience significant levels of psychological distress, with an impact on their family too
- Primary care nurses have a role to play in providing psychological support throughout the cancer trajectory, beyond treatment to survivorship
Ovarian cancer is the sixth most common cancer in women in the UK and the most lethal of gynaecological cancers.1 The only proven method of prevention is removal of the ovaries and fallopian tubes before cancer develops. This strategy is not recommended for the general population, but is available for women who are known to be at increased risk because of a genetic predisposition. Ovarian cancer screening with the aim of reducing mortality through early detection is not available on the NHS, due to the lack of a convincing evidence base.
The generic term ‘ovarian cancer’ encompasses a group of cancers that includes the ovaries, along with primary cancers of the fallopian tube and peritoneum. It is not a single disease entity but different diseases with different risk factors, precursor lesions, patterns of spread, response to chemotherapy and prognosis.2,3 Most patients (80%) present with aggressive high-grade serous carcinoma at an advanced stage and overall five-year survival is less than 35%. This poor outcome reflects the high risk of recurrence after initial treatment. The psychological impact of this disease can be profound.
Risk factors and presentation
Healthcare professionals in primary care may only see one or two cases of ovarian cancer in their working life. The lifetime risk is 2% (England, Wales). A woman’s risk of developing ovarian cancer increases with age and most cases occur in women aged 65 years and older. The strongest risk factor is a family history of ovarian cancer and other cancers seen in inherited cancer syndromes (breast, bowel). Up to 15% of high-grade serous ovarian cancers are associated with a mutation in a tumour suppressor or mismatch repair gene. Lifestyle factors that reduce the total number of ovulations, such as use of the oral contraceptive pill and breast feeding, are associated with a lower risk.
Symptoms are non specific and are often mistaken as non-threatening by both patients and healthcare providers. Women diagnosed with ovarian cancer often have a history of presenting with vague symptoms including fatigue, constipation and back pain.4 The GP may have decided on a wait-and-see approach or the patient may have been referred to a non-gynaecological oncology specialist for investigation (typically gastrointestinal or bowel). Some women report feeling exhausted by the struggle to get a correct diagnosis. NICE guidelines list four red-flag symptoms that may indicate ovarian cancer when experienced persistently or frequently: abdominal bloating, loss of appetite, pelvic or abdominal pain, and urinary urgency or frequency.5
Diagnosis, treatment and management
The first test for ovarian cancer is the serum CA125 blood test and if the result is worrying, an abdominal or pelvic ultrasound scan to identify any suspicious mass. If ovarian cancer is suspected, women should be urgently referred to a specialist centre with expertise in the treatment and management of ovarian cancer, where the best outcomes are achieved.6 Formal diagnosis is based on cytology or histopathology.
Over the past 10 years, survival has improved because of changes in surgical practice to aim for zero residual disease and the use of platinum-based chemotherapy treatments. Unfortunately while the majority of women initially respond well to treatment, most will experience a recurrence of disease necessitating repeated surgery and cycles of chemotherapy that is no longer aimed to cure, but to improve the quality of life and palliation.
The journey to ovarian cancer diagnosis is often difficult. It may be abrupt following an emergency presentation because of advanced disease, or involve a protracted struggle for symptoms to be appropriately investigated. The initial psychological impact can range from one of shock in women who have been unconcerned about non-specific symptoms, to relief at confirmation of the reason, or disappointment and anger at missed opportunities to diagnose the cancer earlier when reported symptoms have been misattributed to other less serious conditions and delay may have compromised survival.
Extensive surgery with major tissue debulking and repetitive cycles of toxic chemotherapy are debilitating and challenging to endure. Younger women also have to contend with the loss of fertility and a premature menopause. The quality of women’s lives is often severely compromised by psychosocial issues including personal and family distress at the initial diagnosis, along with fear about future diagnostic tests.7 The prospect of a cure is rare and most face the very real possibility of dying.8 Disease progression is often accompanied by pain (peripheral neuropathy after intense chemotherapy) and the heavy symptom burden can lead to changes in body image (abdominal distention caused by ascites), difficulty eating and bowel obstruction, reduced mobility and activity, and a loss of confidence leading to social isolation.
Through all of this, a woman’s cherished relationships come under strain as the disease process interferes with her social roles as a mother (particularly if her children are young), wife, sister, grandmother and friend. Women face the loss of femininity, sexuality, loved ones and the trauma of confronting an early death.
Primary care nurses are a potential source of long-term psychological support to women diagnosed with ovarian cancer. While input from other specialist practitioners may come and go throughout the patient’s cancer journey, the primary care nurse remains a constant presence.
