As cancer treatments and supportive approaches lead to more people living with and beyond a cancer diagnosis, what are the implications for care and services?
Cooley C (2010) Cancer survivorship 1: how services need to change for those living with and beyond cancer. Nursing Times; 106: 20, early online publication.
Several factors, including improved healthcare and treatment, have contributed to an enormous increase in the number of people living with and beyond cancer, meaning an estimated two million people in the UK are now classed as cancer survivors. Healthcare providers need to consider how their services can meet the needs of this group, and nurses need to consider their role in their area of practice in terms of supporting those who survive cancer.
Keywords Cancer survivor, Survivorship, Cancer care, Follow up
- This article has been double-blind peer reviewed
1. Understand the potential implications of surviving cancer.
2. Be aware of the support services that may need to be developed to manage this increasing group.
Increasing numbers of people with a cancer diagnosis are surviving the condition or living with it as a long term condition. Members of the public and some healthcare professionals may view survivors of cancer as the “lucky” ones, and it is tempting to believe that once they are “cured” they no longer have any difficulties or healthcare needs. However, for many people, surviving cancer is only the start of a long journey that involves dealing with physical side effects and psychological issues.
Nurses in all areas of practice are likely to encounter patients who are cancer survivors, who may be presenting with related or unrelated conditions. They therefore need to consider their role in supporting these patients, some of whom may be elderly and living alone, or younger people trying to stay in work or care for a family.
While cancer survival rates are based on the number of people alive five years after diagnosis, Macmillan Cancer Support defines a cancer survivor as someone who has finished primary treatment and is living with or beyond the disease (Torjesen, 2009).
Surviving childhood cancer is not a new phenomenon - The widespread introduction of chemotherapy in the 1960s led to early successes. In the 1970s, the multidisciplinary approach and the monitoring of practice through the United Kingdom Childhood Cancer Study Group led to improvements in the five year survival rates for both leukaemia and solid tumours (Curry et al, 2006).
In adult cancers, the first significant changes in survival rates occurred with the development of cancer services following the Policy Framework for Commissioning Cancer Services (Department of Health, 1995). This report was developed due to the identification of differences in survival rates across the country, which had led to questions about individual practice, hospital performance, service availability and the “postcode lottery”.
It had also been identified that there were poor survival rates in the UK compared with other countries. These poor UK rates were often blamed on late presentation and poor early detection rates, despite world class screening programmes such as in cervical cancer. The data showed most countries across Europe and most developed countries had better survival rates than the UK.
The government responded with the NHS cancer plan (DH, 2000), which set out a national framework for developing and delivering cancer services.
Improvements in survival
By the mid 1990s, changes in service provision and treatments, such as a planned and coordinated approach in surgery, radiotherapy and combination chemotherapy, led to a steady increase in five year survival rates and a decrease in mortality in adult cancers in the UK (National Audit Office, 2004).
Worldwide survival rates were also improving during this time. A US report said that around 62% of cancer survivors were expected to live at least five years after diagnosis (Centers for Disease Control and Prevention and the Lance Armstrong Foundation, 2004). It also reported that in January 2000 there were around 9.6 million cancer survivors in the US.
The DH (2007) cancer reform strategy aimed to build on the NHS cancer plan and ensure direction in service development until 2012, particularly in areas such as early detection and radiotherapy provision.
Research by Macmillan Cancer Support (2008a) showed an estimated two million people living with or beyond cancer in the UK, nearly double the previous estimate of 1.2million from research published in 2003. The findings also revealed that 61% of people with a cancer diagnosis are over 65, and 10% of people in the UK aged over 65 have a cancer diagnosis. The reasons for this increase include the fact that people are living longer, meaning that cancer incidence is increasing, as well as improvements in healthcare and decreasing mortality rates.
Cancer Research UK (2009) reported that survival rates for breast cancer have been improving for 30 years. The most recent figures for women diagnosed with breast cancer in England in 2001-2006 showed five year relative survival to be 82%, compared with 52% 30 years ago. The estimated relative 20 year survival rate increased from 44% in the early 1990s to 64%.
Consequences of survival
While people with cancer are surviving longer and five year survival rates are increasing, there are long term consequences for many survivors.
The three modalities currently used to treat cancer - chemotherapy, radiotherapy and surgery - all have physical and psychological effects. Surgery may be disfiguring or require the removal of an organ, and chemotherapy can cause damage to physiological processes such as hormone production. While modern radiotherapy protocols minimise damage to healthy tissue, this treatment damages any healthy tissue with which it does come into contact, leading to possible DNA damage and the possibility of secondary tumours.
