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. 2015 Dec 22;18(Suppl 1):i1–i50. doi: 10.1093/neuonc/nov297

American Brain Tumor Association Adolescent and Young Adult Primary Brain and Central Nervous System Tumors Diagnosed in the United States in 2008-2012

Quinn T Ostrom 1,2, Haley Gittleman 1,2, Peter M de Blank 1,3, Jonathan L Finlay 4, James G Gurney 5, Roberta McKean-Cowdin 6, Duncan S Stearns 1,3, Johannes E Wolff 7, Max Liu 8, Yingli Wolinsky 1,2, Carol Kruchko 2, Jill S Barnholtz-Sloan 1,2
PMCID: PMC4690545  PMID: 26705298

Introduction

Brain and central nervous system (CNS) tumors found in adolescents and young adults (AYA) are a distinct group of tumors that pose challenges not only to treatment but also to reporting. Overall, cancer that occurs in this age group is biologically distinct from those that occur in both younger and older age groups1,2 posing significant challenges for clinicians. The most commonly diagnosed histologies in AYA vary from those in both children age (0-14 years), and older adults (40+ years).3,4 Prognosis and expected survival also varies between younger and older adults, with those who are diagnosed with brain and CNS tumors at younger ages having significantly longer survival. Despite this survival advantage, recent analyses have reported that while cancer survival has been improving overall, AYA have not experienced these same increases in survival and in some cases may have worse survival than those cancers diagnosed in persons over age 40 years.5 This report provides an in depth analyses of the epidemiology of brain and CNS tumors in adolescents and young adults in the United States (US), and is the first report to provide histology-specific statistics in this population for both malignant and non-malignant brain and other CNS tumors.

In 2006, the National Institutes of Health, the National Cancer Institute (NCI) and the LiveStrong Young Adult Alliance conducted a Progress Review Group to investigate AYA Oncology entitled Research and care imperatives for adolescents and young adults with cancer: A Report of the Adolescent and Young Adult Oncology Progress Review Group. This group established the standard age range for the AYA group as 15-39 years. This is the age range used by the Surveillance Epidemiology and End Results (SEER) program of the NCI, as well as in the 2015 CBTRUS Statistical Report.3,6 Brain tumors and other CNS tumors are less common in AYA than in older adults, but they have a higher incidence than brain tumors in children (age 0-14 years).3 Non-malignant tumors are significantly more common in AYA than children (Average annual age adjusted incidence in age 15-39 years: 6.17 per 100,000; age 0-14 years: 0.79 per 100,000), while malignant tumors are slightly more common in those age 0-14 years (Average annual age adjusted incidence in 15-39 years old: 3.26 per 100,000; 0-14 years old: 3.73 per 100,000). While a rare cancer overall, brain and CNS tumors are among the most common cancers occurring in this age group (4.4% of all cancers in those age 15-39 years as compared to 32.4% in children age 0-14 years, and 2.2% of cancers in adults age 40+ years).3,4,7 Malignant brain and CNS tumors are the 11th most common cancer and the 3rd most common cause of cancer death7,8 in the AYA population. Incidence rates of brain tumors overall as well as specific histologies vary significantly by age. It is, therefore, important to provide an accurate statistical assessment of brain and other CNS tumors in the adolescent and young adult population to better understand their impact on the US population and to serve as a reference for afflicted individuals, for researchers investigating new therapies and for clinicians treating patients.

Background

CBTRUS is a population-based site-specific registry in the US that works in partnership with a public cancer surveillance organization, the CDC's National Program of Central Registries (NPCR), and from which data are directly received under a special agreement. This agreement permits transfer of data through the NPCR Cancer Surveillance System (NPCR-CSS) Submission Specifications mechanism. CBTRUS researchers combine the NPCR data with data from the NCI SEER program9 which was established for national cancer surveillance in the early 1970s. All data from NPCR and SEER originate from tumor registrars who adhere to the Uniform Data Standards (UDS) for malignant and non-malignant brain and CNS tumors as directed by the North American Association of Central Cancer Registries (NAACCR) (http://www.naaccr.org) and report these data to the central cancer registry in their state. Along with the UDS, there are quality control checks and a system for rating each central cancer registry to further insure that these data are reported as accurately and completely as possible. As a surveillance partner, CBTRUS can, therefore, report high quality data on brain and CNS tumors with histological specificity useful to the communities it serves. Its database represents the largest aggregation of population-based data on the incidence of primary brain and CNS tumors in the US. Aggregate information on all cancers from all central cancer registries in the United States, including primary brain and CNS, is available in United States Cancer Statistics.7,10

Technical Notes

Data Collection

CBTRUS contains incidence data from 51 independent central cancer registries (46 NPCR and 5 SEER registries), including 50 state cancer registries and the District of Columbia, representing ∼99.9% of the US population for the time period examined in this report (for 1 of 51 registries, data were available only from 2008-2010).3 Please see The CBTRUS Statistical Report: Primary and Central Nervous System Tumors Diagnosed in the US in 2008-2012 for additional information about the way that these data are obtained and processed.3

Incidence is a measure of newly diagnosed cases of a disease in a population. Crude incidence rates are calculated by dividing total number of new cases, by the overall population for the same time period. Age-adjusted incidence rates are calculated by generating crude rates by age group, and then summing these together based on a standard age distribution which adjusts for the effect of age distribution variation between different populations. Age-adjusted incidence rates per 100,000 for the entire US for selected other cancers were obtained from the US Cancer Statistics (USCS),7 produced by the CDC and the NCI, via CDC Wide-ranging Online Data for Epidemiologic Research (WONDER), for the purpose of comparison with brain and CNS tumor incidence rates. This database includes both NPCR and SEER data and represents nearly 100% of the US population.

Survival information derived from active patient follow-up is not available in the data that CBTRUS receives from NPCR registries, so SEER data are used to generate these Tables. Survival data for malignant brain and CNS tumors were obtained from 18 SEER registries for the years 1995 to 2012. This dataset spanning 17 years currently provides population-based information for approximately 28% of the US population as of the US 2010 Census,11,12 and is a subset of the CBTRUS combined NPCR and SEER data used for the incidence calculations in this report.

Mortality data used in this report are from the National Center for Health Statistics and include deaths where primary brain or CNS tumor was listed as cause of death on the death certificate for all 50 states and the District of Columbia. Population data for each geographic region were obtained from the SEER program website13 for the purpose of rate calculations.

Data Reporting – Definitions

It should be noted that other surveillance organizations and researchers may report brain tumors differently from CBTRUS. CBTRUS uses the site definition agreed upon in the Consensus Conference on brain tumor definition and includes lymphoma and other hematopoietic histologies (9590–9989), and olfactory tumors of the nasal cavity [C30.0 (9522–9523)].13,14 The definition of brain and CNS tumors used by SEER, NPCR, and NAACCR in their published incidence and mortality statistics is based on the Consensus Conference and, like CBTRUS, includes tumors located in the following sites with their International Classification of Disease, Oncology 3rd edition (ICD-O-3)15 site codes in parentheses: brain (C70.0–9), meninges (C71.0–9), and other central nervous system tumors (C72.0–9), but, unlike CBTRUS, excludes lymphoma and leukemia histologies (ICD-O-3 histology codes 9590–9989) from all brain and CNS sites (Table 1 provides information on included site codes). Leukemias and lymphomas of the brain and CNS are rare, and account for ∼1% of all brain and CNS tumors from 2008-2012. This difference in reporting does not significantly affect rates.

Table 1.

Central Brain Tumor Registry of the United States (CBTRUS), Brain and Central Nervous System Tumor Site Groupings

Adolescent and Young Adult Report Major Site Grouping Site ICD-O-3a Site Code
Supratentorial Cerebrum C71.0
Frontal lobe of brain C71.1
Temporal lobe of brain C71.2
Parietal lobe of brain C71.3
Occipital lobe of brain C71.4
Ventricle, NOS Ventricle C71.5
Cerebellum Cerebellum C71.6
Brain Stem Brain stem C71.7
Other Brain Other brain C71.8-C71.9
Overlapping lesion of brain C71.8
 Brain, NOS C71.9
Other Nervous System Spinal cord and cauda equine C72.0-C72.1
 Spinal cord C72.0
 Cauda equina C72.1
Cranial nerves C72.2-C72.5
 Olfactory nerve C72.2
 Optic nerve C72.3
 Acoustic nerve C72.4
 Cranial nerve, NOS C72.5
Other nervous system C72.8-C72.9
 Overlapping lesion of brain and central nervous system C72.8
 Nervous system, NOS C72.9
Meninges (cerebral & spinal) C70.0-C70.9
 Cerebral meninges C70.0
 Spinal meninges C70.1
 Meninges, NOS C70.9
Pituitary and craniopharyngeal duct C75.1-C75.2
 Pituitary gland C75.1
 Craniopharyngeal duct C75.2
Pineal Gland C75.3
Olfactory tumors of the nasal cavityb C30.0

aInternational Classification of Diseases for Oncology, 3rd Edition, 2000. World Health Organization, Geneva, Switzerland.

bICD-O-3 histology codes 9522-9523 only.

Abbreviations: CBTRUS, Central Brain Tumor Registry of the United States; NOS, not otherwise specified.

Gliomas are tumors that arise from glial (supportive tissue in the brain) or precursor cells and include astrocytoma, glioblastoma, oligodendroglioma, ependymoma, mixed glioma, malignant glioma, not otherwise specified (NOS), and a few rare histologies. Because there is no standard definition for gliomas, CBTRUS defines glioma as ICD-O-3 histology codes 9380-9384 and 9391-9460 as starred in Tables 2a, 2b and 2c. Additional information on glioma histology categorization is provided in Table 2d. Additionally, CBTRUS reports data on all brain and CNS tumors irrespective of behavior, whereas many reporting organizations may only publish rates for malignant brain and CNS tumors (tumors with an ICD-O-3 behavior code of /3). This policy presents a problem for reporting pilocytic astrocytoma. Pilocytic astrocytoma was assigned an ICD-O-315 behavior code of uncertain/1 in 2007 WHO Classification of Tumours of the Central Nervous System.16,35 Prior to this classification change, these tumors were historically classified as a malignant tumor,17 and as a results have been defined as a malignant tumor for the purposes of US cancer registration reporting practices. In keeping with these practices CBTRUS categorizes these tumors as malignant tumors in this report and its other statistical reports.

Table 2a.

Central Brain Tumor Registry of the United States (CBTRUS), Brain and Central Nervous System Tumor Histology Groupings

Histology ICD-O-3a Histology Codeb
Tumors of Neuroepithelial Tissue
Pilocytic astrocytoma* 9421, 9425c
Diffuse astrocytoma* 9400, 9410, 9411, 9420
Anaplastic astrocytoma* 9401
Unique astrocytoma variants* 9381, 9384, 9424
Glioblastoma* 9440, 9441, 9442/3d
Oligodendroglioma* 9450
Anaplastic oligodendroglioma* 9451, 9460
Oligoastrocytic tumors* 9382
Ependymal tumors* 9383, 9391, 9392, 9393, 9394
Glioma malignant, NOS* 9380, 9431c, 9432c
Choroid plexus tumors 9390
Other neuroepithelial tumors* 9363, 9423, 9430, 9444
Neuronal and mixed neuronal-glial tumors* 8680, 8681, 8690, 8693, 9412, 9413, 9442/1e, 9492 (excluding site C75.1), 9493, 9505, 9506, 9522, 9523, 9509c
Tumors of the pineal region 9360, 9361, 9362, 9395c
Embryonal tumors 8963, 9364, 9470, 9471, 9472, 9473, 9474, 9480, 9490, 9500, 9501, 9502, 9508
Tumors of Cranial and Spinal Nerves
Nerve sheath tumors 9540, 9541, 9550, 9560, 9561, 9570, 9571
Other tumors of cranial and spinal nerves 9562
Tumors of Meninges
Meningioma 9530, 9531, 9532, 9533, 9534, 9537, 9538, 9539
Mesenchymal tumors 8324, 8800, 8801, 8802, 8803, 8804, 8805, 8806, 8810, 8815, 8824, 8830, 8831, 8835, 8836, 8850, 8851, 8852, 8853, 8854, 8857, 8861, 8870 , 8880, 8890, 8897, 8900, 8901, 8902, 8910, 8912, 8920, 8921, 8935, 8990, 9040, 9136, 9150, 9170, 9180, 9210, 9241, 9260, 9373
Primary melanocytic lesions 8720, 8728, 8770, 8771
Other neoplasms related to the meninges 9161, 9220, 9231, 9240, 9243, 9370, 9371, 9372, 9535
Lymphomas and Hemopoietic Neoplasms
Lymphoma 9590, 9591, 9596, 9650, 9651, 9652, 9653, 9654, 9655, 9659, 9661, 9662, 9663, 9664, 9665, 9667, 9670, 9671, 9673, 9675, 9680, 9684, 9687, 9690, 9691, 9695, 9698, 9699, 9701, 9702, 9705, 9714, 9719, 9728, 9729
Other hemopoietic neoplasms 9727, 9731, 9733, 9734, 9740, 9741, 9750, 9751, 9752, 9753, 9754, 9755, 9756, 9757, 9758, 9760, 9766, 9823, 9826, 9827, 9832, 9837, 9860, 9861, 9866, 9930, 9970
Germ Cell Tumors and Cysts
Germ cell tumors, cysts and heterotopias 8020, 8440, 9060, 9061, 9064, 9065, 9070, 9071, 9072, 9080, 9081, 9082, 9083, 9084, 9085, 9100, 9101
Tumors of Sellar Region
Tumors of the pituitary 8040, 8140, 8146, 8246, 8260, 8270, 8271, 8272, 8280, 8281, 8290, 8300, 8310, 8323, 9492 (Site C75.1 only), 9582
Craniopharyngioma 9350, 9351, 9352
Unclassified Tumors
Hemangioma 9120, 9121, 9122, 9123, 9125, 9130, 9131, 9133, 9140
Neoplasm, unspecified 8000, 8001, 8002, 8003, 8004, 8005, 8010, 8021
All other 8320, 8452, 8710, 8711, 8713, 8811, 8840, 8896, 8980, 9173, 9503, 9580

aInternational Classification of Diseases for Oncology, 3rd Edition, 2000. World Health Organization, Geneva, Switzerland.

bSee the CBTRUS website for additional information about the specific histology codes included in each group: http://www.cbtrus.org.

cHistology not currently used to US cancer registration, will be included starting with diagnosis year 2015. See NAACCR website: http://www.naaccr.org/LinkClick.aspx?fileticket=4Hx-2XJJqFo%3d&tabid=161&mid=523.

dMorphology 9442/3 only.

eMorphology 9442/1 only.

*All or some of this histology is included in the CBTRUS definition of gliomas, including ICD-O-3 histology codes 9380-9384, 9391-9460.

Abbreviations: CBTRUS, Central Brain Tumor Registry of the United States; NOS, not otherwise specified.

Table 2b.

Central Brain Tumor Registry of the United States (CBTRUS), Brain and Central Nervous System Tumor Malignant Histologiesa

Histology ICD-O-3b Histology Codec
Tumors of Neuroepithelial Tissue
Pilocytic astrocytoma* 9421/1 [Included with malignant tumors], 9425/3d
Diffuse astrocytoma* 9400/3, 9410/3, 9411/3, 9420/3
Anaplastic astrocytoma* 9401/3
Unique astrocytoma variants* 9381/3, 9424/3
Glioblastoma* 9440/3, 9441/3, 9442/3
Oligodendroglioma* 9450/3
Anaplastic oligodendroglioma* 9451/3, 9460/3
Oligoastrocytic tumors* 9382/3
Ependymal tumors* 9391/3, 9392/3d, 9393/3d
Glioma malignant, NOS* 9380/3
Choroid plexus tumors 9390/3
Other neuroepithelial tumors* 9423/3, 9430/3
Neuronal and mixed neuronal-glial tumors* 8680/3, 8693/3, 9505/3, 9522/3, 9523/3
Tumors of the pineal region 9362/3, 9395/3d
Embryonal tumors 8963/3, 9364/3, 9470/3, 9471/3, 9472/3,9473/3, 9474/3, 9480/3, 9490/3, 9500/3, 9501/3, 9502/3, 9508/3
Tumors of Cranial and Spinal Nerves
Nerve sheath tumors 9540/3, 9560/3, 9561/3, 9571/3
Tumors of Meninges
Meningioma 9530/3, 9538/3, 9539/3
Mesenchymal tumors 8800/3, 8801/3, 8802/3, 8803/3, 8804/3, 8805/3, 8806/3, 8810/3, 8815/3, 8830/3, 850/3, 8851/3, 8852/3, 8853/3, 8854/3, 8857/3, 8890/3, 8900/3, 8901/3, 8902/3, 8910/3, 8912/3, 8920/3, 8921/3, 8990/3, 9040/3, 9150/3, 9170/3, 9180/3, 9260/3
Primary melanocytic lesions 8720/3, 8728/3, 8770/3, 8771/3
Other neoplasms related to the meninges 9220/3, 9231/3, 9240/3, 9243/3, 9370/3, 9371/3, 9372/3
Lymphomas and Hemopoietic Neoplasms
Lymphoma 9590/3, 9591/3, 9596/3, 9650/3, 9651/3, 9652/3, 9653/3, 9654/3, 9655/3, 9659/3, 9661/3, 9662/3, 9663/3, 9664/3, 9665/3, 9667/3, 9670/3, 9671/3, 9673/3, 9675/3, 9680/3, 9684/3, 9687/3, 9690/3, 9691/3, 9695/3, 9698/3, 9699/3, 9701/3, 9702/3, 9705/3, 9714/3, 9719/3, 9728/3, 9729/3
Other hemopoietic neoplasms 9727/3, 9731/3, 9733/3, 9734/3, 9740/3, 9741/3, 9750/3, 9754/3, 9755/3, 9756/3, 9757/3, 9758/3, 9760/3, 9823/3, 9826/3, 9827/3, 9832/3, 9837/3, 9860/3, 9861/3, 9866/3, 9930/3
Germ Cell Tumors and Cysts
Germ cell tumors, cysts and heterotopias 8020/3, 8440/3, 9060/3, 9061/3, 9064/3, 9065/3, 9070/3, 9071/3, 9072/3, 9080/3, 9081/3, 9082/3, 9083/3, 9084/3, 9085/3, 9100/3, 9101/3
Tumors of Sellar Region
Tumors of the pituitary 8140/3, 8246/3, 8260/3, 8270/3, 8272/3, 8280/3, 8281/3, 8290/3, 8300/3, 8310/3, 8323/3
Unclassified Tumors
Hemangioma 9120/3, 9130/3, 9133/3, 9140/3
Neoplasm, unspecified 8000/3, 8001/3, 8002/3, 8003/3, 8004/3, 8005/3, 8010/3, 8021/3
All other 8320/3, 8710/3, 8711/3, 8811/3, 8840/3, 8896/3, 8980/3, 9503/3, 9580/3

aIncludes all the histologies listed in the standard definition of reportable brain tumors from the Consensus Conference on Brain Tumor Definitions.

bInternational Classification of Diseases for Oncology, 3rd Edition, 2000. World Health Organization, Geneva, Switzerland.

cSee the CBTRUS website for additional information about the specific histology codes included in each group: http://www.cbtrus.org.

dHistology not currently used to US cancer registration, will be included starting with diagnosis year 2015. See NAACCR website: http://www.naaccr.org/LinkClick.aspx?fileticket=4Hx-2XJJqFo%3d&tabid=161&mid=523.

*All or some of this histology is included in the CBTRUS definition of gliomas, including ICD-O-3 histology codes 9380-9384, 9391-9460.

Abbreviations: CBTRUS, Central Brain Tumor Registry of the United States; NOS, not otherwise specified.

Table 2c.

