Patterns of Brain and CNS Tumor Incidence and Survival in U.S. Adolescents and Young Adults Ages 15-34

Central Brain Tumor Registry of the United States (CBTRUS) Therese A. Dolecek, Ph.D. Senior Research Associate Bridget J. McCarthy, Ph.D. Principal Investigator

Proportional Contribution of Brain & CNS Tumors Relative to All Tumors Among Ages 15-34, SEER Non-Malignant & Malignant 9%13%10%9%7% Malignant 5%9%6% 4%

Top 5 Causes of Cancer Death U.S Adolescents and Young Adults, Ages 15-34, Ages 15-19RateAges 20-24Rate All Malignant Cancers3.53 All Malignant Cancers Leukemia Leukemia Brain and Other CNS Lymphoma Bones and Joints Brain and Other CNS Lymphoma Bones and Joints Soft Tissue including Heart Soft Tissue including Heart0.37 Ages 25-29RateAges 30-34Rate All Malignant Cancers6.85 All Malignant Cancers Leukemia Breast Lymphoma Leukemia Brain and Other CNS Brain and Other CNS Female Genital System Lymphoma Colon and Rectum Female Genital System1.15 Rates are deaths per 100,000 person-years

Overall Study Goal: To determine brain and CNS tumor incidence and survival patterns among U.S. adolescents and young adults.

Study Data Sources Incidence: All Primary CBTRUS SEER Survival: Malignant Primary SEER

Demographic Characteristics Age Groups: 15-19, 20-24, 25-29, Gender: Males, Females Race/Ethnic Groups: Hispanics Black, non-Hispanics Other, non-Hispanics White, non-Hispanics

Brain and CNS Tumor Definitions - Behavior Non-Malignant (0, 1) Passed in Public Law Required collection of benign (0) and uncertain (1) behavior starting with cases diagnosed in January 2004 Malignant (3) Note: Pilocytic astrocytomas are included in malignant category.

ICD-O Primary Site Descriptions C70.0-C70.9Meninges (cerebral and spinal) C71.0Cerebrum C71.1-C71.4Frontal, temporal, parietal, occipital lobes C71.5Ventricle C71.6Cerebellum C71.7Brain stem C71.8-C71.9Other brain C72.0-C72.1Spinal cord and cauda equina C72.2-C72.5Cranial nerves C72.8-C72.9Other nervous system C75.1-C75.2Pituitary C75.3Pineal

Histology Groupings Glioblastoma Pilocytic Astrocytoma Other Astrocytoma Ependymoma Oligodendroglioma Embryonal/Primitive/Medulloblastoma Nerve Sheath Meningioma Lymphoma Germ Cell Tumor Pituitary Tumor Craniopharyngioma All Other

Statistical Methods Measures: Frequencies Age-specific Rates Annual Percentage Change Kaplan-Meier Survival Method for Cohort and Period Analysis Proportions for 5-year survival All Analyses Performed Using SEER*Stat Version 6.5.1

Brain and CNS Tumor Age-Specific Incidence Counts and Rates by Behavior CBTRUS, countratecountratecountratecountrate Total1, , , , Non- Malignant , , Malignant , , Rates are per 100,000 person-years. Note: Pilocytic astrocytomas are included in malignant category.

Age-Specific Incidence Rate Proportionate Distributions by Behavior CBTRUS,

Male to Female Incidence Rate Ratios by Behavior CBTRUS, Non-Malignant Malignant

Age-Specific Incidence Rates by Race/Ethnicity CBTRUS,

Top 5 Primary Sites Age-Specific Incidence Rates CBTRUS,

Proportionate Distribution of Age-Specific Incidence Rates by Histology Grouping for Malignant Behavior CBTRUS,

Average Annual Age-Specific Rates for Malignant Behavior by Histology Grouping CBTRUS,

Proportionate Distribution of Age-Specific Incidence Rates by Histology Grouping for Non-Malignant Behavior CBTRUS,

