Cancer survivors can experience long term psychological and physical after effects. Early identification is vital to ensure appropriate interventions are put in place
Candy Cooley, MMedSci, RSCN, RGN, is head of hospital and specialist education, NHS West Midlands, and former manager of the NHS National Genetics Education and Development Centre.
Cooley C (2010) Cancer survivorship 2: providing advice and support to those living with and beyond cancer. Nursing Times; 106: 21, early online publication.
The second in this two part unit on cancer survivorship gives practical advice on identifying those with long term and late effects of cancer and its treatment, and providing information and support.
Part 1 explored why more people are surviving cancer, and how services need to change to meet the needs of this group.
Keywords Cancer survivor, Survivorship, Long term effects, Late effects
- This article has been double-blind peer reviewed
- Understand the importance of providing information to cancer survivors.
- Recognise the possible side effects of surgery, chemotherapy and radiotherapy.
Many cancer survivors suffer long term physical and psychological problems following treatment. According to recent research over three quarters (78%) reported experiencing at least one physical condition in the past 12 months, and 62% at least one psychological condition (Macmillan Cancer Support, 2009).
Although the United Kingdom Childhood Cancer Study Group has produced a wealth of data on the impact of surviving childhood cancer (McDowell, 2002), there has been no systematic monitoring of the long term impact of cancer treatments on adult survivors. Such research would provide better information on the problems adults face and the risks that are associated with treatment protocols.
Survivors’ information needs
As figures show improvements in length of survival for particular cancers, researchers and healthcare professionals need to consider the impact of treatment on patients’ long term physical and psychological quality of life. The National Cancer Survivorship Initiative (2009) identified cancer survivors’ needs, and most started with the word “knowing”. As part of the multidisciplinary team, nurses need to consider what information patients need, as many have identified that lack of knowledge causes the greatest distress.
Long term effects of cancer are those that occur during treatment or because of the disease, and then become long term conditions (such as depression and nerve pain). These may lessen over time. Late effects may not be obvious at the end of treatment but become extremely debilitating later on, such as heart problems, impaired lung function and lymphoedema (Rowland, 2008).
Macmillan Cancer Support (2009) found that 40% of cancer survivors were not aware of the long term side effects of cancer or its treatment. However, if healthcare professionals do not advise them of the importance of reporting any unusual physical or psychological symptoms they will try to cope alone, often to a point where a simply treated symptom has become a real problem that may be difficult or impossible to treat (Holland and Weiss, 2008).
Patients are also often reluctant to mention previous health problems when they start cancer treatment. Through gentle probing, nurses can ensure that a full history is available before decisions are made about treatment (Holland and Weiss, 2008). Many long term effects, particularly with chemotherapy, occur due to comorbidities such as diabetes or alcoholism.
There has been a tendency to consider patients’ long term support needs only when they are “cured”. However, it is important to identify early those who are at risk of long term problems so that appropriate interventions can be put in place.
Effects of surgery
Possible problems after surgery include:
- Scarring at the incision site;
- Problems with movement or activity;
- Nutritional problems (for example, if part of the bowel is removed);
- Cognitive problems;
- Changes in sexual function and fertility;
- Acute or chronic pain;
Psychological effects resulting from physical changes, even if these changes are not visible to others, such as feeling self conscious about a scar (Lance Armstrong Foundation, 2010).
Nurses need to discuss the possible after-effects of surgery with patients and their families and give advice on strategies to deal with them. This may include suggestions for dealing with post surgery fatigue or minimising scarring by using moisturisers and massage.
Nurses also need to consider referrals to maximise recovery, which might include referral to a dietitian to ensure patients’ nutrition is not compromised, or to a sex therapist or psychologist if sexual issues are identified as a concern.
While some of the possible effects of chemotherapy are well documented and have well established methods to alleviate them (Skeel, 2007), there is sometimes little recognition of the impact of other problems such as fatigue, early or premature menopause and infertility.
Fatigue is a difficult side effect to cope with after treatment, as many people want to feel “normal” and cannot understand why they still get so tired. Having a planned programme for returning to work, including working shorter hours and doing less strenuous tasks, or encouraging family members to help with jobs at home can enable people to return to normality.
Families are often so pleased that the treatment phase is over that they want their relative to simply return to “normal”. However, returning to their previous state may never be possible for some people and in such cases survivors and families will need to find a new “normal”.
Healthcare professionals need to approach discussions on fertility with sensitivity. It is important never to assume that survivors are too “old” or too “young” to be concerned about their fertility. Parents are often reluctant to allow such discussions with children who have survived cancer and sometimes the topic is not discussed. This can result in survivors of childhood cancers attending fertility clinics, which is distressing for both patients and healthcare professionals. This situation should be avoided by discussing the issue at an appropriate time – perhaps when the child reaches adolescence.