Central Brain Tumor Registry of the United States (CBTRUS), Brain and Central Nervous System Tumor Non-Malignant Histologiesa

Histology ICD-O-3b Histology Codec
Tumors of Neuroepithelial Tissue
Unique astrocytoma variants* 9384/1
Ependymal tumors* 9383/1, 9394/1
Choroid plexus 9390/0,1
Other neuroepithelial tumors 9363/0, 9444/1
Neuronal and mixed neuronal- glial tumors* 8680/0,1, 8681/1, 8690/1, 8693/1, 9412/1, 9413/0, 9442/1, 9492/0 (excluding site C75.1), 9493/0, 9505/1, 9506/1, 9509/1d
Tumors of the pineal region 9360/1, 9361/1
Embryonal tumors 9490/0
Tumors of Cranial and Spinal Nerves
Nerve sheath tumors 9540/0,1, 9541/0, 9550/0, 9560/0,1, 9570/0, 9571/0
Other tumors of cranial and spinal nerves 9562/0
Tumors of Meninges
Meningioma 9530/0,1, 9531/0, 9532/0, 9533/0, 9534/0, 9537/0, 9538/1, 9539/1
Mesenchymal tumors 8324/0, 8800/0, 8810/0, 8815/0, 8824/0,1, 8830/0,1, 8831/0, 8835/1, 8836/1, 8850/0,1, 8851/0, 8852/0, 8854/0, 8857/0, 8861/0, 8870/0, 8880/0, 8890/0,1, 8897/1, 8900/0, 8920/1, 8935/0,1, 8990/0,1, 9040/0, 9136/1, 9150/0,1, 9170/0, 9180/0, 9210/0, 9241/0, 9373/0
Primary melanocytic lesions 8728/0,1, 8770/0, 8771/0
Other neoplasms related to the meninges 9161/1, 9220/0,1, 9535/0
Lymphomas and Hemopoietic Neoplasms
Other hemopoietic neoplasms 9740/1, 9751/1, 9752/1, 9753/1, 9766/1, 9970/1
Germ Cell Tumors and Cysts
Germ cell tumors, cysts and heterotopias 8440/0, 9080/0,1, 9084/0
Tumors of Sellar Region
Tumors of the pituitary 8040/0,1, 8140/0,1, 8146/0, 8260/0, 8270/0, 8271/0, 8272/0, 8280/0, 8281/0, 8290/0, 8300/0, 8310/0, 8323/0, 9492/0 (site C75.1 only), 9582/0
Craniopharyngioma 9350/1, 9351/1, 9352/1
Unclassified Tumors
Hemangioma 9120/0, 9121/0, 9122/0, 9123/0, 9125/0, 9130/0,1, 9131/0, 9133/1
Neoplasm, unspecified 8000/0,1, 8001/0,1, 8005/0, 8010/0
All other 8452/1, 8711/0, 8713/0, 8811/0, 8840/0, 9173/0, 9580/0

aIncludes all the histologies listed in the standard definition of reportable brain tumors from the Consensus Conference on brain tumor definition.

bInternational Classification of Diseases for Oncology, 3rd Edition, 2000. World Health Organization, Geneva, Switzerland.

cSee the CBTRUS website for additional information about the specific histology codes included in each group: http://www.cbtrus.org.

dHistology not currently used to US cancer registration, will be included starting with diagnosis year 2015. See NAACCR website: http://www.naaccr.org/LinkClick.aspx?fileticket=4Hx-2XJJqFo%3d&tabid=161&mid=523.

*All or some of this histology is included in the CBTRUS definition of gliomas, including ICD-O-3 histology codes 9380-9384, 9391-9460.

Abbreviations: CBTRUS, Central Brain Tumor Registry of the United States; NOS, not otherwise specified.

Table 2d.

ICD-O-3 Morphology Codes for all Histologies Included in Gliomaa Major Histology Groupings, Central Brain Tumors Registry of the United States (CBTRUS), 2015

Adolescent and Young Adult Report Major Histology Groupings CBTRUS Histology Groupings ICD-O-3b Morphology Code Histology Name Sub-histologies
Astrocytomas Pilocytic astrocytoma 9421/1 Pilocytic astrocytoma Piloid astrocytoma; Juvenile astrocytoma; Spongioblastoma, NOS
9425/3 Pilomyxoid astrocytoma
Diffuse astrocytoma 9400/3 Astrocytoma, NOS Astroglioma; Astrocytic glioma; Diffuse astrocytoma; Astrocytoma, low grade; Cystic astrocytoma; Diffuse astrocytoma, low grade
9410/3 Protoplasmic astrocytoma
9411/3 Gemistocytic astrocytoma Gemistocytoma
9420/3 Fibrillary astrocytoma Fibrous astrocytoma
Anaplastic astrocytoma 9401/3 Astrocytoma, anaplastic
Unique astrocytoma variants 9381/3 Gliomatosis cerebri
9384/1 Subependymal giant cell astrocytoma
9424/3 Pleomorphic xanthoastrocytoma
Glioblastoma 9440/3 Glioblastoma Glioblastoma multiforme; Spongioblastoma multiforme
9441/3 Giant cell glioblastoma Monstrocellular sarcoma
9442/3 Gliosarcoma Glioblastoma with sarcomatous component
Oligodendrogliomas Oligodendroglioma 9450/3 Oligodendroglioma, NOS
Anaplastic oligodendroglioma 9451/3 Oligodendroglioma, anaplastic
9460/3 Oligodendroblastoma
Oligoastrocytoma Oligoastrocytic tumors 9382/3 Mixed glioma Oligoastrocytoma; Anaplastic oligoastrocytoma
Ependymal tumors Ependymal tumors 9383/1 Subependymoma Subependymal glioma; Subependymal astrocytoma, NOS; Mixed subependymoma-ependymoma
9391/3 Ependymoma, NOS Epithelial ependymoma; Cellular ependymoma; Clear cell ependymoma; Tanycytic ependymoma
9392/3 Ependymoma, anaplastic Ependymoblastoma
9393/3 Papillary ependymoma
9394/1 Myxopapillary ependymoma
Glioma malignant, NOS Glioma malignant, NOS 9380/3 Glioma, malignant Glioma, NOS (except nasal glioma, not neoplastic)
Other neuroepithelial tumors Other neuroepithelial tumors 9423/3 Polar spongioblastoma Spongioblastoma polare; Primitive polar spongioblastoma
9430/3 Astroblastoma
9444/1 Chordoid glioma Chordoid glioma of third ventricle
Neuronal and mixed neuronal-glial tumors Neuronal and mixed neuronal-glial tumors 9412/1 Desmoplastic infantile astrocytoma Desmoplastic infantile ganglioglioma
9413/0 Dysembryoplastic neuroepithelial tumor
9442/1 Gliofibroma

aICD-O-3 histology codes: 9380-9384, 9391-9460.

bInternational Classification of Diseases for Oncology, 3rd Edition, 2000. World Health Organization, Geneva, Switzerland.

Abbreviations: CBTRUS, Central Brain Tumor Registry of the United States; NOS, not otherwise specified.

Caution should be used in comparing incidence rates between statistical reports from different reporting agencies or previous CBTRUS statistical reports due to differences in case definition, data collection, rate calculations, and/or reporting delays.

Methods

Counts, means, rates, ratios, proportions, and other relevant statistics were calculated using R 3.1.2 statistical software18 and/or SEER*Stat 8.2.1.19 Figures were created in R 3.1.218 using rgeos,20 rgdal,21 maptools,22 ggplot2,23 plotrix,24 and SEER2R.25 Statistics are suppressed when counts are fewer than 16 within a cell. However, the data in the suppressed cells are included in the counts and rates for the totals except when data from only one cell are suppressed within a category to prevent identification of the number in the suppressed cell. Note that reported percentages may not add up to 100% due to rounding.

Population data for each geographic region were obtained from the SEER program website13 for the purpose of rate calculations.

Age-adjusted incidence rates and 95% confidence intervals26 were estimated for malignant and non-malignant tumors and for selected histology groupings by gender, race, Hispanic ethnicity, and age groups. Age-adjustment was based on one-year age groupings and standardized to the 2000 US standard population. Combined populations for the regions included in this report are shown in Appendix A and Appendix B.

CBTRUS presents statistics on specific brain and CNS tumor patterns in age groups 15-19, 20-24, 25-29, 30-34 and 35-39 years. Race categories in this report are all races, White, Black, American Indian/Alaskan Native (AIAN), and Asian/Pacific Islander (API). Other race, unspecified, and unknown race are included in statistics that are not race-specific. Hispanic ethnicity was defined using the NAACCR Hispanic Identification Algorithm, version 2, data element, which utilizes a combination of cancer registry data fields (Spanish/Hispanic Origin data element, birthplace, race, and surnames) to directly and indirectly classify cases as Hispanic or Non-Hispanic.27 The NAACCR regional scheme (http://faststats.naaccr.org/usregions.php) was used for statistics reported by region of the US.

Estimation of Expected Numbers of Brain and CNS Tumors in 2015 and 2016

Estimated numbers of expected malignant and non-malignant brain and CNS tumors in adolescents and young adults (age 15-39 years) were calculated for 2015 and 2016. To project 2015 and 2016 counts of newly diagnosed brain and CNS tumors, age-adjusted annual brain tumor incidence rates were generated for 2000-2012 for malignant tumors and 2006-2012 for non-malignant tumors. These were generated by state, age, and histologic type. Joinpoint 4.2.028 was used to fit regression models to these incidence rates,29 which were used to predict numbers of cases in future years using the parameter from the selected models. The models allowed for a maximum of two joinpoints (one for non-malignant tumors), a minimum of three observations from a joinpoint to either end of the data, and a minimum of three observations between joinpoints.30 Permutation procedures included in Joinpoint were used to select the best fitting model.

Estimation of Mortality Rates

Age-adjusted mortality rates for deaths resulting in adolescents and young adults (age 15-39 years) from all malignant brain and CNS tumors were calculated using the mortality data available in the CDC WONDER Online Database provided by National Center for Health Statistics (NCHS).8 The SEER cause of death recode31 was used to categorize all mortality data used in this report. In addition to total age-adjusted rate for the US, age-adjusted rates are presented by gender and region of the US.

Estimation of Lifetime Risk of Developing or Dying from a Malignant Brain and CNS Tumor

Probability of developing or dying from a malignant brain and CNS tumor was estimated for the years 2009 to 2011 using the SEER 18 incidence data,32 and total US mortality data using DevCan.33

Estimation of Survival Rates

Survival analyses were conducted using multiple-year cohorts which include all persons diagnosed during the time period specified for the survival calculation.34 Second or later primary tumors, cases diagnosed at autopsy, cases in which race or sex is coded as other or unknown, and cases known to be alive but for whom follow-up time could not be calculated were excluded from the SEER survival data analyses. SEER*Stat 8.2.1 statistical software was used to estimate one-, two-, three-, four-, five-, and ten-year relative survival rates for primary malignant brain tumor cases diagnosed between 1995-2012 in eighteen SEER areas.19,32 This software utilizes life-table (actuarial) methods to compute survival estimates and accounts for current follow-up. Survival was estimated for brain (C71.0-C71.9), meninges (C70.0-C70.9), spinal cord, cranial nerves, and other parts of the central nervous system (C72.0-C72.9), pituitary and pineal glands (C75.1-C75.3), and olfactory tumors of the nasal cavity [C30.0 (9522-9523)]. Survival was not calculated for non-malignant tumors as collection of these cases has only been mandated since 2004, and, therefore, not enough time has elapsed to accurately calculate relative survival.

Five-year conditional survival estimates were calculated for brain tumor cases diagnosed between 1995-2012 in eighteen SEER areas using SEER*Stat 8.2.1 statistical software.19,32 Conditional survival is an estimate of the probability that a patient will survive for a specific time period given that they have already survived a certain number of years. For example, 5-year conditional survival for an adolescent (age 15-19 years) who has lived two years since their diagnosis with pilocytic astrocytoma is 98.5%, which means that 98.5% of adolescents who have already survived two years will eventually survive five years.

Results

Cancer is a significant source of morbidity and mortality for adolescents and young adults (age 15-39 years) in the US. Death due to cancer is the fourth most common cause of death overall in this age group (8.78 deaths per 100,000 persons annually) with only accidents (32.95 deaths per 100,000), suicide (12.77 deaths per 100,000), and homicide (10.06 per 100,000) causing more deaths annually in this population between 2008 and 2012. Among all deaths due to cancer by histology, brain and CNS tumors are the 3rd most common cause of cancer death. Approximately 1.5% of persons will be diagnosed with cancer between the ages of 15 and 39 years, and approximately 0.07% will develop a primary malignant brain tumor.33 Approximately 10,600 brain and CNS tumors are diagnosed in AYA per year, and they are the cause of approximately 450 deaths annually in this age group.

Comparison to Other Common AYA Cancers

Average annual age-adjusted and crude incidence rates for the five most common cancers in adolescents and young adults (age 15-39 years) are shown in Figure 1A-F. Due to the comparatively low mortality rate that many common cancers have, these may not be the same cancers included for mortality comparison.

  • Primary brain and CNS tumors are the third most common cancer in those age 15-39 years (10.43 per 100,000 population), with only breast (21.22 per 100,000 population) and thyroid cancer (10.84 per 100,000 population) occurring more frequently.

  • Primary brain and CNS tumors are the most commonly occurring type of cancer in those age 15-19 years (6.19 per 100,000 population), followed by testes (3.61 per 100,000 male population), Hodgkin lymphoma (3.23 per 100,000 population), leukemia (2.92 per 100,000), and thyroid (2.58 per 100,000 population).

  • Brain and CNS tumors are the second most commonly occurring cancer in those age 20-24 years (7.12 per 100,000), with only cancer of the testes occurring more frequently (9.43 per 100,000 males).

  • Brain and CNS tumors are the third most commonly occurring cancer in those age 25-29 years (9.93 per 100,000 population), preceded by cancer of the testes (14.01 per 100,000 male population) and thyroid (10.23 per 100,000 population).

  • Brain and CNS tumors are the fourth most commonly occurring cancer in those age 30-34 years (12.65 per 100,000 population), preceded by cancer of the breast (27.14 per 100,000 female population), thyroid (15.52 per 100,000 population), and testes (13.84 per 100,000 male population).

  • Brain and CNS tumors are the third most commonly occurring cancer in those age 35-39 years (15.54 per 100,000 population), preceded by cancer of the breast (60.91 per 100,000 population), and thyroid (18.87 per 100,000 population).

Fig. 1.

Fig. 1.

Average Annual Age-Adjusted Incidence Rates for the Five Most Common Cancers in Persons Age A) 15-39 Years, B) 15-19 Years, C) 20-24 Years, D) 25-29 Years, E) 30-34 Years, and F) 35-39 Years, (CBTRUS 2008-2012 and USCS 2008-2012).

Average annual age-adjusted and crude mortality rates overall and by 5-year age groups for the five most common causes of cancer death in adolescents and young adults are showed in Figure 2A-F. Due to the high mortality caused by cancers with lower incidence, these cancers may be different than those displayed in incidence comparisons. Age ranges for mortality figures reflect age at death, as compared to incidence rates that reflect age at diagnosis. Time period between diagnosis and death can vary substantially by tumor type and by individual.

  • Primary brain and CNS tumors are the third most common cause of cancer death in those age 15-39 years (1.09 per 100,000 population), with only breast cancer (1.78 per 100,000 female population) and colorectal cancer (1.19 per 100,000 population population) causing a higher rate of deaths.

  • Primary brain and CNS tumors are the second most common cause of cancer death in persons age 15-19 years (0.49 per 100,000 population in age 15-19 years, 0.56 per 100,000 in age 20-24 years, and 0.77 per 100,000 population in age 25-29 years), with only leukemia causing more deaths (0.79 per 100,000 in age 15-19 years, 0.97 per 100,000 population in age 20-24 years, and 1.03 per 100,000 population in age 25-29 years).

  • Primary brain and CNS tumors are the third most common cause of cancer death in persons age 30-39 years (1.11 per 100,000 population in age 30-34 years, and 1.62 per 100,000 population in age 35-39 years). In those age 30-34 years, the more common causes of cancer death are leukemia (1.14 per 100,000 population) and breast cancer (1.36 per 100,000 population), while in those age 35-39 years the more common causes are due to colorectal cancer (2.21 per 100,000 population) and breast cancer (3.36 per 100,000 population).

Fig. 2.

Fig. 2.

Average Annual Age-Adjusted and Crude Mortality Rates for the Five Most Common Causes of Death Due to Cancer in Persons Age A) 15-39 Years, B) 15-19 Years, C) 20-24 Years, D) 25-29 Years, E) 30-34 Years, and F) 35-39 Years, (NVSS 2008-2012).

Overall Incidence by Age Group and Year of Diagnosis

Between 2008 and 2012, 53,083 primary brain and CNS tumors were diagnosed in adolescents and young adults (age 15-39 years) in the US, for a total annual age-adjusted incidence of 10.43 per 100,000 population (Table 3). Average annual age-adjusted incidence rates of primary brain and CNS tumors and total tumors occurring in the five year period covered in this report are shown in Figure 3 and Table 3.

  • Incidence of primary brain and CNS tumors increases with increasing age in those age 15-39 years.

Table 3.

Five-Year Total, Annual Average Totala and Average Annual Age-Adjusted Incidence Ratesb for Brain and Central Nervous System Tumors in Adolescents and Young Adults Ages 15-39 Years Overall and by Major Histology Groupings, Histology, and Age Groups, American Brain Tumor Association Adolescent and Young Adult Brain Tumor Report: CBTRUS, 2008-2012

Histology 15-39
15-19
20-24
25-29
30-34
35-39
5-year total Annual average Rate 95% CI Rate 95% CI Rate 95% CI Rate 95% CI Rate 95% CI Rate 95% CI
Tumors of Neuroepithelial Tissue 17,776 3,555 3.44 (3.39-3.49) 2.83 (2.73-2.93) 2.75 (2.65-2.85) 3.49 (3.38-3.61) 3.91 (3.79-4.04) 4.14 (4.01-4.26)
Pilocytic astrocytoma 1,519 304 0.28 (0.27-0.30) 0.60 (0.55-0.65) 0.31 (0.28-0.35) 0.21 (0.18-0.24) 0.18 (0.16-0.21) 0.13 (0.11-0.15)
Diffuse astrocytoma 2,413 483 0.47 (0.45-0.49) 0.27 (0.24-0.31) 0.35 (0.32-0.39) 0.52 (0.47-0.56) 0.61 (0.56-0.66) 0.58 (0.53-0.63)
Anaplastic astrocytoma 1,398 280 0.27 (0.26-0.29) 0.10 (0.08-0.12) 0.19 (0.16-0.21) 0.33 (0.29-0.36) 0.36 (0.32-0.40) 0.39 (0.35-0.43)
Unique astrocytoma variants 381 76 0.07 (0.06-0.08) 0.11 (0.09-0.13) 0.10 (0.09-0.13) 0.06 (0.05-0.08) 0.05 (0.04-0.06) 0.04 (0.02-0.05)
Glioblastoma 2,393 479 0.48 (0.46-0.50) 0.19 (0.17-0.22) 0.28 (0.25-0.31) 0.43 (0.39-0.47) 0.56 (0.51-0.61) 0.88 (0.82-0.94)
Oligodendroglioma 1,488 298 0.29 (0.28-0.31) 0.09 (0.07-0.11) 0.16 (0.14-0.19) 0.32 (0.28-0.35) 0.43 (0.39-0.47) 0.45 (0.41-0.49)
Anaplastic oligodendroglioma 420 84 0.08 (0.08-0.09) 0.02 (0.01-0.02) 0.04 (0.03-0.05) 0.09 (0.07-0.11) 0.12 (0.10-0.14) 0.15 (0.13-0.17)
Oligoastrocytic tumors 1,333 267 0.26 (0.25-0.28) 0.06 (0.05-0.08) 0.16 (0.13-0.18) 0.36 (0.32-0.39) 0.38 (0.34-0.42) 0.35 (0.31-0.39)
Ependymal tumors 1,888 378 0.37 (0.35-0.38) 0.25 (0.22-0.28) 0.28 (0.25-0.32) 0.38 (0.34-0.42) 0.45 (0.41-0.50) 0.46 (0.42-0.51)
Glioma malignant, NOS 1,384 277 0.26 (0.25-0.28) 0.32 (0.29-0.36) 0.24 (0.21-0.27) 0.25 (0.22-0.28) 0.26 (0.23-0.30) 0.25 (0.22-0.29)
Choroid plexus tumors 183 37 0.03 (0.03-0.04) 0.05 (0.04-0.06) 0.02 (0.01-0.03) 0.04 (0.03-0.05) 0.04 (0.03-0.05) 0.03 (0.02-0.05)
Other neuroepithelial tumors 30 0.01 (0.00-0.01)
Neuronal and mixed neuronal-glial tumors 1,773 355 0.33 (0.32-0.35) 0.48 (0.44-0.53) 0.37 (0.33-0.41) 0.30 (0.27-0.34) 0.28 (0.25-0.32) 0.25 (0.22-0.28)
Tumors of the pineal region 258 52 0.05 (0.04-0.06) 0.05 (0.03-0.06) 0.05 (0.04-0.06) 0.05 (0.04-0.07) 0.05 (0.03-0.06) 0.05 (0.04-0.07)
Embryonal tumors 915 183 0.17 (0.16-0.18) 0.24 (0.21-0.27) 0.19 (0.17-0.22) 0.18 (0.15-0.20) 0.14 (0.12-0.16) 0.12 (0.10-0.14)
Tumors of Cranial and Spinal Nerves 4,549 910 0.91 (0.88-0.94) 0.36 (0.32-0.39) 0.50 (0.46-0.54) 0.83 (0.77-0.88) 1.14 (1.08-1.21) 1.61 (1.54-1.69)
Nerve sheath tumors 4,545 909 0.91 (0.88-0.93) 0.35 (0.32-0.39) 0.50 (0.46-0.54) 0.83 (0.77-0.88) 1.14 (1.08-1.21) 1.61 (1.53-1.69)
Other tumors of cranial and spinal nerves
Tumors of Meninges 9,707 1,941 1.98 (1.95-2.02) 0.45 (0.41-0.49) 0.76 (0.71-0.81) 1.43 (1.36-1.50) 2.65 (2.55-2.76) 4.25 (4.12-4.38)
Meningioma 8,440 1,688 1.74 (1.70-1.77) 0.30 (0.27-0.34) 0.57 (0.53-0.62) 1.20 (1.14-1.27) 2.34 (2.24-2.43) 3.90 (3.78-4.03)
Mesenchymal tumors 336 67 0.07 (0.06-0.07) 0.05 (0.03-0.06) 0.05 (0.04-0.06) 0.04 (0.03-0.06) 0.09 (0.07-0.11) 0.10 (0.08-0.12)
Primary melanocytic lesions 22 0.00 (0.00-0.01)
Other neoplasms related to the meninges 909 182 0.18 (0.17-0.19) 0.10 (0.08-0.12) 0.14 (0.12-0.16) 0.18 (0.15-0.21) 0.22 (0.20-0.26) 0.24 (0.21-0.27)
Lymphomas and Hematopoietic Neoplasms 619 124 0.12 (0.11-0.13) 0.04 (0.03-0.05) 0.07 (0.06-0.09) 0.10 (0.08-0.12) 0.16 (0.14-0.19) 0.24 (0.21-0.27)
Lymphoma 576 115 0.12 (0.11-0.13) 0.02 (0.02-0.04) 0.07 (0.05-0.08) 0.09 (0.07-0.11) 0.15 (0.13-0.18) 0.23 (0.20-0.26)
Other hematopoietic neoplasms 43 0.01 (0.01-0.01)
Germ Cell Tumors and Cysts 656 131 0.12 (0.11-0.13) 0.27 (0.24-0.31) 0.14 (0.12-0.17) 0.09 (0.07-0.11) 0.06 (0.05-0.08) 0.05 (0.04-0.07)
Germ cell tumors, cysts and heterotopias 656 131 0.12 (0.11-0.13) 0.27 (0.24-0.31) 0.14 (0.12-0.17) 0.09 (0.07-0.11) 0.06 (0.05-0.08) 0.05 (0.04-0.07)
Tumors of Sellar Region 16,559 3,312 3.23 (3.18-3.28) 1.79 (1.71-1.87) 2.44 (2.35-2.54) 3.36 (3.25-3.47) 4.00 (3.88-4.13) 4.43 (4.30-4.56)
Tumors of the pituitary 15,892 3,178 3.10 (3.05-3.15) 1.66 (1.58-1.73) 2.32 (2.24-2.42) 3.25 (3.14-3.36) 3.87 (3.75-3.99) 4.27 (4.15-4.40)
Craniopharyngioma 667 133 0.13 (0.12-0.14) 0.13 (0.11-0.15) 0.12 (0.10-0.14) 0.11 (0.09-0.13) 0.13 (0.11-0.16) 0.15 (0.13-0.18)
Unclassified Tumors 3,217 643 0.63 (0.60-0.65) 0.46 (0.42-0.50) 0.46 (0.42-0.50) 0.63 (0.58-0.68) 0.72 (0.67-0.77) 0.83 (0.77-0.89)
Hemangioma 1,538 308 0.30 (0.29-0.32) 0.20 (0.17-0.23) 0.23 (0.20-0.26) 0.31 (0.27-0.34) 0.34 (0.31-0.38) 0.41 (0.37-0.46)
Neoplasm, unspecified 1,667 333 0.32 (0.31-0.34) 0.26 (0.23-0.29) 0.23 (0.20-0.26) 0.32 (0.29-0.36) 0.37 (0.33-0.41) 0.42 (0.38-0.46)
All other
TOTALc 53,083 10,617 10.43 (10.34-10.52) 6.19 (6.04-6.34) 7.12 (6.97-7.28) 9.93 (9.73-10.12) 12.65 (12.43-12.88) 15.54 (15.3-15.79)

aAnnual average cases are calculated by dividing the five-year total by five.

bRates are per 100,000 and are age-adjusted to the 2000 US standard population.

cRefers to all brain tumors including histologies not presented in this table.

