The morning of his daughter’s 10th birthday changed Joel Gendron’s life forever.
It was December 2022. Joel and his wife, Andrea, decided to take off work that day and let their two kids stay home from school. Joel called his son’s middle school to let them know he would be absent.
“They said, ‘OK, Mr. Gendron, we’ll just check him in — just hold on a minute,’” Joel remembered. “That minute turned into 45 minutes, but I didn’t know that. All I knew was that they had hung up the phone, and I was waiting for them to come back. I kind of spaced out.”
Unaware of what had happened, his wife and kids waited for him at the table so that Charlotte, the birthday girl, could open her presents. Joel joined them, but within minutes he started to feel nauseous and excused himself, going to their upstairs bathroom.
Downstairs, his family heard a crash.
Three days later, Joel woke up in a hospital room.
Joel would soon learn he had suffered a tonic-clonic seizure, a type of generalized seizure that causes violent convulsions and loss of consciousness (formerly known as a grand mal seizure).
Epilepsy is the most common cause of tonic-clonic seizures. But Joel didn’t have epilepsy.
After his family called 911 that day, paramedics brought him to a hospital near their Dedham home. Soon after, he was transferred to Brigham and Women’s Hospital, where his care team delivered alarming news: Joel had a brain tumor.
“It was a slap in the face. I was like, my gosh, how can this be happening to me?” he said. “I was healthy all my life — no major medical problems whatsoever. At the time, I was my son’s soccer coach. I ran around soccer fields with 13 and 14 year olds.”
Specifically, Joel was diagnosed with an IDH-mutant oligodendroglioma, a rare but treatable tumor that arises from the cells that make up the brain’s supportive tissue. They are most commonly diagnosed in men ages 35 to 44, with the first symptom often being a seizure. Their cause is unknown.
However, thanks to the combined expertise of his Mass General Brigham Cancer Institute care team, which consisted of world-leading experts from both Brigham and Women’s Hospital and Massachusetts General Hospital (MGH), Joel’s tumor has shrunk and stabilized since he completed treatment in 2023.
While he continues to undergo regular monitoring, as oligodendrogliomas can regrow, Joel says his good health has made the whole ordeal feel like a distant memory. At age 48, he’s back to running around soccer fields, in addition to enjoying his own hobbies, such as indoor rock climbing and snowboarding — all thanks to his “all-star team,” he said.
“Every now and then, I get vertigo, so I probably wouldn’t ride a rollercoaster anytime soon,” Joel said. “But now I know how to deal with it, and I do pushups in front of my kids so that they know their dad is tough.”
Depending on the location, size and complexity of an oligodendroglioma, sometimes the entire mass can be removed with surgery. In many cases, however, chemotherapy and radiation therapy are needed to eliminate any remaining tumor cells after surgery.
Joel would ultimately undergo all three forms of treatment: surgery, chemotherapy and proton radiation therapy.
Radiation oncologist Helen A. Shih, MD, MS, MPH, medical director of Proton Therapy Centers at MGH, determined that Joel would be a good candidate for proton therapy. Proton therapy is a form of radiation therapy that can deliver more localized treatment than conventional radiation therapy, known as photon therapy.
Mass General Brigham Cancer Institute has two proton therapy centers. Located at MGH, they are the only ones of their kind in New England.
“Proton beams travel limited distances and stop. This means there is almost no radiation delivered to the body beyond the intended target,” Dr. Shih explained. “Joel’s tumor was on the right side of his brain, which meant we were able to spare the entire left side of his brain.”
That wasn’t the only innovative therapy his care plan involved. The timing of Joel’s treatment happened to align with the U.S. Food and Drug Administration’s approval of a new cancer drug.
“After Joel completed treatment with radiation and chemotherapy, in light of recent developments in the field, I offered him a novel therapy that specifically targets the main mutation of his tumor — an IDH inhibitor — to try to delay disease progression,” Dr. Gonzalez Castro said. “He has tolerated this treatment well, and his tumor has remained stable on MRI for over two years.”
The seamless coordination among his care teams at the Brigham and MGH made so many aspects of his experience hassle-free, Joel said. And the compassion he encountered at every turn left a lasting impression.
“Everybody’s in touch with everybody, so it’s been a piece of cake in that respect,” he said. “All around, my care was wonderful. I felt like I could connect with everyone. Even when I had to just go for labs to get blood work done, the people there were so gentle and happy to answer any questions I had. And when I was at the Brigham, I would hear the nurses laughing about something outside my room, and I’d say, ‘What kind of fun am I missing in the hallway?’ They kept me smiling every single day.”
Helen Shih, MD, medical director for the Proton Therapy Centers at the Mass General Cancer Institute, discusses the effectiveness of proton therapy treatment for brain tumors and why it is important to choose a care team with proven expertise.