‘Here be dragons’: Long-term survivors like me can help map the boundaries of cancer

“I hope to see you again in six months!” I call back to my radiation oncologist with a big smile as I leave his office.

It is my first six-month post-radiation follow-up visit. As my wife, Whitney, and I walk toward the lobby, I bounce jovially from step to step, leaning into my cane to support my weak left leg. Only a few months out of a rehab hospital, I have just re-learned to walk, bathe, dress, and feed myself.

Surgery to control the glioblastoma growing in my brain left me with several impairments. Some I regained, like the ability to walk and to lift my youngest son to place him in his crib. Others, like balance and control for the left-side of my body, present continuing difficulties. In moments like these when I sit at my laptop and type to tell you this story, I become acutely aware of my disabilities.

“All we can do is hope,” the doctor replied that day, his words tethering us to the devastating reality of glioblastoma, an aggressive brain cancer with a median survival time of just 15 to 16 months. I was diagnosed in June 2016, putting me among just 7% of long-term survivors, people who live with glioblastoma for five years or more.

I am an outlier, one of the fortunate people whose bodies respond to antiquated treatments. There aren’t many of us, and there is even less information explaining how and why we defied the odds. It is frustrating to be left with more questions than answers.

To learn from long-term survivors like me, the U.S. needs to build a connected cancer infrastructure.

To be sure, there are registries of cancer survivors that track not only their vital statistics, diagnostic information, and treatment plans, but also genomic data to understand the heterogeneity of individuals’ particular diseases, demographic data to help understand social determinants of health and possible associations with clinical outcomes, and radiographic data from imaging studies to help understand diverse phenotypes.

But these databases are often housed in specific academic institutions, are restricted by vendor-supported electronic health records, or reside in proprietary data warehouses owned by private-sector genomic sequencing organizations. In the information age, data are currency, but patients rarely benefit from the data they legally own.

Our nation’s biomedical infrastructure still lacks adequate capacity to appropriately aggregate and collate the volumes of data on individuals that would enable the large natural history studies required to explain what’s contributing to long-term survivorship like mine.

What could also help is pharmaceutical companies making data available about clinical trial failures, because there are exceptional responders in many trials, even trials that fail to achieve their goals. People who participate in clinical trials consent to give the gift of their time and their bodies to science. Shouldn’t the trials that fail to produce a new marketable drug be analyzed in terms of who did benefit — and that information be made public — so it can be a lead for the next generation of patients?

Congress is making progress in the fight against glioblastoma with the bipartisan Senate Resolution 210. It encourages public awareness of the disease and continued investments in glioblastoma research and treatment.

Whitney and I never imagined I would still be alive in 2021. The youngest of our three boys was only 8 months old when I was diagnosed with glioblastoma. We wondered after my diagnosis whether he would be old enough to have memories of me. Next month, I’ll walk him to the bus stop with his older brothers, sending him off to kindergarten.

Of course, while my family and I celebrate the time we have together, daily life is fraught with challenges. I experience seizures weekly, and am easily fatigued. My loss of short-term memory is alarming. And because of motor impairments and problems with balance, I fall easily and often.

Almost more difficult than coping with physical symptoms is the existential distress of survivorship that confronts us with the fog of an uncertain future. The logistical challenges of managing a family of five, with only one driver in the household, places undue stress and burden on Whitney, who works full time to carry our medical benefits and support our family as the primary earner.

Though we are managing to forge ahead as a family, there is no map for long-term cancer survivors like me: the outliers. A copper globe created in 1510 carries the Latin phrase “Hic sunt dracones,” Latin for “Here be dragons,” near the southeast coast of Asia, perhaps as a warning that the boundary of the map had reached the edge of the known world.

There is much to be learned to improve the experience for people living with cancer today and to improve survival among those with the most recalcitrant of cancers.

Am I and my fellow travelers purely statistical anomalies? Or is there something within our biology giving us a leg up? Is it due to a particular response to the combination of therapies we received or specific surgical outcomes? Is it something in our genes or lifestyles or diets?

Patient registries and efforts like the National Cancer Institute’s Exceptional Responders initiative are important steps to potentially reveal parts of the map that are hitherto unseen, but more can be done. Many survivors, such as myself, actively raise our hands to participate in research. So keep calling on us. Learn from us — and for us. Make the most of our survivorship. No aspect of research should go to waste.

Surviving glioblastoma for five years is a rare gift that few families are given. Our experience is the exception, not the rule. And here I am, ready to go slay some dragons. I call on leaders across the cancer research world to join me.

Adam Hayden is a learning and development professional, nationally recognized patient advocate, and member of the National Brain Tumor Society’s Board of Directors. He blogs about living with brain cancer at glioblastology.com.