Women should be screened for psychological distress at the beginning of the cancer pathway. As part of a holistic needs assessment and care plan,9 women complete a brief assessment checklist at strategic points along the cancer trajectory, highlighting issues causing the greatest distress and immediate support needs. This may prompt further evaluation by a psychology member of the clinical team or clinical nurse specialist. Self-report measures, such as the Hospital Anxiety and Depression Scale (HADS),10 are used to identify women requiring specialist input from a psychologist or counsellor (trauma-focused cognitive behavioural therapy, mindfulness stress reduction).
More women are surviving and living beyond cancer and their psychological wellbeing is an integral part of a survivorship care plan. The primary care nurse is at the heart of this process11, offering proactive advice to enhance emotional support and practical strategies for dealing with stress and low mood, difficulty sleeping, lethargy and a lack of concentration. Encouraging women to set goals for the future can restore a measure of self-control that is integral to a sense of security and self-esteem. The simple step of signposting women to further sources of information (Cancer Research UK, Citizens Advice) and support (Relate and charity-run helplines for ovarian cancer) can also be helpful.
A one-size-fits-all approach is unlikely to achieve the maximum benefit.12 Interventions must accommodate women’s innate preferences for emotional support.
Early experiences of receiving emotional support during infancy form a template for preferences in later adult life. Individuals can be broadly categorized as secure (60% of the population) or insecure in their willingness to seek support. The securely attached feel comfortable asking for support and are confident it will be given. This contrasts with the insecurely anxious, who crave support but worry it will not be forthcoming, and the insecurely avoidant who feel most comfortable with emotional distance and self-reliance. More anxiously attached women may welcome frequent short contact and an opportunity for intense emotional expression. The compulsively self-reliant avoidant woman may feel more comfortable with interpersonal distance and less frequent contact, and for it to be conducted by telephone rather than face to face. Psychological interventions are likely to be most effective when they are tailored to these differences.13
Primary care nurses play a key role in linking the care provided by GP practices, hospital-based oncology and palliative care, along with coordinating community-based services. Developing a consistent approach to managing the psychological impact of ovarian cancer can be achieved through good communication among healthcare professionals working as a team and sharing insights into patients’ support needs.
Cancer is set to increase in an ageing population. Primary care nurses will need education and training to manage the consequences of the disease and its treatment. The Macmillan toolkit is a useful online resource (www.rcgp.org.uk/coc). A body of research is developing to provide the evidence base to design clinical practice guidelines on psychological interventions.14 It is hoped that this work, along with a better understanding of the sub-types of ovarian cancer and progress in biomarker discovery, will lead to earlier diagnosis, improved survival and a better quality of life for those affected by ovarian cancer.
1. Cancer Research UK. Ovarian Cancer Statistics. cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/ovarian-cancer Accessed 29 September 2016
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3. Prat J, Oncology FCoG. Staging classification for cancer of the ovary, fallopian tube, and peritoneum. Int J Gynaecol Obstet 2014;124:1-5.
4. Goff BA, Mandel LS, Melancon CH et al. Frequency of symptoms of ovarian cancer in women presenting to primary care clinics. JAMA 2004;291:2705-12
5. NICE. CG122. Ovarian cancer: recognition and initial management. Clinical guideline. 2011. nice.org.uk/guidance/CG122 Accessed 29 September 2016
6. Vernooij F, Heintz P, Witteveen E et al. The outcomes of ovarian cancer treatment are better when provided by gynecologic oncologists and in specialized hospitals: a systematic review. Gynecol Oncol 2007;105:801-12
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8. Howell D, Fitch MI, Deane KA. Impact of ovarian cancer perceived by women. Cancer Nurs 2003;26:1-9
9. Macmillan. Holistic Needs Assessment and Care Planning.
macmillan.org.uk/aboutus/healthandsocialcareprofessionals/macmillansprogrammesandservices/recoverypackage/holisticneedsassessment.aspx Accessed 29 September 2016
10. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983;67:361-70
11. Harker N. Supporting patients living with and beyond cancer in primary care. Nursing Practice 2016;27:431-4
12. Hunter J, Maunder R. Improving Patient Treatment with Attachment Theory. Springer, 2016
13. Rost AD, Wilson K, Buchanan E et al. Improving psychological adjustment among late-stage ovarian cancer patients: examining the role of avoidance in treatment. Cognitive and Behavioral Practice 2012;19:508-17
14. Linden D, Love P, Bowman E. Managing the consequences of cancer in primary care. British Journal of General Practice 2016;66:348-9