Cancer Facts |
Date reviewed: 03/02/2004 Care for Children and Adolescents With Cancer: Questions and Answers
Survival rates for childhood cancer have risen sharply over the past 25 years. In the United States, more than 75 percent of children with cancer are now alive 5 years after diagnosis, compared with about 60 percent in the mid-1970s (1). Much of this dramatic improvement is due to the development of improved therapies at children's cancer centers, where the majority of children with cancer have their treatment.
Children's cancer centers are hospitals or units in hospitals that specialize in the diagnosis and treatment of cancer in children and adolescents. Most children's, or pediatric, cancer centers treat patients up to the age of 20. The following groups have established standards for children's cancer centers or programs: These groups agree that a childhood cancer center should be staffed by a team of trained pediatric oncologists (doctors who specialize in childhood cancer) and other specialists. Other members of the health professional team usually include pediatric surgeons, specialist surgeons (for instance neurosurgeons and urologic surgeons), radiation oncologists, pathologists, nurses, consulting pediatric specialists, psychiatrists, oncology social workers, nutritionists, and home health care professionals—all with expertise in treating children and adolescents with cancer. Together, these professionals offer comprehensive care. Because childhood cancer is relatively rare, it is important to seek treatment in centers that specialize in the treatment of children with cancer. Specialized cancer programs at comprehensive, multidisciplinary cancer centers follow established protocols (step-by-step guidelines for treatment). These protocols are carried out using a team approach. The team of health professionals is involved in designing the appropriate treatment and support program for the child and the child's family. In addition, these centers participate in specially designed and monitored research studies that help develop more effective treatments and address issues of long-term childhood cancer survival. Not necessarily. Participation in research studies is always voluntary. Parents and patients may choose to receive treatment as part of a clinical trial (research study); only patients and parents who wish to do so take part. However, a large number of children who go to pediatric cancer centers take part in clinical trials. About 70 percent of children with cancer are treated in an NCI-sponsored clinical trial at some point during their illness. In cancer research, a clinical trial is a study designed to show how a particular strategy—for instance, a promising anticancer drug, a new diagnostic test, or a possible way to prevent cancer—affects the people who receive it. Treatment clinical studies fall into three categories: One advantage is the possibility that a new treatment (or diagnostic test or preventive measure) will turn out to be better than a more established method. Patients who take part in approaches that prove to be better have the first chance to benefit from them. In phase III clinical trials, in which one treatment is compared with another, patients receive either the most advanced and accepted treatment for the kind of cancer they have—known as the “standard” treatment—or a new treatment that has shown promise of being at least as beneficial as the standard treatment. People who take part in clinical trials receive specialized care under a very precise set of directions, or protocol. To ensure quality care, highly trained and experienced cancer specialists design, review, and approve each protocol. In addition, all participants in clinical trials are carefully monitored during the study and are followed afterwards. Participants are often included in a network of clinical trials carried out around the country. In this network, doctors and researchers share their ideas and experience, and patients receive the benefit of the shared knowledge. Clinical trials can involve risks as well as benefits. All cancer treatments have side effects, but treatments being studied may have side effects that are not yet understood as well as the side effects of standard treatments. The potential risks and benefits of each study are explained during the informed consent process, when patients and families discuss all aspects of the study with their doctors or nurses before deciding whether to participate. Some health plans cover part or all of the cost of care at children's cancer centers, but benefits vary from plan to plan. Questions or concerns about health care costs should be discussed with a medical social worker or the hospital or clinic billing office. Financial assistance and resources to cover health care costs may be available. Children with cancer can receive treatment in clinical trials at the National Institutes of Health (NIH) Clinical Center in Bethesda, Maryland. Two branches of the NCI that study specific types of cancer have their own contact points: To find out more about this service, and what information is needed, contact the Neuro-Oncology Branch at 301–402–6298 between 9:00 a.m. and 5:00 p.m. Eastern time. The Branch’s Web site can be found at http://home.ccr.cancer.gov/nob/default.asp on the Internet. A child’s pediatrician or family doctor often can provide a referral to a children’s cancer center. Families and health professionals also can call the NCI’s Cancer Information Service (CIS) at 1–800–4–CANCER to learn about children’s cancer centers that belong to the Children’s Oncology Group. All of the cancer centers that participate in these Groups have met strict standards of excellence for childhood cancer care. Many families receive helpful information from their doctors and nurses. Treatment centers often have social work departments that can provide assistance. In addition, various organizations offer support to families, including help with transportation, lodging, and financial assistance. Sources of help include the following organizations:
Reference
# # # Related Resources Publications (available at http://www.cancer.gov/publications)
National Cancer Institute (NCI) Resources
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