C S U @ A Y A D N A M A CCaanncceerr iinn R G LLooss AAnnggeelleess O R P CCoouunnttyy:: E TTrreennddss aammoonngg C N AAddoolleesscceennttss aanndd A L L YYoouunngg AAdduullttss I E 11998888--22001111 V R U USC/Norris S Comprehensive Cancer Center R E Keck School of Medicine C of the N University of Southern California A C S E L E G N A S O L Suggested citation: Deapen D, Wang Y, Meeske K, Escobedo L, Liu L, Cockburn M (eds). Cancer in Los Angeles County: Trends among Adolescents and Young Adults 1988-2011. Los Angeles Cancer Surveillance Program, University of Southern California, 2015. CCaanncceerr iinn Los Angeles Cancer Surveillance Program LLooss AAnnggeelleess AYA@USC CCoouunnttyy:: USC/Norris Comprehensive Cancer TTrreennddss aammoonngg Center AAddoolleesscceennttss aanndd Keck School of Medicine of the YYoouunngg AAdduullttss University of Southern California 11998888--22001111 Suggested citation: Dennis Deapen, DrPH Deapen D, Wang Y, Meeske K, Yaping Wang, MS Escobedo L, Liu L, Cockburn M (eds). Kathleen Meeske, PhD Cancer in Los Angeles County: Trends among Adolescents and Loraine Escobedo, PhD Young Adults 1988-2011. Lihua Liu, PhD Los Angeles Cancer Surveillance Program, Myles Cockburn, PhD University of Southern California, 2015 2015. Supported by a grant from St. Baldrick’s Foundation and AYA@USC. Copyright© 2015 by the University of Southern California All rights reserved. This document, or parts thereof, may not be reproduced in any form without citation s t CONTRIBUTING EDITORS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1 n FOREWORD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .2 e EXECUTIVE SUMMARY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .4 t n PREFACE . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6 o INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .8 C Adolescent and young adult cancers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .8 Historical background of the CSP . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9 The diverse population of Los Angeles County . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9 How cancer is registered . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .10 Use of CSP data for research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .10 The importance of investigating time trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11 Protection of confidentiality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11 MATERIALS AND METHODS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .12 Incidence data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .12 Cautions in interpretation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .13 DISTRIBUTION OF ALL CANCERS COMBINED BY AGE, SEX AND RACE/ETHNICITY . . . . . . . . . . .14 By age . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .15 By age and sex . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .15 By sex and race/ethnicity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .15 By sex, age and anatomic site . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .15 DISTRIBUTION OF CANCERS COMBINED BY ANATOMIC SITE, SEX AND RACE/ETHNICITY . . . . .18 By sex and race/ethnicity (all AYA ages combined) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .18 SITE-SPECIFIC INCIDENCE TRENDS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .25 Bone sarcomas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .25 Brain and central nervous system . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .38 Breast . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .64 Cervix and uterus . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .69 Colon and rectum . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .78 Lip, oral cavity and pharynx . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .83 Kaposi’s sarcoma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .89 Leukemia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .94 Lymphoma, Hodgkin . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .103 Lymphoma, Non-Hodgkin . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .109 C Melanoma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .115 S U @ Ovary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .120 A Y Testis and ovarian germ cell . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .125 A d Thyroid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .130 an m APPENDIX A: Detailed methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .136 a r g Determination of race/ethnicity of cancer patients . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .136 Pro Estimating socioeconomic status . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .136 e c n Place of birth . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .136 eilla Population denominators . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .136 urv S Technical terms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .136 er c Calculation of rates and trends in rates . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .137 n a C APPENDIX B: LIST OF AYA CANCER SITE NAME AND AYA SITE RECODE . . . . . . . . . . . . . . . . . .138 s e APPENDIX C: SEER AYA SITE RECODE . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .139 gel n A APPENDIX D: REFERENCES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .144 s o L S R CONTRIBUTING EDITORS O T I D Myles Cockburn, PhD Joseph Li E Associate Professor, Preventive Medicine Oncology Fellow, AYA Program at G University of Southern California N I Chelsea L Collins, MD, MS T U Fellow, Adolescent and Young Adult Oncology Lihua Liu, PhD B Children’s Hospital Los Angeles Assistant Professor, Preventive Medicine I R T Victoria Cortessis, PhD Leo Mascarenhas, MD, MS N O Assistant Professor, Preventive Medicine Associate Professor, Pediatrics C Children’s Hospital Los Angeles Wendy Cozen, DO, MPH Professor, Preventive Medicine Kathleen Meeske, RN, PhD Assistant Professor, Pediatrics Dennis Deapen, DrPH Children’s Hospital Los Angeles Professor, Preventive Medicine Roberta McKean-Cowdin, PhD, MPH David Freyer, DO, MS Assistant Professor, Preventive Medicine Professor, Pediatrics Children’s Hospital Los Angeles Anna Wu, PhD Professor, Preventive Medicine Melanie Goldfarb, MD Assistant Professor, Surgery The Keck School of Medicine of the Ann Hamilton, PhD University of Southern California Professor, Preventive Medicine C S U @ A Y A d n a m a r g o Pr e c n a eill v ur S er c n a C s e el g n A s o L 1 D R O FOREWORD W E R Never has the power of epidemiologic data to stimulate the intensive focus of healthcare O professionals, medical institutions, and patient advocates been more evident than