Australia’s 2024 joint Australian of the Year Professor Richard Scolyer has revealed the brain cancer he has been fighting with a novel immunotherapy treatment has grown back, and he is facing the final months of his life.
“Unfortunately, there is a larger volume of quickly growing brain cancer … in my left brain. The prognosis is poor,” the world-renowned cancer pathologist wrote on Instagram. “Whilst some of my recurrent tumour was removed last week, some of it couldn’t be because of its site.”
“It’s not unexpected, but it’s still devastating.”
Professor Richard Scolyer
After being diagnosed with “the worst type” of glioblastoma in 2023, Professor Scolyer and his medical team embarked upon a course of treatment that had never before been tried for brain cancer. He received neoadjuvant triple doses of immunotherapy and lived beyond what he had predicted when he received his diagnosis. However, a recent scan showed changes in his brain, and surgery revealed the worst.
“The prognosis is not good for something like this,” Prof Scolyer told the Sydney Morning Herald. “It’s in months, not years … It’s not unexpected, but it’s still devastating.”
Despite the bad news, Professor Scolyer said he was proud of the data the experimental treatment produced. It has been published in the prestigious journal Nature Medicine, and he hopes it will “make a difference for others.”
“I greatly appreciate the support of all my family, friends and colleagues who have been looking after me so well and the incredible research that has been performed,” Prof Scolyer said. “I hope the latter will change the field and patient outcomes in the not-too-distant future.”
Last year, The Weekly spoke with Professor Scolyer and his wife Katie Nicoll about Richard’s brain cancer treatment moonshot. This story appeared in the December 2024 issue of The Australian Women’s Weekly.
A remarkable mind
In the autumn of 2023, one of the world’s most renowned cancer pathologists, Professor Richard Scolyer, wrote a grim prognosis for a glioma, which is a lethal form of brain cancer: “Fourteen months – the outer limit of median survival of 12 to 14 months.” And then he added the date that he expected the patient might survive until: “July 2024”.
Richard’s specialty is skin cancer, in particular melanoma. His work pioneering immunotherapy has saved thousands of lives and changed the trajectory of the deadly disease. As co-medical director of the Melanoma Institute Australia, he saw roughly 2000 cancers a year, and he also diagnosed many cases of brain cancer earlier in his career while working at Sydney’s Royal Prince Alfred Hospital. However, the case he was contemplating in 2023 felt graver than anything he had confronted before because this time, he was the patient.
“It’s heartbreaking to have your life turned upside down,” Richard says.
“It was scary as well,” adds his wife, Dr Katie Nicoll. “It was just a big unknown. From the moment he had the seizure, life changed, and it doesn’t really go back.”
A shock diagnosis
This schism in Richard’s life happened in May 2023 when he was in Poland’s pristine Tatra Mountains with Katie. Richard awoke on a Saturday morning feeling a kind of nausea he’d never felt before. As he lay shivering on the hotel room floor, he was seized by an overwhelming sense that he was going to die. Then he had a seizure.
Richard was rushed to hospital for blood tests, an ECG and a CT scan. He soon found himself staring through the venetian blinds of an austere hospital room in Krakow, feeling lonely and low, and flooded with a deep sense of foreboding. The formal diagnosis, when it came, could not have been worse. Katie said it was like being handed an unexploded grenade. Richard had an aggressive Grade-IV IDH-wildtype glioblastoma. It was an incurable brain tumour for which the treatment protocol hadn’t changed in 20 years. He was terrified, and his whole family was plunged into fear.
“A diagnosis or an event like this, it just throws you into uncertainty, and that’s probably what we’re all struggling with,” Katie says, looking at her husband with affection.
Yet luck, as the saying goes, is when hard work meets opportunity. Amidst the devastating diagnosis, Richard and his close friend and co-medical director at the Melanoma Institute, Georgina Long, sensed a glimmer of something that looked like hope. They had a lifetime of cancer knowledge and a willingness to apply what they had learnt about melanoma to Richard’s brain cancer.
A daring proposal
They began a form of treatment that was untried on the type of cancer Richard had been diagnosed with. He would receive three immunotherapy drugs before surgery to remove the tumour, which would be delayed as long as possible to give the medication time to work.
“This is completely different to what people had tried before,” says Richard. “There was a lot of nervousness about going down this path, on all fronts. It’s unknown what might happen. You might die sooner. You might be left with side effects that, even if you stay alive for the same amount of time, would make your life not so good. There’s a chance you might live longer. [A] minuscule chance you might be cured.”
In August 2024, one month past Richard’s best-case scenario prognosis, he and Katie welcome The Weekly into their home to speak about their extraordinary year.
“People keep saying to me, ‘You’re so courageous, doing what you’re doing. ’ It honestly doesn’t feel like that to me,” says Richard, who is warm and affable. “It just feels like a no-brainer. This is what we know. It feels like the right thing to do.”