- Counts are not presented when fewer than 16 cases were reported for the specific histology category. Suppressed cases are included in the total count.

Abbreviations: NPCR, National Program of Cancer Registries; SEER, Surveillance, Epidemiology and End Results program; CI, confidence interval; NOS, not otherwise specified.

Fig. 3.

Fig. 3.

Average Annual Age-Adjusted Incidence Rates and Annual Average Casesa of Primary Brain and CNS Tumors by Age Groups (15-39 Years), (CBTRUS 2008-2012).

Incidence by Region of the US

Incidence of primary brain and CNS tumors in adolescents and young adults (age 15-39 years) by region of the US is shown in Figure 4a. There are many factors that may affect cancer incidence between different geographic regions including cancer registration practices, and diagnostic practices in addition to true incidence differences. In particular, many central cancer registries vary in their collection of tumors diagnosed only radiographically where persons do not receive surgery, which may have a particularly significant effect on reporting incidence of non-malignant tumors.

  • Incidence is lowest in New England (9.42 per 100,000 population) and Pacific (9.47 per 100,000 population) regions.

  • Incidence is highest in Middle Atlantic (11.66 per 100,000 population) and Mountain (11.14 per 100,000 population) regions.

Incidence of malignant primary brain and CNS tumors in adolescents and young adults (age 15-39 years) by region of the US is shown in Figure 4b.

  • Incidence is lowest in Pacific (2.98 per 100,000 population) and South Atlantic (3.19 per 100,000 population).

  • Incidence is highest in West North Central (3.54 per 100,000 population) and Middle Atlantic (3.50 per 100,000 population) regions.

Fig. 4a.

Fig. 4a.

Average Annual Age-Adjusted Incidence Rates of All Primary Brain and CNS Tumors by Region of the United States (Age 15-39 Years), (CBTRUS 2008-2012).

Fig. 4b.

Fig. 4b.

Average Annual Age-Adjusted Incidence Rates of All Malignant Brain and CNS Tumors by Region of the United States (Age 15-39 Years), (CBTRUS 2008-2012).

Incidence of non-malignant primary brain and CNS tumors in adolescents and young adults (age 15-39 years) by region of the US is shown in Figure 4c.

  • Incidence is lowest in New England (6.14 per 100,000 population) and Pacific (6.49 per 100,000 population) regions.

  • Incidence is highest in Mountain (7.74 per 100,000 population) and West South Central regions (7.70 per 100,000 population).

Fig. 4c.

Fig. 4c.

Average Annual Age-Adjusted Incidence Rates of All Non-Malignant Brain and CNS Tumors by Region of the United States (Age 15-39 Years), (CBTRUS 2008-2012).

Distribution and Incidence by Site and Age Group

Distribution of all primary brain tumors (Table 2a) in adolescents and young adults (age 15-39 years) by site and age groups are shown in Figures 5 and 6

  • In all AYA age groups, the largest proportion of tumors occurs in the pituitary gland and craniopharyngeal duct (31.8%).

  • In persons age 25-39 years, tumors of the meninges are the second most common site of tumor occurrence and seem to increase with age (12.3% in age 25-29 years, 18.6% in age 30-34 years, and 25.2% in age 35-39 years).

Fig. 5.

Fig. 5.

Distributiona of All Primary Brain and CNS Tumors by Site, Age 15-39 Years (Five-Year Total = 53,083), (CBTRUS 2008-2012).

Fig. 6.

Fig. 6.

Distributiona of All Primary Brain and CNS Tumors by Site and Age Groups A) 15-19 Years (Five-Year Total = 6,747), B) 20-24 Years (Five-Year Total = 7,765), C) 25-29 Years (Five-Year Total = 10,385), D) 30-34 Years (Five-Year Total = 12,626), and E) 35-39 Years (Five-Year Total = 15,560), (CBTRUS 2008-2012).

Distribution of malignant primary brain tumors (Table 2b) in adolescents and young adults (age 15-39 years) by site and age groups are shown in Figure 7.

  • Overall, the largest proportion of malignant tumors in those age 15-39 years occur in the frontal lobe (28.8%), followed by other brain (15.4%). Together, 50.2% of all malignant tumors occur in the frontal, temporal, parietal, and occipital lobes of the brain.

  • In those age 15-19 years, tumors most commonly occur in the cerebellum (17.0%), followed by other brain (15.1%, see Table 1 for more details on what is included in the category other brain). In this group brain stem tumors make up 10.4% of tumors.

  • Tumors of the frontal lobe are the most common in persons age 20-39 years.

Fig. 7.

Fig. 7.

Distributiona of Primary Malignant Brain and CNS Tumors by Site, Age 15-39 Years (Five-Year Total = 16,742), (CBTRUS 2008-2012).

Fig. 8.

Fig. 8.

Distributiona of Primary Malignant Brain and CNS Tumors by Site and Age Groups A) 15-19 Years (Five-Year Total = 2,747), B) 20-24 Years (Five-Year Total = 2,728), C) 25-29 Years (Five-Year Total = 3,421), D) 30-34 Years (Five-Year Total = 3,721), and E) 35-39 Years (Five-Year Total = 4,125), (CBTRUS 2008-2012).

Distribution of non-malignant primary brain tumors (Table 2c) by site and age groups in adolescents and young adults (age 15-39 years) are shown in Figures 9 and 10.

  • Overall, the largest proportion of non-malignant tumors occurs in the pituitary gland and craniopharyngeal duct (46.1%).

  • The incidence of tumors in the pituitary gland and craniopharyngeal duct decrease with age whereas incidence of those found in the meninges increase with age.

Fig. 9.

Fig. 9.

Distributiona of Non-Malignant Primary Brain and CNS Tumors by Site, Age 15-39 Years (Five-Year Total = 36,341), (CBTRUS 2008-2012).

Fig. 10.

Fig. 10.

Distributiona of Non-Malignant Primary Brain and CNS Tumors by Site by Age Groups A) 15-19 Years (Five-Year Total = 4,000), B) 20-24 Years (Five-Year Total = 5,037), C) 25-29 Years (Five-Year Total = 6,964), D) 30-34 Years (Five-Year Total = 8,905), and E) 35-39 Years (Five-Year Total = 11,435), (CBTRUS 2008-2012).

Distribution and Incidence by Histology and Age Group

Distribution of all primary brain tumors by histology and age groups in adolescents and young adults (age 15-39 years) are shown in Figures 11 and 12.

  • The most common histologic category among all persons age 15-39 years are tumors of the pituitary (29.9%). These are also the most common tumor within each five-year age group.

  • In those age 15-29 years, the second most common histology is astrocytomas (20.5% in those age 15-19 years, 17.2% in those age 20-24 years, and 15.5% in those age 25-29 years). The percentage of tumors represented by astrocytomas decreases steadily with increasing age.

  • In persons age 30-39 years, meningiomas are the second most common histology (18.4% in those age 30-34 years, and 25.1% in those age 35-39 years). The percentage of meningioma increases steadily with increasing age.

Fig. 11.

Fig. 11.

Distributiona of All Primary Brain and CNS Tumors by Histology, Age 15-39 Years (Five-Year Total = 53,083), (CBTRUS 2008-2012).

Fig. 12.

Fig. 12.

Distributiona of All Primary Brain and CNS Tumors by Histology by Age Groups A) 15-19 Years (Five-Year Total = 6,747), B) 20-24 Years (Five-Year Total = 7,765), C) 25-29 Years (Five-Year Total = 10,385), D) 30-34 Years (Five-Year Total = 12,626), and E) 35-39 Years (Five-Year Total = 15,560), (CBTRUS 2008-2012).

Distribution of malignant primary brain tumors by histology and age group in adolescents and young adults (age 15-39 years) are shown in Figures 13 and 14.

  • The most common malignant histology in all persons age 15-39 years is astrocytoma, including pilocytic astrocytoma (47.6%), and this is also the most common malignant histology in all age groups.

  • The second most common malignant histology in persons age 20-39 years is oligodendroglioma (12.3% in those age 25-29 years, 14.7% in those age 30-34 years, 14.5% in those age 35-39 years). Germ cell tumors are the second most common malignant histology in those age 15-19 years (9.6%)

Fig. 13.

Fig. 13.

Distributiona of Primary Malignant Brain and CNS Tumors by Histology, Age 15-39 Years (Five-Year Total = 16,742), (CBTRUS 2008-2012).

Fig. 14.

Fig. 14.

Distributiona of Primary Malignant Brain and CNS Tumors by Histology by Age Groups A) 15-19 Years (Five-Year Total = 2,747), B) 20-24 Years (Five-Year Total = 2,728), C) 25-29 Years (Five-Year Total = 3,421), D) 30-34 Years (Five-Year Total = 3,721), and E) 35-39 Years (Five-Year Total = 4,125), (CBTRUS 2008-2012).

Distribution of non-malignant primary brain tumors by histology and age groups in adolescents and young adults (age 15-39 years) are shown in Figures 15 and 16.

  • The most common histology in all AYA age groups is tumors of the pituitary (43.7% of tumors in those age 15-39 years).

  • In persons age 15-19 years, neuronal and mixed neuronal-glial tumors are the second most common histology, representing 12.5% of all non-malignant tumors.

  • In those age 20-39 years, meningiomas are the second most common histology.

Fig. 15.

Fig. 15.

Distributiona of Non-Malignant Primary Brain and CNS Tumors by Histology, Age 15-39 Years (Five-Year Total = 36,341), (CBTRUS 2008-2012).

Fig. 16.

Fig. 16.

Distributiona of Non-Malignant Primary Brain and CNS Tumors by Histology and Age Groups A) 15-19 Years (Five-Year Total = 4,000), B) 20-24 Years (Five-Year Total = 5,037), C) 25-29 Years (Five-Year Total = 6,964), D) 30-34 Years (Five-Year Total = 8,905), and E) 35-39 Years (Five-Year Total = 11,435), (CBTRUS 2008-2012).

Distribution and Incidence of Gliomas by Site, Histologic Group and Age Group

Distribution of all gliomas by site and age group in adolescents and young adults (age 15-39 years) are shown in Figures 17 and 18.

  • The frontal lobe is the most common site for gliomas in all age groups, and the majority of all gliomas occur in the frontal, occipital, parietal, and temporal lobes of the brain.

  • In the AYA population, those age 15-19 years have the highest proportion of brain stem gliomas, where these tumors represent 11.9% of all tumors. The proportion of gliomas occurring in the brain stem decreases with increasing age in AYA age groups.

Fig. 17.

Fig. 17.

Distributiona of Gliomas by Site, Age 15-39 Years (Five-Year Total = 15,002), (CBTRUS 2008-2012).

Fig. 18.

Fig. 18.

Distributiona of Gliomas by Site and Age Groups A) 15-19 Years (Five-Year Total = 2,327), B) 20-24 Years (Five-Year Total = 2,381), C) 25-29 Years (Five-Year Total = 3,112), D) 30-34 Years (Five-Year Total = 3,454), and E) 35-39 Years (Five-Year Total = 3,728), (CBTRUS 2008-2012).

Distribution of all gliomas by histology and age group in adolescents and young adults (age 15-39 years) are shown in Figures 19 and 20.

  • Diffuse astrocytomas (16.1%) and glioblastoma (16.0%) are the most common glioma histologies in those age 15-39 years.

  • In persons age 15-19 years, the most common glioma histology is pilocytic astrocytoma, which represents 27.9% of all gliomas in AYA, but decreases in all subsequent AYA age groups.

  • In those age 35-39 years glioblastoma is the most common glioma histology, where it represents 23.6% of all gliomas. The proportion of glioblastoma among all gliomas increases with age in the AYA population.

Fig. 19.

Fig. 19.

Distributiona of Gliomas by Histology, Age 15-39 Years (Five-Year Total = 15,002), (CBTRUS 2008-2012).

Fig. 20.

Fig. 20.

Distributiona of Gliomas by Histology by Age Groups, A) 15-19 Years (Five-Year Total = 2,327), B) 20-24 Years (Five-Year Total = 2,381), C) 25-29 Years (Five-Year Total = 3,112), D) 30-34 Years (Five-Year Total = 3,454), and E) 35-39 Years (Five-Year Total = 3,728), (CBTRUS 2008-2012).

Incidence by Gender and Age Groups

Average annual incidence rates overall and in adolescents and young adult age groups for males are shown in Table 4, and for females in Table 5.

  • Overall, the incidence of primary brain and CNS tumors in females (12.24 per 100,000 population) is higher than those in males (8.64 per 100,000 population) in AYA.

  • Incidence rates in persons age 15-19 years are only slightly higher in females (6.83 per 100,000 population) as compared to males (5.58 per 100,000 population), but the difference by gender increases with increasing age.

Table 4.

Five-Year Total, Annual Average Totala and Average Annual Age-Adjusted Incidence Ratesb for Brain and Central Nervous System Tumors in Males Age 15-39 Years by Major Histology Groupings, Histology, and Age Groupings, American Brain Tumor Association Adolescent and Young Adult Brain Tumor Report: CBTRUS, 2008-2012

Histology 15-39 (Male)
15-19 (Male)
20-24 (Male)
25-29 (Male)
30-34 (Male)
35-39 (Male)
5-year total Annual average Rate 95% CI Rate 95% CI Rate 95% CI Rate 95% CI Rate 95% CI Rate 95% CI
Tumors of Neuroepithelial Tissue 9,850 1,970 3.78 (3.71-3.86) 3.01 (2.87-3.16) 2.94 (2.80-3.09) 3.76 (3.60-3.93) 4.35 (4.17-4.54) 4.73 (4.54-4.93)
Pilocytic astrocytoma 792 158 0.29 (0.27-0.31) 0.61 (0.55-0.68) 0.33 (0.29-0.38) 0.20 (0.17-0.24) 0.18 (0.14-0.22) 0.13 (0.10-0.17)
Diffuse astrocytoma 1,373 275 0.53 (0.50-0.56) 0.27 (0.23-0.32) 0.41 (0.36-0.47) 0.58 (0.52-0.65) 0.70 (0.63-0.78) 0.67 (0.60-0.74)
Anaplastic astrocytoma 813 163 0.32 (0.29-0.34) 0.11 (0.08-0.14) 0.21 (0.18-0.26) 0.35 (0.30-0.41) 0.46 (0.40-0.52) 0.44 (0.38-0.50)
Unique astrocytoma variants 200 40 0.07 (0.06-0.08) 0.12 (0.10-0.16) 0.09 (0.07-0.12) 0.07 (0.05-0.10) 0.04 (0.02-0.06) 0.04 (0.03-0.06)
Glioblastoma 1,458 292 0.58 (0.55-0.61) 0.22 (0.18-0.26) 0.31 (0.27-0.36) 0.52 (0.46-0.59) 0.70 (0.63-0.77) 1.08 (0.99-1.17)
Oligodendroglioma 859 172 0.34 (0.31-0.36) 0.10 (0.08-0.13) 0.16 (0.13-0.20) 0.38 (0.33-0.44) 0.51 (0.44-0.57) 0.52 (0.45-0.58)
Anaplastic oligodendroglioma 248 50 0.10 (0.09-0.11) 0.06 (0.04-0.08) 0.11 (0.08-0.14) 0.13 (0.10-0.17) 0.17 (0.14-0.21)
Oligoastrocytic tumors 732 146 0.28 (0.26-0.31) 0.05 (0.04-0.08) 0.15 (0.12-0.19) 0.40 (0.35-0.46) 0.44 (0.38-0.50) 0.38 (0.33-0.44)
Ependymal tumors 1,025 205 0.40 (0.37-0.42) 0.27 (0.23-0.32) 0.31 (0.27-0.36) 0.38 (0.33-0.44) 0.46 (0.40-0.52) 0.54 (0.48-0.61)
Glioma malignant, NOS 717 143 0.27 (0.25-0.29) 0.33 (0.29-0.39) 0.25 (0.21-0.29) 0.23 (0.19-0.27) 0.27 (0.23-0.32) 0.28 (0.23-0.33)
Choroid plexus tumors 87 17 0.03 (0.03-0.04) 0.05 (0.03-0.07) 0.04 (0.02-0.06)
Other neuroepithelial tumors
Neuronal and mixed neuronal-glial tumors 898 180 0.33 (0.31-0.36) 0.52 (0.46-0.58) 0.39 (0.34-0.45) 0.26 (0.22-0.31) 0.24 (0.20-0.29) 0.27 (0.23-0.32)
Tumors of the pineal region 98 20 0.04 (0.03-0.05) 0.04 (0.02-0.06) 0.04 (0.02-0.06) 0.04 (0.02-0.06) 0.03 (0.02-0.05) 0.04 (0.03-0.07)
Embryonal tumors 543 109 0.20 (0.18-0.22) 0.31 (0.26-0.36) 0.20 (0.17-0.25) 0.19 (0.16-0.23) 0.16 (0.13-0.20) 0.15 (0.12-0.19)
Tumors of Cranial and Spinal Nerves 2,167 433 0.86 (0.83-0.90) 0.33 (0.28-0.38) 0.46 (0.41-0.52) 0.75 (0.68-0.83) 1.05 (0.97-1.15) 1.61 (1.50-1.72)
Nerve sheath tumors 2,165 433 0.86 (0.83-0.90) 0.33 (0.28-0.38) 0.46 (0.41-0.52) 0.75 (0.68-0.83) 1.05 (0.97-1.15) 1.60 (1.49-1.72)
Other tumors of cranial and spinal nerves
Tumors of Meninges 3,089 618 1.23 (1.19-1.28) 0.44 (0.38-0.50) 0.66 (0.59-0.73) 0.98 (0.90-1.07) 1.66 (1.55-1.78) 2.26 (2.13-2.40)
Meningioma 2,429 486 0.98 (0.94-1.02) 0.27 (0.23-0.32) 0.48 (0.42-0.54) 0.76 (0.69-0.84) 1.33 (1.23-1.44) 1.89 (1.77-2.01)
Mesenchymal tumors 160 32 0.06 (0.05-0.07) 0.04 (0.02-0.06) 0.04 (0.03-0.06) 0.05 (0.03-0.07) 0.08 (0.06-0.11) 0.10 (0.07-0.13)
Primary melanocytic lesions 16 0.01 (0.00-0.01)
Other neoplasms related to the meninges 484 97 0.19 (0.17-0.21) 0.12 (0.09-0.15) 0.13 (0.10-0.16) 0.17 (0.14-0.21) 0.24 (0.20-0.28) 0.27 (0.22-0.32)
Lymphomas and Hematopoietic Neoplasms 392 78 0.16 (0.14-0.17) 0.04 (0.03-0.06) 0.09 (0.07-0.12) 0.14 (0.11-0.17) 0.19 (0.16-0.24) 0.29 (0.25-0.35)
Lymphoma 368 74 0.15 (0.13-0.16) 0.09 (0.06-0.11) 0.13 (0.10-0.17) 0.19 (0.15-0.23) 0.28 (0.24-0.33)
Other hematopoietic neoplasms 24 0.01 (0.01-0.01)
Germ Cell Tumors and Cysts 524 105 0.19 (0.17-0.21) 0.46 (0.41-0.52) 0.22 (0.19-0.27) 0.13 (0.10-0.16) 0.09 (0.06-0.12) 0.06 (0.04-0.09)
Germ cell tumors, cysts and heterotopias 524 105 0.19 (0.17-0.21) 0.46 (0.41-0.52) 0.22 (0.19-0.27) 0.13 (0.10-0.16) 0.09 (0.06-0.12) 0.06 (0.04-0.09)
Tumors of Sellar Region 4,721 944 1.86 (1.81-1.92) 0.87 (0.80-0.95) 1.07 (0.99-1.16) 1.74 (1.62-1.85) 2.39 (2.25-2.53) 3.07 (2.92-3.23)
Tumors of the pituitary 4,398 880 1.74 (1.69-1.79) 0.76 (0.69-0.84) 0.95 (0.87-1.03) 1.64 (1.53-1.75) 2.25 (2.12-2.38) 2.93 (2.78-3.08)
Craniopharyngioma 323 65 0.12 (0.11-0.14) 0.11 (0.09-0.14) 0.12 (0.10-0.16) 0.10 (0.07-0.13) 0.14 (0.11-0.17) 0.14 (0.11-0.18)
Unclassified Tumors 1,425 285 0.55 (0.52-0.58) 0.43 (0.37-0.48) 0.43 (0.38-0.49) 0.51 (0.45-0.58) 0.65 (0.58-0.73) 0.71 (0.63-0.78)
Hemangioma 644 129 0.25 (0.23-0.27) 0.18 (0.15-0.22) 0.21 (0.17-0.25) 0.24 (0.20-0.28) 0.29 (0.24-0.34) 0.32 (0.27-0.37)
Neoplasm, unspecified 776 155 0.30 (0.28-0.32) 0.24 (0.20-0.29) 0.22 (0.18-0.26) 0.27 (0.23-0.32) 0.36 (0.31-0.42) 0.39 (0.34-0.45)
All other
TOTALc 22,168 4,434 8.64 (8.52-8.75) 5.58 (5.39-5.78) 5.88 (5.68-6.08) 8.01 (7.77-8.26) 10.39 (10.1-10.67) 12.73 (12.42-13.05)

aAnnual average cases are calculated by dividing the five-year total by five.

bRates are per 100,000 and are age-adjusted to the 2000 US standard population.

cRefers to all brain tumors including histologies not presented in this table.

