Long-term survivors of childhood cancers in the United States

Abstract

Purpose: To estimate the number of individuals in the United States diagnosed with cancer as children (ages 0-19 years) as of 2005, with a focus on those surviving for >30 years.

Methods: To estimate the national prevalence of survivors of childhood cancers, we used data from the Surveillance Epidemiology and End Results program from 1975 to 2004. Long-term childhood cancer survivors, diagnosed before 1975, were estimated using incidence and survival models extrapolated into years before 1975.

Results: We estimated that there are a total of 328,652 survivors of childhood cancer in the United States as of January 1, 2005, of these, 24% have survived >30 years since diagnosis. The cancer sites with the largest number of survivors are brain (51,650), acute lymphoblastic leukemia (49,271), germ cell tumors (34,169), and Hodgkin lymphoma (31,598). Sites with higher proportions of survivors diagnosed >30 years ago are germ cell (43%), soft tissue (38%), renal (34%), and bone (26%). Historical trends from Connecticut data show major improvements in survival for all of the childhood cancer sites.

Conclusion: The number of survivors of childhood cancers is expected to increase in the future consequent to the lifesaving advances in treatment introduced after 1970, especially for acute lymphoblastic leukemia. Because this population is at increased risk for illness-related morbidity and mortality, appreciating the number of survivors who were treated as children is important both to determining the national cancer burden and planning for the future health care needs of these individuals.