On January 1, 2004, all cancer registrars
in the United States will begin to identify and abstract benign
and borderline tumors of the brain and central nervous system.
The collection of benign brain and central nervous system
tumors is mandated by Public Law 107, 260, (Word
version / PDF
version), the Benign Brain Tumor Cancer Registries Amendment
Act. Any central cancer registry funded by the National Program
of Cancer Registries of the Centers for Disease Control is
required to submit benign and borderline CNS cases to NPCR.
The SEER Program will also begin collecting benign CNS tumors
as a research priority defined by two independent agencies
within the National Institutes of Health. As a result, there
will be 100% central registry participation in this effort.
The reason for reporting benign and borderline brain and
CNS tumors are:
- Benign and borderline CNS tumors cause disruption in normal
function similar to that caused by malignant CNS tumors.
- Location of a CNS tumor is as important as tumor behavior
(benign or malignant) for morbidity and mortality.
In the early 1900’s, the neurosurgeon Harvey Cushing
made the observation that some brain tumors are malignant
because of their histology, and some are malignant because
of their location. By this he meant that in the early 1900’s
some tumors were not resectable and would result in the death
of the patient because of mass effects on vital areas of the
brain. In the past 100 years, with advances in microsurgery,
radiation therapy, and earlier diagnosis, the maxim of Dr.
Cushing still stands, although at a greatly diminished number.
The tumors, whether benign or malignant, produce clinical
effects by similar mechanisms of mass effect, hemorrhage,
seizure activity, and edema. Population-based data on benign
brain tumors has not been routinely collected and has limited
our present knowledge of these tumors to hospital case series
of 10 to 20 cases. Long term follow-up in these studies are
generally absent. Although these tumors are individually rare,
patients with benign brain tumors represent an under-appreciated
financial and health burden in the United States. These cases
include those tumors arising in families with an inherited
tendency to develop benign and malignant brain tumors, tumors
arising from developmental abnormalities, morbidity from ruptured
benign brain tumors, and eventual malignant transformation
in a subgroup of patients with optic nerve gliomas.
Existing coding rules for brain and CNS tumors have been
guided by the behavior of these tumors. With the change to
a site definition to guide their collection, the ROC Benign
Brain Tumor Subcommittee reviewed coding rules applicable
to both non-malignant and malignant brain and CNS tumors. Recommendations
applicable to the current rules guiding multiple primaries
for malignant brain and CNS tumors are contained in a separate
document and have been forwarded to the SEER Histology Coding
Committee for review in 2003.
Click links below to view the NAACCR Registry Operations
Committee document entitled "Accessioning Primary Intracranial
and Central Nervous System Tumors General Reporting Rules."
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