– Counts are not presented when fewer than 16 cases were reported for the specific histology category. Suppressed cases are included in the total count.

Abbreviations: NPCR, National Program of Cancer Registries; SEER, Surveillance, Epidemiology and End Results program; CI, confidence interval; NOS, not otherwise specified.

Table 5.

Five-Year Total, Annual Average Totala and Average Annual Age-Adjusted Incidence Ratesb for Brain and Central Nervous System Tumors in Females Age 15-39 Years by Major Histology Groupings, Histology, and Age Groupings, American Brain Tumor Association Adolescent and Young Adult Brain Tumor Report: CBTRUS, 2008-2012

Histology 15-39 (Female)
15-19 (Female)
20-24 (Female)
25-29 (Female)
30-34 (Female)
35-39 (Female)
5-year total Annual Average Rate 95% CI Rate 95% CI Rate 95% CI Rate 95% CI Rate 95% CI Rate 95% CI
Tumors of Neuroepithelial Tissue 7,926 1,585 3.09 (3.02-3.16) 2.63 (2.49-2.77) 2.54 (2.40-2.68) 3.22 (3.07-3.38) 3.48 (3.31-3.64) 3.55 (3.38-3.72)
Pilocytic astrocytoma 727 145 0.28 (0.26-0.30) 0.58 (0.52-0.65) 0.29 (0.25-0.34) 0.22 (0.18-0.26) 0.18 (0.15-0.23) 0.12 (0.09-0.16)
Diffuse astrocytoma 1,040 208 0.41 (0.38-0.43) 0.28 (0.23-0.33) 0.29 (0.25-0.34) 0.45 (0.39-0.51) 0.51 (0.45-0.58) 0.50 (0.44-0.56)
Anaplastic astrocytoma 585 117 0.23 (0.21-0.25) 0.09 (0.06-0.12) 0.16 (0.12-0.19) 0.30 (0.26-0.35) 0.26 (0.22-0.31) 0.33 (0.29-0.39)
Unique astrocytoma variants 181 36 0.07 (0.06-0.08) 0.10 (0.07-0.13) 0.12 (0.09-0.15) 0.05 (0.03-0.07) 0.06 (0.04-0.08)
Glioblastoma 935 187 0.38 (0.35-0.40) 0.16 (0.13-0.20) 0.24 (0.20-0.29) 0.33 (0.28-0.38) 0.42 (0.36-0.48) 0.69 (0.62-0.76)
Oligodendroglioma 629 126 0.25 (0.23-0.27) 0.08 (0.06-0.11) 0.16 (0.13-0.20) 0.25 (0.21-0.30) 0.36 (0.31-0.41) 0.39 (0.33-0.44)
Anaplastic oligodendroglioma 172 34 0.07 (0.06-0.08) 0.06 (0.04-0.09) 0.11 (0.08-0.14) 0.12 (0.10-0.16)
Oligoastrocytic tumors 601 120 0.24 (0.22-0.26) 0.07 (0.05-0.09) 0.16 (0.13-0.19) 0.31 (0.27-0.37) 0.32 (0.28-0.38) 0.32 (0.27-0.37)
Ependymal tumors 863 173 0.34 (0.31-0.36) 0.22 (0.19-0.27) 0.25 (0.21-0.29) 0.37 (0.32-0.42) 0.45 (0.39-0.51) 0.39 (0.34-0.45)
Glioma malignant, NOS 667 133 0.26 (0.24-0.28) 0.31 (0.26-0.36) 0.23 (0.19-0.28) 0.27 (0.23-0.32) 0.25 (0.21-0.30) 0.23 (0.19-0.28)
Choroid plexus tumors 96 19 0.04 (0.03-0.05) 0.05 (0.03-0.07) 0.03 (0.02-0.05) 0.05 (0.03-0.07) 0.04 (0.02-0.06)
Other neuroepithelial tumors 23 0.01 (0.01-0.01)
Neuronal and mixed neuronal-glial tumors 875 175 0.33 (0.31-0.36) 0.45 (0.39-0.51) 0.34 (0.30-0.40) 0.34 (0.29-0.40) 0.32 (0.27-0.37) 0.23 (0.19-0.27)
Tumors of the pineal region 160 32 0.06 (0.05-0.07) 0.06 (0.04-0.08) 0.06 (0.04-0.08) 0.07 (0.05-0.10) 0.06 (0.04-0.08) 0.07 (0.05-0.09)
Embryonal tumors 372 74 0.14 (0.13-0.16) 0.17 (0.14-0.21) 0.18 (0.15-0.22) 0.16 (0.13-0.20) 0.12 (0.09-0.15) 0.09 (0.06-0.12)
Tumors of Cranial and Spinal Nerves 2,382 476 0.95 (0.92-0.99) 0.38 (0.33-0.44) 0.53 (0.47-0.60) 0.90 (0.82-0.99) 1.23 (1.14-1.34) 1.62 (1.51-1.74)
Nerve sheath tumors 2,380 476 0.95 (0.92-0.99) 0.38 (0.33-0.44) 0.53 (0.47-0.60) 0.90 (0.82-0.99) 1.23 (1.14-1.34) 1.62 (1.51-1.74)
Other tumors of cranial and spinal nerves
Tumors of Meninges 6,618 1,324 2.74 (2.67-2.80) 0.47 (0.41-0.53) 0.86 (0.79-0.95) 1.88 (1.76-2.00) 3.65 (3.49-3.82) 6.22 (6.01-6.45)
Meningioma 6,011 1,202 2.50 (2.43-2.56) 0.33 (0.28-0.38) 0.67 (0.60-0.74) 1.66 (1.55-1.77) 3.35 (3.19-3.51) 5.91 (5.70-6.12)
Mesenchymal tumors 176 35 0.07 (0.06-0.08) 0.05 (0.04-0.08) 0.05 (0.04-0.08) 0.04 (0.02-0.06) 0.09 (0.07-0.12) 0.10 (0.08-0.14)
Primary melanocytic lesions
Other neoplasms related to the meninges 425 85 0.17 (0.15-0.18) 0.08 (0.06-0.11) 0.14 (0.11-0.18) 0.18 (0.15-0.22) 0.21 (0.17-0.26) 0.21 (0.17-0.25)
Lymphomas and Hematopoietic Neoplasms 227 45 0.09 (0.08-0.11) 0.03 (0.02-0.05) 0.05 (0.04-0.08) 0.06 (0.04-0.08) 0.13 (0.10-0.16) 0.18 (0.14-0.22)
Lymphoma 208 42 0.08 (0.07-0.10) 0.05 (0.03-0.07) 0.05 (0.03-0.07) 0.12 (0.09-0.16) 0.17 (0.14-0.21)
Other hematopoietic neoplasms 19 0.01 (0.00-0.01)
Germ Cell Tumors and Cysts 132 26 0.05 (0.04-0.06) 0.07 (0.05-0.10) 0.06 (0.04-0.08) 0.05 (0.03-0.07) 0.04 (0.02-0.06) 0.04 (0.02-0.06)
Germ cell tumors, cysts and heterotopias 132 26 0.05 (0.04-0.06) 0.07 (0.05-0.10) 0.06 (0.04-0.08) 0.05 (0.03-0.07) 0.04 (0.02-0.06) 0.04 (0.02-0.06)
Tumors of Sellar Region 11,838 2,368 4.62 (4.53-4.70) 2.75 (2.61-2.89) 3.88 (3.71-4.05) 5.01 (4.82-5.21) 5.62 (5.42-5.84) 5.77 (5.56-5.98)
Tumors of the pituitary 11,494 2,299 4.48 (4.40-4.57) 2.60 (2.46-2.74) 3.76 (3.60-3.93) 4.89 (4.70-5.08) 5.50 (5.29-5.71) 5.61 (5.40-5.82)
Craniopharyngioma 344 69 0.13 (0.12-0.15) 0.15 (0.12-0.19) 0.11 (0.09-0.15) 0.12 (0.09-0.15) 0.13 (0.10-0.16) 0.16 (0.13-0.20)
Unclassified Tumors 1,792 358 0.70 (0.67-0.74) 0.50 (0.44-0.56) 0.50 (0.44-0.56) 0.76 (0.68-0.83) 0.78 (0.71-0.86) 0.95 (0.87-1.04)
Hemangioma 894 179 0.35 (0.33-0.38) 0.21 (0.17-0.25) 0.25 (0.21-0.30) 0.37 (0.32-0.43) 0.40 (0.34-0.46) 0.51 (0.45-0.58)
Neoplasm, unspecified 891 178 0.35 (0.32-0.37) 0.28 (0.24-0.33) 0.24 (0.20-0.29) 0.38 (0.33-0.44) 0.38 (0.33-0.44) 0.44 (0.39-0.51)
All other
TOTALc 30,915 6,183 12.24 (12.10-12.38) 6.83 (6.61-7.06) 8.42 (8.18-8.67) 11.87 (11.57-12.17) 14.93 (14.6-15.28) 18.33 (17.96-18.71)

aAnnual average cases are calculated by dividing the five-year total by five.

bRates are per 100,000 and are age-adjusted to the 2000 US standard population.

cRefers to all brain tumors including histologies not presented in this table.

– Counts are not presented when fewer than 16 cases were reported for the specific histology category. Suppressed cases are included in the total count.

Abbreviations: NPCR, National Program of Cancer Registries; SEER, Surveillance, Epidemiology and End Results program; CI, confidence interval; NOS, not otherwise specified.

Incidence rate ratios (IRR) by gender (male:female) for selected histologies in adolescents and young adults (age 15-39 years) are shown in Figure 21.

  • There are significant differences in incidence of multiple tumor types by gender in AYA.

  • Males are diagnosed with germ cells tumors nearly four times as often as females (IRR: males:females = 3.8), and with lymphoma nearly two times as often (IRR: males:females = 1.7).

  • Females are diagnosed with meningioma and tumors of the pituitary approximately 2.5 times as often as males (IRR: males:females = 0.4).

Fig. 21.

Fig. 21.

Incidence Rate Ratios by Gender (Males:Females) in Adolescents and Young Adults Age 15-39 Years for Selected CBTRUS Histology Groupings and Histologies, (CBTRUS 2008-2012).

Incidence by Race and Ethnicity

Average annual incidence rates by race for adolescents and young adults (age 15-39 years) are shown in Table 6.

  • Overall, AYA incidence is highest in Whites (10.68 per 100,000 population), followed by Blacks (9.42 per 100,000 population), and API (9.37 per 100,000 population). AIAN have the lowest incidence of all racial groups, with average annual age-adjusted incidence of 6.99 per 100,000.

  • Incidence of tumors of neuroepithelial tissue is higher in whites than in any other racial group in AYA.

  • Incidence of tumors of the meninges, tumors of the sellar region, and lymphomas and hematopoietic neoplasms are higher in Blacks in the AYA population.

  • Incidence of tumors of the cranial and spinal nerves and germ cell tumors in AYA have the highest incidence in API.

Table 6.

Five-Year Total, Annual Average Totala and Average Annual Age-Adjusted Incidence Ratesb for Brain and Central Nervous System Tumors in Adolescents and Young Adults Age 15-39 Years by Major Histology Groupings, Histology, and Racec, American Brain Tumor Association Adolescent and Young Adult Brain Tumor Report: CBTRUS, 2008-2012

Histology White
Black
AIAN
API
5-year total Annual average Rate 95% CI 5-year total Annual average Rate 95% CI 5-year total Annual average Rate 95% CI 5-year total Annual average Rate 95% CI
Tumors of Neuroepithelial Tissue 14,928 2,986 3.75 (3.69-3.81) 1,635 327 2.11 (2.00-2.21) 161 32 1.93 (1.64-2.26) 878 176 2.58 (2.41-2.76)
Pilocytic astrocytoma 1,257 251 0.31 (0.29-0.32) 172 34 0.20 (0.17-0.24) 65 0.20 (0.16-0.26)
Diffuse astrocytoma 2,050 410 0.52 (0.49-0.54) 217 43 0.29 (0.25-0.33) 27 0.32 (0.21-0.47) 96 19 0.28 (0.22-0.34)
Anaplastic astrocytoma 1,208 242 0.31 (0.29-0.32) 94 19 0.13 (0.10-0.15) 64 0.19 (0.14-0.24)
Unique astrocytoma variants 288 58 0.07 (0.06-0.08) 58 0.07 (0.05-0.09) 23 0.07 (0.04-0.10)
Glioblastoma 1,948 390 0.51 (0.48-0.53) 260 52 0.36 (0.31-0.40) 149 30 0.43 (0.37-0.51)
Oligodendroglioma 1,330 266 0.34 (0.32-0.36) 70 0.10 (0.07-0.12) 66 0.19 (0.15-0.24)
Anaplastic oligodendroglioma 378 76 0.10 (0.09-0.11) 16 0.02 (0.01-0.04) 18 0.05 (0.03-0.08)
Oligoastrocytic tumors 1,165 233 0.29 (0.28-0.31) 77 0.11 (0.08-0.13) 61 0.17 (0.13-0.22)
Ependymal tumors 1,585 317 0.40 (0.38-0.42) 157 31 0.21 (0.18-0.24) 17 0.20 (0.12-0.33) 115 23 0.33 (0.27-0.40)
Glioma malignant, NOS 1,124 225 0.28 (0.26-0.30) 163 33 0.20 (0.17-0.24) 68 0.20 (0.16-0.26)
Choroid plexus tumors 153 31 0.04 (0.03-0.04) 18 0.02 (0.01-0.04)
Other neuroepithelial tumors 26 0.01 (0.00-0.01)
Neuronal and mixed neuronal-glial tumors 1,447 289 0.36 (0.34-0.37) 190 38 0.23 (0.20-0.27) 102 20 0.31 (0.25-0.38)
Tumors of the pineal region 205 41 0.05 (0.04-0.06) 41 0.05 (0.04-0.07)
Embryonal tumors 764 153 0.19 (0.17-0.20) 100 20 0.12 (0.10-0.15) 35 0.11 (0.07-0.15)
Tumors of Cranial and Spinal Nerves 3,752 750 0.97 (0.94-1.00) 344 69 0.47 (0.42-0.53) 50 0.67 (0.50-0.89) 345 69 1.01 (0.90-1.12)
Nerve sheath tumors 3,749 750 0.97 (0.94-1.00) 344 69 0.47 (0.42-0.53) 50 0.67 (0.50-0.89) 344 69 1.01 (0.90-1.12)
Other tumors of cranial and spinal nerves 0.00 (0.00-0.00)
Tumors of Meninges 7,467 1,493 1.98 (1.93-2.02) 1,540 308 2.20 (2.09-2.32) 89 18 1.19 (0.95-1.47) 538 108 1.59 (1.46-1.73)
Meningioma 6,469 1,294 1.73 (1.68-1.77) 1,385 277 1.99 (1.89-2.10) 76 1.03 (0.81-1.29) 447 89 1.33 (1.20-1.45)
Mesenchymal tumors 262 52 0.07 (0.06-0.08) 41 0.06 (0.04-0.08) 26 0.08 (0.05-0.11)
Primary melanocytic lesions 19 0.01 (0.00-0.01)
Other neoplasms related to the meninges 717 143 0.18 (0.17-0.20) 113 23 0.15 (0.12-0.18) 64 0.19 (0.14-0.24)
Lymphomas and Hematopoietic Neoplasms 395 79 0.10 (0.09-0.11) 176 35 0.25 (0.21-0.29) 32 0.09 (0.06-0.13)
Lymphoma 357 71 0.09 (0.08-0.10) 174 35 0.25 (0.21-0.29) 31 0.09 (0.06-0.13)
Other hematopoietic neoplasms 38 0.01 (0.01-0.01)
Germ Cell Tumors and Cysts 508 102 0.12 (0.11-0.13) 82 16 0.10 (0.08-0.12) 61 0.19 (0.15-0.25)
Germ cell tumors, cysts and heterotopias 508 102 0.12 (0.11-0.13) 82 16 0.10 (0.08-0.12) 61 0.19 (0.15-0.25)
Tumors of Sellar Region 12,266 2,453 3.10 (3.04-3.15) 2,785 557 3.79 (3.64-3.93) 210 42 2.57 (2.23-2.95) 1,148 230 3.33 (3.14-3.53)
Tumors of the pituitary 11,777 2,355 2.97 (2.92-3.03) 2,662 532 3.62 (3.48-3.76) 207 41 2.53 (2.19-2.91) 1,099 220 3.19 (3.00-3.38)
Craniopharyngioma 489 98 0.12 (0.11-0.13) 123 25 0.16 (0.14-0.20) 49 0.15 (0.11-0.19)
Unclassified Tumors 2,589 518 0.65 (0.63-0.68) 374 75 0.50 (0.45-0.56) 36 0.45 (0.31-0.62) 195 39 0.57 (0.49-0.65)
Hemangioma 1,297 259 0.33 (0.31-0.35) 127 25 0.17 (0.14-0.20) 18 0.23 (0.14-0.37) 88 18 0.25 (0.20-0.31)
Neoplasm, unspecified 1,282 256 0.32 (0.30-0.34) 247 49 0.33 (0.29-0.38) 18 0.21 (0.13-0.34) 105 21 0.30 (0.25-0.37)
All other
TOTALd 41,905 8,381 10.68 (10.58-10.78) 6,936 1,387 9.42 (9.19-9.64) 560 112 6.99 (6.42-7.61) 3,197 639 9.37 (9.04-9.70)

aAnnual average cases are calculated by dividing the five-year total by five.

bRates are per 100,000 and are age-adjusted to the 2000 US standard population.

cIndividuals with unknown race were excluded (N = 1,967).

cRefers to all brain tumors including histologies not presented in this table.

– Counts and rates are not presented when fewer than 16 cases were reported for the specific histology category. The suppressed cases are included in the counts and rates for totals.

Abbreviations: NPCR, National Program of Cancer Registries; SEER, Surveillance, Epidemiology and End Results program; CI, confidence interval; NOS, not otherwise specified; AIAN, American Indian/Alaskan Native; API, Asian/Pacific Islander.

Incidence rate ratios (IRR) by race (White:Black) in adolescents and young adults (age 15-39 years) for selected histologies are shown in Figure 22.

  • There are statistically significant differences in incidence by race in AYA for several histologies.

  • Gliomas occur significantly more often in Whites than Blacks in adolescents and young adults.

