Understanding Brain Cancer

What Are the Questions to Ask About Brain Cancer?

Last updated and reviewed on June 16, 2026.

A brain cancer diagnosis brings with it an enormous amount of information to absorb, a lot of decisions to make, and many medical terms that may be completely new to you. One of the most important and empowering things you can do throughout your care is to come to appointments prepared with questions. Research consistently shows that patients who ask questions, understand their diagnosis, and actively participate in their care make decisions that better match their own values and feel more satisfied and supported throughout their treatment.

Do not worry about asking too many questions or taking too much of your doctor's time. Your questions are important. Write them down as they come to you between appointments, in the middle of the night, whenever they surface, and bring your list to every visit. Having a trusted friend or family member come to appointments with you to take notes (or ask permission to record the conversation) means you will not have to try to remember everything alone.

What Questions Should I Ask My Doctor About a Brain Cancer Diagnosis?

These questions are most useful right at diagnosis, when you are trying to understand exactly what you are dealing with.

• What type of brain tumor do I have, and what does that mean specifically?

• What is the grade of my tumor? How does that affect how it will behave?

• What molecular tests were done on my tumor tissue? What were the results for IDH mutation, MGMT promoter methylation, 1p/19q codeletion, EGFR, and TERT?

• How do these molecular results change my diagnosis or prognosis?

• Is my pathology report final, or are more tests still pending?

• Has the tumor spread beyond where it originally started?

• Would a second opinion on my pathology from a neuropathologist at a major brain tumor center be helpful?

• Should I be seen or treated at a specialized brain tumor center?

• Will my case be reviewed by a multidisciplinary team that includes a neurosurgeon, neuro-oncologist, radiation oncologist, and neuropathologist?

• Is there any genetic or hereditary connection to my tumor that my family should know about?

What Questions Should I Ask About Brain Cancer Treatment?

These questions help you understand your treatment options clearly before making decisions.

• What are all of my treatment options, and what do you recommend for me?

• What is the goal of the recommended treatment to cure the tumor, control it, or relieve symptoms?

• If surgery is recommended:

• How much of the tumor do you expect to be able to remove?

• What are the risks of surgery for my specific tumor location?

• Is an awake craniotomy appropriate for my situation?

• What is recovery from surgery typically like, and how long will I be in the hospital?

• Will I need rehab after surgery?

• If radiation is recommended:

• What type of radiation will be used?

• How many treatments will I need, and how long does each one take?

• What are the short-term and long-term side effects of radiation to this area of my brain?

• Is proton beam therapy an option for me?

• If chemotherapy is recommended:

• What drugs will I be taking, and are they pills, infusions, or both?

• How long will I need to take them?

• What are the most likely side effects, and how can they be managed?

• Are tumor treating fields (TTFields) appropriate for my tumor type?

• Are there targeted therapy options based on my tumor's molecular profile?

• Are there clinical trials available that I should know about before I commit to a treatment plan?

• What happens if this first treatment does not work?

What Questions Should I Ask About Follow-Up Care?

These questions help you understand what happens after active treatment ends and how you will be monitored going forward.

• What does my follow-up schedule look like after treatment?

• How often will I need MRI scans, and what are we looking for?

• What should I do if I notice new symptoms between scheduled scans?

• How will we distinguish between tumor recurrence, pseudoprogression, and radiation necrosis on my scans?

• What are the most important late effects of my treatment that I should watch for?

• Will radiation affect my memory or thinking over time, and is there anything I can do to support my cognitive health?

• Do I need to keep taking anti-seizure medications, and for how long?

• Should I see a neuropsychologist to evaluate and help manage any cognitive changes?

• Will I need to continue seeing a neuro-oncologist, or will my care transition back to my primary care doctor at some point?

• Can I get a written survivorship care plan that summarizes my diagnosis and treatment?

What Questions Should I Ask About Clinical Trials?

These questions help you evaluate whether a clinical trial is right for you.

• Are there any clinical trials available that match my specific tumor type, grade, and molecular profile?

• Should I consider a trial now, or is it something to consider if my tumor comes back?

• What phase is the trial in, and what is its purpose?

• What treatment would I receive if I join? Is there a control group receiving standard treatment?

• Is there any chance I would receive a placebo instead of active treatment?

• What are the known and unknown risks of the experimental treatment?

• How would this trial affect my treatment schedule and the number of appointments I need?

• What costs are covered by the trial, and what might I have to pay?

• Can I leave the trial if I decide it is not right for me?

• Are there trials at other institutions that I should look into?

What Questions Should I Ask About Coping and Support?

These questions help you access the emotional, practical, and social support you need throughout your brain cancer journey.

• What mental health and emotional support resources are available through your center for brain tumor patients?

• Is there an oncology social worker or psychologist who specializes in brain tumor patients that I can meet with?

• Should I see a neuropsychologist to evaluate my thinking and memory, and if so, when?

• Are there brain cancer support groups in person or online that you would recommend?

• What palliative care services are available to me, and when should I be connected with them?

• Are there caregiver support resources for my family members?

• Are there resources to help with the financial aspects of my care, like copay assistance, disability paperwork, or transportation?

• If my condition changes in a way that makes it harder for me to make decisions, how do we plan for that now?

• Is there a patient navigator or care coordinator who can help me understand and organize my care?

• How do I reach your team quickly if I have new symptoms or urgent concerns between appointments?

• What’s Next: The next page in this guide describes the What Is Brain Cancer. If you would like to read another page in this guide, return to the Brain Cancer 101 Guides page and choose another topic.