In order to gain a better understanding of your brain cancer diagnosis, here are some questions to ask your doctor. Remember, there are several types of doctors who care for patients with ependymoma, such as neurosurgeons, neurologists, oncologists, radiation oncologists and neuro-oncologists. Each type of doctor has expertise in various components of your care, so it’s important to do some research your brain cancer in order to ask knowledgeable questions for details about your condition – see our recommended resources here.
What is the exact type and grade of my ependymoma?
Ependymoma is a class of brain tumor and spinal cord tumor that includes different subtypes and grades. “Grade” – typically either I, II or III – is a system developed by the World Health Organization used to describe microscopic features that may predict the tumor’s aggressiveness. It is not clear how well grade predicts outcome in ependymoma, but determining the value of grade is one of the major goals of The CERN Foundation investigators.
When asking about your tumor’s size, you should also inquire about the extent of the invasion of surrounding tissues and whether the tumor has spread to other areas. The size and spread of the brain tumor is often referred to as its “stage.” Doctors use the details of tumor subtype, grade and stage to plan brain cancer treatment.
Your prognosis is a forecast of the likely course and outcome of your brain tumor, based on such possible factors as the type of ependymoma, brain cancer treatment you can have, the grade of the brain tumor, your age and general health. You also may want to ask about the likelihood of being cured and chances of having a recurrence.
Ependymoma is a rare cancer. If there is a question about the diagnosis, ask if the brain tumor tissue can be sent to a specialized center for review and diagnosis confirmation.
The diagnosis of brain tumor tissue by a pathologist is the “gold standard” upon which brain cancer treatment is based, according to the College of American Pathologists. Therefore, understanding your pathology report is a key to participating in brain tumor treatment decisions.
Information in a pathology report includes:
The tumor type and organ from which the tumor arose
Whether cancer cells are present at the edges of the biopsy
The results may include special tests, such as the presence of special markers on the tumor cells
The size, invasiveness and spread of the tumor
The tumor grade
Under the Federal Health Insurance Portability and Accountability Act (HIPPA), you have a right to obtain copies of your medical records. Be sure to get medical records for all tests performed to diagnose your brain cancer.
You may need to have your brain tumor tissue tested for certain abnormalities in order to know whether you would benefit from a targeted drug or if you are eligible to participate in any clinical trials for cancer testing a targeted agent. Make sure your brain tissue specimen is being stored properly and that you will have access to it in the future.
Ask if there are additional tests you need to undergo, whether there are other neuro-oncology specialists you need to see and if you were evaluated properly and thoroughly using state-of-the-art technologies.
You should also ask your doctor if you are considering participating in any clinical trials. See our section on what to ask about clinical trials for help initiating this conversation.
If you have questions about what you should ask your doctor or need more guidance please contact us or log in to our message boards to connect with fellow patients, caregivers and medical providers. You can never ask too many questions!