Richard’s tumour has shown no sign of recurrence [at the time of publication in December 2024]. That statement comes with some very large caveats, but the professor is feeling thankful, and the mood around the family table is buoyant. In a few hours, Richard will fly to Townsville to represent Australia in the Triathlon Multisport World Championships with his son, Matt, and daughter, Emily.
Sport has always been a huge part of Richard’s life, and when he talks about his love of triathlons, it’s the camaraderie he focuses on. Although he doesn’t deny that he also has a competitive streak.
A mission to fight cancer
Richard was in Year 10 when he decided he would become a doctor. Born in Launceston in 1966, his childhood was disrupted when his mother suffered a series of strokes, but his memories are mostly happy. His competitive streak and determined nature presented themselves early on when he worked hard to be as good as his big brother, Mark, at footy. His intelligence and leadership skills came to the fore at school. When he started working in pathology, he discovered just how driven he was.
It was not, Richard says, about wanting a successful career. “I wanted patients to get the right diagnosis so they could get the best treatment and return to being healthy again.”
He took a job in Canberra and would make the three-hour drive to Sydney most Wednesday afternoons to attend a session called “too hards” at the University of Sydney, followed by a lecture at Royal Prince Alfred. Pathologists would bring in cases that stumped them. These lectures lit a fire under Richard.
“I loved recognising things that were really rare,” he says. “Tumours that might affect children … I pushed myself pretty hard.”
Life-saving research
When Richard moved to Sydney, he took over the coordination of the “too hards” and turned them into a Saturday session. He also joined a touch football competition. It was there that he met Katie. She was intelligent and had an “excellent sense of humour”. Richard noticed that she would go out of her way to help others. Soon, Richard and Katie knew they wanted to be together and raise a family. They now have three children: Emily, Matt and Lucy.
“I’m very proud of them. They’re wonderful kids,” Richard says. “Emily was at uni when we were in Poland, and [the tumour] came to light. She came straight back to Sydney to help look after her younger brother who was in Year 12. Her sister was in year 10.” The instinct to put others first runs in the family.
“I’m very proud of them. They’re wonderful kids.”
Richard Scolyer.
“Kate’s been very humble,” Richard adds. His work “puts a lot of responsibility and difficulty on Katie to work part time and manage the three young kids that we have. So, Katie’s very generous in supporting me to develop my career.”
“I think it is important,” Katie says. “If you’ve got a skill to share with others, that’s worthwhile.” He’s “passing the baton” to other doctors.
All of Richard’s study and research was building to the success he and Georgina led at the Melanoma Institute. Fifteen years ago, the five-year survival rate for advanced melanoma was 5 per cent. Today, it is more than 50 per cent.
“The big breakthrough that has happened is in immunotherapy,” he says, which is “basically stimulating your body’s own immune system to be able to recognise a tumour and kill it off … Georgina and I are the heads of the institute, so we get a lot of recognition, but we couldn’t do it on our own … In this day and age, you can’t really make a difference unless you’ve got an incredible team of people who have different skill sets.”
Brain cancer moonshot
Cancer researchers the world over have taken what was learnt in skin cancer immunology and applied it to other diseases, including some rare types of breast cancer, renal cell cancer, lung cancer, and bladder cancer. However, brain cancer – in particular, glioblastoma – is different.
“This type of brain cancer that I’ve got, it spreads like tentacles through your brain, and you can’t see it on radiology,” Richard says. “The surgeon can’t see it when they cut it out. They can’t cut it all out. There’s always tumour left. It always comes back. That’s why patients always die from it.”
Yet, Richard is trying to beat the odds. And if he wins, he says, there will be more than a little luck involved. He believes he was lucky that Katie, also a doctor, was with him in Poland; he might never have made it out of the hotel room otherwise. Richard was lucky his colleagues were advocating for him, and he didn’t get stuck in Europe. He was lucky he didn’t need steroids and so was able to undergo the treatment Georgina devised.
“This idea, for this sub-type of brain cancer, of trying to stimulate the body’s immune system to recognise the tumour cells but leave your normal brain cells alone was very appealing,” Richard explains. “It seemed worth a crack.” Katie supported Richard’s risky decision 100 per cent, understanding it was a “golden opportunity” for both her husband’s survival and to potentially advance treatment.
One day, if Georgina and Richard’s moonshot succeeds, future brain cancer patients may count themselves lucky that someone with Richard’s knowledge was forced to reckon with this disease.
Unbreakable spirit
In January this year, four days before he was due to travel to Canberra for the Australian of the Year Awards, Richard was cycling through Sydney’s inner west on a Saturday morning. He was running late but was eager to meet Matt for a five-kilometre run. Richard was going “flat chat” when he hit a bump.
