Former Australian of the Year down to ‘months, not years’ after brain tumour returns

Former Australian of the Year Professor Richard Scolyer, who has been going through experimental treatment for a highly aggressive and incurable brain tumour, has learnt that it has grown back after being partially cut out and that he is probably down to his last few months.

“The prognosis is not good for something like this”: Professor Richard Scolyer at home on Monday. Credit: James Brickwood

Shortly after being diagnosed with “the worst of the worst” type of glioblastoma, the world-renowned pathologist and researcher had surgery to remove most of the tumour in June 2023. He had more surgery last week to explore concerning changes to his brain that had been detected on a scan.

Recovering at home with a long scar on the left side of his head, Scolyer said the surgery revealed “quite a big mass” of regrown tumour. While part of it was cut out, the rest had infiltrated critical parts of the brain so could not be removed.

“The prognosis is not good for something like this,” he said. “It’s in months, not years ... It’s not unexpected, but it’s still devastating.”

While Scolyer’s medical team will consider further treatment, including chemotherapy, he has been referred to a palliative care team.

“I’ve been blown away by the amount of care, love and respect from people reaching out and saying kind things”: Richard Scolyer at Chris O’Brien Lifehouse in Sydney where he had brain surgery last week.Credit:

“I hope I’ve got longer than a few months so I can enjoy life,” he said. “You’ve got to play with whatever you’re dealt, [but] I’m definitely scared about what’s next and the timeframe over which it’s going to happen – how my brain and functional ability deteriorates.”

During a long, emotional conversation at the family dinner table in Sydney’s inner west, wife Katie watching on, Scolyer, 58, was composed and largely accepting of the prognosis.

He appreciated having survived for 21 months when 75 per cent of people aged over 50 with the same type of glioblastoma die within 12 months. That has given him more time than expected to spend with Katie and their children – Emily, 20, Matt, 19, and Lucy, 17 – and enjoy his time as joint Australian of the Year with Professor Georgina Long.

But it is a cruel prognosis for a brilliant doctor who has helped save thousands of lives in his former role as co-medical director of Melanoma Institute Australia and then, when diagnosed with glioblastoma, opted for a risky experimental treatment in the hope it would save the lives of future brain cancer patients.

“Of course, it’s cruel,” he said. “But everyone has ups and downs in their lives ... Looking down the barrel of not being here much longer, I’ve loved the life I’ve lived. I’ve got a wonderful family, and the work contributions are something that I’m very proud of.

Professor Richard Scolyer is recovering at home with a long scar on the left side of his head.Credit: James Brickwood

“So make the most of your time. You never know what’s around the corner.”

Encouraging scientific findings from his treatment, reported in the international journal Nature Medicine, have prompted planning for a world-first clinical trial of pre-surgery immunotherapy for glioblastoma patients. The hope is that it can revolutionise brain cancer treatment in the way that it has for advanced melanoma.

Scolyer said he started to feel worrying symptoms around the time he and Long welcomed former AFL player, coach and MND campaigner Neale Daniher as the new Australian of the Year in January, and his struggles with language, names and headaches had increased since.

His medical team had hoped the changes to his brain were the result of the radical treatment he had gone through, which included immunotherapy 12 days before so-called debulking surgery, radiotherapy, more immunotherapy and a personalised cancer vaccine.

Five days after brain surgery, Richard Scolyer and wife Katie walked their local ParkRun in Sydney’s inner west last Saturday.Credit:

News of the recurrence will be upsetting for tens of thousands of people, including other cancer patients, who have followed Scolyer’s regular posts about his condition on social media.

“I’ve been blown away by the amount of care, love and respect from people reaching out and saying kind things,” he said.

What would he like to do with the time he has left?

“Hang out with my family and friends,” he said. “Having more difficulty speaking and making little mistakes is not a big deal yet, but it’s likely it’ll get worse so [eventually] I’ll have trouble communicating.”

He had hoped to go to Launceston, where he grew up, for his father’s 90th birthday next month.

“I’ve got to find out whether it’s too risky flying on a plane with so much tumour left in my brain,” he said.

A keen triathlete even during treatment, Scolyer is still so fit and motivated that he walked his local five-kilometre Parkrun with his family last Saturday – five days after brain surgery.

Hoping to reach 250 Parkruns, he clocked up his 236th.

“I don’t know whether I’ll get there or not,” he said. “That’s four months away.”

Garry Maddox and Richard Scolyer collaborated on the memoir Brainstorm, which was published by Allen & Unwin last November.