Foreword: Looking Beyond Cure: Pediatric Cancer as a Model

Abstract

In treating and controlling cancer, the most dramatic evidence of progress is that seen in childhood cancer. Once almost uniformly fatal, pediatric cancer has become a commonly curable illness in the last 30 years. For children diagnosed with cancer, the current 5-year cancerfree survival rate is 79%, and the 10-year survival rate is approaching 75% (Rowland et al., 2004). These figures already surpass the U.S. Department of Health and Human Services (2000) Healthy People 2010 goal (Rowland et al., 2004) of 5-year survival for 70% of those diagnosed with cancer, and they exceed that for the adult population, where 5-year survival currently stands at 64%. Although pediatric cancer survivors currently represent less than 2% of the 9.8 million cancer survivors in the United States, they are in many respects the vanguard of survivorship.[B3] With the growing population of those living years beyond a cancer diagnosis, survivorship has emerged as an important field, leading to the establishment in 1996 of the Office of Cancer Survivorship at the National Cancer Institute, charged with expanding, directing, and championing cancer survivorship research and education. A number of activities in the national arena have helped fuel interest in survivorship. In 2003, the Institute of Medicine released its report Childhood Cancer Survivorship: Improving Care and Quality of Life. In collaboration with the Lance Armstrong Foundation, the Centers for Disease Control and Prevention produced A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies in April 2004. The President’s Cancer Panel—after devoting 2 years to collecting testimony from survivors and their family members; health care providers; and payors, advocates, and policymakers— released its report Living Beyond Cancer: Finding a New Balance in June 2004. Meanwhile, no fewer than six bills have been advanced in Congress from members of the House and the Senate that include language calling for increased research and resources to address cancer survivorship. The fact that so many young patients live long enough to become young, even aging adults is certainly one explanation why pediatric oncology clinicians and researchers are among the leaders in identifying the chronic and late effects of cancer and their treatment. Even when the survival figures were not as favorable as they are now, pediatric oncology practitioners recognized that curing a child was not enough (D’Angio, 1975). They understood that they also had an obligation to ensure that the quality of children’s lives were as important as their length. As a consequence, we now have a wealth of information documenting that for this growing population of cancer survivors, being cancer-free does not mean being free of cancer’s effects. As evident in the important collection of papers in this issue, pediatric researchers, including many psychologists, were among the first to identify and characterize the long-term and late-presenting effects of curative therapies on a range of areas affecting survivors’ health: neurocognitive status; endocrine, cardiac, and pulmonary function (including reproduction); physical and physiologic growth; psychosocial adjustment; heath behavior and lifestyle choices; and risk for second malignancies. More important, as news of specific complications became available, pediatric cancer teams sought to translate these data into practice. They actively modified protocols to reduce children’s exposure to potentially adverse iatrogenic effects of curative attempt by