The video rolls and pathologist Richard Scolyer is on the screen again, smiling as usual, as he details his latest step in this most public of brain cancer battles.
Here he is, waiting to have a craniotomy to remove the bulk of the tumour. Here he is post-op, lucid and smiling. Here's his scar. This is his radiation mask. Now he's talking about a seizure; now he's finished a 12-kilometre run. Here he is, receiving another dose of immunotherapy.
At every major step in Scolyer's fight against "the worst of the worst" type of brain cancer, this world-leading melanoma pathologist is turning the camera on himself, documenting his therapy for social media followers around the globe to see.
There's a lot to take in. World-first medicine that, if everything in this monumental gamble comes off, could save him from "certain death" — and give hope and a new treatment regimen to others grappling with a terminal brain cancer diagnosis.
Scolyer, 56, knew the odds were not good when he was diagnosed with glioblastoma IDH wild-type. Dreadful, in fact. He might get six months to live, perhaps the median of 14 months.
He knew treatment had not changed in 18 years: remove as much of the tumour as possible, then radiation and chemotherapy. But an extra 18 months is about the best he could hope for.
"Bugger that," Scolyer tells Australian Story. "I'm not happy to accept that. I want to do something that gives me a fighting chance against this tumour to see if we can make a difference."
Scolyer has been here before, on the other side of the microscope. With medical oncologist Georgina Long, his friend and co-director of Melanoma Institute Australia, Scolyer was at the forefront of groundbreaking advances in melanoma treatment.
Fifteen years ago, patients with melanoma that had spread through the body had a less than 5 per cent five-year survival rate. The pioneering work by Long, Scolyer and the institute team to use immunotherapy in melanoma patients has increased that rate to 55 per cent, and recently seen Long and Scolyer named New South Wales's 2024 Australian of the Year.
Their biggest breakthrough was one of the world's first clinical trials in the use of combination immunotherapy before removing the melanoma. The results were phenomenal — some patients were cured.
Such an approach has never been tried in brain cancer before. Until Scolyer.
With Long leading his treatment, Scolyer is "patient zero", the first in the world to receive immunotherapy before removing a brain tumour. The risks were high — he could die sooner. Or he might stay alive, "but my life might be miserable".
Scolyer focused on the upside. "I might live longer," he says. "And there's a small chance that I could be even cured."
It was, as he likes to say, a no-brainer.
An unorthodox approach
Before Scolyer collapsed to the floor from a seizure in a Polish hotel room six months ago, he was renowned for his fitness. Triathlons, aquathons, half-marathons — he competed in them all, sometimes representing Australia in age-based events.
Quite often, Long was on the starting line with him. Just weeks before Scolyer's seizure, they'd lined up for an aquathon in Spain. They're as competitive on the course as they are collegiate in the laboratory, and good friends.
So when neurosurgeon Brindha Shivalingam reviewed the MRI scans of Scolyer's brain in the days after his seizure and judged it to be glioblastoma, the grief hit Long "like a knife through your heart".
Then she wiped the tears away and started making a plan. She'd take her 15 years of groundbreaking work to try to help her "humble, generous, smart, intelligent, amazing" friend. Some colleagues suggested Long take off her oncologist hat and concentrate on being his friend. Long said: "Stuff that."
"We've taken everything, absolutely every bit of knowledge … that we've pioneered in melanoma," she says, "and we've thrown it at Richard's tumour."
She gathered her team of medical researchers, consulted experts about the latest treatments, read relevant papers and trials. Then, the oncologist who Scolyer considers "the most experienced clinician in the world" at delivering immunotherapy decided on a novel approach.
She would devise a combination immunotherapy which, as with her seminal melanoma work, would be delivered before Scolyer had his tumour removed, as well as after.
He'd receive six weeks of radiotherapy after surgery but no chemotherapy. And she'd develop a vaccine personalised to combat his tumour, another area in which Long is a world leader.
Scolyer didn't need convincing. "I just gave him a whiff of the idea," says Long, "and he went, 'Yeah, I want this, yes,'" she recalls.
