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Life After Childhood Cancer

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Childhood Cancer Survivorship

In sharp contrast with childhood cancer incidence rates in the United States, which have increased slightly over the past 40 years, childhood cancer mortality rates have declined dramatically. In the 1970s, fewer than 60 percent of children diagnosed with cancer survived their disease for 5 or more years, whereas, today, more than 80 percent of children do so. It is estimated that there are more than 300,000 long-term survivors of childhood cancer living in the United States.

These dramatic improvements are the result of extraordinary research collaborations and teamwork, in particular involving the NCI-sponsored Children’s Oncology Group (COG) and its predecessor organizations, which were also supported by NCI. Currently, the great majority of infants, children, adolescents, and young adults with cancer are treated at COG-affiliated institutions and most participate in clinical trials. Many NCI-designated cancer centers are COG member institutions, introducing their young patients into clinical trials as appropriate.

Although we have made tremendous strides, our increased understanding of the molecular basis of different types of cancer, as well as advances in psychosocial care, have positioned us to make even greater progress in the future—in terms of both cancer treatment and survivorship care. Research at NCI-designated cancer centers around the country and a number of specialized children’s hospitals (often affiliated with a cancer center) is not only helping more children live longer, but––through survivorship-specific research and programs––is also ensuring that they will enjoy a better quality of life.


Childhood Survivorship Programs at the Cancer Centers

Formal childhood cancer survivorship programs and clinics are flourishing at a number of NCI-designated cancer centers, including the following:

  • At the Winship Cancer Institute at Emory University, Dr. Ann Mertens has developed an online database called SurvivorLink for pediatric cancer survivors in the state of Georgia, their families, and their primary care physicians. This database contains information about each survivor’s original cancer treatments, the potential adverse late effects associated with those treatments, and an individualized surveillance plan for adverse late effects. In addition, continuing medical education materials about survivorship and links to useful resources to aid in providing care for pediatric cancer survivors are available to physicians.
  • The Knight Cancer Institute of the Oregon Health and Science University runs a Childhood Cancer Survivor Program at Doernbecher Children’s Hospital that emphasizes family-centered care and treatment. The program is invested in advancing the field of pediatric cancer survivorship. Health care providers share new research information with patients, and patients have the opportunity to participate in a number of research initiatives developed through the program.  A library of successful survivor’s stories is also available to help new patients through their cancer experience.
  • At the Harold C. Simmons Cancer Center at the University of Texas Southwestern Medical Center, the After the Cancer Experience (ACE) program has been providing resources and services to childhood cancer survivors since 1989. This program benefits from an active research component, and it participates in the Childhood Cancer Survivor Study (see below) and COG studies. ACE participants receive individualized treatment summaries and care plans supported by neuro-psychologists, child life specialists, education specialists, social workers, and physical and occupational therapists. Dr. Angela Orlino, director of the ACE Young Adult Program, helps ACE participants transition from pediatric care to adult care.
  • The David B. Perini, Jr. Quality of Life Clinic at the Dana-Farber Cancer Institute provides childhood and adolescent cancer survivors access to the expertise, education, and support needed to manage key issues related to survivorship, including the long-term adverse effects of treatment, the risk of second cancers, and social and psychological concerns. The clinic gathers important data and directs or participates in a number of local and national programs designed to improve care and knowledge for cancer survivors.
  • The City of Hope Comprehensive Cancer Center has established a specialized Center for Cancer Survivorship, where current research is evaluating interventions targeted to reduce the risk of: 1) breast cancer in young adult females who received chest radiation during cancer treatment; 2) congestive heart failure in young cancer survivors who received chemotherapy and/or radiation that may be potentially toxic to the heart; 3) cervical and other HPV-related cancers in young survivors; and 4) cognitive impairment in survivors who received treatments, such as radiation and chemotherapy, that may impair cognitive functioning.


Managing Pediatric Survivorship Research at a Unique Cancer Center

St. Jude Children’s Research Hospital is the first and only NCI-designated cancer center devoted solely to the care and treatment of children. It also is the coordinating center for the largest collection of research ever conducted on childhood cancer survivors, containing information on thousands of survivors who have been followed for decades after treatment.

In 1994, NCI initiated the Childhood Cancer Survivor Study (CCSS), a collaborative effort involving 30 institutions in the United States and Canada. The study’s coordinating center was located at the University of Minnesota Masonic Cancer Center for more than a decade and then was moved to St. Jude in Memphis. Hundreds of peer-reviewed articles, reviews, and abstracts have been published based on the long-term follow-up of 20,346 childhood cancer survivors who were originally treated between 1970 and 1986. Because the treatment of children with cancer has changed significantly over the past few decades, an additional cohort of about 15,000 patients diagnosed with cancer between 1986 and 1999 is now being recruited, providing researchers with additional opportunities to learn more about the long-term effects of cancer and its treatment and to use that knowledge to design treatment protocols and intervention strategies that will enhance childhood cancer care and survivorship.

In the mid-1980s, St. Jude also established the After Completion of Therapy (ACT) Clinic. This clinic is open to patients whose disease has been in remission for 5 years. Enrolled patients visit the clinic for comprehensive assessments once a year until they graduate from the program at age 21. For more than 25 years, the clinic has been a model for the rest of the world. Physicians and nurse practitioners check the survivors for potential adverse late effects of cancer or its treatment on specific organs that may affect their quality of life or predispose them to future health risks. The survivors also receive psychological assessments, ongoing health and risk education, social worker visits, and––as they near age 21––transition to adult care, including recommendations for the timing of medical evaluations as they enter their middle years and beyond.

A 2010 study led by St. Jude researchers and reported in the Journal of Clinical Oncology showed that treatment with the drug methylphenidate (Ritalin) was associated with significant improvements in attention, behavior, and social skills in children who had been treated successfully for brain tumors and acute lymphoblastic leukemia.

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  • Posted: August 13, 2012