Cancer in Children and Adolescents (Fact Sheet)

Where do children with cancer get treated?

Children who have cancer are often treated at a children’s cancer center, which is a hospital or a unit within a hospital that specializes in diagnosing and treating children and adolescents who have cancer. Most children’s cancer centers treat patients up to 20 years of age. The health professionals at these centers have specific training and expertise to provide comprehensive care for children, adolescents, and their families.

Children’s cancer centers also participate in clinical trials. The improvements in survival for children with cancer that have occurred over the past half century have been achieved because of treatment advances that were studied and proven to be effective in clinical trials.

More than 90% of children and adolescents who are diagnosed with cancer each year in the United States are cared for at a children’s cancer center that is affiliated with the NCI-supported Children’s Oncology Group (COG). COG is the world’s largest organization that performs clinical research to improve the care and treatment of children and adolescents with cancer. Each year, approximately 4,000 children who are diagnosed with cancer enroll in a COG-sponsored clinical trial.

If my child is treated at a children’s cancer center, will he or she automatically be part of a clinical trial?

No. Participation in a clinical trial is voluntary, and it is up to each family to decide if clinical trial participation is right for their child.

Can children who have cancer be treated at the National Institutes of Health (NIH) Clinical Center?

Children with cancer may be eligible to be treated in clinical trials at the NIH Clinical Center in Bethesda, Maryland. Because the NIH Clinical Center is a research hospital, only patients who have a specific type or stage of cancer that is under study can be accepted for treatment. In some cases, patients with conditions that are rare or difficult to diagnose may also be accepted for treatment at the Clinical Center. All patients who are treated at the Clinical Center must be referred by a physician.

NCI’s Pediatric Oncology Branch conducts clinical trials for children, adolescents, and young adults with a wide variety of cancers. Patients with newly diagnosed cancer, as well as patients whose cancers have come back after treatment, may be eligible to participate in a clinical trial. Physicians at the Pediatric Oncology Branch can also provide a second opinion on a patient’s diagnosis or treatment plan. To refer a patient to the Pediatric Oncology Branch, the patient’s health care provider should call 301–496–4256 (local) or 1–877–624–4878 (toll-free) weekdays between 8:30 a.m. and 5:00 p.m. ET. Parents can also call these numbers to learn if their child is eligible to participate in a clinical trial.

What should survivors of childhood cancer consider after they complete treatment?

Survivors of childhood cancer need follow-up care and enhanced medical surveillance for the rest of their lives because of the risk of complications that can occur many years after they complete treatment for their cancer. Health problems that develop months or years after treatment has ended are known as late effects.

Long-term follow-up analysis of a cohort of survivors of childhood cancer treated between 1970 and 1986 has shown that cancer survivors remain at risk of complications and premature death as they age, with more than half of survivors having experienced a severe or disabling complication or even death by the time they reach age 50 years.²¹ Children treated in more recent decades may have lower risks of late complication or mortality due to modifications in treatment regimens to reduce exposures to radiotherapy and chemotherapy, increased efforts to detect late effects as early as possible, and improvements in medical care for late effects of therapy.²²

The specific late effects that a person who was treated for childhood cancer might experience depend on the type and location of his or her cancer, the type of treatment he or she received, and patient-related factors, such as age at diagnosis.

Children who were treated for bone cancer, brain tumors, and Hodgkin lymphoma, or who received radiation to their chest, abdomen, or pelvis, have the highest risk of serious late effects from their cancer treatment, including second cancers, joint replacement, hearing loss, and congestive heart failure.^23,24

It’s important for childhood cancer survivors to have regular medical follow-up examinations so any health problems that occur can be identified and treated as soon as possible. The Children’s Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers.

It is also important to keep a record of the cancer treatment that someone received as a child. This record should include:

• The type and stage of cancer
• Date of diagnosis and dates of any relapses
• Types and dates of imaging tests
• Contact information for the hospitals and doctors who provided treatment
• Names and total doses of all chemotherapy drugs used in treatment
• The parts of the body that were treated with radiation and the total doses of radiation that were given
• Types and dates of all surgeries
• Any other cancer treatments received
• Any serious complications that occurred during treatment and how those complications were treated
• The date that cancer treatment was completed

The record should be kept in a safe place, and copies of the record should be given to all doctors or other health care providers who are involved with the child’s follow-up care, even as the child grows into adulthood.

Many children’s cancer centers have follow-up clinics where survivors of childhood cancer can go for follow-up until they reach their early 20s. Some cancer centers are now creating clinics dedicated to follow-up care for long-term survivors of pediatric and adolescent cancers.

Selected References

1. Siegel RL, Miller KD, Jemal A. Cancer Statistics, 2017. CA: A Cancer Journal for Clinicians 2017; 67(1):7-30. [PubMed Abstract]

2. Howlader N, Noone AM, Krapcho M, et al. (eds). SEER Cancer Statistics Review, 1975-2014, National Cancer Institute. Bethesda, MD, https://seer.cancer.gov/csr/1975_2014/, based on November 2016 SEER data submission, posted to the SEER web site, April 2017.