Average Annual Age-Specific Rates by Histology Grouping for Non-Malignant Behavior CBTRUS,

Top 5 Histology Groupings by Age Group CBTRUS, RankAges 15-19Rate 1Pilocytic Astrocytoma0.64 2Pituitary Tumor0.60 3Other Astrocytoma0.44 4Nerve Sheath0.28 5Medulloblastoma0.24 RankAges 20-24Rate 1 Pituitary Tumor Other Astrocytoma0.50 3Nerve Sheath0.39 4Meningioma0.36 5Oligodendroglioma0.29 RankAges 25-29Rate 1 Pituitary Tumor Other Astrocytoma0.90 3Meningioma0.88 4Nerve Sheath0.70 5Oligodendroglioma0.49 RankAges 30-34Rate 1Meningioma1.44 2Pituitary Tumor1.33 3Nerve Sheath1.03 4Other Astrocytoma0.98 5Oligodendroglioma0.69 Rates are per 100,000 person-years.

Non-MalignantMalignantAll Behaviors RateAPCRateAPCRateAPC Annual Percentage Changes (APC) were NOT statistically significant. Brain and CNS Tumor Average Annual Age-Adjusted Incidence Rates and Trends for Behavior Types SEER 17 Registries, Rates are per 100,000 person years

Brain and CNS Tumor Relative Survival by Age Group SEER,

5-Year Relative Survival by Era of Diagnosis SEER,

Period Relative Survival SEER 17 Registries

5-Year Period Relative Survival for Malignant Tumors by Gender SEER,

5-Year Relative Survival by Race/Ethnic Group SEER,

5-Year Relative Survival by Histology Grouping SEER,

Summary Point Brain and CNS tumors among adolescents and young adults are unique in that the patterns of site and histology groupings reflect transitional patterns from those observed for children to older adults.

Summary Point Non-malignant tumors are an important subgroup in these age groups because of their high relative frequency compared with younger age groups.

Summary Point Proportionately, non-malignant pituitary tumors exhibited high representation within these age groups.

Summary Point Brain and CNS tumor incidence rates for Hispanics and Black, non-Hispanics were observed to be lower than their White, non-Hispanic and Other, non- Hispanic counterparts.

Summary Point 5-year period relative survival rates were observed to be greater than 60% in these age groups indicating improvements and progress in treatment outcomes.

Acknowledgements This study was conducted under contract to CBTRUS which receives funding from the following sources: –American Brain Tumor Association –National Brain Tumor Society –Pediatric Brain Tumor Foundation –National Cancer Institute Contract #HHSN P

The authors gratefully acknowledge the collaborators at state registries that provided data for this analysis: –Ms. Georgia Yee, Arizona Cancer Registry; –Ms. Randi Rycroft, Colorado Central Cancer Registry; –Ms. Cathryn Phillips, Connecticut Tumor Registry; –Ms. Betsy Cromartie, Delaware Cancer Registry; –Ms. Stacey Carson, Cancer Data Registry of Idaho; –Dr. Molly Schwenn, Maine Cancer Registry; –Dr. Susan Gershman, Massachusetts Cancer Registry; –Dr. Sally Bushhouse, Minnesota Cancer Surveillance System; –Ms. Debbi Lemons, Montana Central Tumor Registry; –Ms. Virginia Williams, New Mexico Tumor Registry; –Dr. Maria Schymura, New York State Cancer Registry; –Ms. Karen Knight, North Carolina Central Cancer Registry; –Dr. John Fulton, Rhode Island Cancer Registry; –Ms. Kay Dosch, South Dakota Cancer Registry; –Dr. Melanie Williams, Texas Cancer Registry; –Ms. Rosemary Dibble, Utah Cancer Registry; –Dr. Jim Martin, Virginia Cancer Registry; –Dr. Patricia Colsher, West Virginia Cancer Registry.