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READ MOREPublished on December 16, 2022 in ResearchEOY, Glioblastoma, Brain Tumor, Advocate, Brain Tumor Information, Patient, Research, Stories, Leadership Spotlight
Guest Author: Adam Hayden, MA
Glioblastoma patient and NBTS Board member, Adam Hayden, reflects on attending the 2022 Society for Neuro-Oncology Annual Meeting
I was diagnosed with glioblastoma in the final year of my graduate studies, ironically specializing in the Philosophy of Science. Ironic because what could be more absurd than a philosopher with brain cancer?! The brain is maybe the most important tool in the philosopher’s toolbox!
On the upside, I had spent years reading peer-reviewed academic literature that provided a reasonable foundation for parsing the medical literature about my disease. The mash-up of academic orientation and personal diagnosis led quickly to giving talks about my new diagnosis to inform researchers and non-researchers alike. I picked up the moniker, “The Philosopher-Patient.”
As a research-minded patient with a background in the Philosophy of Science, I’ve applied for many opportunities to put my interest and skills to work, including serving as a consumer reviewer on the Department of Defense Peer Reviewed Cancer Research Program (PRCRP) and participating in the American Association for Cancer Research (AACR) Scientist<->Survivor Program. But one conference eluded me: The Society for Neuro-Oncology Annual Meeting, or simply, “SNO.”
SNO is where the top minds in neuro-oncology, neurosurgery, neuro-radiology, lab research, and other neuro-subspecialties convene to share findings and advance the field of neuro-oncology. If you’re into the field of brain tumor research and care, SNO is the place to be, and for me, it was like going to the Super Bowl!
It was a rare opportunity – one that is often out of the reach of non-professionals because of the time and resource commitment needed. Because I was fortunate enough to attend (I must now thank the SNO organizers for inviting me and honoring me with the society’s 2022 Jan Esenwein Public Service Award), I wanted to share my biggest takeaways with those who were unable to be there.
One of my favorite sessions from SNO targeted “young,” “junior,” or “early career” researchers. We need bright minds from the next generation to join us in advancing brain tumor research. This powerful session included NBTS CEO, David Arons, and Board Member, Eva Galanis, MD, and raised awareness about NBTS research funding opportunities and the incredible resources available through the National Cancer Institute, including the National Clinical Trials Network. Others, like Hilary Keely from the Sontag Foundation, offered information and painted a compelling portrait of their research community.
Sitting in a room full of early career, next-gen researchers, it was heartening to see their interest and enthusiasm.
One session I didn’t want to miss was Caring for the Caregiver. “If I’m candid, this may be one of the most important sessions for all of #SNO2022,” I tweeted.
Florien Boele, PhD, from the University of Leeds, explained how “caregiver mastery” is good for both the patient and the care partner, and she encouraged us to formalize definitions of caregiver mastery and incorporate that into clinical evaluations. Alvina Acquaye of the National Institutes of Health (NIH) addressed the impact of cancer-related cognitive impairment on care partners and their families. Alvina also cited this paper by a friend, Allison Applebaum, PhD, that examines existential distress among care partners (the paper is open access!).
Abigail Levinson Marks, PhD, hit home with her talk, “Parenting with a Brain Tumor,” which reported the tremendous impact on families when a parent is diagnosed. Abigail discussed memory issues, personality changes, and word-finding issues that are so distressing for diagnosed parents and their families. Margaretta Page, MS, RN, highlighted the importance of a care partnership between families and care teams and extolled the virtues of brain tumor support groups.
In a session on survivorship, fellow NBTS Board member and advocate, Liz Salmi, gave a terrific talk on survivorship that demonstrated the value of involving patients in research. Liz is a dear friend, and I credit her with teaching me how to be an advocate!
Other highlights included NIH researcher Dr. Heather Leeper’s work on patient care that instructed clinicians to invest in difficult discussions about quality of life and prognosis: “Communication skills are as important as clinical skills in managing disease,” Heather said. “Don’t expect smiles…difficult conversations pay dividends in the long term.”
I found the work of Michelle Monje, MD, PhD, of Stanford University’s laboratory fascinating. Dr. Monje gave two talks, won an award, and three researchers from her lab at Stanford also presented. I attended all of them! Her work is at the intersection of neuroscience and neuro-oncology.
The perennial problems in treating brain tumors have included penetrating the blood-brain-barrier (our body’s protective system for the brain), dealing with inter- and intra-tumoral heterogeneity (no two tumors are alike), and delivering therapies to the tumor microenvironment (where the tumor makes its home). Michelle offered new ideas and some totally new directions!
Her lab is uncovering new mechanisms in brain tumor research by investigating how neurons and glia (the type of cells in the brain that give rise to gliomas like glioblastoma, oligodendroglioma, and astrocytoma) interact, and how the development of neural synapses could inform our understanding of gliomagenesis (how gliomas arise in the brain). The enthusiasm from attendees was palpable.
As a long-time and committed NBTS advocate and now a member of its Board of Directors, I’ve been exposed to NBTS priorities and the good we do to invest in, unite, and mobilize the brain tumor community. Attending SNO punctuated the influence and value that NBTS offers the brain tumor community. I was awed by the turnout for the NBTS reception on the opening evening of the conference. Gathered in one room were researchers and clinicians from UCLA, UCSF, MD Anderson, Yale, Cleveland Clinic, Memorial Sloan Kettering, the NIH, and NCI, just to name a few, and investigators from industry who are leading pivotal clinical trials. I joked that my Twitter timeline came to life!
From the reception to speakers and presentations, those excited to meet with NBTS Chief Scientific Officer, Kirk Tanner, and the crowd swirling around the NBTS booth in the Exhibit Hall, it is abundantly clear that NBTS is transforming the brain tumor landscape.
Five days of conference talks, panels, and informal networking offers so much to cover. One attendee pulled me aside on a lunch break and asked, “As a patient attending the conference, do you ever become discouraged that we have all of this research and still no durable treatments for brain tumors, especially high-grade gliomas?”
“The last 10 years have been about basic science. The next 10 are about transformative treatments,” I replied, “Like we say at NBTS, breakthroughs ahead!”
Adam Hayden, MA, serves on the NBTS Board of Directors and co-facilitates the monthly Brain Tumor Support Conversations with Lisa O’Leary. Adam was diagnosed with glioblastoma in 2016, and he uses his background in philosophy to educate and connect the brain tumor community. You can read Adam’s blog, Glioblastology, or find him on Twitter, @adamhayden, and TikTok, @glioblastology.
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