Richard Scolyer was fully engaged in the business of life when he suddenly received a death sentence. A more lively person would be hard to find. As an endurance athlete competing around the world, he was in peak physical condition. As one of the world’s leading pathologists on melanoma whose pioneering research has saved thousands of lives, he was in demand. At 56, Prof Richard Scolyer flew along. His life, he says, was “rich”. And then, on the morning of May 20, 2023, he found himself unconscious and convulsing on the floor of a hotel room in Poland, panicked and scared.
After this grand mal attack, he went for an MRI scan at the University Hospital in Krakow. It found a mass in his temporal lobe. Scolyer knew immediately that this delivered very bad news.
Having diagnosed other people with cancer many times, he knew exactly what the finding could mean. Most likely brain cancer. He knew the outcome for a high-grade glioma was “shockingly bad”. That a brain tumor was incurable, and he would have a “terrible last few months.” He fell into black despair; crushed, anxious, terrified. He cried and cried, cried when he called his children.
A biopsy operation carried out 12 days later in Sydney would confirm the “worst of the worst”. It was an aggressive grade 4 IDH wild-type glioblastoma – a terminal diagnosis.
“I didn’t want to die. I loved my life,” writes this year’s co-Australian of the Year in his new memoir Brainstorm. Just three weeks before the seizure, he represented Australia at the World Triathlon Multisport Championships in Ibiza. Now the certainties have been ripped away. Now his life was measured in months and weeks. Since that Saturday morning in Krakow, he has been in uncharted waters.
Scolyer is remarkably optimistic for a man who did not expect to be alive when his book came out last month. But he is. “And kick.” If it is somewhat cautious. When you’re trying to revolutionize brain cancer treatment with a one-man clinical trial, you can’t take anything for granted.
There is a notable absence of gravitas and ego in Scolyer. He looks humble, vulnerable. He has a way of making it feel like this conversation is the most important thing he has to do today. Which it certainly isn’t.
Scolyer is the most published melanoma pathologist in the world, sending thousands of the most difficult cases every year. Shortly after his own diagnosis, he decided to go public with his diagnosis as a way to keep friends and colleagues informed, but mainly as a reminder for his three children. The news was greeted with a flood of messages. And now we all know what the inside of his skull looks like because his brain scans are on his social media.
For years before his brain tumor dropped him on his Polish hotel room floor, Scolyer’s associate medical director at the Melanoma Institute Australia, Georgina Long (and fellow Australian of the Year), led trials of a new class of immunotherapy drugs that had spectacular results on patients with melanoma. “Basically what it does is stimulate your body’s own immune system to recognize cancer cells and kill them,” explains Scolyer. They learned that the drugs are more effective if given before the tumor is removed. In 15 years, the five-year survival rate for advanced melanoma went from 5% to 55%.
But while advances have been made in melanoma survival rates, the treatment for Scolyer’s aggressive glioblastoma hasn’t changed in 20 years.
“Basically, this type of tumor spreads like tree roots running through your brain. If you look down in a microscope you can’t see where it ends,” says Scolyer. “So you can never cure it with surgery or radiation therapy. If you tried to cut out the entire tumor, you wouldn’t have much brain left.”
Therapy has usually focused on prolonging life with chemotherapy and radiation to palliative care and death.
From the moment she received the MRI scans from Poland, Long was in action, consulting with the Melanoma Institute’s world-leading experts and those around the world. Long pioneered the successful use of immunotherapy for melanoma patients whose cancer had spread to the brain.
She and the team developed a plan for a radical treatment for her friend and colleague of 20 years. They would take what they learned from immunotherapy and apply it to his cancer. It had never been tried anywhere before, was seriously risky and the stakes couldn’t be higher – there was a 60% chance the side effects could kill him. If it caused massive swelling in the brain, it could kill him within days.
They estimated there could be a 5% chance of saving his life; it may be less than 1%. For Scolyer, “it seemed worth giving it a crack”.
Hoping that the tumor does not get bigger, he will delay the operation as long as possible to give the drugs a chance to work. He would receive a combination of three immunotherapy drugs intravenously. Fifteen days after the seizure, the first four-hour infusion began at the Mater Hospital in Sydney. The second dose was delayed due to side effects including high temperatures, a rash and high enzymes in his liver. “I had a lot [infusions] really close every two weeks at the beginning.”
Through it all, he kept running and cycling.
Twenty-eight days after Krakow, craniotomy neurosurgeon Brindha Shivalingam removed pieces of the tumor in a six-hour operation. She later admitted it was emotional for her to operate to a friend. She was careful not to “take the Richard out of Richard”.
Pathological results showed that his immune cells were activated and hopefully attacking the tumor cells. “It was a phenomenal result,” says Scolyer. A possible new frontier for brain cancer.
to newsletter promotion
WWorking on the book, written by journalist Garry Maddox, was “more joyous than I expected”, he says. His was a quintessentially Australian childhood, if unremarkable, in Launceston. Sports, camping, outdoors.
What is clear in the book is what an emotional journey the past 18 months have been for Scolyer.
“Facing emotional issues turned out to be the hardest part of cancer. Everyone around you is suffering.”
He still cries a lot. He cried on television. There were setbacks, side effects and “shame” waiting for the results of scans. No one, he says, who has not experienced the shock and grief of saying goodbye to oneself, can hope to understand. “It drills deep into your core and touches almost every minute of your day,” he explains.
The experience led to a re-evaluation of his past life and priorities. Driven, ambitious, overworked, he struggled through life, traveling overseas 10 to 12 times a year to speak at conferences. “You get caught up in everyday life and you don’t necessarily think about the big things. It has changed.”
Now he knows love is what really matters: “The one thing that has really turned around is spending time with my family and appreciating them. It made me prioritize my family.”
He received praise and attention. But he says he would give it all back in a heartbeat to have his old life back.
It is too early to say whether his world-first treatment is a success.
Every cell in his body is studied. “Ultimately, you have to do clinical trials to prove whether something works or not. We won’t know for sure until a trial is done. The great thing, though, is that we can generate some science by comparing my brain before the immunotherapy and after. This gives scientific hope that it is worth investigating.”
After nine infusions of the vaccine, with one more due next month, Long made a decision to stop the immunotherapy. At the time of writing, there was no sign of a recurrence. But that doesn’t mean there won’t be. “It’s just wait and see and see if there’s a repeat. We’ll get it right if and when it happens.”
For the moment, though, “I feel very elated that this is the path we’ve gone down.”