Other late effects of chemotherapy may include (Cancer.Net, 2010):
- Changes to the heart;
- Reduced lung capacity with difficulty breathing;
- Kidney and urinary problems;
- Neuropathy (numbness, tingling and other sensations in certain areas of the body, especially the hands and feet)
- Muscle weakness;
- Cognitive problems such as memory loss or inability to focus;
- Secondary cancers.
Patients should be made aware of the late effects of certain drugs that can put them at risk of other potentially life threatening conditions. For example, specific chemotherapies such as cisplatin, the vinca alkaloids and etoposide are associated with late effects such as cardiac muscle incompetence and peripheral neuropathy (Oeffinger et al, 2006).
However, it is important to achieve a balance between raising awareness and creating anxiety or paranoia.
Unlike chemotherapy, which is systemic, radiotherapy focuses on a specific area. Long term and late effects therefore relate to the healthy tissues and organs within the radiation field. Although modern radiotherapy protocols minimise damage to normal cells, in most cancers it is still impossible to deliver radiation without some impact on healthy tissue.
Nurses need to consider potential problems and provide patients with appropriate information about the need for follow up. For example, head and neck cancers may lead to the development of cataracts or problems with memory or comprehension, which can be dealt with by simple treatments or memory training. Bone density is also altered with radiation and may lead to osteoporosis in the area treated.
Some problems are specific to particular cancers. For example, patients undergoing radiotherapy for head and neck cancer will have had a dental review to identify problems associated with decayed teeth. At the same time practitioners should also consider the long term impact of radiotherapy on salivary glands, which should involve the dentist and nurse devising a self management treatment plan for mouth care.
Early advice and intervention can prevent secondary lymphoedema (swelling of a limb, caused by the removal of lymph nodes to prevent the spread of cancer) that leads to compromised quality of life. Both surgery and combination radiotherapy for certain cancers – in particular breast, skin, gynaecological and genitourinary cancers – carry a high risk of lymphoedema. However, the condition is much easier to manage with preventative and early intervention measures. Supporting patients to self manage empowers them to feel they can cope.
Those affected may need to raise the affected limb for periods of time during the day or may benefit from some regular specific exercise (Schmitz et al, 2009). Physiotherapists can give advice on the best routines and support garments.
For some patients excess weight may be an additional risk factor in developing lymphoedema; this can be particularly problematic following abdominal lymphatic damage. Weight loss support programmes, diets low in salt and gentle exercise classes may enable them to stay mobile.
Although increasing survival rates are a thing to be celebrated, this can be marred for survivors and their families if their state of health is difficult to live with and they feel abandoned by support services.
The National Cancer Survivorship Initiative has published a vision document to address this situation (Department of Health et al, 2010). Services should work towards implementing its recommendations by 2012.
While nurses always want patients to receive the best care possible, healthcare provision often focuses on the immediate problem and on the possible interventions to deal with it. The new phenomenon of cancer survivorship means that the emphasis needs to change to focusing on the present need while also bearing in mind the future implications to ensure both life and quality of life.
Specialist cancer services will be unable to meet the need for ongoing care and long term support for the growing numbers of cancer survivors. Primary care services will increasingly be asked to take on this responsibility of care. As a result of this, nurses working in primary care need to become familiar with the problems encountered by these patients and the strategies available to support them.
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Cancer.Net (2010) Late Effects. Alexandria, VA: Cancer.Net.
Department of Health et al (2010) National Cancer Survivorship Initiative (NCSI) Vision. London: DH.
Holland J, Weiss T (2008) The new standard of quality cancer care: integrating psychosocial aspects in routine cancer from diagnosis through survivorship. Cancer Journal; 14: 6, 425-428.
Lance Armstrong Foundation (2010) After Effects of Cancer Treatment.Austin, TX: Lance Armstrong Foundation.
Macmillan Cancer Support (2009) It’s No Life: Living with the Long Term Effects of Cancer. London: Macmillan Cancer Support.
McDowell HP (2002) Surviving childhood cancer. British Journal of Hospital Medicine;63: 9, 520-521.
National Cancer Survivorship Initiative (2009) National Cancer Survivorship Initiative Newsletter. March, Issue 2. London: NCSI.
Oeffinger KC et al (2006) Chronic health conditions in adult survivors of childhood cancer. New England Journal of Medicine; 355: 15, 1572-1582.
Rowland JH (2008) What are cancer survivors telling us? Cancer Journal; 14: 6, 361-368.
Schmitz KH et al (2009) Weight lifting in women with breast-cancer-related lymphedema. New England Journal of Medicine; 361: 664-673.
Skeel RT (2007) Handbook of Cancer Chemotherapy. London: Lippincott, Williams and Wilkins.