Questions to Ask at Your Next Neuro-Oncology Appointment- Newly Diagnosed Patients

It's easy to walk out of a neuro-oncology appointment realizing you forgot to ask something that mattered. Bringing a written list — for yourself or for someone you're caring for — helps you use limited appointment time well and leave with real answers instead of more uncertainty. Consider bringing someone along to take notes, and don't hesitate to ask your care team to slow down or explain something again.

This information is intended for educational purposes and is not a substitute for medical advice from your care team.

Understanding Your Diagnosis

• What type and grade of brain tumor do I have?

• What exactly did the pathology show?

• What molecular markers were found, and what do they mean for treatment?

• What are my MGMT and IDH results?

• Should we consider additional molecular or genomic testing?

• Can you show me where the tumor is on my MRI and explain what that location may affect?

• How might the tumor’s location affect my symptoms or treatment options?

Understanding Treatment

• What treatment do you recommend, and why?

• Why do I need this treatment?

• What is the goal of each part of treatment?

• Will I need surgery, chemotherapy, radiation, or other treatments? If so, in what order?

• What are the risks and benefits of treatment?

• Are there other reasonable treatment options?

• What are the chances that treatment will work?

• How will we know whether treatment is working?

• How will treatment be given, and what should I expect?

• How long will treatment last, and how often will I receive it?

• Am I healthy enough to undergo treatment?

• How soon do I need to make a decision?

• What could happen if I choose not to pursue a particular treatment?

About Surgery

• What is the goal of my surgery?

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

• How much of the tumor was removed?

• How many times have you performed this procedure?

• Is additional surgery something we might consider in the future?

• What symptoms or changes should we expect after surgery?

• Are there rehabilitation services that could help with speech, movement, cognition, or other changes?

About Clinical Trials

• Are there clinical trials I may qualify for right now?

• What is the trial testing?

• What are the potential benefits and risks of participating?

• Could starting standard treatment affect my eligibility for a clinical trial later?

• Are there trials at other hospitals or cancer centers I should know about?

• If I’m not eligible for a trial now, could I become eligible later?

• Would you recommend getting a second opinion from another neuro-oncologist or brain tumor center?

About Symptoms + Quality of Life

• What side effects should I expect?

• Which symptoms should prompt an immediate call?

• What side effects should I expect from my medications?

• Are there ways to manage fatigue, seizures, headaches, nausea, sleep changes, or cognitive changes?

• How could treatment affect my ability to work, drive, exercise, or travel?

• Will radiation or chemotherapy affect my ability to have children?

• Should I consider fertility preservation before starting treatment?

• What supportive or palliative care services are available?

• What support groups are available for patients and caregivers during treatment?

• If I have questions after I leave here, who can I call?

• Who should I contact after hours?

Your Care Team

• Which clinicians will be involved in my care?

• Who will coordinate my care?

• Who should be my main point of contact when I have questions?

• Should I be seeing any additional specialists?

Cost + financial planning

• Do you accept my insurance?

• What is the cost of this treatment?

• What out-of-pocket costs should I expect?

• Is there someone who can help me understand my insurance coverage?

• Are there financial assistance programs available?

• How should I prepare for this financially?

• Who can help with disability paperwork, leave from work, transportation, or other practical needs?

Monitoring and What Comes Next

• How often will I have MRIs?

• What are you looking for on each scan?

• How do you distinguish treatment-related changes from tumor progression?

• What happens if my tumor grows or comes back?

• What treatment options might we consider next?

• Is there anything my family and I should be doing now to prepare for possible changes later?