In 2007, Steven Keating got his brain scanned for fun. “I volunteered for a study,” says Steven, who was then a student at Queen’s University in Canada. “I wanted to help science, and I was curious about seeing my brain.”
He saw more than anticipated—the magnetic resonance imaging (MRI) revealed a dime-sized abnormality in his left frontal lobe. But the researchers couldn’t tell what it was, and he had no adverse symptoms. “They said ‘don’t worry, keep an eye on it,'” Steven, who is now a Mechanical Engineering graduate student at the Massachusetts Institute of Technology (MIT) Media Lab, recalls. A follow-up scan in 2010 wasn’t worrisome either.
Then, in the summer of 2014, he noticed a symptom so slight that many would have missed it. Steven smelled a faint vinegar odor for about 30 seconds each day and wondered if it was related to the abnormality, which was near his brain’s olfactory center. His doctors weren’t concerned, though, and scheduled an MRI a month out.
It showed a baseball-sized tumor.
Three weeks later, Steven had brain surgery. “I was lucky to have time to plan it,” he says. “Most brain cancer patients present with seizures that lead to emergency surgery.”
He was awake during the 10-hour procedure because the tumor was near a language center, and his doctors wanted to avoid damaging it. While he only remembers about 20 minutes of the surgery, the video of the procedure shows he was coherent during most of it. “Watching that was a very weird experience,” he says.
Surgery went well, especially considering that his medical team cut out a fist-sized part of his brain. “I’m pretty much the same person,” Steven says. “My girlfriend and parents haven’t noticed any changes.”
His post-surgery treatment includes chemotherapy and radiation. “The chemotherapy is oral, which is much nicer than a daily IV,” he says. And the radiation is protons rather than the typical X-rays. “Protons are more targeted—X-rays go in and out, but protons go in and stop,” he says. This is critical because the tumor was also near his optic nerve.
The tumor had an IDH1 mutation, and other MIT researchers are working on IDH1 inhibitors. “They’re developing drugs that could save me,” Steven says. Eventually, he may have the option of joining a clinical trial of a new targeted treatment for IDH1 tumors. For now, he’s participating in research by getting scans to detect any tumor activity, as well as where the protons land in his brain.
Throughout, Steven has collected and shared his medical data with family and friends. “It’s very important,” he says. “Access to data, 3D printed models, genetic analysis, and visualizations of MRI scans have all been key to my understanding and healing, and to furthering broader research.” He shares his data, treatments, and his thoughts on it all in emails, his website, videos, and talks at MIT.
He also created a Cancer Commons profile and entered his data there. “It’s a rare disease and data helps link a small group of people,” he says. “It’s very beneficial for personal support and for learning about new potential treatments.”
But he wishes it was easier for patients to get their data. “My doctors have been amazing and have given me my data every time I’ve asked for it,” Steven says. “But there are lots of small barriers and they do stack up.”
He envisions a standard of care that includes patient access to, and control of, their own data as a matter of course, noting that this would also facilitate getting second opinions and participating in research. As a first step, he has been meeting with hospital officials, medical researchers, and groups dedicated to open patient data. “I would love to have full access to my data online,” Steven says. “How come there isn’t a ‘share’ button at the hospital?”