  • Oligodendroglioma are diagnosed approximately four times as often in Whites than in Blacks (IRR: Whites:Blacks = 3.7) in adolescents and young adults.

  • Non-malignant meningiomas (IRR: Whites:Blacks = 0.9) and tumors of the pituitary (IRR: Whites:Blacks = 0.8) are slightly more common in Blacks, while lymphoma occurs approximately 2.5 times as frequently in Blacks (IRR: Whites:Blacks = 0.4).

Fig. 22.

Fig. 22.

Incidence Rate Ratios by Race (Whites:Blacks) in Adolescents and Young Adults Age 15-39 Years for Selected CBTRUS Histology Groupings and Histologies, (CBTRUS 2008-2012).

Fig. 23.

Fig. 23.

Average Annual Age-Adjusted Mortality Rates of All Malignant Brain and CNS Tumors by Region of the United States (Age 15-39 Years), (NVSS 2008-2012).

Average annual incidence rates by Hispanic ethnicity in adolescents and young adults (age 15-39 years) AYA are shown in Table 7.

  • The overall average annual age-adjusted incidence in non-Hispanics (10.86 per 100,000 population) is higher than that of Hispanics (8.70 per 100,000 population).

  • Incidence of lymphomas and other hematopoietic neoplasms, as well as tumors of the sellar region are slightly more common among Hispanics.

Table 7.

Five-Year Total, Annual Average Totala and Average Annual Age-Adjusted Incidence Ratesb for Brain and Central Nervous System Tumor in Adolescents and Young Adults Age 15-39 Years by Major Histology Groupings, Histology, and Hispanic Ethnicityc, American Brain Tumor Association Adolescent and Young Adult Brain Tumor Report: CBTRUS, 2008-2012

Histology Hispanic
Non-Hispanic
5-year total Annual average Rate 95% CI 5-year total Annual average Rate 95% CI
Tumors of Neuroepithelial Tissue 2,473 495 2.39 (2.30-2.49) 15,301 3,060 3.70 (3.64-3.76)
Pilocytic astrocytoma 199 40 0.18 (0.16-0.21) 1,320 264 0.31 (0.29-0.33)
Diffuse astrocytoma 296 59 0.29 (0.26-0.33) 2,117 423 0.51 (0.49-0.53)
Anaplastic astrocytoma 182 36 0.18 (0.15-0.20) 1,216 243 0.30 (0.28-0.31)
Unique astrocytoma variants 57 0.05 (0.04-0.07) 324 65 0.08 (0.07-0.08)
Glioblastoma 380 76 0.38 (0.35-0.43) 2,013 403 0.50 (0.48-0.53)
Oligodendroglioma 171 34 0.17 (0.15-0.20) 1,316 263 0.32 (0.31-0.34)
Anaplastic oligodendroglioma 60 12 0.06 (0.05-0.08) 360 72 0.09 (0.08-0.10)
Oligoastrocytic tumors 146 29 0.14 (0.12-0.17) 1,187 237 0.29 (0.27-0.31)
Ependymal tumors 286 57 0.28 (0.24-0.31) 1,602 320 0.39 (0.37-0.41)
Glioma malignant, NOS 169 34 0.16 (0.14-0.19) 1,214 243 0.29 (0.27-0.31)
Choroid plexus tumors 34 0.03 (0.02-0.05) 149 30 0.04 (0.03-0.04)
Other neuroepithelial tumors 24 0.01 (0.00-0.01)
Neuronal and mixed neuronal-glial tumors 235 47 0.22 (0.19-0.25) 1,538 308 0.36 (0.35-0.38)
Tumors of the pineal region 34 0.03 (0.02-0.04) 224 45 0.05 (0.05-0.06)
Embryonal tumors 218 44 0.20 (0.18-0.23) 697 139 0.16 (0.15-0.18)
Tumors of Cranial and Spinal Nerves 602 120 0.60 (0.56-0.66) 3,947 789 0.98 (0.95-1.02)
Nerve sheath tumors 601 120 0.60 (0.56-0.65) 3,944 789 0.98 (0.95-1.01)
Other tumors of cranial and spinal nerves 0.00 (0.00-0.00)
Tumors of Meninges 1,510 302 1.55 (1.48-1.63) 8,197 1,639 2.09 (2.05-2.14)
Meningioma 1,302 260 1.35 (1.28-1.43) 7,138 1,428 1.83 (1.79-1.88)
Mesenchymal tumors 43 0.04 (0.03-0.06) 293 59 0.07 (0.06-0.08)
Primary melanocytic lesions 0.00 (0.00-0.01) 19 0.00 (0.00-0.01)
Other neoplasms related to the meninges 162 32 0.16 (0.13-0.18) 747 149 0.18 (0.17-0.20)
Lymphomas and Hematopoietic Neoplasms 150 30 0.15 (0.13-0.18) 469 94 0.12 (0.11-0.13)
Lymphoma 140 28 0.14 (0.12-0.17) 436 87 0.11 (0.10-0.12)
Other hemopoietic neoplasms 33 0.01 (0.01-0.01)
Germ Cell Tumors and Cysts 120 24 0.11 (0.09-0.13) 536 107 0.12 (0.11-0.14)
Germ cell tumors, cysts and heterotopias 120 24 0.11 (0.09-0.13) 536 107 0.12 (0.11-0.14)
Tumors of Sellar Region 3,418 684 3.32 (3.21-3.43) 13,141 2,628 3.20 (3.15-3.26)
Tumors of the pituitary 3,263 653 3.17 (3.06-3.28) 12,629 2,526 3.08 (3.03-3.13)
Craniopharyngioma 155 31 0.15 (0.12-0.17) 512 102 0.12 (0.11-0.14)
Unclassified Tumors 584 117 0.57 (0.52-0.62) 2,633 527 0.64 (0.62-0.67)
Hemangioma 234 47 0.23 (0.20-0.26) 1,304 261 0.32 (0.30-0.34)
Neoplasm, unspecified 347 69 0.34 (0.30-0.38) 1,320 264 0.32 (0.30-0.34)
All other
TOTALd 8,857 1,771 8.70 (8.52-8.89) 44,224 8,845 10.86 (10.76-10.96)

aAnnual average cases are calculated by dividing the five-year total by five.

bRates are per 100,000 and are age-adjusted to the 2000 US standard population.

cHispanic ethnicity is not mutually exclusive of race; Classified using the North American Association of Central Cancer Registries Hispanic Identification Algorithm, version 2 (NHIA v2).

dRefers to all brain tumors including histologies not presented in this table.

– Counts and rates are not presented when fewer than 16 cases were reported for the specific histology category. The suppressed cases are included in the counts and rates for totals.

Abbreviations: NPCR, National Program of Cancer Registries; SEER, Surveillance, Epidemiology and End Results program; CI, confidence interval; NOS, not otherwise specified.

Incidence by Histologic Group and Behavior

Average annual age-adjusted incidence rates by histologic type and behavior in adolescents and young adults (age 15-39 years) are shown in Table 8. Incidence of non-malignant tumors (7.21 per 100,000 population) is higher than malignant tumors (3.26 per 100,000 population) in ages 15-39 years.

Table 8.

Distribution and Five-Year Total, Annual Average Totala and Average Annual Age-Adjusted Incidence Ratesb of Brain and Central Nervous System Tumors in Adolescents and Young Adults Age 15-39 Years by Major Histology Groupings, Histology, and Behavior, American Brain Tumor Association Adolescent and Young Adult Brain Tumor Report, CBTRUS, 2008-2012

Histology Total
Malignant
Non-Malignant
5-year total Annual average % of All Tumors Rate (95% CI) 5-year total Annual average Rate (95% CI) 5-year total Annual average Rate (95% CI)
Tumors of Neuroepithelial Tissue 17,776 3,555 33.5% 3.44 (3.39-3.49) 14,894 2,979 2.90 (2.85-2.95) 2,307 461 0.55 (0.53-0.57)
Pilocytic astrocytoma 1,519 304 2.9% 0.28 (0.27-0.30) 1,519 304 0.28 (0.27-0.30)
Diffuse astrocytoma 2,413 483 4.5% 0.47 (0.45-0.49) 2,413 483 0.47 (0.45-0.49)
Anaplastic astrocytoma 1,398 280 2.6% 0.27 (0.26-0.29) 1,398 280 0.27 (0.26-0.29)
Unique astrocytoma variants 381 76 0.7% 0.07 (0.06-0.08) 251 50 0.05 (0.04-0.05) 107 21 0.02 (0.02-0.03)
Glioblastoma 2,393 479 4.5% 0.48 (0.46-0.50) 2,393 479 0.48 (0.46-0.50)
Oligodendroglioma 1,488 298 2.8% 0.29 (0.28-0.31) 1,488 298 0.29 (0.28-0.31)
Anaplastic oligodendroglioma 420 84 0.8% 0.08 (0.08-0.09) 420 84 0.08 (0.08-0.09)
Oligoastrocytic tumors 1,333 267 2.5% 0.26 (0.25-0.28) 1,333 267 0.26 (0.25-0.28)
Ependymal tumors 1,888 378 3.6% 0.37 (0.35-0.38) 1,079 216 0.21 (0.20-0.22) 641 128 0.16 (0.14-0.17)
Glioma malignant, NOS 1,384 277 2.6% 0.26 (0.25-0.28) 1,384 277 0.27 (0.25-0.28)
Choroid plexus tumors 183 37 0.3% 0.03 (0.03-0.04) 136 27 0.03 (0.03-0.04)
Other neuroepithelial tumors 30 0.1% 0.01 (0.00-0.01) 20 0.00 (0.00-0.01)
Neuronal and mixed neuronal-glial tumors 1,773 355 3.3% 0.33 (0.32-0.35) 182 36 0.04 (0.03-0.04) 1,282 256 0.30 (0.29-0.32)
Tumors of the pineal region 258 52 0.5% 0.05 (0.04-0.06) 121 24 0.02 (0.02-0.03) 109 22 0.03 (0.02-0.03)
Embryonal tumors 915 183 1.7% 0.17 (0.16-0.18) 881 176 0.17 (0.15-0.18) 24 0.01 (0.00-0.01)
Tumors of Cranial and Spinal Nerves 4,549 910 8.6% 0.91 (0.88-0.94) 53 -- 0.01 (0.01-0.01) 3,592 718 0.90 (0.87-0.93)
Nerve sheath tumors 4,545 909 8.6% 0.91 (0.88-0.93) 53 0.01 (0.01-0.01) 3,589 718 0.90 (0.87-0.93)
Other tumors of cranial and spinal nerves
Tumors of Meninges 9,707 1,941 18.3% 1.98 (1.95-2.02) 304 61 0.06 (0.05-0.07) 7,558 1,512 1.94 (1.89-1.98)
Meningioma 8,440 1,688 15.9% 1.74 (1.70-1.77) 124 25 0.03 (0.02-0.03) 6,704 1,341 1.73 (1.69-1.77)
Mesenchymal tumors 336 67 0.6% 0.07 (0.06-0.07) 99 20 0.02 (0.02-0.02) 187 37 0.05 (0.04-0.05)
Primary melanocytic lesions 22 0.0% 0.00 (0.00-0.01)
Other neoplasms related to the meninges 909 182 1.7% 0.18 (0.17-0.19) 68 14 0.01 (0.01-0.02) 659 132 0.16 (0.15-0.17)
Lymphomas and Hematopoietic Neoplasms 619 124 1.2% 0.12 (0.11-0.13) 611 122 0.12 (0.11-0.13) -- -- -- --
Lymphoma 576 115 1.1% 0.12 (0.11-0.13) 576 115 0.12 (0.11-0.13)
Other hematopoietic neoplasms 43 0.1% 0.01 (0.01-0.01) 35 0.01 (0.00-0.01)
Germ Cell Tumors and Cysts 656 131 1.2% 0.12 (0.11-0.13) 517 103 0.10 (0.09-0.10) 115 23 0.03 (0.02-0.03)
Germ cell tumors, cysts and heterotopias 656 131 1.2% 0.12 (0.11-0.13) 517 103 0.10 (0.09-0.10) 115 23 0.03 (0.02-0.03)
Tumors of Sellar Region 16,559 3,312 31.2% 3.23 (3.18-3.28) 19 -- 0.00 (0.00-0.01) 13,234 2,647 3.24 (3.18-3.29)
Tumors of the pituitary 15,892 3,178 29.9% 3.10 (3.05-3.15) 18 0.00 (0.00-0.01) 12,689 2,538 3.10 (3.05-3.16)
Craniopharyngioma 667 133 1.3% 0.13 (0.12-0.14) 545 109 0.13 (0.12-0.14)
Unclassified Tumors 3,217 643 6.1% 0.63 (0.60-0.65) 344 69 0.07 (0.06-0.08) 2,282 456 0.56 (0.53-0.58)
Hemangioma 1,538 308 2.9% 0.30 (0.29-0.32) 1,188 238 0.29 (0.27-0.31)
Neoplasm, unspecified 1,667 333 3.1% 0.32 (0.31-0.34) 329 66 0.06 (0.06-0.07) 1,089 218 0.26 (0.25-0.28)
All other
TOTALc 53,083 10,617 100.0% 10.43 (10.34-10.52) 16,742 3,348 3.26 (3.21-3.31) 29,095 5,819 7.21 (7.13-7.29)

aAnnual average cases are calculated by dividing the five-year total by five.

bRates are per 100,000 and are age-adjusted to the 2000 US standard population.

cRefers to all brain tumors including histologies not presented in this table.

– Counts are not presented when fewer than 16 cases were reported for the specific histology category. The suppressed cases are included in the counts for totals.

Abbreviations: CBTRUS, Central Brain Tumor Registry of the United States; NPCR, National Program of Cancer Registries; SEER, Surveillance, Epidemiology and End Results program; CI, confidence interval; NOS, not otherwise specified.

Number of Estimated New Cases for 2015 and 2016

Estimated number of new brain and CNS cases in adolescents and young adults (age 15-39 years for 2015 and 2016 by histologic type and behavior are shown in Table 9).

  • It is estimated that there will be 2,200 cases of meningioma and 4,730 cases of tumors of the pituitary diagnosed in 2015 in AYA. Estimated cases for 2016 are 2,290 and 5,050, respectively.

  • An estimated 3,870 tumors of neuroepithelial tissue will be diagnosed in 2015, and 3,930 in 2016 in AYA.

Table 9.

Estimated Number of Casesa,b of Brain and Central Nervous System Tumors in Adolescents and Young Adults Age 15-39 Years Overall and by Behavior by Major Histology Groupings and Histology, 2015, 2016, American Brain Tumor Association Adolescent and Young Adult Brain Tumor Report

Histology 2015 Estimated New Cases
2016 Estimated New Cases
All Malignant Non-Malignant All Malignant Non-Malignant
Tumors of Neuroepithelial Tissue 3,870 3,150 730 3,930 3,180 760
Pilocytic astrocytoma 290 290 290 290
Diffuse astrocytoma 500 500 500 500
Anaplastic astrocytoma 260 260 260 260
Unique astrocytoma variants 110 70 110 70
Glioblastoma 450 450 450 450
Oligodendroglioma 260 260 260 260
Anaplastic oligodendroglioma 70 70 70 70
Oligoastrocytic tumors 360 360 380 380
Ependymal tumors 450 270 170 460 280 170
Glioma malignant, NOS 360 360 380 380
Choroid plexus tumors
Other neuroepithelial tumors
Neuronal and mixed neuronal-glial tumors 430 420 450 440
Tumors of the pineal region 90 50 90 60
Embryonal tumors 200 190 200 190
Tumors of Cranial and Spinal Nerves 960 950 970 960
Nerve sheath tumors 960 950 960 960
Other tumors of cranial and spinal nerves
Tumors of Meninges 2,490 60 2,430 2,600 60 2,540
Meningioma 2,200 2,170 2,290 2,270
Mesenchymal tumors 90 70 90 70
Primary melanocytic lesions
Other neoplasms related to the meninges 200 190 200 190
Lymphomas and Hematopoietic Neoplasms 110 100 110 100
Lymphoma 90 90 80 80
Other hematopoietic neoplasms
Germ Cell Tumors and Cysts 120 110 -- 120 110 --
Germ cell tumors, cysts and heterotopias 140 120 140 130
Tumors of Sellar Region 4,860 4,850 5,180 5,180
Tumors of the pituitary 4,730 4,720 5,050 5,050
Craniopharyngioma 130 130 130 130
Unclassified Tumors 1,150 1,100 1,300 1,260
Hemangioma 790 790 940 940
Neoplasm, unspecified 350 310 360 320
All other
TOTAL‡ 13,750 3,510 10,240 13,770 3,530 10,240

aSource: Estimation based on CBTRUS 2000-2010 data for malignant tumors, and CBTRUS 2006-2010 data for non-malignant tumors.

bRounded to the nearest 10. Numbers may not add up due to rounding.

–Estimated number is less than 50 and may affect totals.

Abbreviations: CBTRUS, Central Brain Tumor Registry of the United States; NPCR, National Program of Cancer Registries; SEER, Surveillance, Epidemiology and End Results program; CI, confidence interval; NOS, not otherwise specified.

Mortality Rates by Age Groups, Sex, Race, Ethnicity and Region of the US

Mortality rates due to primary malignant brain and CNS tumors in adolescents and young adults (age 15-39 years) by age at death, sex, race and ethnicity are shown in Table 10.

  • Overall, average annual age-adjusted mortality for AYA is 1.09 per 100,000 population. It is 0.49 per 100,000 population in those age 15-19 years, and 1.62 per 100,000 population in those age 35-39 years.

  • Mortality is higher in males than females (1.34 per 100,000 population in males, and 0.84 per 100,000 population in females). This gap in mortality rate increases with increasing age.

  • Mortality is highest in Whites as compared to other race groups. There is no substantial racial difference in mortality in those age 15-19 years, but this difference increases with increasing age.

  • Mortality is higher in non-Hispanics as compared to Hispanics (1.18 per 100,000 population in non-Hispanics and 0.70 per 100,000 population in Hispanics).

Table 10.

Five-Year Total, Annual Average Totala of Deaths due to Malignant Brain and CNS Tumors and Average Annual Age-Adjusted Mortalityb Rates in Adolescents and Young Adults Age 15-39 Years by Sex, Race, Ethnicity, and Age Groupings, American Brain Tumor Association Adolescent and Young Adult Brain Tumor Report: NVSS, 2008-2012

Histology 15-39
15-19
20-24
25-29
30-34
35-39
5-year total Annual Average Rate 95% CI Rate 95% CI Rate 95% CI Rate 95% CI Rate 95% CI Rate 95% CI
Sex
Male 1,331 266 1.34 (1.27-1.41) 0.56 (0.50-0.63) 0.65 (0.58-0.72) 0.96 (0.88-1.05) 1.40 (1.29-1.50) 2.03 (1.90-2.16)
Female 840 168 0.84 (0.79-0.90) 0.42 (0.37-0.48) 0.48 (0.42-0.54) 0.58 (0.51-0.64) 0.83 (0.75-0.91) 1.22 (1.13-1.32)
Race
White 1,826 365 1.19 (1.14-1.25) 0.50 (0.45-0.55) 0.61 (0.55-0.66) 0.85 (0.79-0.92) 1.26 (1.18-1.34) 1.81 (1.72-1.91)
Black 228 46 0.75 (0.65-0.85) 0.51 (0.41-0.62) 0.50 (0.40-0.62) 0.52 (0.42-0.65) 0.62 (0.50-0.77) 0.96 (0.80-1.14)
AIAN 16 0.56 (0.32-0.91)
API 101 20 0.76 (0.62-0.92) 0.48 (0.32-0.70) 0.30 (0.18-0.46) 0.41 (0.28-0.59) 0.64 (0.47-0.85) 1.00 (0.79-1.26)
Ethnicity
Hispanic 277 55 0.70 (0.62-0.79) 0.41 (0.33-0.50) 0.40 (0.32-0.49) 0.42 (0.34-0.52) 0.70 (0.59-0.83) 0.96 (0.83-1.11)
Non-Hispanic 1,892 378 1.18 (1.13-1.24) 0.51 (0.47-0.56) 0.60 (0.55-0.66) 0.86 (0.80-0.92) 1.22 (1.14-1.30) 1.78 (1.69-1.87)
TOTALc 2,171 434 1.09 (1.04-1.14) 0.49 (0.45-0.54) 0.56 (0.52-0.61) 0.77 (0.72-0.83) 1.11 (1.05-1.18) 1.62 (1.55-1.70)

aAnnual average cases are calculated by dividing the five-year total by five.

bRates are per 100,000 and are age-adjusted to the 2000 US standard population.

cRefers to all brain tumors including histologies not presented in this table.

– Counts are not presented when fewer than 16 cases were reported for the specific histology category. Suppressed cases are included in the total count.

Abbreviations: NPCR, National Program of Cancer Registries; SEER, Surveillance, Epidemiology and End Results program; CI, confidence interval; NOS, not otherwise specified.

Mortality rates in AYA due to primary malignant brain and CNS tumors in adolescents and young adults (age 15-39 years) by region of the US are shown in Figure 15.

  • Mortality is highest in the West North Central (1.32 per 100,000 population) and East South Central (1.25 per 100,000 population).

