Library of Congress Control Number: 2007930206 ISBN 978-3-540-40842-0 Springer Berlin Heidelberg New York ISSN 1613-5318

W. Archie Bleyer

St. Charles Medical Center Bend, Oregon, USA Email: [email protected]

Ronald D. Barr

McMaster University Hamilton, Ontario, Canada Email: [email protected]

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Letter from the chair of the children's Oncology Group

Supported by the National Cancer Institute, the Children's Oncology Group designs and conducts clinical trials, correlative laboratory research, and epidemiological studies of cancer in infants, children, and adolescents. More than 200 member institutions in the United States, Canada, Europe, Australia, and New Zealand participate in these clinical trials, as we strive to improve survival rates and lessen the late effects of cancer treatment in this population. Older adolescent and young adult participation in clinical trials is significantly lower than that of younger patients, and parallels the relatively worse treatment outcomes for each cancer type in this population.

The Adolescent and Young Adult Committee of the Children's Oncology Group was formed to focus research attention on this population, develop treatment protocols, increase participation in clinical trials, and ultimately improve survival rates for adolescents and young adults.

The following chapters highlight the initial efforts of this Committee in addressing the scope of the problem of adolescent and young adult underrepresenta-tion in clinical trials and offer evidence that such a discrepancy may partially explain outcome differences. In addition, these chapters present information about biologic differences between specific cancer subtypes most common in younger children and those exhibited by the same cancers in adolescents and young adults, and offer plausible explanations for outcome differences as well as potential treatment strategies.

This textbook is the first comprehensive resource on cancer in adolescents and young adults. The presenting symptoms and signs, diagnosis, staging, treatment, and late effects are reviewed for each of the common malignancies in the age group, together with the epidemiology (incidence, mortality, survival, and their trends) and risk factors published earlier this year (Bleyer WA, O'Leary M, Barr R, Ries LAG (eds) (2006) Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, including SEER Incidence and Survival, 1975-2000. National Cancer Institute, NIH Pub. No. 06-5767, Bethesda MD; also available at www.seer.cancer.gov/publica-tions/aya). The principles and practices of care for the adolescent and young adult patient with cancer are then discussed, with separate chapters covering specialized units, adherence/compliance, psychological support and issues, quality of life outcomes, rehabilitation and exercise, late effects, ethical issues, access to care after therapy, future health, resources for survivors, and financial considerations. There are also chapters on access to care before and during therapy, clinical trials, future challenges and opportunities, and international perspectives.

The epidemiology portions use both the International Classification of Childhood Cancer and the International Classification of Diseases-Oncology because cancers occurring in this age group span the pediatric-to-adult spectrum of diseases. I believe this textbook will help educate medical providers and the public about cancer incidence and survival in this age group, and provide the impetus for further research to improve the survival and the quality of life of these young people.

Gregory H. Reaman, MD

Letter from the chair of the Eastern cooperative Oncology Group and President of the coalition of cancer cooperative groups

Adolescents and young adults 15-29 years of age are making the transition from childhood to adulthood, not only physically and psychologically, but also financially and educationally. When the burden of cancer is added, it becomes part of this extraordinary and challenging time in their growth and development. They are also unique in the types of cancers that they develop and present problems that neither pediatric nor adult-treating oncologists are fully comfortable in managing. It is no surprise, therefore, that 15- to 29-year-olds are often lost in a healthcare system that concentrates on pediatric and adult cancers, with the resultant limited participation of the intermediate age group in clinical trials.

Until recently, little attention and few resources were devoted to studying the incidence, biology, and treatment outcomes in this age group. With the ability to gather data specific to this age group, the National Cancer Institute (NCI) Surveillance Epidemiology and End-Results (SEER) program allows us to estimate that, in the year 2000, there were nearly 68,000 new cases of cancer among 15- to 39-year-olds in the United States. In 15- to 29-year-olds, the focus of this textbook the estimate is 21,500 new cases. Compared to the estimated 9,200 cases diagnosed in children younger than 15 years of age, the cancer incidence rate in 15- to 29-year-olds was nearly 2.5-fold greater. Among 15- to 39-year-olds, it was nearly 7.5-fold greater.

With the establishment of the Adolescent and Young Adult Committee of the NCI-funded Children's Oncology Group and with support from the AFLAC

Insurance Company, an organized program in research and education for and about young people with cancer has recently been initiated. I first heard of this initiative in 1996 when I was Chair of the Cooperative Group Chairs. It has taken a decade to reach this point, but the wait has been worthwhile.

This year the NCI is conducting a 1-year-long evaluation of the issues facing older adolescents and young adults with cancer. Known as a Progress Review Group, this effort is being cosponsored by the NCI and the Lance Armstrong Foundation. Its mission is to identify and prioritize the scientific, medical, and psychosocial barriers facing adolescent and young adult cancer patients and to develop strategies to improve their outcomes. I have had the privilege to co-Chair, along with Drs. Barry Anderson and Archie Bleyer, the Clinical Trials/Research Subcommittee of the Progress Review Group and expect the initiative to succeed in its goal to increase the participation of young adults and older adolescents in clinical trials.

This textbook, the first comprehensive treatise on cancer in adolescents and young adults, should help enable the mission of the Progress Review Group. It reviews the presenting symptoms and signs, diagnosis, staging, treatment, and late effects for each of the common malignancies in the age group. It supplements a monograph published earlier this year on the epidemiology (incidence, mortality, survival, and their trends) and risk factors of cancer in 15- to 29-year-olds (Bleyer WA, O'Leary M, Barr R, Ries LAG (eds) (2006) Cancer Epidemiology in Older Adolescents and Young Adults

15 to 29 Years of Age, including SEER Incidence and Survival, 1975-2000. National Cancer Institute, NIH Pub. No. 06-5767, Bethesda MD; also available at www. seer.cancer.gov/publications/aya). It would not have been possible without the support of the cooperative group enterprise in the United States, or without the extensive data collection efforts of the NCI's SEER program.

I congratulate the authors and look forward to a successful impact of the book and national initiative.

Robert Comis, MD

Robert Comis, MD

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