with F the rapid development of a national agenda to address the gap in improvement and survival in adolescent young adult (AYA) cancer triggered by a landmark report in 2000. This report, co-sponsored by the National Cancer Institute and the Lance Armstrong Foundation in 2005, and the report of the Young Adult Cancer Alliance in 2006, spurred a dramatic increase in the development and publication of studies focused on the AYA cancer population when only a trickle of such investigations had been published previously. Clinicians and researchers teamed up to try to identify the reasons for this “AYA Gap” including the unique psychosocial issues, the biology of their cancers, lack of health insurance and limited services for this population. In reality, a new discipline in oncology developed, much like the birth of geriatric oncology in the past two decades. Where are we now? In 1990 only 129 peer-reviewed publications on AYA oncology appeared, compared to 4045 in the year 2000. Many major cancer centers have or are developing clinical programs and research initiatives specifically targeting the AYA cancer population. Specialized facilities geared to provide the environment and supportive care older adolescents and young adults with cancer need are being created. But what about the impact on the individual adolescent and young adult with cancer? Establishing their identity, their independence, and their life’s path is the work of this time in their lives. It is a vulnerable point in human development characterized by uncertainty and change, probably the worst possible time for a disease like cancer to enter their world as a very “uninvited guest”. They need evidence-based care that is developed from data specific to their cancers and to the psychological and economic environment in which they exist. That data is still relatively sparse when compared to the voluminous information available for pediatric and older adult cancer populations. C S U Finally, one of the five recommended areas of focus to improve the outcome of AYA cancer @ A Y patients is to enhance the knowledge and advocacy of adolescents and young adults with A d cancer. They, too, need reliable data to do so, and that data must be relevant to the diversity of n a m this patient population in addition to their shared challenges. a r g o Pr This report adds important new data that will help us move the field of AYA oncology e c n forward. It is the first large scale evaluation of the characteristics of cancer in this population a eill since the original. By focusing on the population of AYA cancer patients in Los Angeles v ur S County with its highly diverse composition and especially large population of Hispanic er c patients, the authors provide new insights into the characteristics and needs of this population n a C s e el g n A s o L 2 D R O W E R of patients that make up a growing percentage of our nation’s people. Hopefully, this report O will result in raising more questions and stimulate more innovative studies. Equally important F are the insights these data will provide to all clinicians, other healthcare providers, healthcare policy makers and patient advocates working in the field of oncology about the challenges that AYA patients face in our ethnically and culturally rich population. Combined with the previously published data, the information presented in this document will provide a broad characterization of the AYA population in the United States that will be important as a basis for developing future studies and policy. Stuart E. Siegel, M.D Co-Medical Director Adolescent and Young Adult Cancer Program Kenneth J. Norris/University of Southern California Comprehensive Cancer Center Professor of Pediatrics and Medicine Keck School of Medicine University of Southern California C S U @ A Y A d n a m a r g o Pr e c n a eill v ur S er c n a C s e el g n A s o L 3 Y R A EXECUTIVE SUMMARY M M The Los Angeles Cancer Surveillance Program (CSP) serves as a resource to generate new hypotheses U S regarding cancer causes, to monitor trends and patterns of cancer incidence, and to identify population E subgroups at high risk of cancer. Monitoring rates of cancer can provide a “report card” demonstrating how V well cancer prevention programs are working. Government officials and policymakers use trends in cancer I T rates to determine funding for treatment and related social services. U C E Los Angeles County is the most populous and ethnically diverse county in the U.S. The substantial differences X among rates of most cancers among subgroups such as men and women and various race/ethnic groups provide E clues for a better understanding of cancer. Highlights of cancer incidence trends among adolescents and young adults (AYA) (ages 15-39 years) in Los Angeles County from 1988 to 2011 include: • Bone cancers are relatively rare and incidence rates have changed little over this time period. • Brain and central nervous system cancers include several different types of cancers that tend to increase with age over the AYA age range. Rates appear to be rising, with Vietnamese females at highest risk although the number of cases in this group is very small. • Breast cancer is the most common cancer among AYA females. Breast cancer rates are highest for black, non-Latina white, Filipino and Vietnamese women. Higher socioeconomic status (SES) is associated with higher risk regardless of race/ethnicity. • Cervical cancer has been decreasing and is the most common cancer among Latinas and least common among Chinese. • Colorectal cancer risk is greater for males than females aged 35-39, but does not differ at younger ages. • Head and neck cancers (excluding thyroid) incidence is highest for non-Latino whites and blacks. • Kaposi’s sarcoma rates are highest among black and non-Latino white males but have significantly declined. C S U @ A • Leukemia varies by type. Acute lymphoblastic leukemia (ALL) among white males is approximately twice Y A d that for non-Latino white males and four times that among black males. For females, the rate among Latina n a whites is approximately twice that seen in both non-Latino white and black females. In contrast, there was m ra no difference in incidence of acute myeloid leukemia (AML) by race/ethnicity g o Pr or SES. e c n a eill • Hodgkin lymphoma rates are highest among female non-Latinas followed by blacks and Latinas. Incidence v ur increases with increasing SES. S er c n • Non-Hodgkin lymphoma rates among Latino males, and to some extent, Asian males, increase with a C s increasing SES. Among non-Latino white males, the SES trend is reversed, with highest incidence among e el g the lowest SES groups. n A s o L 4