Cancer

Cancer is the most feared of diseases. Unsurprisingly, it causes considerable psychological distress in patients, families, carers, and often those health professionals who care for them. Only a minority of cancer patients develop psychiatric illness, but other psychologically and socially determined problems are common. These include unpleasant symptoms such as pain, nausea, and fatigue; problems with finances, employment, housing, and childcare; family worries; and existential and spiritual doubts. Well planned care that fully involves patients and their families can minimise these problems.

Psychological consequences

Though often dismissed as “understandable,” distress is a treatable cause of reduced quality of life and poorer clinical outcome. Some patients delay seeking help because they fear or deny their symptoms of distress. Presentation can be obvious, as depressed or anxious mood can manifest as increased severity of somatic complaints such as breathlessness, pain, or fatigue. Adjustment disorder is the commonest psychiatric diagnosis, and neuropsychiatric complications may occur. The risk of suicide is increased in the early stages of coping with cancer.

Depression

Depression is a response to perceived loss. A diagnosis of cancer and awareness of associated losses may precipitate feelings similar to bereavement. The loss may be of parts of the body (such as a breast or hair), the role in family or society, or impending loss of life. Severe and persistent depressive disorder is up to four times more common in cancer patients than in the general population, occurring in 10-20% during the disease.

“Distress is an unpleasant emotional experience of a psychological, social, or spiritual nature that may interfere with a patient's ability to cope with cancer and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fear to problems that can become disabling, such as depression, anxiety, panic, social isolation, and spiritual crisis”US National Comprehensive Cancer Network

Anxiety, fear, and panic

Anxiety is the response to a perceived threat. It manifests as apprehension, uncontrollable worry, restlessness, panic attacks, and avoidance of people and of reminders of cancer, together with signs of autonomic arousal. Patients may overestimate the risks associated with treatment and the likelihood of a poor outcome. Anxiety may also exacerbate or heighten perceptions of physical symptoms (such as breathlessness in lung cancer), and post-traumatic stress symptoms (with intrusive thoughts and avoidance of reminders of cancer) occasionally follow diagnosis or treatment that has been particularly frightening.

Challenges faced by people with cancer

• Maintaining activity and independence

• Coping with treatment side effects

• Accepting cancer and maintaining a positive outlook

• Seeking and understanding medical information

• Regulating the feelings associated with cancer experiences

• Seeking support

• Managing stress

Certain cancers and treatments are associated with specific fears. Thus, patients with head and neck cancers may worry about being able to breathe and swallow. Patients may develop phobias and conditioned vomiting in relation to unpleasant treatments such as chemotherapy.

Neuropsychiatric syndromes

Delirium and dementia may arise from brain metastases, which usually originate from lung cancer but also from tumours of the breast and alimentary tract and melanomas. Brain metastases occasionally produce psychological symptoms before metastatic disease is discovered. Certain cancers (notably cancers of the lung, ovary, breast, or stomach and Hodgkin's lymphoma) sometimes produce neuropsychiatric problems in the absence of metastases (paraneoplastic syndromes). The aetiology is thought to be an autoimmune response to the tumour.

Risk factors for psychiatric disorder

Patient

• History of psychiatric disorder

• Social isolation

• Dissatisfaction with medical care

• Poor coping (such as not seeking information or talking to friends)

Cancer

• Limitation of activities

• Disfiguring

• Poor prognosis

Treatment

• Disfiguring

• Isolating (such as bone marrow transplant)

• Side effects

Who becomes distressed?

The severity of emotional distress is more closely related to a patient's pre-existing vulnerability than to the characteristics of the cancer. Distress is also more likely to occur at specific points in a patient's experience of cancer:

Diagnosis—Investigation and diagnosis are particularly stressful and can cause shock, anger, and disbelief as well as emotional distress. These resolve without intervention in most patients, but especially high levels of distress at this time are predictive of later emotional problems. It can help if doctors explain that patients' feelings are expected and normal (“I would expect you to have times when you feel tearful and cannot get it out of your head”).

Issues to be considered in planning care

• Patient's and family's understanding of the illness and its treatment

• Patient's and family's understanding of help available

• Explanation of how symptomatic relief will be provided

• How the patient can be fully involved in care

• Who will be managing the treatment plan

• Routine and emergency contact arrangements

• Practical help in everyday activities

• Support at home—role of hospital and residential care

• Involving and supporting family and friends

During treatment—Treatment itself can be a potent cause of distress. It may involve hospital attendance but also unpleasant surgery, radiotherapy, or chemotherapy. Side effects include hair loss and disfigurement. Patients worry about whether treatment is working and are likely to become distressed at times of apparent treatment failure.

