🧠 Why I Refuse to Be a Statistic: Surviving Glioblastoma with Hope and Fire

I recently came across an incredible study that I felt compelled to share. It gave me something I did not know I needed that day— hope. The study highlights real people with Glioblastoma who beat the odds and lived far beyond what most of us are told. If you are feeling overwhelmed or discouraged, I hope this story helps you see what is possible. Because it is possible.

When I was first diagnosed with Glioblastoma , the words felt like a hammer slamming into my chest. Not just any brain cancer— the worst kind . Grade 4. High-grade. Aggressive. MGMT-methylated. And what did the doctor say?

“You likely have 12 months or less.”

No pause. No hope. Just a cold, clinical sentence that cut through everything I thought I knew about my future.

I remember hearing that and feeling like the floor disappeared. I was 48. Relatively healthy. Still full of plans. Still full of life. How could this be the end?

I am writing this today not just to vent—but because if you are living with Glioblastoma , you need to hear something your doctor might not tell you:

You are not a number. You are not a timeline. And you are definitely not done yet.

Why Do Doctors Say “12 Months or Less”?

I have thought about this a lot. Why do doctors tell people with Glioblastoma such a devastating timeframe right out of the gate? Here is what I have come to understand—through research, conversations, and a lot of emotional processing.

Most doctors are basing this on statistics . The median survival for Glioblastoma is about 12 to 15 months. That number comes from big studies with thousands of patients. But here is the catch:

Those stats include everyone.

• People who were diagnosed late.

• People who were too sick for surgery.

• People who declined treatment.

• People who had unmethylated tumors.

• People who were much older or had other health issues.

But guess what? I am not “everyone.” Neither are you.

I am 48 years old. I have a MGMT-methylated Glioblastoma , which makes me more responsive to chemo. I have fought hard—mentally, physically, spiritually—and I am still here. Thriving , even when I was told I would not be.

MGMT Methylation and the ETERNITY Study

Recently, I came across something that gave me real hope—not just the kind you write on a sticky note and hope for the best, but science-backed, data-driven hope . It is called the ETERNITY Study (EORTC 1419 Registry Study) , and it analyzed 189 patients with IDH-wildtype Glioblastoma (which is what I have).

Want to know the most mind-blowing part?

Most of these patients survived at least 5 years , and some lived for more than a decade.

The median survival in that group was 9.9 years .

And get this— 74.3% of them had MGMT promoter methylation . Just like me.

So, let me ask this: If this kind of survival is not just possible, but documented in hundreds of real cases, why was I told I only had 12 months to live?

That question eats at me sometimes. It makes me angry. It makes me want to scream. And it also fuels my determination .

The Problem with Prognoses

I get that doctors want to be “realistic.” They want to “prepare you.” But when you are handed a Glioblastoma diagnosis, what you need is not a countdown clock. You need a plan. You need fire. You need someone to believe in you—even when the odds suck.

Instead, too many of us walk out of that hospital room thinking we are already halfway gone. And that is not okay.

Because hope is a treatment, too . The brain is a powerful thing. When you feel like your life still has meaning, when you feel like you are in the fight, your whole body responds differently.

When you believe there is a future, you act like there is one.

Living Beyond the Numbers

Since that awful moment—since hearing that twelve-month sentence—I have done everything in my power to rewrite the script. I changed my diet. I researched everything from mushroom supplements to fasting protocols. I got into therapy. I reconnected with my sense of purpose . I built a brand. I poured my heart into a blog. I got back to living.

And I started connecting with other people who, like me, were told one thing—but are proving the system wrong.

People with Glioblastoma who are five, six, even ten years out. Some of them still deal with pain, or MRIs every few months, or side effects. But they are alive. And their stories are real.

You Are Not Alone in This

If you are reading this, maybe you were just diagnosed. Maybe you are sitting in that fog I remember all too well. Maybe you were just told you will not make it to next year’s holidays. Let me tell you something straight from the heart:

Do not accept someone else's expiration date as your reality.

You have the right to question. You have the right to research. You have the right to fight.

You have the right to feel—to be pissed, sad, scared, hopeful, all of it.

And most importantly, you have the right to live however long you are given with meaning, joy, and as much badassery as you can muster.

Why I Am Speaking Up Now

I am not writing this to bash doctors. I am grateful for the medical team that saved my life. But I am writing this because I know how lonely this can feel. How soul-crushing it can be when someone tells you to “prepare for the worst.”

I am writing this to say that the worst is not guaranteed.

That Glioblastoma is brutal, yes—but not unbeatable. That some of us do survive. That studies like ETERNITY exist for a reason.

And that, with the right mix of science, spirit, and stubbornness—you just might be one of the ones who makes it a lot longer than anyone thought possible.

I plan to be one of them.

I already am.

Final Thoughts

If your doctor gave you a “timeline,” you are allowed to be furious. You are allowed to call it out. You are allowed to reclaim your story.

Because statistics are not prophecies. And Glioblastoma may be tough, but so are we.

If you made it this far, thank you for reading. I hope this gives you what the medical books sometimes forget to offer: hope , truth , and the reminder that your life is still yours.

💬 Let me know in the comments or reach out—especially if you were told you only had months and you are still here. Let’s start telling our stories louder.

Cited Reference 

• EORTC 1419 (ETERNITY) Registry Study
  Long-term survival in IDH-wildtype glioblastoma patients
  https://www.ejcancer.com/article/S0959-8049(23)00230-7/fulltext

• MGMT Methylation in Glioblastoma Survivors
  Distinct DNA methylation profiles of long- and short-term survivors of glioblastoma
  https://actaneurocomms.biomedcentral.com/articles/10.1186/s40478-023-01622-w

• Case Study: Long-Term Glioblastoma Survival in Elderly Patient
  Ten-year survival in glioblastoma: A case report of a 77-year-old patient treated with cilengitide
  https://pubmed.ncbi.nlm.nih.gov/37092563/