Talk to NBTS About Glioblastoma Progression

National Brain Tumor Society is looking to better understand the lived experience of glioblastoma (GBM) progression from the perspective of patients, caregivers, and loved ones. Your insights — from the medical hurdles to the personal moments — will help support others walking this path. Please share as much or as little as you feel comfortable with.

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Are you comfortable sharing your experience with NBTS for possible inclusion in future content (e.g., Share Your Story page, social media, NBTS’s blog, etc.)? Your quotes would be attributed to your first name and last initial.(Required)

How was the news delivered to you or your loved one? What is the one thing your medical team said (or didn’t say) that made a significant impact?

Did you or your loved one seek a second opinion? If yes, how did it help you plan your next steps?

Did you or your loved one look for potential clinical trial opportunities? If yes, how did you make an informed decision whether to enroll in one or not?

What was the deciding factor for your or your loved one’s next step in treatment (e.g., quality of life, trial availability, etc.)?

If you could go back to the day of that first recurrence or when you found out the tumor had progressed, what advice would you give yourself about advocating for your care or your loved one’s care?

Which side effects (physical or cognitive) were the most challenging, and did you find a specific tool, medication, or habit that helped manage them?

How did the recurrence or progression change how you view your or your loved one’s future or your daily priorities?

What is one thing you wish the general public — or even your extended family — understood about the reality of GBM progression?

Is there anything else you would like to share?

Your Connection to Brain Tumors

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Which tumor type best describes your diagnosis or the diagnosis of your family member or friend?(Required)

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Talk to NBTS About Glioblastoma Progression

Your Connection to Brain Tumors