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Surveillance of Primary Intracranial and Central Nervous System Tumors: Recommendations from the Brain Tumor Working Group
Results

Surveillance of Primary  Intracranial and Central  Nervous System Tumors Preface Executive Summary Introduction Background Methods Results Discussion Recommendations References Tables Appendix A Appendix B Appendix C Appendix D

Percentages of Primary Intracranial and CNS Tumors by Tumor Location and by Microscopic Confirmation
Intracranial tumors comprise more than 94 percent of primary intracranial and CNS tumors, and between 50 and 92 percent of primary intracranial and CNS tumors occur in the brain (Table 2). The data in this report also show that a slightly greater percentage of malignant intracranial tumors, including malignant brain tumors, are microscopically confirmed compared with corresponding tumors of benign or uncertain behavior (Table 3). However, regardless of tumor behavior, the percentages of extracranial CNS tumors that are microscopically confirmed are higher than the percentages of intracranial tumors that are confirmed by pathologists (Table 3). Few primary intracranial and CNS tumors are not microscopically confirmed; approximately 11 percent of diagnoses are based only on a clinical or radiographical (without microscopy) assessment (Table 4).

Percentages of Malignant and of Nonmalignant Intracranial and CNS Tumors by Location
The relative distribution of nonmalignant intracranial and CNS tumors varies by primary site. While greater than 90 percent of malignant intracranial and CNS tumors occur in the brain (Table 5), only 9 to 26 percent of the nonmalignant tumors occur as parenchymal tumors (Table 6). Nonmalignant tumors comprised a significant portion of the primary intracranial and CNS tumors reported by the sources. The ratios of nonmalignant to primary malignant intracranial and CNS tumors reported by CBTRUS, MCSS, and NCDB were 0.9, 1.0, and 0.5, respectively (Table 7).

Percentages of Malignant and of Nonmalignant Intracranial and CNS Tumors by Histology
Among the malignant primary intracranial and CNS tumors, neuroepithelial (i.e., astrocytic) tumors represent 83 to 90 percent of the cases depending on the data source; lymphomas/hemopoietic tumors, 6 to 11 percent; tumors of the meninges, 1 to 2 percent; and tumors of cranial and spinal nerves, 0.2 percent (Table 8). For nonmalignant primary intracranial and CNS tumors, tumors of the meninges represent 48 to 59 percent of the cases; tumors of the sellar region (including pituitary tumors and craniopharyngiomas), 21 to 26 percent; tumors of cranial and spinal nerves, 11 to 20 percent; and neuroepithelial tumors, 4 to 5 percent (Table 9).

Percentages of Primary Intracranial and CNS Tumors by Method of Case Finding (MCSS)
Case finding audits by the MCSS occur on an annual basis in all pathology laboratories in Minnesota and include the review of surgery/pathology, cytology, autopsy, and hematology records. These audits enable the registry to ensure that there is complete reporting of cases of malignant and nonmalignant tumors. In tables 10 through 13, data from MCSS on primary intracranial and CNS tumors are presented by method of case finding. The two methods of case finding are "routine reporting" and "special efforts." A case was found by routine reporting if one or more reports received before the close-out date for a given diagnosis year was initiated by a hospital or nonhospital facility. In contrast, a case was found by special efforts if all reports of that case received before the close-out date were requested as a result of pathology laboratory audits. The data in Table 10 indicate that routine reporting of nonmalignant tumors was less complete compared with reporting for malignant tumors. The percentages of intracranial tumor cases that were found by special efforts have varied from year to year, but the trend suggests that routine reporting may be improving (Table 11). The greatest improvement has been in the coverage of nonbrain parenchymal tumors (i.e., pituitary/pineal and other intracranial). The small numbers of autopsy-only tumors were more likely to be found by special case finding efforts than by other methods of microscopic confirmation (data not shown). Most hospitals in Minnesota have cancer registries through which their tumor cases are reported. However, some of the cases that are seen at hospitals with registries are reported only through pathology laboratories affiliated with the hospitals. Approximately 80 percent (1451/1776) of the cases of nonmalignant intracranial tumors in the MCSS data base were reported by hospitals with registries (Table 12); eighty-five percent (1226/1451) of these cases were reported by the hospitals' registries (Table 13).The remaining 15 percent (225/1451) of the cases were reported through the pathology laboratories affiliated with the hospitals with registries (i.e., they were not accessioned by the registries) (Table 13). The percentages of cases of nonmalignant tumors that were reported only by the pathology laboratories at facilities having cancer registries can be viewed as a measure of how frequently the registries failed to accession the cases. Of the 225 nonaccessioned tumors, half would have been missed without the MCSS case finding audits of pathology laboratories (Table 13).

Percentages of Hospital Cancer Registries That Accessioned Malignant and Nonmalignant Intracranial and CNS Tumors (NCDB)
Based on data from NCDB, more than 1500 hospitals accessioned cases with either malignant or nonmalignant intracranial and CNS tumors, and approximately 800 hospitals accessioned extracranial cases. Cases with tumors that involved the cranial or spinal meninges or the pituitary gland were more likely to be reported by hospitals that accessioned nonmalignant primary intracranial and CNS tumors than by hospitals that accessioned only malignant tumors (Table 14).