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Childhood cancer statistics - long-term follow-up

This page contains information on the epidemiology, including long-term follow-up, of childhood cancer. It is estimated that by the end of 2012 there will be at least 33,000 people in the UK who are alive having previously been diagnosed with a childhood cancer and who survived their cancer for at least five years.

Long-term follow-up

While there have been considerable improvements in survival after childhood cancer, some groups of survivors have long-term excess mortality or are at an increased risk of physical, psychological and social health problems later in life (often referred to as late effects).1-3,34

Two large and comprehensive cohort studies the North American Childhood Cancer Survivor Study (CCSS) and the population-based British Childhood Cancer Survivor Study (BCCSS), have been set up to better understand these late effects; such studies are recognised as being of great value, and some of the findings of these, and others, are described below.4,5

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General health

The CCSS has reported that long-term survivors of childhood cancer are more likely to suffer from chronic health problems and to die prematurely compared with adults who have never had childhood cancer. The study found that by 30 years after diagnosis, over two-fifths (42%) of survivors were affected by severe, disabling or life-threatening conditions, or had died due to a chronic condition. Overall the childhood cancer survivors experienced eight times the risk of severe or life-threatening conditions compared with their siblings.9 Another study, based on over 1,350 survivors treated in a single institution in the Netherlands during 1966 and 1996, reported that a substantial proportion of childhood cancer survivors had a high or severe burden of disease by young adulthood, particularly after radiotherapy. Survivors of bone tumours were most affected (64% of survivors) and survivors of leukaemia and Wilms tumours the least affected (12% each).9,35

Another important measure of general health is the self-reported health status, which can identify different needs of survivors compared with objective measures of health. Using a health survey, the BCCSS found that while childhood cancer survivors reported their mental health as being broadly the same as their counterparts in the general population, they rated their physical health as being much worse.10,11

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Subsequent malignant neoplasms (SMNs)

It is well documented that survivors of childhood cancer are at an increased risk of developing further cancers (called subsequent malignant malignant neoplasms or SMNs) compared with the general population.1

A retrospective cohort study following childhood cancer survivors in Great Britain showed that one in 25 (4%) survivors had developed an SMN by 25 years of follow-up. Overall the observed number of SMNs was six times higher than in the general population.12 Broadly similar risks have also been reported from the CCSS.13

The risk of developing SMNs varies considerably depending on the type of childhood cancer and how it was treated.1,12,13 In general, the risk of solid SMNs tends to increase substantially with exposure to radiation from radiotherapy,14-17 and, to a much lesser extent, with exposure to alkylating agents.14,15

An international collaborative case-control study co-ordinated by the International Agency for Research on Cancer is currently investigating the role of radiation and genetic susceptibility in determining the risk of developing breast cancer following treatment for another cancer.6,19

Results from the BCCSS have shown that females irradiated with supradiaphragmatic radiotherapy (radiotherapy to the chest that included part of the breast) for Hodgkin lymphoma in childhood experience a substantially increased risk of breast cancer later in life, with the observed number of cases being 13 times higher than that expected in the general population.18 In 2003, the Department of Health launched a UK-wide patient notification exercise in which affected women were informed of their increased risk of breast cancer. Any women who received this particular form of radiotherapy at or below the age of 35 from 1962 onwards were offered regular check-ups (including scanning and mammography) until they were old enough to be routinely screened as part of the NHS Breast Screening Programme.

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Outcome of pregnancy and health of offspring

While some survivors of childhood cancer become infertile as a result of intensive radiotherapy or chemotherapy treatments, many remain fertile and go on to produce healthy offspring. Results from the BCCSS showed that female survivors of childhood cancer treated with abdominal radiotherapy have a three-fold increased risk of a premature birth, a two-fold increased risk of delivering low-birth-weight offspring and a small increased risk of miscarriage.36

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Marriage among survivors

The BCCSS reported that childhood cancer survivors are less likely to marry than individuals of similar age and sex in the general population.23 Over a third (34%) of BCCSS survivors had ever married and a further 10% had cohabited with a partner as married; survivors of brain and CNS tumours were least likely to marry (and substantially less than the general population), whereas Wilms tumours survivors were most likely to marry.36 The CCSS reported lower proportions of marriages in its survivors, though this may be partly due to different definitions of ‘ever being married’.24

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Education

The BCCSS reported that childhood cancer survivors have lower educational attainment than the general population, with survivors of brain and CNS tumours and cranially irradiated leukaemia achieving the poorest educational outcomes.37 Similar findings have been published by the CCSS.38

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Smoking among survivors

Smoking should be discouraged in all, but particularly among survivors of childhood cancer who are at an increased risk of a spectrum of adverse health outcomes related to the cancer and its treatment.