“The handlebars twisted, and I went over the top. I landed on my head and my shoulders on the road. It really knocked me around,” he says. “I thought, ‘This is a bad crash’. Then after a while I thought, ‘Nah, stuff it, I’ll just go down and jog the park run’.”
When Richard finished the run, he could feel his face was swollen, and there was a divot in his cheek. Concerned, Matt asked if he was okay. Richard said he was fine, and they walked home.
Katie chimes in. “He’s just about to come through this doorway, and I hear him say to the kids, ‘Don’t tell Mum’. Even from the back, I can see there’s grazes, there’s blood. ‘Don’t tell me what?’”
At the hospital, the emergency staff asked Richard how fast he was travelling when he flipped and when he told them 40km per hour, they put a hard collar on him and took him for a CAT scan. The radiologist was a friend of Richard’s.
“She comes and sees me, and she goes: ‘Rich-ard’ [he mimics a gently chastising tone] – ‘You’ve fractured your vertebra. If it slips, that’s it. You’re going to be a paraplegic.’”
“You don’t like to give up.”
Katie Nicoll
The indomitable Richard Scolyer had just run five kilometres with a broken neck. “Luckily,” he explains, “It was a vertical fracture.” It was stable so he didn’t need an operation.
Richard is uncomfortable with the story. He tells it with good grace, and he and Katie laugh at the other occasions that he has pushed himself too hard. Richard says it is embarrassing but it illustrates something about him that sets him apart from other people.
“You don’t like to give up,” Katie says proudly. “Determined is what I’d say.” Then she whispers, smiling, “And stubborn.” Also, “he didn’t want to let Matt down. He wanted to do the run with him.”
A life of service
“I like to help people,” Richard admits. It’s a theme that comes through again and again in his book Brainstorm. Richard is a person who cannot rest when he knows it’s within his power to effect change.
“It parallels with you taking on the experimental treatment,” Katie says, explaining that Richard takes the attitude that, “even if I’m dead in three months, or even six months – even if this treatment causes me to die even earlier than the tumour might have – at least this process will have helped others.
“Even your professional career,” Katie continues. “It’s been to help others and not to make yourself a star … Whatever you can do to help the greater good is a worthwhile input of your drive and effort and determination.”
Four days after his crash, with grazes on his cheek, Richard and Georgina were named joint Australians of the Year. Their acceptance speech was emotional. They called for the courage to extend access to clinical trials in Australia and to “push treatment boundaries” backed by science.
Richard spoke candidly about being a terminal brain cancer patient. “I’m only 57. I don’t want to die,” he said. “I love my life, my family, my work; I have so much more to do and to give.”
Hope for a trial
Eight months after Richard and Georgina stood before the nation calling for greater access to clinical trials for cancer patients, researchers are inching closer to a new trial for glioblastoma patients. What Richard and Georgina have done has generated interest. “It’s like someone has switched on the light to show what’s possible,” says Katie.
“Ultimately, I’m one patient,” Richard says. “This could have just been luck. It could be nothing to do with the treatment I’ve had,” Richard says. “To actually prove something works, you have to do a clinical trial that compares patients and looks at their outcomes.”
He is nervous about providing a timeline for clinical trials. He doesn’t want to get people’s hopes up. What he will say is this: “A clinical trial is in the planning stages.”
However, the nefarious nature of the disease is that it will almost certainly return. Early in October, The Weekly catches up with Richard and Katie again, after Richard has undergone another scan. He’d experienced headaches before his appointment and felt more nervous than he had for any other scans. The results, happily, were “reassuringly stable”, Richard says.
There was a small change, but Richard’s specialists said it was most likely a “post-radiation change” rather than a sign of recurrence.
“Nothing major but something that they need to monitor a bit more closely,” he says.
The tough road ahead
There’s much to celebrate in Richard’s story, but his future remains unclear, and he can’t help but have down moments – particularly when he thinks about his kids.
“Who knows how things might pan out? But I guess the realities are that, most likely, I won’t be around to see them as they grow up and mature and their lives evolve as everyone’s does. At times, it’s a tough journey. At times, I’m sad and disappointed by various things. It’s hard on Katie. But to feel the support of people close to you and the wider community is really helpful.”
Richard says he would give anything to have his old life back. For now, he’s cherishing his loved ones and doing everything in his power to defy this disease and help find a cure.
“I guess that’s life, and you’ve got to make the most of it,” he says. “You don’t know what’s going to happen tomorrow. You could be diagnosed with cancer or you could be hit by a car. It could be all over …
“I feel blessed to have had such a prolonged period of time to be able to enjoy my life. It really rings true to me to make the most of every day. Do what you want to do. Make yourself happy and concentrate on the things you love. In the big scheme of things, I’m really lucky.”
This story originally appeared in the December 2024 edition of The Australian Women’s Weekly.