End of treatment—At the end of apparently successful treatment some patients can experience “rebound” distress associated with the fear that the cancer might recur or spread. The ending of a prolonged relationship with the cancer service staff can lead to a sense of loss and vulnerability. It is only at this time that some patients become fully aware of the impact of their cancer experience.

After treatment—Like those with other life threatening illnesses, patients who survive cancer may reorder their life priorities and experience psychological benefits including a greater appreciation of some aspects of their life. Others need help to overcome continuing worries, including preoccupation with loss and illness, a tendency to avoid reminders of cancer, and difficulties coping with intimacy, return to work, and fears of recurrence. Fear of recurrence can manifest as a form of health anxiety with misinterpretation of physiological sensations (such as believing that pain associated with a muscle strain represents a recurrence of cancer) and the anxious seeking of reassurance.

Recurrence—Patients who believe they have been cured (that is, those most likely to be surprised by recurrence) are at greater risk of severe distress if recurrence occurs. Most patients report recurrence of cancer as more distressing than receiving the initial diagnosis.

Terminal disease—About 40% of people who develop cancer will die as a result. The terminal phase commonly brings fear of uncontrolled pain, of the process of dying, of what happens after death, and of the fate of loved ones. Depression is common in the terminal phase, especially in those with poorly controlled physical symptoms.

Psychological care for cancer patients

In primary care	In specialist units
• Need for agreed local protocols	• Training in psychological aspects of care for all staff
• Multidisciplinary skills and resources	• Regular review of all individual treatment plans
• Individually agreed collaborative care for each patient	• Protocols for routine management of “at risk” patients (such as relapse after chemotherapy)
• Regular liaison with specialist units and local agencies	• Involvement of specialist nurses and other staff with psychological expertise
• Local training for all involved	• Access to psychiatrists and clinical psychologists with special interest in managing cancer  problems for consultation and supervision
	• Use of self help methods and voluntary agencies

Management

People with cancer benefit from care in which psychological and medical care are coordinated. Apart from the obvious benefits to quality of life, there is some evidence that encouraging an active approach to living with cancer can improve survival.

Questions for assessing patients' anxiety and depression

• How are you feeling in yourself? Have you felt low or worried?

• Have you ever been troubled by feeling anxious, nervous, or depressed?

• What are your main concerns or worries at the moment?

• What have you been doing to cope with these? Has this been helpful?

• What effects do you feel cancer and its treatment will have on your life?

• Is there anything that would help you cope with this?

• Who do you feel you have helping you at the moment?

• Is there anyone else outside of the family?

• Have you any questions? Is there anything else you would like to know?

Most of the psychological care of cancer patients will be delivered in primary care. As for all chronic illness, a multidisciplinary approach and management protocols that include psychological as well as medical assessment and intervention are required. These protocols need not be specific for cancer as the issues are common to many medical conditions. The important point is that the staff involved have the skills to address psychological as well as medical problems. The danger is that psychological care can be neglected by the medical focus on cancer treatment. A case manager, whether nurse or doctor, who can coordinate the often diverse agencies involved in a cancer patient's care can ensure that treatment is delivered efficiently.

Assessment

Depressive and anxiety disorders are often unrecognised. There is therefore a need for active screening by simply asking patients about symptoms of anxiety and depression. A self rated questionnaire such as the hospital anxiety and depression scale (HADS) may be helpful. Doctors should be aware that patients may be distressed because of factors unrelated to cancer.

Principles of treatment

• Sympathetic interest and concern

• A clearly identified principal therapist who can coordinate all care

• Effective symptomatic relief

• Elicit and understand patient's beliefs and needs

• Collaborative planning of continuing care

• Information and advice—oral and written

• Involve patient in treatment decisions

• Involve family and friends

• Early recognition and treatment of psychological complications

• Clear arrangements to deal with urgent problems

Treatment

Information—Doctors often underestimate the amount and frankness of information that most patients need and want. It is best given in a staged fashion with checks on patients' understanding and desire to hear more at each stage. Repetition and written information may be helpful. Summaries of agreed management plans have been found to improve patients' satisfaction and their adherence to medical treatment.

Useful sources of information

• National Comprehensive Cancer Network. Distress management guidelines (www.nccn.org/physician_gls/index.html)

• National Cancer Institute. Cancer.gov (www.cancer.gov/cancer_information/)

• Cancer BACUP (www.cancerbacup.org.uk)

• Cancer Help UK (www.cancerhelp.org.uk/)

• Macmillan Cancer Relief (www.macmillan.org.uk/)

• Cancer Research UK (www.cancer.org.uk)

• International Psycho-Oncology Society (www.ipos-aspboa.org/iposnews.htm)

Social support—Most patients will receive this from family and friends. They may, however, not want to “burden others” and consequently may need encouragement to use this support by talking about their illness. Additional support can be provided by specific cancer related services such as the primary care team and specialist nurses.

