Questions to ask: Brain tumors

Diagnosis

• What type of brain tumor do I have, and what grade is it?
• Is this a primary brain tumor, or did it spread from somewhere else?
• Has my tumor been tested for IDH, 1p/19q, and MGMT? What do the results mean?
• Were other gene tests done on my tumor?
• How much of the tumor was removed, or can be removed safely?
• Is the goal of treatment to cure the tumor or to control it?
• Should my care be at a center that treats many brain tumors?
• Should I get a second opinion, including on the pathology?
• Do I need seizure medicine? Do I need steroids?
• Can I drive? When might I be able to drive again?

Before

• What treatment do you suggest, and why?
• What are the risks of surgery for me, given where the tumor is?
• How many radiation sessions will I need, and how long will each take?
• Will I take chemotherapy, and for how long?
• Is tumor treating fields an option for me?
• Am I a candidate for vorasidenib or another targeted medicine?
• Are there clinical trials I could join? Do I need to ask before surgery?
• Should I store eggs or sperm before treatment?
• How will treatment affect my memory, work, and daily life?
• Who should I call with problems at night or on weekends?
• What should my family know about seizure first aid?

During

• How will we know if the treatment is working?
• Which side effects should I call about right away?
• How can I lower my steroid dose safely?
• Is it safe to take my other medicines and supplements with my seizure medicine and chemotherapy?
• Could my scan changes be from treatment and not tumor growth?
• Can I see a physical, occupational, or speech therapist?
• Can I see a palliative care team to help with symptoms?
• Can I see a social worker or counselor?
• How can my caregiver help, and what should they watch for?
• What should I do if I miss a dose of my chemotherapy pills?

After

• How often will I need MRI scans?
• What signs could mean the tumor has come back?
• How long will I need seizure medicine?
• What long-term effects on memory or hormones should I watch for?
• Can I go back to work or school, and what help is there?
• Who will be my main doctor after treatment ends?
• What options are there if the tumor grows again?
• Where can my family and I find support groups?

Last updated: 2026-10-27. Medically reviewed by Veli Bakalov, MD, medical oncologist (October 2026). General education from Step by Step, the patient portal of HemeOncBuddy.