  • Mortality is lowest in the New England (0.90 per 100,000 population), Middle Atlantic, and South Atlantic (both 0.99 per 100,000 population) regions. Though mortality and incidence are inherently linked statistics, higher incidence (as in the case of the Middle Atlantic region) does not necessarily lead to higher mortality within the same age group. Age ranges for mortality figures reflect age at death, as compared to incidence rates that reflect age at diagnosis. Time period between diagnosis and death can vary substantially by tumor type, and by individual.

Incidence by Site and Gender

Average annual age-adjusted incidence rates in AYA by site and gender are shown in Table 11.

  • The site with the highest incidence is the pituitary and craniopharyngeal duct (3.30 per 100,000 population) which is more common in females than males followed by the frontal, temporal, parietal, and occipital lobes of the brain (2.08 per 100,000 population) which is more common in males.

  • The frontal, temporal, parietal, and occipital lobes are the site with the highest incidence in males (2.31 per 100,000 population).

  • In females, pituitary and craniopharyngeal duct (4.72 per 100,000 population) and the cerebral and spinal meninges (2.51 per 100,000 population) are the sites with the highest incidence.

Table 11.

Five-Year Total, Annual Average Totala and Average Annual Age-Adjusted Incidence Ratesb in Adolescents and Young Adults Age 15-39 Years by Sitec and Gender, American Brain Tumor Association Adolescent and Young Adult Brain Tumor Report: CBTRUS, 2008-2012

ICD-O-3 Code Site Total
Male
Female
5-year total Annual average Rate 95% CI 5-year total Annual average Rate 95% CI 5-year total Annual average Rate 95% CI
C71.0 Cerebrum 1,126 225 0.22 (0.20-0.23) 626 125 0.24 (0.22-0.26) 500 100 0.20 (0.18-0.21)
C71.1-C71.4 Frontal, temporal, parietal, and occipital lobes of the brain 10,646 2,129 2.08 (2.04-2.12) 5,945 1,189 2.31 (2.25-2.37) 4,701 940 1.85 (1.80-1.91)
 C71.1 - Frontal lobe 5,624 1,125 1.10 (1.08-1.13) 3,128 626 1.22 (1.18-1.26) 2,496 499 0.99 (0.95-1.03)
 C71.2 - Temporal lobe 3,094 619 0.60 (0.58-0.62) 1,739 348 0.67 (0.64-0.71) 1,355 271 0.53 (0.50-0.56)
 C71.3 - Parietal lobe 1,535 307 0.30 (0.29-0.32) 856 171 0.33 (0.31-0.36) 679 136 0.27 (0.25-0.29)
 C71.4 - Occipital lobe 393 79 0.08 (0.07-0.08) 222 44 0.08 (0.07-0.10) 171 34 0.07 (0.06-0.08)
C71.5 Ventricle 1,173 235 0.22 (0.21-0.24) 596 119 0.22 (0.21-0.24) 577 115 0.22 (0.21-0.24)
C71.6 Cerebellum 2,352 470 0.45 (0.43-0.47) 1,270 254 0.48 (0.46-0.51) 1,082 216 0.42 (0.39-0.45)
C71.7 Brain stem 1,359 272 0.26 (0.25-0.27) 702 140 0.27 (0.25-0.29) 657 131 0.25 (0.24-0.27)
C71.8-C71.9 Other brain 3,762 752 0.73 (0.71-0.76) 2,032 406 0.79 (0.75-0.82) 1,730 346 0.68 (0.65-0.71)
C72.0-C72.1 Spinal cord and cauda equina 2,710 542 0.53 (0.51-0.55) 1,488 298 0.58 (0.55-0.61) 1,222 244 0.48 (0.45-0.51)
C72.2-C72.5 Cranial nerves 3,419 684 0.69 (0.66-0.71) 1,567 313 0.63 (0.6-0.66) 1,852 370 0.75 (0.71-0.78)
C72.8-C72.9 Other nervous system 375 75 0.07 (0.07-0.08) 174 35 0.07 (0.06-0.08) 201 40 0.08 (0.07-0.09)
C70.0-C70.9 Meninges (cerebral & spinal) 8,527 1,705 1.76 (1.72-1.80) 2,505 501 1.01 (0.97-1.05) 6,022 1,204 2.51 (2.45-2.58)
C75.1-C75.2 Pituitary and craniopharyngeal duct 16,867 3,373 3.30 (3.25-3.35) 4,807 961 1.90 (1.85-1.96) 12,060 2,412 4.72 (4.63-4.80)
C75.3 Pineal 672 134 0.13 (0.12-0.14) 408 82 0.15 (0.14-0.17) 264 53 0.10 (0.09-0.12)
C30.0c Olfactory tumors of the nasal cavity 95 19 0.02 (0.02-0.02) 48 0.02 (0.01-0.03) 47 0.02 (0.01-0.02)
TOTAL 53,083 10,617 10.47 (10.38-10.56) 22,168 4,434 8.67 (8.55-8.78) 30,915 6,183 12.28 (12.15-12.42)

aAnnual average cases are calculated by dividing the five-year total by five.

bRates are per 100,000 and are age adjusted to the 2000 US standard population.

cThe sites referred to in this table are loosely based on the categories and site codes defined in the SEER site/histology validation list.

dICD-O-3 histology codes 9522-9523 only.

Abbreviations: CBTRUS, Central Brain Tumor Registry of the United States; NPCR, National Program of Cancer Registries; SEER, Surveillance, Epidemiology and End Results program; CI, confidence interval.

Relative Survival by Site and Year of Diagnosis

Relative survival rates for malignant tumors by site in AYA are presented in Table 12.

  • Five-year relative survival is highest for tumors in the pituitary and craniopharyngeal duct (87.6%), and the cranial nerves (87.6%).

  • Five-year relative survival is lowest for tumors in the Other nervous system (ICD-O-3 site codes C72.0-C72.9), (41.0%) and the cerebrum (ID-O-3 site code C71.0) (41.3%).

Table 12.

One-, Two-, Five-, and Ten-Year Relative Survival Ratesa for Malignant Brain and Central Nervous System Tumors in Adolescents and Young Adults Age 15-39 Years by Siteb, American Brain Tumor Association Adolescent and Young Adult Brain Tumor Report: SEER 1995-2012c

ICD-O-3 CODE SITEb N 1-Year
2-Year
5-Year
10-Year
% 95% CI % 95% CI % 95% CI % 95% CI
C71.1 Frontal lobe of the brain 3,809 92.2 (91.2-93.0) 84.2 (82.9-85.4) 68.6 (66.9-70.2) 52.2 (50.0-54.3)
C71.2 Temporal lobe of the brain 1,751 92.9 (91.5-94.0) 82.3 (80.4-84.1) 67.5 (64.9-69.9) 52.4 (49.3-55.5)
C71.3 Parietal lobe of the brain 999 87.1 (84.9-89.1) 76.7 (73.9-79.3) 60.1 (56.6-63.3) 46.2 (42.2-50.0)
C71.4 Occipital lobe of the brain 225 84.9 (79.4-89.1) 74.6 (68.1-80.0) 62.1 (54.8-68.5) 57.4 (49.3-64.8)
C71.0 Cerebrum 722 74.1 (70.6-77.2) 58.5 (54.6-62.1) 41.3 (37.3-45.3) 33.9 (29.6-38.3)
C71.5 Ventricle 371 87.7 (83.9-90.8) 83.5 (79.2-87.1) 77.8 (72.8-82.0) 74.8 (69.2-79.5)
C71.6 Cerebellum 1,138 91.0 (89.2-92.6) 87.5 (85.3-89.3) 79.0 (76.2-81.5) 73.3 (70.0-76.2)
C71.7 Brain stem 831 83.1 (80.3-85.5) 70.9 (67.5-74.0) 59.6 (55.9-63.2) 52.1 (47.8-56.2)
C71.8-C71.9 Other brain 2,174 77.0 (75.2-78.8) 66.3 (64.2-68.3) 52.3 (50.0-54.6) 41.3 (38.8-43.8)
C72.0-C72.1 Spinal cord and cauda equina 754 92.1 (89.8-93.8) 86.4 (83.6-88.8) 80.5 (77.2-83.4) 76.9 (72.9-80.4)
C72.2-C72.5 Cranial nerves 103 93.1 (85.9-96.7) 92.1 (84.6-96.0) 87.4 (78.5-92.8) 85.8 (75.6-91.9)
C72.8-C72.9 Other nervous system 133 58.2 (49.2-66.2) 44.7 (35.8-53.2) 41.0 (32.1-49.7) 35.5 (26.2-44.9)
C70.0-C70.9 Meninges (cerebral and spinal) 158 92.3 (86.7-95.6) 88.9 (82.6-93.0) 83.1 (75.6-88.4) 80.5 (72.5-86.3)
C75.1-C75.2 Pituitary and craniopharyngeal duct 81 96.3 (88.7-98.8) 96.3 (88.7-98.8) 87.6 (77.0-93.5) 83.2 (70.2-90.9)
C75.3 Pineal 367 90.1 (86.5-92.8) 85.0 (80.7-88.4) 78.5 (73.5-82.8) 74.4 (68.4-79.5)
C30.0d Olfactory tumors of the nasal cavity 85 95.3 (87.7-98.3) 92.9 (84.6-96.8) 85.7 (75.1-92.0) 70.5 (52.6-82.7)
All Codes All Sites 13,701 87.3 (86.7-87.8) 78.5 (77.7-79.2) 65.4 (64.5-66.3) 54.2 (53.1-55.2)

aThe cohort analysis of survival rates was utilized for calculating the survival estimates presented in this table. Long-term cohort-based survival estimates reflect the survival experience of individuals diagnosed over the time period, and they may not necessarily reflect the long-term survival outlook of newly diagnosed cases.

bThe sites referred to in this table are loosely based on the categories and site codes defined in the SEER Site/Histology Validation List.

cEstimated by CBTRUS using Surveillance, Epidemiology, and End Results (SEER) Program (www.seer.cancer.gov) SEER*Stat Database: Incidence - SEER 18 Regs Research Data + Hurricane Katrina Impacted Louisiana Cases, Nov 2014 Sub (1973-2012 varying) - Linked To County Attributes - Total U.S., 1969-2013 Counties, National Cancer Institute, DCCPS, Surveillance Research Program, Cancer Statistics Branch, released April 2015, based on the November 2014 submission.

dICD-O-3 histology codes 9522-9523 only.

Katrina Impacted Louisiana Cases, Nov 2013 Sub (1973-2011 varying) - Linked To County Attributes - Total U.S., 1969-2012 Counties, National Cancer Institute, DCCPS, Surveillance Research Program, Cancer Statistics Branch, released April 2014, based on the November 2013 submission.

Abbreviations: SEER, Survival, Epidemiology and End Results; CI, confidence interval.

Relative survival rates for malignant tumors by site and 5-year groups in AYA are shown in Table 13. Relative survival rates have improved significantly over time for all sites.

  • Ten-year relative survival for tumors diagnosed supratentorially (frontal, temporal, occipital, or parietal lobes of the brain or the cerebrum) have increased from 25.5% in 1973-1977, to 52.0% in 2003-2007 in adolescents and young adults (age 15-39 years).

  • Ten-year relative survival for tumors diagnosed in the brain stem have increased from 29.9% in 1978-1982 to 48.8% in 2003-2007 in AYA.

Table 13.

One-, Five-, and Ten-Year Relative Survival Ratesa for Malignant Brain and Central Nervous System Tumors in Adolescents and Young Adults Age 15-39 Years by Siteb and Year of Diagnosis, American Brain Tumor Association Adolescent and Young Adult Brain Tumor Report: SEER 1973-2012c

ICD-O-3 Code Siteb Years of Diagnosis N 1-Year
5-Year
10-Year
% 95% CI % 95% CI % 95% CI
C71.0-C71.4 Supratentorial 1973-1977 412 78.3 (73.9-81.9) 37.4 (32.7-42.1) 25.5 (21.3-29.8)
1978-1982 612 83.1 (79.9-85.9) 46.7 (42.6-50.6) 31.9 (28.2-35.7)
1983-1987 801 85.4 (82.7-87.7) 54.1 (50.6-57.5) 38.8 (35.3-42.2)
1988-1992 979 80.2 (77.5-82.5) 51.7 (48.5-54.8) 42.1 (38.9-45.2)
1993-1997 1,292 77.4 (75.0-79.6) 55.8 (53.0-58.5) 43.0 (40.3-45.8)
1998-2002 1,925 88.1 (86.6-89.5) 61.9 (59.7-64.1) 47.7 (45.4-50.0)
2003-2007 2,397 91.0 (89.8-92.1) 65.2 (63.2-67.1) 52.0 (49.2-54.8)
2008-2012 2,429 93.5 (92.3-94.4) 71.2 (67.8-74.3)
C71.5 Ventricle, NOS 1973-1977
1978-1982
1983-1987 53 81.2 (67.8-89.5) 66.5 (52.0-77.6) 64.8 (50.2-76.1)
1988-1992 63 85.7 (74.2-92.3) 76.4 (63.6-85.2) 71.9 (58.7-81.6)
1993-1997 62 79.1 (66.7-87.3) 64.9 (51.5-75.4) 63.3 (50.0-74.0)
1998-2002 89 82.9 (73.2-89.4) 72.6 (61.8-80.8) 71.6 (60.7-80.0)
2003-2007 124 92.0 (85.5-95.6) 80.7 (72.4-86.7)
2008-2012 126 87.8 (80.2-92.6) 75.2 (52.7-88.1)
C71.6 Cerebellum, NOS 1973-1977 90 86.8 (77.8-92.3) 57.0 (46.1-66.6) 50.5 (39.7-60.4)
1978-1982 123 86.3 (78.8-91.3) 67.0 (57.9-74.7) 60.9 (51.5-69.0)
1983-1987 113 89.5 (82.1-93.9) 75.8 (66.6-82.7) 66.5 (56.8-74.6)
1988-1992 153 81.8 (74.7-87.1) 66.4 (58.2-73.4) 60.6 (52.2-67.9)
1993-1997 168 85.2 (78.9-89.8) 71.3 (63.7-77.6) 62.6 (54.7-69.5)
1998-2002 292 90.8 (86.8-93.6) 78.5 (73.2-82.9) 75.2 (69.7-79.9)
2003-2007 373 92.2 (89.0-94.6) 81.7 (77.3-85.4)
2008-2012 375 92.1 (88.6-94.6)
C71.7 Brain stem 1973-1977
1978-1982 62 61.4 (48.1-72.2) 43.9 (31.3-55.7) 29.9 (17.2-43.8)
1983-1987 75 73.4 (61.8-82.0) 60.3 (48.2-70.4) 32.8 (21.4-44.6)
1988-1992 101 70.2 (60.2-78.2) 53.5 (43.2-62.7) 51.2 (39.2-62.0)
1993-1997 120 81.7 (73.5-87.6) 59.7 (50.2-68.0) 45.8 (35.7-55.3)
1998-2002 191 83.2 (77.1-87.9) 57.9 (50.5-64.7) 53.2 (43.6-61.9)
2003-2007 269 82.4 (77.3-86.5) 59.3 (53.1-65.0) 48.8 (41.4-55.9)
2008-2012 291 84.5 (79.5-88.3)
C71.8-C71.9 Other Brain 1973-1977 213 78.0 (71.8-83.0) 49.1 (42.2-55.7) 40.3 (33.6-46.9)
1978-1982 215 78.3 (72.1-83.2) 49.9 (43.0-56.4) 32.0 (25.7-38.4)
1983-1987 251 77.0 (71.2-81.7) 43.1 (36.9-49.2) 31.6 (25.9-37.5)
1988-1992 410 56.8 (51.9-61.5) 35.0 (30.4-39.7) 25.5 (21.3-29.8)
1993-1997 560 53.5 (49.3-57.5) 34.9 (30.9-38.9) 25.7 (22.1-29.4)
1998-2002 604 78.9 (75.4-82.0) 49.8 (45.7-53.8) 39.6 (35.6-43.6)
2003-2007 655 81.6 (78.4-84.4) 59.3 (55.3-63.0)
2008-2012 592 81.4 (77.9-84.5) 54.8 (47.7-61.3)
C70.0-C70.9, C72.0-C72.9 C75.1-C75.3 C30.0d Other Nervous System 1973-1977 97 84.7 (75.8-90.5) 67.4 (57.0-75.8) 59.5 (48.9-68.6)
1978-1982 140 87.9 (81.2-92.4) 66.0 (57.3-73.2) 59.9 (51.1-67.7)
1983-1987 151 87.4 (80.9-91.8) 68.9 (60.6-75.7) 67.9 (59.5-74.9)
1988-1992 192 78.2 (71.6-83.4) 64.3 (57.0-70.7) 59.5 (52.0-66.2)
1993-1997 262 79.5 (74.0-83.9) 68.3 (62.2-73.6) 65.6 (59.3-71.1)
1998-2002 400 87.5 (83.9-90.4) 74.1 (69.5-78.2) 71.0 (66.1-75.3)
2003-2007 503 90.1 (87.1-92.4) 81.3 (77.6-84.6)
2008-2012 534 92.1 (89.3-94.2) 79.9 (73.6-84.8)
All Codes All Sites 1973-1997 887 78.9 (76.1-81.5) 46.3 (43.0-49.6) 36.3 (33.1-39.5)
1978-1982 1,199 81.7 (79.4-83.8) 52.0 (49.1-54.8) 39.1 (36.3-41.9)
1983-1987 1,447 83.7 (81.7-85.5) 56.3 (53.6-58.8) 44.4 (41.8-47.0)
1988-1992 1,902 74.7 (72.7-76.6) 51.5 (49.2-53.7) 43.0 (40.7-45.2)
1993-1997 2,471 73.1 (71.3-74.8) 54.0 (51.9-55.9) 44.0 (42.0-45.9)
1998-2002 3,521 86.3 (85.1-87.4) 62.7 (61.1-64.3) 52.0 (50.3-53.7)
2003-2007 4,355 89.1 (88.1-90.0) 67.9 (66.4-69.3) 57.6 (55.7-59.5)
2008-2012 4,375 90.8 (89.9-91.7) 70.7 (68.3-72.9)

aThe cohort analysis of survival rates was utilized for calculating the survival estimates presented in this table. Long-term cohort-based survival estimates reflect the survival experience of individuals diagnosed over the time period, and they may not necessarily reflect the long-term survival outlook of newly diagnosed cases.

bThe sites referred to in this table are loosely based on the categories and site codes defined in the SEER Site/Histology Validation List.

cEstimated by CBTRUS using Surveillance, Epidemiology, and End Results (SEER) Program (www.seer.cancer.gov) SEER*Stat Database: Incidence – SEER 18 Regs Research Data + Hurricane Katrina Impacted Louisiana Cases, Nov 2014 Sub (1973-2012 varying) – Linked To County Attributes – Total U.S., 1969-2014 Counties, National Cancer Institute, DCCPS, Surveillance Research Program, Cancer Statistics Branch, released April 2014, based on the November 2014 submission.

dICD-O-3 histology codes 9522-9523 only.

– Rates are excluded when calculated based on a population of less than 50, when less than 16 remain alive in the survival period, or when not enough follow up time has passed to calculate survival for the listed period.

Abbreviations: SEER, Survival, Epidemiology and End Results; CI, confidence interval.

Relative Survival by Histologic Group and Year of Diagnosis

Relative survival rates in adolescents and young adults for malignant primary brain and CNS tumors histology are presented in Table 14.

  • Five-year relative survival in AYA is highest for pilocytic astrocytoma (93.1%) and malignant ependymal tumors (89.8%).

  • Five-year relative survival is poorest for glioblastoma (22.5%) and lymphoma (31.5%).

Table 14.