Addressing worries—Staff often find it most difficult to help patients who talk about worries that reflect the reality of cancer (such as, “I am going to die”). It is important to do so because this may help planning and may reveal misconceptions, such as the inevitability of uncontrolled pain, that can then be addressed by giving accurate information about methods of pain control.

Managing anxiety—Accurate information (such as which physical symptoms are due to anxiety and which are due to cancer) and practical help are important. Anxious patients can be helped by relaxation strategies, including breathing exercises. Severe persistent anxiety may merit the short term prescription of anxiolytic drugs such as diazepam.

Specialist treatments

• Antidepressant drugs

• Effective drug treatment of pain, nausea, and other symptoms

• Problem solving discussion

• Cognitive-behavioural treatment of psychological complications

• Joint and family interviews to encourage discussion and planning

• Group support and treatment

• Cognitive-behavioural methods to help cope with chemotherapy and other unpleasant treatments

Managing depression—Depressive disorders should be managed in the same ways as they are in patients without cancer. Discussion, empathy, reassurance, and practical help are essential. Antidepressants have been shown to be effective in patients with cancer in randomised trials, although surprisingly few trials have been conducted. If in doubt about what drug to choose or about possible interactions with cancer treatment, it is important to check with a pharmacist. Specialist psychological intervention, such as formal cognitive-behavioural therapy, may also be required to treat persistent depression or anxiety.

Referral decisions

• What specialist expertise in psycho-oncology is available at my local cancer centre or unit?

• What has helped when this patient has had problems before?

• Are there local cancer support groups that could help?

• Does this patient have problems that might benefit from specialist psychological or psychiatric intervention?

• Does this patient want to be referred to specialist services?

• Does this patient prefer individual or group based psychological intervention?

Specialist referral

Structured psychological interventions (such as psycho-education and cognitive-behavioural based therapies) have been shown to reduce anxiety and depression in cancer patients and to improve adherence to medical treatment.

Patients with severe or persistent distress may need referral to an experienced clinical psychologist or psychiatrist. An increasing number of mental health professionals are attached to cancer centres and units, and other staff such as appropriately trained specialist nurses play an increasingly important role.

Evidence based summary

• Antidepressants are effective in treating depressed mood in cancer patients

• Cognitive-behavioural treatments are effective in relieving distress, especially anxiety, and in reducing disability

• Psychological interventions can be effective in relieving specific cancer related symptoms such as breathlessness

McDaniel JS, Musselman DL, Porter MR, Reed DA, Nemeroff CB. Depression in patients with cancer. Diagnosis, biology, and treatment. Arch Gen Psychiatry 1995;52:89-99Sheard T, Maguire P. The effect of psychological interventions on anxiety and depression in cancer patients: results of two meta-analyses. Br J Cancer 1999;80:1770-80Bredin M, Corner J, Krishnasamy M, Plant H, Bailey C, A'Hern R. Multicentre randomised controlled trial of nursing intervention for breathlessness in patients with lung cancer. BMJ 1999;318:901-4

Increasing numbers of non-NHS agencies also offer psychological care for patients with cancer. When referring patients to such services it is important to check their quality and to ensure that their contribution is coordinated within an overall care plan.

Further reading

• Barraclough J. Cancer and emotion : a practical guide to psycho-oncology. 3rd ed. Chichester: John Wiley, 1998

• Burton M, Watson M. Counselling patients with cancer. Chichester: John Wiley, 1998

• Faulkener A, Maguire P. Talking to cancer patients and their relatives. Oxford: Oxford Medical Publications, 1994

• Holland JC. Psycho-oncology. Oxford: Oxford University Press, 1998

• Lewis S, Holland JC. The human side of cancer: living with hope, coping with uncertainty. London: Harper Collins, 2000

• Scott JT, Entwistle V, Sowden AJ, Watt I. Recordings or summaries of consultations for people with cancer. Cochrane Database of Systematic Reviews. 2001

Figure.

Squamous cell cascinoma on lip after radiotherapy. As well as the fear of cancer itself, an additional source of distress can be the potentially disfiguring nature of the disease and its treatment

Figure.

Depression is common in the terminal phase of cancer, especially in patients with poorly controlled physical symptoms (Resignation by Carl Wilhelm Wilhelmson (1866-1928))