Steven Keating had no idea that a brain scan he volunteered for in 2007 would end up saving his life.
Interested in seeing images of his brain, the now graduate student at the MIT Media Lab, who is studying mechanical engineering and synthetic biology, decided to participate in a research study in Canada eight years ago while he was attending school there. When he asked for the scans back, he was surprised by what he found.
“They told me I had an abnormality near the smell center in my brain, but that lots of people have abnormalities and I shouldn’t be alarmed,” he said. When asked what he should do, Keating was told to get his brain rescanned in a few years to see if there were any changes.
After brain scans in 2010 showed no changes, Keating felt some relief. But in July 2014, after he started smelling a strange vinegar scent for about 30 seconds every day, he knew something wasn’t right. He immediately had his brain scanned at MIT Medical and soon after found out that the smell was associated with small seizures. His abnormality—a glioma, which is a tumor that begins in the brain or spine—had grown to the size of a baseball.
Keating was able to connect with top researchers in the field of his cancer to hear their thoughts and advice on what he should do. He met with BWH Neurosurgery Chair Antonio “Nino” Chiocca, MD, PhD, who performed image-guided brain surgery on Keating last summer in BWH’s Advanced Multimodality Image Guided Operating (AMIGO) suite.
“It was amazing because through that connection, I had new options,” Keating said. He was able to have his surgery videotaped and his genome sequenced, and he used his data to develop 3-D printed models of his brain and tumor. With his background in biology, he could review his own data, which has allowed him to understand how his specific cancer pathways function and explain his situation to others.
Since his surgery, Keating has gone through rounds of proton radiation and chemotherapy. He began another round of chemotherapy at Dana-Farber Cancer Institute (DFCI) last month. Keating says he is extremely grateful for his care team, including Chiocca, Patrick Wen, MD, director of the Center for Neuro-Oncology at DFCI, Keith Ligon, MD, associate pathologist and neuropathologist at BWH, and Helen Alice Shih, MD, associate medical director of the Francis H. Burr Proton Therapy Center at MGH.
In addition to his treatments, Keating has been working with Chiocca and others on 3-D printing research. He has also given various talks and presentations about his work and his patient experience, and most recently was invited to the White House for discussions on the importance of allowing patients to have access to their health data.
“I have a strong respect for personal privacy and the idea that patients should be in complete control of their data, both to learn from and to share if desired,” he said. “For me, this has resulted in a few public talks and posting my own data to my website. So far, I’ve found support and encouragement from doctors, scientists, but most of all, from patients.”
Chiocca said it has been wonderful working with Keating, both as a patient and researcher. While it’s pretty rare that patients ask for their surgery to be filmed, he said it is valuable for them to participate in the research side of their care when possible.
“It is very easy for a patient to become depressed by their disease,” Chiocca said. “But Steven’s approach of being actively involved to raise consciousness and funding for more research for this type of tumor is remarkable. I’m just so proud to have been involved in his care.”