One-, Two-, Three-, Four-, Five-, and Ten-Year Relative Survival Ratesa,b for Selected Malignant Brain and Central Nervous System Tumors in Adolescents and Young Adults Age 15-39 Years by Histology, American Brain Tumor Association Adolescent and Young Adult Brain Tumor Report: SEER, 1995-2012c

Histology N 1-Year
2-Year
3-Year
4-Year
5-Year
10-Year
% 95% CI % 95% CI % 95% CI % 95% CI % 95% CI % 95% CI
Pilocytic astrocytoma 1,148 97.2 (96.0-98.0) 95.8 (94.3-96.8) 94.8 (93.2-96.0) 93.8 (92.1-95.2) 93.1 (91.3-94.6) 90.4 (87.9-92.4)
Diffuse astrocytoma 2,050 93.5 (92.3-94.5) 86.7 (85.0-88.1) 80.6 (78.7-82.4) 74.9 (72.8-76.9) 69.5 (67.2-71.7) 51.7 (48.8-54.5)
Anaplastic astrocytoma 1,107 88.5 (86.4-90.3) 74.4 (71.5-77.0) 64.1 (60.9-67.1) 57.5 (54.2-60.8) 51.3 (47.8-54.7) 37.6 (33.7-41.5)
Glioblastoma 1,901 71.8 (69.6-73.8) 44.8 (42.4-47.1) 32.1 (29.8-34.4) 26.0 (23.9-28.3) 22.5 (20.4-24.7) 13.7 (11.7-15.9)
Oligodendroglioma 1,476 98.4 (97.6-99.0) 96.1 (94.9-97.0) 93.6 (92.1-94.8) 90.8 (89.1-92.3) 87.6 (85.5-89.3) 71.0 (67.8-73.9)
Anaplastic oligodendroglioma 403 93.4 (90.4-95.5) 83.6 (79.3-87.0) 79.5 (74.9-83.3) 73.1 (68.1-77.5) 67.2 (61.8-72.1) 50.0 (43.5-56.2)
Ependymal tumors 842 96.6 (95.1-97.7) 94.0 (92.0-95.5) 92.5 (90.3-94.2) 91.0 (88.5-92.9) 89.8 (87.2-91.9) 86.2 (82.8-88.9)
Oligoastrocytic tumors 928 96.8 (95.4-97.8) 90.9 (88.7-92.7) 84.6 (81.9-87.0) 79.7 (76.6-82.4) 74.4 (71.0-77.5) 57.1 (52.5-61.5)
Glioma malignant, NOS 872 89.2 (86.9-91.1) 81.8 (78.9-84.3) 76.6 (73.3-79.4) 73.1 (69.6-76.2) 69.4 (65.7-72.7) 56.8 (52.2-61.1)
Neuronal and mixed neuronal-glial tumors 132 96.2 (91.0-98.5) 91.4 (84.8-95.2) 86.0 (78.2-91.2) 79.9 (71.0-86.3) 78.9 (69.8-85.5) 66.6 (53.2-77.0)
Embryonal tumors 773 88.6 (86.1-90.7) 79.7 (76.6-82.5) 71.9 (68.3-75.1) 67.3 (63.5-70.7) 64.9 (61.0-68.5) 55.7 (51.3-59.9)
Meningioma 103 98.1 (92.1-99.6) 98.1 (92.1-99.6) 94.0 (86.4-97.4) 91.7 (83.4-96.0) 89.4 (80.4-94.4) 85.6 (75.4-91.8)
Lymphoma 824 42.5 (39.0-45.9) 36.5 (33.2-39.9) 34.0 (30.7-37.3) 32.5 (29.2-35.8) 31.5 (28.2-34.8) 26.0 (22.6-29.6)
TOTAL: All Brain and Other Nervous Systemd 13,701 87.3 (86.7-87.8) 78.5 (77.7-79.2) 72.8 (72.0-73.6) 68.8 (67.9-69.6) 65.4 (64.5-66.3) 54.2 (53.1-55.2)

aThe cohort analysis of survival rates was utilized for calculating the survival estimates presented in this table. Long-term cohort-based survival estimates reflect the survival experience of individuals diagnosed over the time period, and they may not necessarily reflect the long-term survival outlook of newly diagnosed cases.

bRates are an estimate of the percentage of patients alive at one, two, three, four, five, and ten year, respectively.

cEstimated by CBTRUS using Surveillance, Epidemiology, and End Results (SEER) Program (www.seer.cancer.gov) SEER*Stat Database: Incidence - SEER 18 Regs Research Data + Hurricane Katrina Impacted Louisiana Cases, Nov 2014 Sub (1973-2012 varying) - Linked To County Attributes - Total U.S., 1969-2013 Counties, National Cancer Institute, DCCPS, Surveillance Research Program, Cancer Statistics Branch, released April 2015, based on the November 2014 submission.

dIncludes histologies not listed in this table.

Abbreviations: SEER, Survival, Epidemiology and End Results; CI, confidence interval; NOS, not otherwise specified.

Relative survival rates in adolescents and young adults for malignant brain and CNS tumors by histology and 5-year groups are presented in Table 15.

  • Overall, ten-year survival after diagnosis with a malignant brain and CNS tumor has risen from 36.3% in 1973-1977 to 57.6% in 2003-2007 in AYA.

  • For many histologies, relative survival rates in AYA have not seen large improvements over time.

Table 15.

One-, Five-, and Ten-Year Relative Survival Ratesa,b for Selected Malignant Brain and Central Nervous System Tumors in Adolescents and Young Adults Age 15-39 Years by Histology and Year of Diagnosis, American Brain Tumor Association Adolescent and Young Adult Brain Tumor Report: SEER, 1973-2012c

Histology Years of Diagnosis N 1-Year
5-Year
10-Year
% 95% CI % 95% CI % 95% CI
Pilocytic astrocytoma 1973-1977
1978-1982
1983-1987
1988-1992 69 98.7 (89.4-99.8) 93.3 (83.5-97.3) 89.4 (78.5-94.9)
1993-1997 154 96.8 (92.4-98.7) 92.5 (86.8-95.8) 90.5 (84.2-94.4)
1998-2002 275 96.4 (93.4-98.1) 90.9 (86.7-93.8) 87.6 (82.8-91.2)
2003-2007 394 97.5 (95.4-98.7) 93.7 (90.7-95.8)
2008-2012 380 97.7 (95.3-98.9)
Diffuse astrocytoma 1973-1977 288 87.3 (82.8-90.6) 57.0 (51.0-62.5) 44.6 (38.7-50.3)
1978-1982 535 86.5 (83.3-89.1) 53.7 (49.4-57.9) 38.8 (34.6-43.0)
1983-1987 600 89.0 (86.1-91.2) 57.4 (53.3-61.3) 41.7 (37.7-45.7)
1988-1992 475 90.0 (86.9-92.4) 62.8 (58.2-67.0) 49.5 (44.9-54.0)
1993-1997 386 92.1 (88.9-94.4) 67.9 (63.0-72.4) 52.0 (46.8-57.0)
1998-2002 541 92.5 (89.9-94.4) 66.2 (62.0-70.1) 47.6 (43.2-51.8)
2003-2007 658 93.5 (91.3-95.2) 70.1 (66.3-73.5) 53.6 (47.4-59.4)
2008-2012 650 94.6 (92.4-96.2) 74.3 (66.6-80.4)
Anaplastic astrocytoma 1973-1977
1978-1982
1983-1987 103 85.6 (77.1-91.1) 57.7 (47.5-66.6) 42.4 (32.7-51.9)
1988-1992 195 85.2 (79.3-89.5) 52.2 (44.9-59.0) 37.9 (31.0-44.8)
1993-1997 194 81.5 (75.2-86.3) 46.0 (38.7-52.9) 34.2 (27.4-41.0)
1998-2002 278 86.4 (81.7-89.9) 47.4 (41.4-53.3) 33.3 (27.7-39.1)
2003-2007 333 87.3 (83.2-90.5) 51.6 (46.0-56.9)
2008-2012 400 93.5 (90.4-95.7) 60.3 (48.6-70.2)
Glioblastoma 1973-1977 230 60.1 (53.5-66.1) 17.5 (12.9-22.7) 13.3 (9.2-18.0)
1978-1982 172 62.8 (55.1-69.5) 20.3 (14.6-26.7)
1983-1987 194 63.5 (56.3-69.9) 16.7 (11.8-22.3) 11.3 (7.3-16.4)
1988-1992 225 62.1 (55.3-68.1) 13.9 (9.7-18.9) 13.0 (9.0-17.9)
1993-1997 297 56.2 (50.3-61.7) 16.1 (12.1-20.5) 11.2 (7.8-15.2)
1998-2002 505 68.0 (63.7-71.9) 20.7 (17.2-24.4) 12.8 (10.0-16.0)
2003-2007 607 73.9 (70.2-77.2) 24.3 (20.9-27.9)
2008-2012 623 76.5 (72.7-79.8) 23.0 (16.5-30.2)
Oligodendroglioma 1973-1977
1978-1982 59 86.6 (74.8-93.1) 70.1 (56.4-80.2) 58.6 (44.7-70.1)
1983-1987 89 94.5 (87.0-97.7) 81.3 (71.2-88.1) 63.5 (52.3-72.8)
1988-1992 149 97.4 (93.0-99.1) 82.3 (75.0-87.7) 72.7 (64.5-79.3)
1993-1997 305 97.2 (94.5-98.6) 85.7 (81.1-89.3) 65.2 (59.3-70.4)
1998-2002 448 98.3 (96.5-99.2) 84.9 (81.1-88.0) 69.9 (65.2-74.0)
2003-2007 452 99.0 (97.4-99.6) 88.4 (84.9-91.2)
2008-2012 374 98.6 (96.5-99.5)
Anaplastic oligodendroglioma 1973-1977
1978-1982
1983-1987
1988-1992
1993-1997
1998-2002 128 93.9 (88.0-96.9) 65.3 (56.3-72.9) 47.6 (38.6-56.1)
2003-2007 122 91.8 (85.3-95.6) 66.1 (56.8-73.9)
2008-2012 118 95.3 (88.9-98.1) 80.6 (58.9-91.6)
Ependymal tumors 1973-1977
1978-1982 54 89.0 (77.0-95.0) 78.2 (64.5-87.2) 64.0 (49.4-75.4)
1983-1987 59 96.7 (86.9-99.2) 95.3 (84.9-98.6) 89.5 (77.3-95.4)
1988-1992 74 93.3 (84.5-97.2) 90.9 (81.2-95.7) 83.8 (72.4-90.7)
1993-1997 117 94.1 (87.9-97.2) 87.8 (80.1-92.6) 82.9 (74.5-88.7)
1998-2002 192 95.9 (91.9-98.0) 90.0 (84.5-93.6) 85.5 (79.2-90.0)
2003-2007 278 96.5 (93.4-98.1) 90.5 (86.2-93.5)
2008-2012 299 98.2 (95.6-99.3) 85.6 (74.4-92.2)
Oligoastrocytic tumors 1973-1977
1978-1982
1983-1987
1988-1992 78 97.6 (89.9-99.4) 74.8 (63.4-83.1) 60.8 (48.8-70.9)
1993-1997 118 90.8 (83.9-94.8) 70.8 (61.6-78.2) 56.7 (47.1-65.2)
1998-2002 202 97.1 (93.5-98.7) 69.3 (62.3-75.3) 55.1 (47.7-61.8)
2003-2007 339 97.4 (95.0-98.7) 76.9 (71.9-81.2)
2008-2012 319 97.3 (94.4-98.7) 79.0 (68.6-86.3)
Embryonal tumors 1973-1977 52 84.7 (71.6-92.1) 38.7 (25.6-51.7) 31.1 (19.1-43.9)
1978-1982 59 90.0 (78.8-95.4) 56.3 (42.7-67.9) 48.2 (34.8-60.3)
1983-1987 59 91.6 (80.9-96.5) 66.6 (52.9-77.1) 51.6 (38.0-63.6)
1988-1992 103 81.7 (72.7-87.9) 57.6 (47.4-66.5) 48.9 (38.7-58.2)
1993-1997 109 89.1 (81.5-93.7) 62.6 (52.6-71.0) 50.6 (40.7-59.7)
1998-2002 220 88.6 (83.6-92.2) 65.2 (58.3-71.2) 59.6 (52.6-65.9)
2003-2007 244 88.1 (83.3-91.6) 65.7 (59.2-71.4)
2008-2012 243 89.0 (84.0-92.5)
Lymphoma 1973-1977
1978-1982
1983-1987 57 38.7 (26.2-51.0) 29.7 (18.4-41.9) 29.7 (18.4-41.9)
1988-1992 281 12.1 (8.6-16.3) 3.8 (1.9-6.5) 2.7 (1.2-5.2)
1993-1997 458 16.6 (13.4-20.2) 8.4 (6.1-11.2) 6.0 (4.0-8.4)
1998-2002 195 37.4 (30.6-44.2) 27.4 (21.3-33.9) 24.4 (18.5-30.7)
2003-2007 195 59.6 (52.3-66.1) 51.8 (44.4-58.7)
2008-2012 160 66.5 (58.2-73.6)
TOTAL: All Brain and Other Nervous Systemd 1973-1977 887 78.9 (76.1-81.5) 46.3 (43.0-49.6) 36.3 (33.1-39.5)
1978-1982 1,199 81.7 (79.4-83.8) 52.0 (49.1-54.8) 39.1 (36.3-41.9)
1983-1987 1,447 83.7 (81.7-85.5) 56.3 (53.6-58.8) 44.4 (41.8-47.0)
1988-1992 1,902 74.7 (72.7-76.6) 51.5 (49.2-53.7) 43.0 (40.7-45.2)
1993-1997 2,471 73.1 (71.3-74.8) 54.0 (51.9-55.9) 44.0 (42.0-45.9)
1998-2002 3,521 86.3 (85.1-87.4) 62.7 (61.1-64.3) 52.0 (50.3-53.7)
2003-2007 4,355 89.1 (88.1-90.0) 67.9 (66.4-69.3) 57.6 (55.7-59.5)
2008-2012 4,375 90.8 (89.9-91.7) 70.7 (68.3-72.9)

aThe cohort analysis of survival rates was utilized for calculating the survival estimates presented in this table. Long-term cohort-based survival estimates reflect the survival experience of individuals diagnosed over the time period, and they may not necessarily reflect the long-term survival outlook of newly diagnosed cases.

bRates are an estimate of the percentage of patients alive at one, two, three, four, five, and ten year, respectively.

cEstimated by CBTRUS using Surveillance, Epidemiology, and End Results (SEER) Program (www.seer.cancer.gov) SEER*Stat Database: Incidence - SEER 18 Regs Research Data + Hurricane Katrina Impacted Louisiana Cases, Nov 2014 Sub (1973-2012 varying) - Linked To County Attributes - Total U.S., 1969-2013 Counties, National Cancer Institute, DCCPS, Surveillance Research Program, Cancer Statistics Branch, released April 2015, based on the November 2014 submission.

dIncludes histologies not listed in this table.

– Rates are excluded when calculated based on a population of less than 50, when less than 16 remain alive in the survival period, or when not enough follow up time has passed to calculate survival for the listed period.

Abbreviations: SEER, Survival, Epidemiology and End Results; CI, confidence interval; NOS, not otherwise specified.

Relative Survival by Age Group and Histologic Group

Relative survival rates for adolescents and young adults (age 15-39 years) by histology and age group are shown in Table 16.

  • Overall, persons age 15-19 years have the highest survival after diagnosis with a malignant brain tumor. Ten-year relative survival in this group is 73.5%, as compared to 44.1% in ages 35-39 years.

  • A similar trend is seen in most histologies in AYA with the exception of anaplastic astrocytoma and glioblastoma in which there are few differences between age groups.

Table 16.

One-, Two-, Five-, and Ten-Year Relative Survival Ratesa,b for Selected Malignant Brain and Central Nervous System Tumors in Adolescents and Young Adults Age 15-39 Years by Age Groups, American Brain Tumor Association Adolescent and Young Adult Brain Tumor Report: SEER, 1995-2012c

Histology Age Group (years) N 1-Year
2-Year
5-Year
10-Year
% 95% CI % 95% CI % 95% CI % 95% CI
Pilocytic astrocytoma 15-19 475 98.1 (96.2-99.0) 97.6 (95.6-98.7) 95.5 (92.8-97.2) 95.3 (92.4-97.1)
20-24 261 98.1 (95.3-99.2) 96.5 (93.2-98.2) 93.8 (89.5-96.4) 91.0 (85.2-94.6)
25-29 165 97.6 (93.5-99.1) 95.6 (90.8-98.0) 89.7 (83.1-93.8) 83.6 (74.9-89.5)
30-34 138 94.7 (89.1-97.5) 92.3 (85.9-95.8) 90.6 (83.4-94.7) 84.8 (74.8-91.0)
35-39 109 93.5 (86.7-96.9) 90.5 (82.8-94.9) 89.5 (81.2-94.3) 84.5 (72.9-91.5)
Diffuse astrocytoma 15-19 222 96.8 (93.3-98.5) 88.6 (83.3-92.3) 84.0 (77.7-88.6) 79.8 (72.5-85.3)
20-24 342 92.7 (89.3-95.1) 85.0 (80.4-88.5) 69.0 (63.0-74.2) 51.0 (43.8-57.7)
25-29 421 95.6 (93.1-97.3) 92.0 (88.8-94.3) 73.0 (67.8-77.5) 48.6 (42.0-55.0)
30-34 515 93.9 (91.4-95.7) 88.5 (85.3-91.1) 68.0 (63.2-72.3) 49.6 (44.0-55.0)
35-39 550 90.6 (87.8-92.8) 81.1 (77.4-84.2) 63.4 (58.8-67.7) 46.0 (40.4-51.5)
Anaplastic astrocytoma 15-19 88 79.4 (69.0-86.7) 54.6 (30.5-53.3) 42.2 (42.7-65.0) 32.8 (20.2-46.1)
20-24 160 91.5 (85.7-95.0) 75.7 (50.1-67.2) 59.2 (67.8-82.0) 38.3 (28.0-48.5)
25-29 238 92.7 (88.4-95.5) 81.5 (47.6-63.3) 55.9 (75.3-86.3) 45.3 (36.3-53.8)
30-34 292 90.9 (86.8-93.7) 75.2 (42.2-55.7) 49.2 (69.5-80.0) 37.7 (30.5-44.8)
35-39 329 84.4 (79.9-88.0) 73.3 (42.3-54.6) 48.6 (67.9-77.9) 34.3 (27.5-41.1)
Glioblastoma 15-19 136 71.5 (62.8-78.4) 41.7 (6.4-19.5) 12.0 (32.7-50.4) 8.0 (3.0-16.2)
20-24 198 73.2 (66.2-78.9) 50.6 (22.3-36.4) 29.2 (43.0-57.6) 14.8 (8.5-22.8)
25-29 339 74.1 (68.9-78.5) 51.4 (22.1-32.8) 27.3 (45.6-56.9) 18.1 (12.9-24.0)
30-34 455 72.8 (68.3-76.8) 48.1 (18.1-27.3) 22.5 (43.1-53.0) 14.4 (10.3-19.1)
35-39 773 69.9 (66.4-73.0) 39.2 (17.3-23.6) 20.4 (35.6-42.8) 12.2 (9.4-15.3)
Oligodendroglioma 15-19 116 98.3 (93.0-99.6) 94.6 (88.2-97.6) 91.7 (84.1-95.7) 87.8 (78.6-93.2)
20-24 166 97.6 (93.2-99.1) 90.5 (84.1-94.4) 81.0 (72.0-87.4)
25-29 312 98.5 (96.1-99.4) 95.8 (92.7-97.6) 87.5 (82.7-91.0) 65.5 (57.9-72.1)
30-34 389 98.8 (96.8-99.5) 95.7 (92.8-97.4) 85.0 (80.3-88.6) 70.3 (63.7-75.9)
35-39 493 97.7 (95.8-98.7) 96.5 (94.3-97.9) 87.5 (83.9-90.4) 67.7 (62.1-72.6)
Anaplastic oligodendroglioma 15-19
20-24 39 84.5 (68.6-92.7) 62.7 (45.2-76.1) 50.7 (33.4-65.7) 44.6 (25.8-61.8)
25-29 83 96.3 (88.8-98.8) 84.4 (74.0-90.9) 67.6 (55.1-77.4) 46.1 (32.4-58.7)
30-34 105 93.2 (86.1-96.7) 83.7 (74.6-89.7) 62.7 (51.0-72.3) 50.2 (37.4-61.8)
35-39 155 96.1 (91.3-98.3) 91.1 (84.8-94.8) 77.8 (69.1-84.2) 55.4 (44.1-65.3)
Ependymal tumors 15-19 137 96.2 (91.0-98.4) 92.8 (86.5-96.3) 86.9 (78.9-92.1) 77.9 (67.0-85.7)
20-24 138 94.1 (88.4-97.0) 92.5 (86.3-96.0) 87.3 (79.3-92.4) 82.5 (72.1-89.3)
25-29 161 96.3 (91.7-98.3) 92.9 (87.5-96.1) 88.5 (81.8-92.9) 85.6 (77.8-90.8)
30-34 196 97.5 (93.8-99.0) 95.8 (91.6-98.0) 92.0 (86.4-95.4) 88.2 (80.3-93.0)
35-39 210 98.1 (94.7-99.3) 94.8 (90.3-97.3) 91.9 (86.4-95.2) 91.4 (85.5-95.0)
Oligoastrocytic tumors 15-19 54 90.6 (78.8-96.0) 86.7 (73.9-93.5) 84.5 (70.8-92.1) 75.9 (59.5-86.3)
20-24 109 98.1 (92.4-99.6) 90.8 (82.9-95.2) 73.8 (62.9-82.0) 62.4 (48.5-73.6)
25-29 229 96.9 (93.4-98.5) 90.9 (86.0-94.2) 77.3 (70.3-82.8) 61.6 (52.5-69.5)
30-34 296 96.6 (93.6-98.2) 91.6 (87.5-94.4) 73.9 (67.5-79.3) 52.3 (43.5-60.4)
35-39 240 98.0 (94.8-99.2) 90.9 (86.1-94.1) 70.1 (62.9-76.2) 51.4 (42.3-59.8)
Glioma malignant, NOS 15-19 172 90.3 (84.7-94.0) 83.6 (76.8-88.6) 75.1 (67.0-81.4) 73.8 (65.3-80.5)
20-24 151 90.2 (83.9-94.1) 84.6 (77.2-89.7) 73.8 (64.5-81.0) 65.7 (53.5-75.4)
25-29 159 88.8 (82.6-92.9) 83.7 (76.6-88.8) 69.6 (60.6-76.9) 51.7 (39.9-62.2)
30-34 195 87.3 (81.5-91.3) 75.7 (68.7-81.4) 68.3 (60.5-74.8) 48.4 (38.9-57.3)
35-39 195 89.8 (84.4-93.4) 82.6 (76.1-87.5) 62.1 (53.6-69.5) 50.2 (40.5-59.1)
Neuronal and mixed neuronal-glial tumors 15-19
20-24
25-29
30-34
35-39
Embryonal tumors 15-19 205 90.5 (85.5-93.9) 78.5 (71.9-83.7) 62.5 (54.7-69.3) 56.7 (48.2-64.3)
20-24 194 90.0 (84.7-93.5) 81.5 (75.0-86.5) 65.0 (57.1-71.8) 54.7 (45.9-62.6)
25-29 151 88.0 (81.3-92.4) 81.7 (74.0-87.3) 66.1 (56.7-73.9) 59.6 (49.2-68.5)
30-34 124 90.0 (83.0-94.2) 78.3 (69.5-84.8) 71.4 (61.8-79.0) 58.8 (47.4-68.5)
35-39 99 81.2 (71.7-87.7) 77.8 (67.9-85.0) 59.7 (48.1-69.5) 48.1 (35.4-59.7)
Meningioma 15-19
20-24
25-29
30-34
35-39
Lymphoma 15-19
20-24 66 62.7 (49.3-73.4) 51.3 (37.8-63.3) 43.3 (30.1-55.9) 39.6 (25.6-53.3)
25-29 151 44.2 (36.1-52.0) 36.3 (28.6-44.1) 31.6 (24.0-39.4) 30.4 (22.9-38.3)
30-34 247 40.1 (33.9-46.2) 36.2 (30.1-42.2) 31.8 (25.9-37.8) 25.0 (18.9-31.5)
35-39 329 36.1 (30.9-41.3) 30.7 (25.7-35.9) 25.5 (20.7-30.6) 19.3 (14.5-24.6)
TOTAL: All Brain and Other Nervous Systemd 15-19 2,066 92.2 (90.9-93.3) 85.2 (83.5-86.7) 77.4 (75.4-79.4) 73.5 (71.1-75.7)
20-24 2,084 90.7 (89.3-91.9) 83.1 (81.3-84.7) 71.5 (69.3-73.6) 61.3 (58.6-63.9)
25-29 2,641 88.8 (87.5-90.0) 80.9 (79.3-82.4) 66.8 (64.8-68.8) 53.1 (50.5-55.5)
30-34 3,180 86.5 (85.2-87.7) 77.8 (76.2-79.3) 62.9 (61.0-64.7) 50.5 (48.2-52.7)
35-39 3,730 82.3 (81.0-83.5) 71.2 (69.6-72.7) 56.8 (55.0-58.5) 44.1 (42.1-46.1)

aThe cohort analysis of survival rates was utilized for calculating the survival estimates presented in this table. Long-term cohort-based survival estimates reflect the survival experience of individuals diagnosed over the time period, and they may not necessarily reflect the long-term survival outlook of newly diagnosed cases.

bRates are an estimate of the percentage of patients alive at one, two, five, and ten year, respectively. Rates were not presented for categories with 50 or less cases and were suppressed for rates where less than 16 cases were surviving within a category.

cEstimated by CBTRUS using Surveillance, Epidemiology, and End Results (SEER) Program (www.seer.cancer.gov) SEER*Stat Database: Incidence - SEER 18 Regs Research Data + Hurricane Katrina Impacted Louisiana Cases, Nov 2014 Sub (1973-2012 varying) - Linked To County Attributes - Total U.S., 1969-2013 Counties, National Cancer Institute, DCCPS, Surveillance Research Program, Cancer Statistics Branch, released April 2015, based on the November 2014 submission.

dIncludes histologies not listed in this table.

