Long-Term Follow-Up and Survivorship

Within this chapter, we begin with the invaluable context of the experience of living after cancer as a young person. Then we move to describe the growing body of data indicating the consequences of cancer in patients diagnosed aged as teenagers and young adults (YAs). We identify that, while the variation in definitions used in the literature hamper firm conclusions, specific patterns of substantial morbidity are observed which are distinct from those seen in younger children. When combined with the epidemiology, the overall burden of late effects of adolescents and YA cancer and its treatment are a substantial public health problem. The progress in parts of Europe and the US in bringing together outcomes into medium-sized data sets, combined with the gaps in the data and remaining uncertainties, mean that the time is right for international epidemiological ascertainment of these adverse effects. There are potential benefits for commencing prospective clinical as well retrospective epidemiological study designs.