The scientist who tested his revolutionary drug on his own brain cancer: ‘It seemed worth making a tear in it’

Richard Scolyer was fully occupied with life when he was suddenly given the death penalty. A more vibrant person would be hard to find. As an endurance athlete who competed all over the world, he was in top physical condition. As one of the world’s leading pathologists in the field of melanoma, whose groundbreaking research saved thousands of lives, he was in demand. At the age of 56, Prof. Richard Scolyer flew along. According to him, his life was ‘rich’. And then, on the morning of May 20, 2023, he lost consciousness and fell convulsing to the floor in a hotel room in Poland, panicking and scared.

After this grand mal attack, he went to the University Hospital in Krakow for an MRI scan. A mass was found in his temporal lobe. Scolyer knew immediately that it had brought very bad news.

After diagnosing cancer in other people many times, he knew exactly what the finding could mean. Probably brain cancer. He knew the outcome of a high-grade glioma was “shockingly poor.” That a brain tumor is incurable, and that he would have a “horrific last few months”. He fell into black despair; devastated, scared, terrified. He cried and cried, crying as he called his children.

A biopsy operation performed in Sydney twelve days later would confirm the “worst of the worst”. It was an aggressive IDH wild-type glioblastoma grade 4 – 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 had represented Australia at the World Triathlon Multisport Championships in Ibiza. Now the certainties had been removed. Now his life was measured in months and weeks. Since that Saturday morning in Krakow, he has found himself in uncharted waters.

Scolyer is remarkably optimistic for a man who didn’t expect to be alive when his book came out last month. But he is. “And kicking.” If at all cautiously. When you’re trying to revolutionize brain cancer treatment with a one-man study, you can’t take anything for granted.

There is a notable absence of gravity and ego in Scolyer. He seems humble and 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, referring thousands of the most difficult cases every year. Shortly after his own diagnosis, he decided to make his diagnosis public as a way to keep friends and colleagues informed, but especially as a reminder to his three children. The news was greeted with an avalanche 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 laid him low on the floor of his Polish hotel room, Scolyer’s co-medical director of the Melanoma Institute Australia, Georgina Long (and his fellow Australian of the Year), had led trials of a new class of immunotherapy drugs that had achieved spectacular results in patients with melanoma. “What it basically does is stimulate your body’s own immune system to recognize cancer cells and kill them,” Scolyer explains. They had learned that the drugs were more effective if given before the tumor was removed. In fifteen years, the five-year survival rate for advanced melanoma had increased from 5% to 55%.

But while advances had been made in melanoma survival rates, the treatment for Scolyer’s aggressive glioblastoma had not changed in two decades.

“Basically, this type of tumor spreads like tree roots running through your brain. If you look through a microscope you can’t see where it ends,” says Scolyer. “So you can never cure it with surgery or radiation. If you tried to cut out the entire tumor, you wouldn’t have much brain left.”

Therapy was usually aimed at prolonging life with chemotherapy and radiation to palliative care and death.

From the moment she received the MRI scans from Poland, Long had sprung into action, consulting with leading experts at the Melanoma Institute and people around the world. Long pioneered the successful use of immunotherapy for melanoma patients whose cancer had spread to the brain.

She and the team had been developing a plan for a radical treatment for her friend and colleague for twenty years. They would take what they learned from the immunotherapy and apply it to his cancer. It had never been tried before, it was seriously risky and the stakes couldn’t be higher – there was a 60% chance that the side effects could kill him. If it causes extensive swelling in the brain, it could be fatal within days.

They estimated there would be a 5% chance of saving his life; it may be less than 1%. For Scolyer, “it seemed worth giving it a try.”

Hoping the tumor wouldn’t get bigger, he would delay the debulking surgery 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 attack, the first four-hour infusion began at Sydney’s Mater Hospital. The second dose was delayed due to side effects, including high temperatures, rashes and high enzymes in his liver. “In the beginning, I was getting a lot of (infusions) very close together every two weeks.”

Despite everything, he continued to run and cycle.

Twenty-eight days after Krakow, craniotomy neurosurgeon Brindha Shivalingam removed pieces of the tumor during a six-hour operation. She later admitted that it had been emotional before a friend’s surgery. She was careful not to “take the Richard out of Richard.”

Pathology 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.

WWorking on the book, written by journalist Garry Maddox, was “more joyful than I expected,” he says. He had a typical Australian childhood, albeit an unremarkable one, in Launceston. Sports, camping, outdoors.

What becomes clear in the book is what an emotional journey the past eighteen months have been for Scolyer.

“Facing emotional issues has proven to be the most difficult part of having cancer. Everyone around you is affected by it.”

He still cries a lot. He cried on television. There have been setbacks, side effects and “scarcity” in waiting for scan results. No one, he says, who has not experienced the shock and sorrow of parting with oneself can hope to understand it. “It goes deep into your core and affects almost every minute of your day,” he explains.

The experience led to a reevaluation of his past life and priorities. Driven, ambitious, over-working, he raced through life, traveling abroad ten to twelve times a year to speak at conferences. “You get caught up in everyday life and you don’t necessarily think about the big things. That has changed.”

Now he knows that love is the most important thing: “The only thing that has really changed is spending time with my family and appreciating them. It made me prioritize my family.”

He has received accolades and attention. But he says he would give it all back in a heartbeat to get his old life back.

It is still too early to say whether his first treatment in the world 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 there’s a trial. The great thing, though, is that we can generate some science by comparing my brain before immunotherapy and after. It gives some scientific hope that this is worth investigating.”

After nine infusions of the vaccine, with one more to go next month, Long has decided to discontinue immunotherapy. At the time of writing there are no signs of recurrence. But that doesn’t mean it won’t be there. “We just have to wait and see if there is a repeat. We will take care of that if and when it happens.”

But right now, “I’m really happy that this is the path we’re on.”