David Onley has lived much of his life in the public eye. As a former broadcaster and serving as Ontario’s 28th Lieutenant Governor from 2007 to 2014. In 2019, however, he made headlines for a very personal reason. After experiencing a two-year steep decline in his health and daily functioning, Onley was diagnosed with a benign brain tumour, which was surgically removed by Sunnybrook neurosurgeon Dr. Leo da Costa in the Hurvitz Brain Sciences Program.
As part of his follow up, Onley is now participating in an ongoing trial called the MOMENTUM (The Multiple Outcome Evaluation of Radiotherapy Using the MR-Linac) study, for which radiation oncologist Dr. Arjun Sahgal is the site lead at the Odette Cancer Centre at Sunnybrook. Here, David and his surgeons look back at what led him to his initial diagnosis, and why he’s chosen to share his current experiences as a patient with others.
When did you first start noticing symptoms that something was possibly wrong?
David Onley: I started teaching after leaving the Office of Lieutenant Governor in 2015 and I was determined to keep meticulous notes. So I taught that first year, and then repeated the cycle in 2016 and 2017, but noticed it was becoming more and more difficult to teach the courses and I was getting very frustrated. It made no sense, as is should have been getting easier.
Then came the physical decline. I started to fall more and my family noticed the changes. My wife told me my voice was getting weaker, and I took great umbrage at that because I’m the broadcaster of the family! It was really bothering me. Then it got to the point where I literally had trouble sitting up and walking. Where it really hit the wall was when I nearly drowned in my bathtub because I couldn’t get out and I wasn’t mentally processing the fact that my life was in danger. We all knew something was wrong, but didn’t know what it was.
What did you do at that point?
David Onley: My family doctor referred me to Sunnybrook, where I underwent a series of tests to try and find an answer for my rapid decline. Those included ALS tests, CAT scans and an overnight sleep lab study. During this time, I experienced a series of falls. After having an MRI, I emerged thinking I’d be told to make an appointment to see my neurologist Dr. Sandra Black. Instead, the technician told me with real urgency that I needed to get to emergency immediately, where we met Dr. Black. It’s important to remember that everyone’s situation is unique, but in my case, she said she feared that if I sneezed the bottom of my brain would drop out.
A benign brain tumour called a meningioma was found on my right frontal lobe. It was the size of an orange and it needed to be surgically removed right away by Dr. Leo da Costa because my condition was so dire. Instead of being panicked or devastated or crushed, I was actually relieved because I thought, oh, they’ve diagnosed it. It was a relief after going through the better part of two years of decline and frustration and not being able to figure out what was happening to me.
It was at that point, down in emergency, that I was heavily sedated and I have no memory at all until the next morning being rolled into surgery.
Dr. da Costa: When he came to see me, he already had and MRI scans showing the tumour. It was sizeable, but luckily amenable to being removed surgically.
David Onley: As part of my follow up after my surgery, I would come in to Sunnybrook every few months to be monitored. When a small change was eventually detected, I had a discussion with my medical team about best next steps.
It was decided that I would start a regime of ongoing radiation to get rid of the area that had been left behind after the actual surgery. These are minute amounts of the tumour and not malignant, but the only way to guarantee they’re not going to become malignant is to eliminate them through radiation. I decided to move forward with treatment on the MR-Linac as part of the MOMENTUM (Multiple Outcome Evaulation of Radiotherapy Using the MR-Linac) study.
Dr. Arjun Sahgal: The MR-Linac Elekta Unity is the first machine in the world to combine radiation and MRI imaging, meaning every day you come in for treatment, the team uses that day’s image of your brain to plan exactly where to focus the radiation. Because the MR-Linac is a new device, every patient treated on it is enrolled in this global trial. Sunnybrook was the first site in Canada to have the MR-Linac and we are the only study participant in the country right now. We share our data, so we’re learning about this technology as a global community.
As a patient, what does treatment on the MR-Linac feel like for you?
David Onley: I’m just laying down and laying still. They create a plastic mask that covers my face and secures my head to the table. The only discomfort I’ve experienced is that it totally secures my head to the table and after a half hour or so, it would be nice to move. But really, it’s not bad, and I’m given ear plugs to protect against the noise inside the MRI. It’s quite amazing when the radiation gamma beam is released because a number of patients, including myself, get gentle flashes in their eyes, almost like a flash of lightening. It’s not painful, but it’s a reminder of the technology that’s at work.
Dr. Arjun Sahgal: Thirty to forty percent of the time, we’re either making a change in the medicine or the actual radiation treatment plan because we can see the tumour each day.
David Onley: I took time to learn more about the MR-Linac technology before my treatments. I can say I would far rather go for something that was being seen effectively live, or almost live. That’s really quite amazing. Totally amazing.
Dr. da Costa: Many treatments being offered to Sunnybrook patients now are much more personalized and image-guided platforms. We’re getting busier and busier. For patients, it’s important that they are aware that things can happen, and sometimes we can change outcomes thanks to these advances.
Why are you sharing your story now?
David Onley: Maybe it’s the old newsman in me looking to tell the story, but this is an incredible piece of machinery. And if it raises awareness about potential treatment for somebody else, then fantastic.
This interview has been edited for length and clarity.