What to Ask Your Doctor

Here are some helpful questions to ask your doctor about ependymoma.

Several types of doctors, such as neurosurgeons, neurologists, oncologists, radiation oncologists and neuro-oncologists, care for patients with ependymoma. Each type of doctor has expertise in different parts of your care, so it’s important to learn about your tumor so you know what kinds of questions to ask. See our recommended resources.

What is the exact type and grade of my ependymoma?

Ependymoma is a class of tumor that can occur in the brain or spinal cord. It includes different subtypes and grades. For example, ependymoma may be defined by grade (I, II, or III) or may have an added name such as myxopapillary ependymoma (a grade I tumor) or anaplastic ependymoma (a grade III tumor). The grading system describes microscopic features that may predict how aggressive a tumor may be. It is not clear how well grade predicts the outcome of ependymoma.

What is the size of my tumor?

In addition to your tumor’s size, you should also ask about the amount of tumor spread into nearby tissues and whether the tumor has spread to other areas of the central nervous system. Doctors use the tumor subtype, grade and stage to plan treatment.

How complete is the diagnosis? Will my tumor be diagnosed according to the latest WHO criteria? 

Ependymoma is a rare cancer. If there is a question about the diagnosis, ask if your tumor tissue can be sent to a specialized center for review and to confirm the diagnosis.

What is my prognosis?

Your prognosis is what the doctor thinks will happen with your cancer – your chance of recovery, the expected course of the cancer, or the length of time you will be sick. All this depends on the type and grade of ependymoma, treatment you can have, your age and general health.

How many patients have you treated with ependymoma?

It is important that you make sure that your doctor or surgeon is qualified. If they have not seen a patient with an ependymoma, we would recommend seeking out a second opinion at a CERN center.

Should you obtain a copy of your pathology and MRI report?

Diagnosis and treatment of brain or spine tumors is based on the results of your pathology and MRI report. Therefore, understanding your pathology and MRI reports is key in making treatment decisions.

Information in a pathology report includes:

  • The tumor type and organ from which the tumor developed
  • Whether cancer cells are present at the edges of the surgical resection
  • The results may include special tests, such as the presence of special markers on the tumor cells
  • The tumor size, how aggressive it is and if it has spread
  • The tumor grade

Under the Federal Health Insurance Portability and Accountability Act (HIPAA), you have a right to obtain copies of your medical records.

What happens to my tumor tissue, and will I have access to it in the future?

Often and with a patient’s permission, tissue is stored in a tissue bank for future testing. For example, results from certain tissue tests may tell your doctor if there are abnormal findings. Also, results could tell your doctor if you would benefit from a targeted drug or if you are eligible to participate in any clinical trials.

Are there other questions that I should ask?

Here are a few more questions you should ask:

  • Are there more tests I need to have?
  • Are there other brain or spinal cord tumor specialists I need to see?
  • Am I eligible to participate in any clinical trials?

The National Brain Tumor Society has a series of Key Questions To Ask Your Doctor within the Brain Tumor Experience that include:

If you have questions about what you should ask your doctor or need more help, please contact us. We encourage you to keep a notebook with all of your questions and concerns that you can bring to your appointments. You can keep important numbers, medications, instructions, and other information in the notebook as well. You can never ask too many questions. 

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