Tips for Brain Tumor Patients
Be sure that the neuropathology is correct
What kind of tumor do you have?
After surgery, the brain tumor is sent to be examined by a pathologist for a "tissue diagnosis”. All subsequent treatment - chemotherapy, radiation therapy or no treatment - will be determined by the tissue diagnosis. Your future will depend on what that pathologist says. How do you know that he or she is correct?
Many people believe that neuropathology, as well as general pathology, is a black and white field: malignant or benign. Simple. Objective. But, the fact is, neither general pathology nor neuropathology is so simple. It is highly subjective.
It is natural to assume that a specific tumor would be identified with the same name even when studied by different pathologists. Incredibly enough, the rate of agreement between pathologists looking at identical specimens of glial (brain) tumors is as low as 40%! Identification is so varied that a neuropathologist might actually contradict him or herself upon a second inspection.
Studies have shown that the same pathologist looking at the same specimen weeks later will reach the same diagnosis less than 60% of the time! And these are academic level neuropathologists - not general pathologists at local community hospitals. So what do you do?
You need to have your pathology slides looked at by other neuropathologists. If two don't agree, get a third, fourth or fifth opinion. This way a good neuro-oncologist can determine which is most likely correct, based on your history and the appearance of the tumor on imaging studies (CT and MRI).
There are actually only a few competent, experienced and practical brain tumor neuropathologists in the world. These are neuropathologists whose priority is patient care -- not anyone who is trying to set the scientific world on its ear. The Brain Tumor Foundation knows these select professionals and can advise about neuropathologists who can review your specimens for you. This tends to cost about $300 to the pathologist per opinion. But it's certainly worth it if your life depends on having this diagnosis made correctly.