3. Ries LAG, Smith MA, Gurney JG, et al. (eds). Cancer Incidence and Survival among Children and Adolescents: United States SEER Program 1975-1995. National Cancer Institute, SEER Program. NIH Pub. No. 99-4649. Bethesda, MD; 1999.

4. Childhood cancer rates calculated using the Incidence SEER18 Research Database, November 2016 submission (Katrina/Rita Population Adjustment). All cancer site rates are based on the SEER site codes with the exception of medulloblastoma, which used site code C71.6 and International Classification Code of Diseases for Oncology, Third Edition (ICD-O-3) malignant histologic codes 9470/3, 9471/3, and 9474/3.

5. Curtin SC, Minino AM, Anderson RN. Declines in cancer death rates among children and adolescents in the United States, 1999-2014. National Center for Health Statistics Data Brief 2016; (257):1-8. [PubMed Abstract]

6. Warren KE. Diffuse intrinsic pontine glioma: poised for progress. Frontiers in Oncology 2012; 2:205. [PubMed Abstract]

7. Popov SD, Sebire NJ, Pritchard-Jones K, Vujanić GM. Renal tumors in children aged 10-16 Years: a report from the United Kingdom Children’s Cancer and Leukaemia Group. Pediatric and Developmental Pathology 2011; 14(3):189-193. [PubMed Abstract]

8. Jemal A, Ward EM, Johnson CJ, et al. Annual Report to the Nation on the status of cancer, 1975-2014, featuring Survival. Journal of the National Cancer Institute 2017; 109(9). [PubMed Abstract]

9. Moore SW. Developmental genes and cancer in children. Pediatric Blood and Cancer 2009; 52(7):755-760. [PubMed Abstract]

10. Greaves MF, Maia AT, Wiemels JL, Ford AM. Leukemia in twins: lessons in natural history. Blood 2003; 102(7):2321-2333. [PubMed Abstract]

11. Ross JA, Spector LG, Robison LL, Olshan AF. Epidemiology of leukemia in children with Down syndrome. Pediatric Blood and Cancer 2005; 44(1):8-12. [PubMed Abstract]

12. Hsu WL, Preston DL, Soda M, et al. The incidence of leukemia, lymphoma and multiple myeloma among atomic bomb survivors: 1950-2001. Radiation Research 2013; 179(3):361-82. [PubMed Abstract]

13. Cardis E, Hatch M. The Chernobyl accident–an epidemiological perspective.Clinical Oncology: A Journal of the Royal College of Radiologists 23(4):251-260. [PubMed Abstract]

14. Linet MS, Kim KP, Rajaraman P. Children’s exposure to diagnostic medical radiation and cancer risk: epidemiologic and dosimetric considerations. Pediatric Radiology 2009; 39 Suppl 1:S4-26. [PubMed Abstract]

15. Belson M, Kingsley B, Holmes A. Risk factors for acute leukemia in children: A review. Environmental Health Perspectives 2007; 115(1):138-145. [PubMed Abstract]

16. Urayama KY, Ma X, Selvin S, et al. Early life exposure to infections and risk of childhood acute lymphoblastic leukemia. International Journal of Cancer 2011; 128(7):1632-1643. [PubMed Abstract]

17. Kinlen L. Childhood leukaemia, nuclear sites, and population mixing. British Journal of Cancer 2011; 104(1):12-18. [PubMed Abstract]

19. Ma X, Urayama K, Chang J, Wiemels JL, Buffler PA. Infection and pediatric acute lymphoblastic leukemia. Blood Cells, Molecules, and Diseases 2009; 42(2):117-120. [PubMed Abstract]

20. Hudson MM. Reproductive outcomes for survivors of childhood cancer. Obstetrics and Gynecology 2010; 116(5):1171-83. [PubMed Abstract]

21. Ram R, Wolach O, Vidal L, et al. Adolescents and young adults with acute lymphoblastic leukemia have a better outcome when treated with pediatric-inspired regimens: Systematic review and meta-analysis. American Journal of Hematology 2012; 87(5):472-478. [PubMed Abstract]

22. Armstrong GT, Kawashima T, Leisenring W, et al. Aging and risk of severe, disabling, life-threatening, and fatal events in the Childhood Cancer Survivor Study. Journal of Clinical Oncology 2014; 32(12):1218-1227. [PubMed Abstract]

23. Armstrong GT, Chen Y, Yasui Y, et al. Reduction in late mortality among 5-year survivors of childhood cancer. New England Journal of Medicine 2016; 374(9):833-842. [PubMed Abstract]

24. Oeffinger KC, Mertens AC, Sklar CA, et al. Chronic health conditions in adult survivors of childhood cancer. New England Journal of Medicine 2006; 355(15):1572-1582. [PubMed Abstract]

25. Meadows AT, Friedman DL, Neglia JP, et al. Second neoplasms in survivors of childhood cancer: findings from the Childhood Cancer Survivor Study cohort. Journal of Clinical Oncology 2009; 27(14):2356-2362. [PubMed Abstract]

Source: National Cancer Institute.