The BCCSS reported that a fifth of childhood cancer survivors were current smokers and 30% had regularly smoked at some point in their lives.25 Current regular smoking was most prevalent among many cancers which carry a higher risk of developing an SMN, such as Hodgkin lymphoma, soft tissue sarcoma and Wilms tumour.26 Similar smoking prevalence rates have also been published by the CCSS.27

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Clinical follow-up guidelines

A recent survey of the childhood cancer long-term follow-up procedures among clinicians identified important variation in practice.39

A recent survey of the long-term follow-up practices among clinicians who were members of the Children’s Cancer and Leukaemia Group (formerly the United Kingdom Children’s Cancer Study Group) and responsible for the clinical follow-up of long-term survivors identified important variations in practices.28

There is increasingly widespread agreement that survivors of childhood cancer should be followed-up in a standardised way and according to an agreed set of clinical follow-up guidelines. Three sets of clinical follow-up guidelines are currently available: two relating to British survivors29-30 and one relating to US survivors.31

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The National Cancer Survivorship Initiative

The Cancer Reform Strategy32 clearly acknowledges that survivors of cancer (of all ages) have particular needs and announced the creation of the National Cancer Survivorship Initiative (NCSI).33 The NCSI has already identified the unique needs of survivors of childhood and young people’s cancer and a specific work stream for this group of survivors is underway.

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References for childhood cancer statistics - long-term follow-up

