I delivered a version of this narrative to the Data Science for Digital Health and Precision Medicine class at Stanford Medical School, taught by Larry Chu, MD. Figured it would be fun to repurpose for my blog.

Over the last 30 years there have only been five FDA-approved therapies for brain cancer. That’s five… in 30 years. So when it comes to treatment, people with brain cancer have only so many options.

I sometimes joke that I was diagnosed in the stone age–you know, way back in 2008.

After my surgeries, a neuro-pathologist viewed my tumor tissue under a microscope and “graded” it as being part of a category of tumors identified by the World Health Organization as a grade 2 astrocytoma.

Astrocytes are a sub-category of glial cell in the brain, which, when malignant, form cancers called gliomas. This grading identified my diagnosis as a slow-growing, but still malignant, brain tumor, which in turn determined my treatment.

When I meet other people with brain tumors online or in person, we introduce ourselves by diagnosis and treatment history. It’s as convoluted as placing a custom order at Starbucks.

I might say…

“Hi, my name is Liz. Grade 2 astrocytoma, two brain surgeries, 24 month Temodar chemotherapy. Hold the radiation.”

But starting in 2016, people with brain cancer are no longer treated based solely on what we see under a microscope…

Today, it is standard practice for our tumors to be tested for mutations found within the tissue itself, also known as biomarkers. These mutations help identify if a person has a “more favorable” or “less favorable” prognosis and leads to a custom order of treatment decisions.

Precision medicine is a sum of many parts. It is the assessment of objective information–grading and biomarkers, and a person’s age and overall health–as well as subjective information–the goals of each individual person. Combine this stuff together, and we get precision medicine, which delivers the right treatment, to the right patient, at the right time.

The most malignant form of brain cancer is the grade 4 glioma also known as a glioblastoma. These cancers have a five-year survival rate of less than five percent. And in 2015, my dad was diagnosed with glioblastoma. He died seven months later.

There is no cure for brain cancer, and grade 4 glioma is the predicted trajectory for my own diagnosis. I’ve asked my doctor,

“When am I supposed to develop a glioblastoma? Is it months from now? Years? Decades?”

She can’t give me an answer.

Attending a research roundtable in Washington, D.C., discussing strategies to fast track drug development for brain cancers.

But just because my diagnosis was based on pathology and not biomarkers, it doesn’t mean I can’t seek answers today while time is on my side and I am still healthy. Last year I asked for my brain tissue to be analyzed, so that if and when my tumor decides to grow, I will know my biomarkers and be ready to qualify for numerous clinical trials designed just for my personal situation.

Even though we’ve only had five FDA-approved therapies over the last 30 years, that doesn’t mean there haven’t been numerous attempts to combat this disease.

In general, we know just point-one percent (0.1%) of drugs make it out of the clinical trial phase, which means thousands of treatments show no statistically significant benefits for people with cancer.

A glioblastoma patient could not survive hundreds of Hail Mary attempts to find the drug or drugs, out of thousands of possibilities that might help. But with preparation and knowledge, precision medicine might lead to the treatment option that will be best for me.

The big question is, which trial is the right one? Will I be that unicorn patient who might live a life that is statistically longer than the current patient population? And with the cognitive decline that comes with brain cancer, would this be a kind of life I’d want to live?

This is what I wonder about at night. This is what I wonder as I race the clock hoping science progresses faster than my disease.