The long term side effects of treatment may also lead to psychological difficulties, particularly fears about cancer returning or a new cancer developing. Cancer survivors have reported that they no longer feel safe; a cough, an ache or a bruise take on a new sinister quality (Rowland, 2008).
Survivors have to deal with the side effects and/or late effects of cancer and its therapy years after completing treatment, such as:
- Weight gain;
- Fertility issues;
- Libido problems;
- Fear of cancer recurrence;
- Concerns about developing a new cancer.
According to Macmillan Cancer Support (2008b), survivors have reported suffering from a wide range of lasting effects of cancer, including insomnia, aches and pains, poor appetite and urinary and neurological problems as well as difficulties in managing day to day activities.
Developing new approaches
The DH and Macmillan Cancer Support are co-chairing a project to identify the needs of cancer survivors and their families. The National Cancer Survivorship Initiative, launched in September 2008, aims to ensure that support services are developed to manage the long term sequelae of cancer, both physically and psychologically, and to consider the wider implications for survivors and their families.
The initiative aims to improve support for cancer survivors, focusing on the following areas:
- Assessment and care planning;
- Managing active and progressive disease;
- Late effects;
- Children and young people;
- Work and finance;
- Self management;
- Workforce development and commissioning.
The project highlights that current follow-up and after care support programmes aimed at identifying early recurrence do not support people to move on from being cancer patients. Self management programmes focusing on living well and resuming normal day to day activities would be of greater benefit (Wilson, 2008).
The NCSI published its vision document earlier this year (DH et al, 2010), which commits the initiative to taking steps by 2012 to ensure that cancer survivors in England receive support and services to meet their needs. It recommended that all survivors should have:
- A personalised assessment and care plan;
- Support to self manage their condition;
- Information on the long term effects of living with and beyond cancer;
- Access to specialist medical care for complications that occur after cancer (DH et al, 2010).
Evidence in this document on adult cancer survivors’ experiences of care includes a survey by the Picker Institute, which found that 43% of respondents would have liked more information and advice, and 75% did not have, or did not know whether they had, a care plan.
There is still some confusion and debate about whether provision of follow-up care should be the responsibility of health or social care, or whether charitable and patient groups should bear the burden of the economic impact of improvements in survival.
Issues such as whether cancer survivors should have an automatic right to free support for physical or psychological damage after treatment, and whether carers have equal access to information and support will cause concern to commissioners of future services.
Nurses will need to consider whether cancer survivors in their care have received relevant follow-up care and access to services which have enabled them to make the best recovery possible and to attain the best quality of life possible.
- Part 2 of this unit, to be published in next week’s issue, examines nurses’ role in preventing and managing long term problems associated with cancer survival.
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Cancer Research UK(2009) Breast Cancer Survival Statistics. London: CRUK.
Centers for Disease Control and Prevention, Lance Armstrong Foundation (2004)A National Action Plan for Cancer Survivorship:Advancing Public Health Strategies. Atlanta, Georgia: CDC.
Curry H et al (2006) Caring for survivors of childhood cancers: The size of the problem. European Journal of Cancer; 42: 4, 501-508.
Department of Health et al (2010) National Cancer Survivorship Initiative Vision. London: DH.
Department of Health (2007) Cancer Reform Strategy. London: DH.
Department of Health (2000) The NHS Cancer Plan: A Plan for Investment, A Plan for Reform. London: DH.
Department of Health (1995) Policy Framework for Commissioning Cancer Services: A Report by the Expert Advisory Group on Cancer to theChief Medical Officers of England and Wales. London: DH.
Macmillan Cancer Support (2008a) Two Million Reasons. London: Macmillan Cancer Support.
Macmillan Cancer Support (2008b) Poor health for cancer survivors, five years on. London: Macmillan Cancer Support.
National Audit Office (2004) Tackling Cancer in England – Saving More Lives. London: The Stationery Office.
Rowland JH (2008) What are cancer survivors telling us? Cancer Journal; 14: 6,361-368.
Torjesen I (2009) Seeing survivors. In: Cancer Survivorship (supplement sponsored by Macmillan Cancer Support). Nursing Times; 105: 12.
Wilson PM(2008) The UK Expert Patients Programme: Lessons learned and implications for cancer survivors’ self care support programmes. Journal of Cancer Survivorship; 2: 45-52.