  1. Hawkins MM. Long-term survivors of childhood cancers: what knowledge have we gained? Nat Clin Pract Oncol 2004;1:26-31.
  2. Wallace H, Green D, eds. Late Effects of Childhood Cancer: Arnold; 2004.
  3. Schwartz C, Hobbie W, Constine L, et al, eds. Survivors of Childhood and Adolescent Cancer: A Multidisciplinary Approach 2nd ed: Springer; 2005.
  4. Childhood Cancer Survivor Study. Childhood Cancer Survivor Study.
  5. Robison LL, Mertens AC, Boice JD, et al. Study design and cohort characteristics of the Childhood Cancer Survivor Study: a multi-institutional collaborative project. Med Pediatr Oncol 2002;38:229-39.
  6. British Childhood Cancer Survivor Study British Childhood Cancer Survivor Study.
  7. Hawkins MM, Lancashire ER, Winter DL, et al. The British Childhood Cancer Survivor Study: Objectives, methods, population structure, response rates and initial descriptive information. Pediatr Blood Cancer 2008;50:1018-25.
  8. Hawkins MM, Robison LL. Importance of clinical and epidemiological research in defining the long-term clinical care of pediatric cancer survivors. Pediatr Blood Cancer 2006;46:174-8.
  9. Oeffinger KC, Mertens AC, Sklar CA, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med 2006;355:1572-82.
  10. Geenen MM, Cardous-Ubbink MC, Kremer LC, et al. Medical assessment of adverse health outcomes in long-term survivors of childhood cancer. JAMA 2007;297:2705-15.
  11. Reulen RC, Winter DL, Lancashire ER, et al. Health-status of adult survivors of childhood cancer: a large-scale population-based study from the British Childhood Cancer Survivor Study. Int J Cancer 2007;121:633-40.
  12. Jenkinson HC, Hawkins MM, Stiller CA, et al. Long-term population-based risks of second malignant neoplasms after childhood cancer in Britain. Br J Cancer 2004;91:1905-10.
  13. Neglia JP, Friedman DL, Yasui Y, et al. Second malignant neoplasms in five-year survivors of childhood cancer: childhood cancer survivor study. J Natl Cancer Inst 2001;93:618-29.
  14. Hawkins MM, Wilson LM, Burton HS, et al. Radiotherapy, alkylating agents, and risk of bone cancer after childhood cancer. J Natl Cancer Inst 1996;88:270-8.
  15. Jenkinson HC, Winter DL, Marsden HB, et al. A study of soft tissue sarcomas after childhood cancer in Britain. Br J Cancer 2007;97:695-9.
  16. Sigurdson AJ, Ronckers CM, Mertens AC, et al. Primary thyroid cancer after a first tumour in childhood (the Childhood Cancer Survivor Study): a nested case-control study. Lancet 2005;365:2014-23.
  17. Neglia JP, Robison LL, Stovall M, et al. New primary neoplasms of the central nervous system in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. J Natl Cancer Inst 2006;98:1528-37.
  18. Taylor AJ, Winter DL, Stiller CA, et al. Risk of breast cancer in female survivors of childhood Hodgkin's disease in Britain: a population-based study. Int J Cancer 2007;120:384-91.
  19. GENE-RAD-RISK. GENE-RAD-RISK.
  20. Taylor AJ, Winter DL, Pritchard-Jones K, et al. Second primary neoplasms in survivors of Wilms' tumour--a population-based cohort study from the British Childhood Cancer Survivor Study. Int J Cancer 2008;122:2085-93.
  21. Boice JD Jr, Tawn EJ, Winther JF, et al. Genetic effects of radiotherapy for childhood cancer. Health Phys 2003;85:65-80.
  22. Reulen RC, Zeegers MP, Lancashire ER, et al. Offspring sex ratio and gonadal irradiation in the British Childhood Cancer Survivor Study. Br J Cancer 2007;96:1439-41.
  23. Frobisher C, Lancashire ER, Winter DL, et al. Long-term population-based marriage rates among adult survivors of childhood cancer in Britain. Int J Cancer 2007;121:846-55.
  24. Rauck AM, Green DM, Yasui Y, et al. Marriage in the survivors of childhood cancer: a preliminary description from the Childhood Cancer Survivor Study. Med Pediatr Oncol 1999;33:60-3.
  25. Frobisher C, Winter DL, Lancashire ER, et al. Extent of smoking and age at initiation of smoking among adult survivors of childhood cancer in Britain. J Natl Cancer Inst 2008;100:1068-81.
  26. Gardner MJ, Snee MP, Hall AJ, et al. Results of case-control study of leukaemia and lymphoma among young people near Sellafield nuclear plant in West Cumbria. BMJ 1990;300:423-9.
  27. Emmons K, Li FP, Whitton J, et al. Predictors of smoking initiation and cessation among childhood cancer survivors: a report from the childhood cancer survivor study. J Clin Oncol 2002;20:1608-16.
  28. Taylor A, Hawkins M, Griffiths A, et al. Long-term follow-up of survivors of childhood cancer in the UK. Pediatr Blood Cancer 2004;42:161-8.
  29. Scottish Intercollegiate Guidelines Network (SIGN). Long term follow up care of survivors of childhood cancer: Edinburgh; 2004.
  30. Skinner R, Wallace W, Levitt G, eds. Therapy Based Long Term Follow Up. 2nd ed: UKCCSG Late Effects Group; 2005.
  31. Cure Search Children's Oncology Group. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers. Version 3.0: 2008.
  32. Cancer Reform Strategy. Cancer Reform Strategy: London: Department of Health; 2007.
  33. National Cancer Survivorship Initiative. National Cancer Survivorship Initiative.
  34. Reulen RC, Winter DL, Frobisher C, et al. Long-term cause-specific mortality among survivors of childhood cancer. 2010 Jul 14;304(2):172-9.
  35. Geenen MM, Cardous-Ubbink MC, Kremer LC, et al. Medical assessment of adverse health outcomes in long-term survivors of childhood cancer. Jama 2007;297(24):2705-15.
  36. Reulen RC, Zeegers MP, Wallace WH, et al. Pregnancy outcomes among adult survivors of childhood cancer in the British Childhood Cancer Survivor Study. Cancer Epidemiol Biomarkers Prev 2009;18(8):2239-47.
  37. Lancashire ER, Frobisher C, Reulen RC, et al. Educational attainment among adult survivors of childhood cancer in Great Britain: a population-based cohort study. JNCI;102(4):254-70.
  38. Mitby PA, Robison LL, Whitton JA, et al. Utilization of special education services and educational attainment among long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Cancer 2003;97(4):1115-26.
  39. Taylor A, Hawkins M, Griffiths A, et al. Long-term follow-up of survivors of childhood cancer in the UK. Pediatr Blood Cancer 2004;42(2):161-8.
Updated: 14 November 2012