Questions to Ask Your Brain Cancer Care Team-For Patients Dealing With Recurrence
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 Recurrence
What exactly are you seeing on my MRI?
How certain are you that this is tumor progression or recurrence?
Could what you’re seeing be treatment effect or pseudoprogression?
Would additional imaging or testing help clarify what we’re seeing?
Do we need a biopsy or another surgery to confirm recurrence?
Where is the new growth?
How might its location affect my symptoms or treatment options?
How quickly does it appear to be changing?
Understanding Your Options
What treatment options are available to me now?
What is the goal of treatment at this stage?
Is another surgery an option?
Could I receive radiation again?
What medications or therapies could we consider?
What are the potential benefits and risks of each option?
How will each option affect my quality of life?
How much time do I have to make a decision?
What would you expect if I chose not to pursue additional tumor-directed treatment?
Re-testing + Pathology
Should my tumor be tested again?
Could the molecular characteristics of my tumor have changed?
Would another biopsy provide information that could change my treatment options?
Is additional genomic or molecular testing appropriate now?
Understanding Clinical Trials
Are there clinical trials specifically for recurrent GBM that I may qualify for?
How do the treatments I’ve already received affect my eligibility?
Could starting another treatment now make me ineligible for a clinical trial later?
Are there trials at other institutions that we should consider?
How quickly would we need to enroll?
What costs or travel would participation require?
Getting Another Opinion
Would you recommend getting another opinion before we decide what to do next?
Should we consult another brain tumor center?
Can my scans and records be reviewed remotely?
How quickly should we seek another opinion?
Quality of Life + Support
How might this progression affect my symptoms or daily life?
What symptoms should my caregiver and I watch for?
How can we prioritize quality of life while continuing treatment?
Would palliative care be helpful at this stage?
What additional support is available for my family and caregiver?
Planning Ahead
What are we hoping the next treatment will accomplish?
How and when will we know whether it is working?
If this treatment doesn’t work, what options could come next?
Are there decisions we should be thinking about now rather than later?
