Brain Cancer

Canadian man who 3-D printed copy of his brain tumor pushes for more access to patient data

Steven Keating holds a 3-D printed model of his brain tumor.

Steven Keating holds a 3-D printed model of his brain tumor.  (Paula Aguilera and Jonathan William)

A 27-year-old Canadian man with a keen interest in his own health played a key role in the discovery of his brain tumor, which he has now used 3-D printing to create a model of.

In 2007 Steven Keating, a doctoral student at Massachusetts Institute of Technology (MIT) Media Lab, volunteered for an MRI study meant to analyze the brain’s response to fear. The images detected a small abnormality in the frontal lobe, and Keating saw a neurologist who said they would continue to monitor it. He had it re-evaluated in 2010 and doctors were still unable to determine exactly what it was.

“In 2014 I started smelling a very faint vinegar smell for 30 seconds or so, for about once a day. After the third or fourth time, I thought that was really weird,” Keating told He went back to MIT and pushed for another MRI scan. A month later, it was revealed a large tumor the size of a baseball had formed where the abnormality was originally detected. He was diagnosed with a low-grade IDH1 tumor, also known as astrocytoma, and was scheduled for surgery three weeks later. 

Keating was kept awake during a 10-hour surgery at Brigham and Women’s Hospital in Boston to remove the tumor, involving a large surgical team and continual scans to see where the cancerous tumor remained and what was left to remove. Keating underwent combined proton radiation and chemotherapy in January 2015, and will continue chemotherapy through the next 4-8 months. Doctors continue to monitor his progress through monthly scans, and they are also watching a hematoma that he has developed. 

It wasn’t until after his surgery that Keating had enough data to begin printing models of his tumor; a method that he believes would have greatly helped the team of surgeons beforehand.

“I started printing out copies of my tumor, and copies of my brain,” Keating said, adding that the practical uses for 3-D technology in medicine are endless. “You could 3-D print something to use as a surgical tool or as a guide, or even just to have it in the room to point out something to the team of surgeons.”

The idea to 3-D print his tumor came from his curiosity about what was happening inside of his body. Where the tumor came from, how it morphed and what happened to his brain now that it was removed.

“It was much more of trying to visualize what happened, and be able to explain the story and be able to see it,” Keating said. “If I hand you a copy of my head 3-D printed, you can get a sense very quickly of here is the tumor, and here is what they did.”

Keating is now focused on open-sourcing medical data , and better access to personal medical records to improve sharing in the medical field.

“When you break your arm, and you go to the doctor, they’ll show you the X-ray. They’ll say ‘There’s the break, here’s what happened.’ What if we’re talking about something much more complex? What’s the best way to view the MRI could come to you and bring you a 3-D print of your brain or of your broken bone, and show you ‘Here is what we’re doing,’” Keating said.

Throughout his ordeal, Keating kept pushing for access to his medical records. He wanted to be able to gather as much clinical and research data as he could so that he could visualize what was happening inside of him. He enrolled in a pathology course at MIT and made his tumor his final project. However, Keating hit road blocks when trying to get access to his full genome data.

“The patient has the least access to the data, but has to make the most medical decisions. It was my decision to do surgery or radiation or chemo, what type of chemo, it’s all in the patient’s hands. Usually they just follow what the doctor says, but they don’t have that same access to the data that the doctors do,” he said.

“Patients don’t have access to their data legally, they only have access to their designated record, and if it’s not included in there they don’t see it,” he said. “It would be great if there was a share button at the hospital, while I’m concerned with privacy, it should be up to the patient. If I wanted to share it with myself or my family or my doctors, I would like to be able to do that in a simple matter.”

Keating said the benefits of having open access to medical data would also transcend into the 3-D printing world. Access to data would allow for third-party developers to provide tangible products. He likened a hypothetical platform for cancer patients to Google Maps.

“With Google Maps, you want to go to the mall, you type it in, it’ll tell you bus, train, walk, bike. It’ll show you different routes and give you different information about the routes. You can plan out your journey based on other’s experiences,” he said. “In medicine, there’s none of that, so you don’t really know where you are or how you want to get there. You want to get healthy, but you’re not sure how to get there.”

Keating has his surgery videotaped and shared it with his friends and family, as well as other patients in an effort to make it more relatable. He said it opened the lines of communication in ways that wouldn’t be possible without providing tangible experience for others to see. To tie in 3-D printing, he believes that if someone was either studying his case, or diagnosed with something similar, sharing data through a social or network platform would enable them to print out a tangible version of it.