Relative Survival in Glioma by Age Groups, Sex, Race/Ethnicity and Insurance Status

Relative survival by sex, race/ethnicity, and insurance status in adolescents and young adults (age 15-39 years) is shown in Figures 24A–24D.

  • Relative survival rates are highest in younger age groups in AYA and decrease with increasing age. This may be accentuated by the increased incidence of pilocytic astrocytomas in younger age groups, although malignant gliomas show a decrease in survival with increased age at diagnosis as well (Table 16).

  • Females have higher relative survival rates than males in AYA.

  • White non-Hispanics have the highest survival rates in AYA, although there are not notable differences by race/ethnicity.

  • Persons with private insurance have the highest rates of relative survival. This is consistent with analyses done on survival in other cancer types,36 and is likely due a combination of factors that may be associated with insurance status including: geographic access to care, type of health care facility utilized, differences in treatment pattern, and many factors of socioeconomic status.

  • There is little difference between the relative survival rates of persons with no insurance versus persons with Medicaid in AYA. Previous studies have shown that many people enroll in Medicaid after diagnosis with cancer, which may have been delayed due to prior lack of insurance coverage.37,38 This is one potential explanation for the poorer outcomes seen in this group.

Fig. 24.

Fig. 24.

Relative Survival For 1, 2, 3, 4, 5 and 10 Years after Diagnosis with a Glioma in Persons Age 15-39 Years by A) Age Groups, B) Sex, C) Race/Ethnicity, and D) Insurance Status (data available only from 2007-2012), (SEER 1995-2012).

Five-Year Conditional Survival after Diagnosis by Selected Histologic Groups

Relative survival provides data on cancer prognosis that is useful at a population level, but these numbers may not be informative for individual patients. In the case of individuals that have already survived a year, or several years after diagnosis with their brain tumor, conditional survival estimates provide information about the likelihood that they will survive into the next period of time. Five-year conditional survival estimates by age group and selected histologies for adolescents and young adults are presented in Figure 25.

  • Diagnosis at a younger age in AYA generally led to higher survival rates in all histologies.

  • For a person age 15-19 years at the time of diagnosis with an astrocytoma, 76.5% survived five years. For those that have already survived two years, 91.0% will go on to survive five years.

  • For a person age 35-39 years at the time of diagnosis with an astrocytoma, 43.3% survived five years from time of diagnosis. For those that have already survived two years, 68.9% will go on to survive five years.

Fig. 25.

Fig. 25.

Five-Year Conditional Survival by Age Groups and Histology Groupings (Age 15-39 Years), (SEER 1995-2012).

Time Trends in Incidence of Primary Brain and CNS Tumors in Adolescents and Young Adults

Time trends in cancer incidence rates are an important measure of the changing burden of cancer in a population over time. These time trends are provided for adolescents and young adults in Table 17. Collection of data on non-malignant brain and CNS tumors began in 2004, after the passage of the Benign Brain Tumor Act39 in 2002. Previous analyses have suggested that increased incidence in the time period between 2004 and 2006 may be the result of the initiation of this collection rather than a ‘true’ increase in incidence.40

  • Incidence of anaplastic astrocytoma in AYA has significantly increased from 2006-2012 (Annual Percent Change (APC) = 2.7).

  • Incidence of oligodendroglioma (APC = −2.9) and anaplastic oligodendroglioma (APC = −4.1) in AYA has significantly decreased from 2004-2012.

  • Incidence of tumors of the meninges in AYA has significantly increased from 2004-2012 (APC = 2.5), which is largely driven by the increase of meningioma incidence during that time (APC = 2.6).

  • Incidence of lymphomas and hematopoietic neoplasms has significantly decreased from 2004-2012 (APC = −2.8) in AYA.

  • Incidence of tumors of the sellar region in AYA has significantly increased from 2004-2008 (APC = 8.5), which is largely driven by the increase of tumors of the pituitary incidence from 2004-2009 (APC = 7.6).

  • Incidence of unclassified tumors in AYA has significantly increased from 2004-2012 (APC = 5.5), which is largely driven by the increase of hemangioma incidence from 2004-2010 (APC = 18.8).

Table 17.

Incidence Time Trends for Selected Brain and Central Nervous System Tumors in Adolescents and Young Adults Age 15-39 Years by Histology, American Brain Tumor Association Adolescent and Young Adult Brain Tumor Report: CBTRUS, 2008-2012

Histology Malignant
Non-malignant
Trend 1
Trend 2
Trend 3
Trend 1
Trend 2
Years APC 95% CI Years APC 95% CI Years APC 95% CI Years APC 95% CI Years APC 95% CI
Tumors of Neuroepithelial Tissue 1995-2012 0.1 (−0.1,0.3) 2004-2012 2.2 (0.3,4.1)*
Pilocytic astrocytoma 1995-2012 1.1 (0.3,1.8)*
Diffuse astrocytoma 1995-2002 −2.5 (−4.1,-0.9)* 2002-2012 −1.1 (−2.0,-0.2)*
Anaplastic astrocytoma 1995-2000 2.0 (−0.8,4.9) 2000-2006 −3.2 (−6.1,-0.3)* 2006-2012 2.5 (0.3,4.8)*
Unique astrocytoma variants 1995-2012 4.5 (2.1,7.0)*
Glioblastoma 1995-2012 0.6 (0.0,1.2)
Oligodendroglioma 1995-1997 9.2 (−7.5,29) 1997-2012 −3.2 (−4.0,-2.4)*
Anaplastic oligodendroglioma 1995-1998 23.3 (8.3,40.3)* 1998-2012 −4.3 (−5.3,-3.3)*
Oligoastrocytic tumors 1995-2012 4.3 (3.4,5.3)*
Ependymal tumors 1995-2002 −1.5 (−4.8,1.9) 2002-2004 14.8 ** 2004-2012 −1.6 (−3.5,0.3) 2004-2012 1.5 (−2.4,5.6)
Glioma malignant, NOS 1995-2012 3.1 (2.1,4.1)*
Choroid plexus tumors 2004-2012 −3.5 (−7.4,0.6)
Neuronal and mixed neuronal-glial tumors 2004-2012 2.6 (0.8,4.3)*
Embryonal tumors 1995-2012 −0.6 (−1.3,0.0)
Tumors of Cranial and Spinal Nerves 2004-2012 0.3 (−1.5,2.0)
Nerve sheath tumors 2004-2012 0.3 (−1.5,2.0)
Tumors of Meninges 1995-2012 −1.8 (−3.6,0.1) 2004-2006 10.4 (−7.3,31.5) 2006-2012 1.2 (−1.4,3.8)
Meningioma 2004-2012 2.8 (0.8,4.7)*
Mesenchymal tumors 2004-2012 1.2 (−5.3,8.1)
Other neoplasms related to the meninges 2004-2012 1.4 (−0.5,3.4)
Lymphomas and Hematopoietic Neoplasms 1995-1998 −32.7 (−39.6,-25)* 1998-2012 -4.4 (−5.6,-3.1)*
Lymphoma 1995-1998 −31.8 (−40.1,-22.3)* 1998-2012 −5.0 (−6.4,-3.5)*
Germ Cell Tumors and Cysts 1995-2012 0.6 (−0.5,1.8)
Germ cell tumors, cysts and heterotopias 1995-2012 0.6 (−0.5,1.8)
Tumors of Sellar Region 2004-2008 8.6 (5.3,12)* 2008-2012 0.5 (−2.3,3.5)
Tumors of the pituitary 2004-2009 7.6 (4.9,10.5)* 2009-2012 −0.9 (−6.4,4.8)
Craniopharyngioma 2004-2012 −1.6 (−3.6,0.4)
Unclassified Tumors 1995-2012 -3.7 (−4.8,-2.6)* 2004-2012 6.7 (4.4,8.9)*
Hemangioma 2004-2010 18.5 (12.3,25.2)* 2010-2012 2.4 (−20.8,32.2)
Neoplasm, unspecified 1995-2012 −2.9 (−3.9,-2.0)* 2004-2012 1.6 (−0.4,3.7)
TOTALc 1995-2012 -0.6 (−0.8,-0.4)* 2004-2006 11.0 (−4.3,28.9) 2006-2012 1.9 (−0.5,4.3)

*Statistic is significantly statistic at the p < .05 level.

** Confidence interval unable to be calculated.

– Rates are excluded when annual rate is based on a population of less than 16.

Abbreviation: APC, annual percentage change; NPCR, National Program of Cancer Registries; SEER, Survival, Epidemiology and End Results; CI, confidence interval; NOS, not otherwise specified.

Descriptive Summary of Gliomas, Meningioma, and Tumors of the Pituitary in Adolescents and Young Adults.

The data in the American Brain Tumor Association Adolescent and Young Adult Primary Brain and Central Nervous System Tumors Diagnosed in the US in 2008-2012 are synthesized to describe the most common malignant histology groupings in age 15-39 years: gliomas, meningiomas, and tumors of the pituitary.

Descriptive Summary of Gliomas

The distribution of gliomas in adolescents and young adults by site and histology are shown in Figures 1720.

  • Gliomas represent approximately 28% of all tumors and 82% of malignant tumors in persons age 15-39 years.

  • Overall, gliomas make up the largest percentage of brain and CNS tumors in those age 15-19 years (34.5%) and lowest in those age 35-39 years (24.0%).

  • Gliomas make up the largest percentage of malignant brain and CNS tumors in those age 35-39 years (83.9%), and lowest in those age 15-19 years (74.4%).

  • The majority of gliomas in AYA occur in the frontal lobe, temporal lobe, and other brain (see Table 1 for more details on what is included in the category other brain) combined (59.9%).

  • Diffuse astrocytoma (16.1%) and glioblastoma (16.0%) account for the majority of gliomas in age 15-39 years.

  • Relative survival rates decrease with increasing age, male sex, having AIAN race/ethnicity, and not having health insurance among age 15-39 years (Figure 24).

Descriptive Summary of Meningioma

  • Meningioma is the second most frequently reported brain and CNS tumor histology, accounting for 15.9% of tumors overall in adolescents and young adults (age 15-39 years) (Figure 11).

  • Non-malignant meningiomas with ICD-O-3 behavior codes /0 (benign) or /1 (uncertain) account for 79.4% of meningiomas (Table 8) in AYA.

  • Meningioma is most common in the 35-39 year age group, accounting for 25.1% of tumors, and least common in the 15-19 year age group, accounting for 4.9% of tumors (Figure 12).

  • Non-malignant meningioma in AYA is 2.5 times more common in females as compared to males (Figure 21).

  • Non-malignant meningioma is 1.1 times more common in Blacks as compared to Whites in AYA (Figure 22).

  • Ten-year relative survival for malignant meningioma in AYA is 85.6% (Table 14).

Descriptive Summary of Tumors of the Pituitary

  • Tumors of the pituitary are the most frequently reported tumors in adolescents and young adults (age 15-39 years), accounting for 29.9% of tumors overall (Figure 11).

  • Non-malignant tumors of the pituitary with ICD-O-3 behavior codes /0 (benign) or /1 (uncertain) in AYA account for 79.8% of tumors of the pituitary (Table 8).

  • Tumors of the pituitary are most common in the age group 25-29 years, accounting for 32.8% of tumors (Figure 12).

  • Tumors of the pituitary are 2.5 times more common in females as compared to males in AYA (Figure 21).

  • Tumors of the pituitary in AYA are 1.3 times more common in Blacks as compared to Whites (Figure 22).

Risk Factors for Primary Brain and CNS Tumors

Many environmental and behavioral risk factors have been investigated for brain and CNS tumors. The only well-validated factors are increased risk for these tumors (particularly meningiomas) with exposure to ionizing radiation41 (the type of radiation generated by atomic bombs, therapeutic radiation treatment, CT scans, MRI scans, and X-rays) and decreased risk for these tumors (particularly glioma) in persons with history of allergy or other atopic disease 42 (including eczema, psoriasis, and asthma). Several recent review articles have further elaborated on the current state of risk factor research in primary brain and CNS tumors.4345

Strengths and Limitations

CBTRUS is the largest population-based registry focused exclusively on primary brain and CNS tumors in the US and covers 99.9% of the US population (for 2011-2012 only, data were available for 50 out of 51 registries). The American Brain Tumor Association Adolescent and Young Adult Primary Brain and Central Nervous System Tumors Diagnosed in the US in 2008-2012 contains the most up-to-date population-based data on primary AYA brain tumor and CNS tumors available through the surveillance system in the US.

Registration of individual cases is conducted by cancer registrars at the institution where diagnosis occurs and is then transmitted to the central cancer registry, which further transmits this information to NPCR or SEER. Central cancer registries (both NPCR and SEER) only report cases to the CDC and NCI for persons that are residents of that particular state, so duplicate records should not occur for persons that may have traveled across state lines for treatment. As a result, the CBTRUS dataset is a complete recording of all cases for the time period examined (with the exception of cases from one registry from 2011-2012) with no duplicates.

No mechanism currently exists for central pathology review of cases within the US cancer registry system, and histology code assignment at case registration is based on histology information contained in the patient's medical record. As a result, histologies are reflective of the prevailing histologic criteria for a histology at the time of registration. This also means that incomplete, incorrect or alternatively stated diagnoses included in a pathology report or other medical record can result in an incorrect reporting of the details of an individual case. For example, an anaplastic oligodendroglioma recorded in a pathology record as oligodendroglioma WHO grade III may be incorrectly recorded as an oligodendroglioma when the accurate category is an anaplastic oligodendroglioma.

Currently, there is no system for the collection of survival and outcomes data from all geographic regions in the US via the cancer registry system. SEER registries are specifically funded to collect active follow-up on patients, and as a result have highly accurate survival data for patients who are diagnosed within the geographic regions covered by these registries. The SEER 18 population dataset used for the survival analyses is a subset of the larger CBTRUS dataset used to generate incidence (99.9% of the US population)11 and covers approximately 28% of the US population. Survival estimates obtained from the SEER dataset may be less reliable as representations of ‘real’ relative survival rates for the US than if they were based on data from a larger portion of the population.

Concluding Comment

The American Brain Tumor Association Adolescent and Young Adult Primary Brain and Central Nervous System Tumors Diagnosed in the US in 2008-2012 comprehensively describes the current population-based incidence of primary malignant and non-malignant brain and other CNS tumors in adolescents and young adults age 15-39 years collected and reported by central cancer registries covering approximately 99.9% of the US population.

Despite the significant scientific developments that have occurred in treating cancer in recent years, brain tumors remain a significant source of cancer-related morbidity and mortality in adolescents and young adults. Brain tumor mortality has remained relatively stable, and mortality due to other cancers has not significantly improved. This report aims to provide a level of detail in a comprehensive report that allows for more accurate comparison of the incidence and survival of primary brain and CNS tumors affecting adolescents and young adults, to recognize the impact of these tumors on individuals belonging to this age group and on society overall, and to serve as a useful resource for patients and patient families, surveillance organizations, policy makers, advocates, industry, researchers and clinicians.

Abbreviations

AIAN

– American Indian/Alaskan Native

APC

– Annual percentage change

API

– Asian/Pacific Islander

AYA

– Adolescents and Young Adults

CBTRUS

– Central Brain Tumor Registry of the United States

CDC

– Centers for Disease Control ­­and Prevention

CSS

– Cancer Surveillance System

CI

– Confidence interval

CNS

– Central nervous system

ICD-O-3

– International Classification of Diseases for Oncology, Third Edition

ICCC

– International Classification of Childhood Cancer

NAACCR

– North American Association of Central Cancer Registries

NCDB

– National Cancer Data Base

NCHS

– National Center for Health Statistics

NCI

– National Cancer Institute

NOS

– Not otherwise specified

NPCR

– National Program of Cancer Registries

SEER

– Surveillance, Epidemiology and End Results

US

– United States

USCS

– US Cancer Statistics

WHO

– World Health Organization

Appendix A.

Average Annual Populationsa for 2008-2012b by Age, Gender, and Race

Male
Age Group White Black AIAN API Total
15-19 8,515,937 1,888,284 197,230 591,389 11,192,840
20-24 8,525,811 1,713,867 190,386 670,783 11,100,847
25-29 8,296,572 1,465,887 173,417 700,196 10,636,071
30-34 7,846,363 1,345,942 157,470 679,973 10,029,748
35-39 7,842,959 1,300,866 145,846 685,568 9,975,239
TOTAL 41,027,642 7,714,846 864,349 3,327,909 52,934,745
Female
Age Group White Black AIAN API Total
15-19 8,036,429 1,824,444 187,411 564,881 10,613,165
20-24 8,063,674 1,733,094 173,432 654,697 10,624,898
25-29 7,954,215 1,576,831 160,632 753,699 10,445,377
30-34 7,575,765 1,494,150 149,669 760,239 9,979,823
35-39 7,680,538 1,465,788 141,416 761,376 10,049,117
TOTAL 39,310,621 8,094,307 812,560 3,494,892 51,712,380

aPopulation data source for 51 population-based geographic regions: Estimates from the United States. Bureau of the Census <http://seer.cancer.gov/popdata/index.html>.

Abbreviations: AIAN, American Indian Alaskan Native; API, Asian Pacific Islander.

bEstimated population for Nevada is for 2008-2010 only.

Appendix B.

Average Annual Populationsa for 2008-2012b by Age, Gender, and Hispanic Ethnicity

Male
Age Group Hispanic Non-Hispanic Total
15-19 2,307,027 8,885,813 11,192,840
20-24 2,295,374 8,805,474 11,100,847
25-29 2,270,630 8,365,441 10,636,071
30-34 2,143,149 7,886,599 10,029,748
35-39 1,964,206 8,011,034 9,975,239
TOTAL 10,980,386 41,954,361 52,934,745
Female
Age Group Hispanic Non-Hispanic Total
15-19 2,149,441 8,463,724 10,613,165
20-24 2,017,353 8,607,545 10,624,898
25-29 2,009,218 8,436,159 10,445,377
30-34 1,966,944 8,012,879 9,979,823
35-39 1,867,593 8,181,524 10,049,117
TOTAL 10,010,549 41,701,831 51,712,380

aPopulation data source for 51 population-based geographic regions: Estimates from the U.S. Census Bureau http://seer.cancer.gov/popdata/index.html.

bEstimated population for Nevada is for 2008-2010 only.

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