Former Australian of the Year heads into brain surgery after devastating scan

It was the devastating scan result that Professor Richard Scolyer had been dreading.

Twenty-one months into treatment for a highly aggressive and incurable brain cancer, the former joint Australian of the Year learnt that there had been concerning changes in his brain.

“The natural history of this disease is that most people get a recurrence”: Professor Richard Scolyer at the Charles Perkins Centre, Sydney University.Credit: Flavio Brancaleone

While the changes could be related to radiotherapy he has received as part of a radical brain tumour treatment devised by fellow recipient Professor Georgina Long and a team of neuro-oncology experts, Scolyer, 58, knows the lethal tumour could be growing back.

The bulk of it was surgically removed after his diagnosis in May 2023.

“Obviously I’m worried it’s a recurrence,” Scolyer said from his office at the University of Sydney. “It’s not my area of expertise to interpret radiology or even manage this sort of disease long term, but I know the natural history of this disease is that most people get a recurrence.”

On Monday, he will have surgery at Chris O’Brien Lifehouse in Camperdown to explore the changes and, if it is recurrence, remove as much of the tumour as possible again without affecting brain function.

While there are still treatment options, the world-renowned pathologist and researcher knows that statistically he might have just three to six months left.

“I feel more accepting that it is incurable now than I did at the start,” he said. “I feel very fortunate that I’ve lived as long as I have, but whether that’s just luck or related to this previously untried treatment, no one knows.”

The positive news from Scolyer’s experimental treatment, which included three doses of immunotherapy 12 days before so-called debulking surgery, and a personalised cancer vaccine, is that research showed an increased abundance and variety of cancer-fighting immune cells in the cut-out tumour.

A peer-reviewed paper published in the international journal Nature Medicine revealed scientific insights that were encouraging enough to prompt planning for the first clinical trial of pre-surgery immunotherapy for glioblastoma patients.

The hope is that immunotherapy can revolutionise brain cancer treatment as it has done for melanoma and other cancers.

Long said she was able to “hand the baton” to scientists at Melbourne’s Brain Cancer Centre who would be involved in the trial.

Richard Scolyer explains melanoma treatment advances to King Charles at Melanoma Institute Australia last October.Credit: AP

After a seizure while lecturing in Poland, Scolyer was diagnosed with a “worst of the worst” type of glioblastoma.

By the time he had arrived back in Sydney, Long and her team had formulated an experimental treatment to treat his brain cancer based on what they had learnt from successfully pioneering immunotherapy for patients with advanced melanoma.

Scolyer jumped at the chance to try three immunotherapy drugs before surgery despite the risk that the treatment could kill him much quicker than was expected with conventional treatment. The median survival after this standard approach – surgery, radiotherapy and chemotherapy – is 12 months.

Since starting treatment, Scolyer has stayed remarkably positive.

A keen triathlete before his diagnosis, he has run and cycled regularly, raced in the Multisport World Championships in Townsville, co-authored more than 40 research papers – including the one on his own tumour – and, until recently, continued as co-medical director of Melanoma Institute Australia with Long.

Since being named joint Australian of the Year in January last year, they have gone to events around the country and met King Charles during his Australian visit to discuss their world-leading treatments for melanoma patients, including immunotherapy.

Scolyer said that meeting everyday Australians had been a highlight of the past year.

Professor Georgina Long and Professor Richard Scolyer with Prime Minister Anthony Albanese when they were announced as joint Australians of the Year in January 2024.Credit: Alex Ellinghausen

“I’m someone who’s dedicated much of their life to family and work-related issues, research and diagnosis in particular,” he said. “That means the [range of] people you interact with is fairly narrow. But I’ve met and learnt about so many incredible people and how they’re contributing in different ways to society.”

Scolyer has also appreciated spending more time than once seemed possible with wife Katie and children Emily, 20, Matt, 19, and Lucy, 17.

Throughout his treatment, he has documented the highs and lows for more than 130,000 followers on social media and on two episodes of the ABC’s Australian Story. Just before we spoke on Friday, he was stopped by four strangers in a coffee shop wishing him well for his treatment.

Scolyer has known all along that it was more likely his treatment would be of more benefit to future glioblastoma patients than for him. He expected at the start that he would not last 12 months.

Even so, Scolyer has struggled emotionally since the last scan result.

“I’m definitely down about it, but the opposite is that I feel very fortunate to have the life that I’ve led,” he said. “I’m not ready to go. I’ll keep fighting on.”

Brainstorm, by Richard Scolyer with Garry Maddox, was published by Allen & Unwin last November.

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