Says Scolyer: "It's not a hard decision to make when you're faced with certain death. I'm more than happy to be the guinea pig to do this."
Convincing the medical world took longer. Medicine and science have their processes. Trials and more trials of large numbers of patients are standard to ensure safety and efficacy.
But there were no medical trials that Scolyer was eligible for and due to the risks involved, he had to seek special dispensation to move forward.
Scolyer understood the risks more than almost anyone. He's been heavily involved in the use of immunotherapy. He's ranked the world's leading melanoma pathologist. His global awards are numerous, he's co-authored more than 800 peer-reviewed publications and regularly talks at global conferences. His expertise is sought to review the most difficult of melanoma cases from around the world. He's an expert member of the World Health Organization's "gold standard" textbooks on skin cancers.
His would be the informed choice of a scientist deeply familiar with what could go wrong. With the help of his pathologist wife Katie, he fired off letters to those who needed to approve the unorthodox approach.
"It seemed to be the circuit breaker that put people on board," says Scolyer. "They could see my passion and drive. This is what I want done. And they got on board."
But Scolyer wasn't just out to try to save himself. His hope is that, whatever his fate, the data collected from his treatment will "blow open" the field of brain cancer treatment.
His former boss, John Thompson, says he's already achieved that. "It's fair to say that what Richard's doing has advanced the treatment of glioblastoma generally in just a few months, by what would otherwise have taken 10 years, maybe more," he says.
Scolyer has done that, in part, by submitting himself to an array of additional tests. He's undergone several unpleasant lumbar punctures or "spinal taps", given so much blood he became anaemic (the intervals have been extended), and undergoes neurocognitive testing. Every biological sample and piece of data is collated and analysed, adding to the knowledge bank.
Plus, in the days after receiving his shock diagnosis, Scolyer opted to undergo an open biopsy — before the immunotherapy and surgery to remove the tumour.
Normally, a core biopsy is done using a needle. But the open biopsy, which involves cutting the skull open, allows for more tumour to be removed, giving people such as Long "enough tissue to do any research we want to do on it".
And Scolyer held his nerve and lived with an aggressive brain tumour while receiving immunotherapy for 12 days before Shivalingam operated. She was never going to be able to get all of it. A hallmark of glioblastoma is its microscope tentacles of cancer cells that branch off and cannot be removed without causing debilitating brain damage.
That's where pre-operation, or neoadjuvant, immunotherapy comes to the fore. Long uses a sniffer-dog analogy to explain the concept.
Sniffer dogs in search of a particular thing will ignore everything else. Giving immunotherapy before removing the tumour gives the therapy the "scent" of the cancer cells, enabling it to hunt down those that remain after surgery.
"We're teaching the immune system, the sniffer dogs, what the enemy is so that when we cut it out, that enemy remains an enemy for longer with the immune system stimulated," says Long.
The early results of Scolyer's treatment were exciting. The number of immune cells, or T-cells, had increased 10-fold, the drug therapy had bound to the immune cells within the tumour and the immune cells within the tumour were activated. "They're responding to an enemy of some kind," says Long. "And we're just hoping that enemy is the [tumour]."
All of this Scolyer has documented on social media. There are a range of reasons. To allow researchers and scientists around the world to follow the science, to leave a legacy. To bulk answer the hundreds of queries about how he's going. To give his three teenage children a record of his cancer journey.
His kids are getting a sense of the seriousness of his plight, he says, and the thought of leaving them and all he loves is painful. "I'm not ready to die yet. I love my life …all aspects of it," he says. "I love my wife. I love my three teenage children. I love my work. I love my colleagues. I love the contributions that our team has made that has changed medicine. And I love my personal life and the things I do, the friends I've got."
He admits, too, that in those early days of diagnosis, his social media posts might have been a quest for sympathy.
"I was devastated to be facing death when I wasn't ready for it," he says. "And I like the positive feedback that I'm receiving. That makes me feel a bit better."
His openness about this novel treatment has, understandably, made those dealing with a similar diagnosis wonder if they could undergo the same process. The answer is no. At least, not yet.
'What a legacy'
About 10 days ago, Scolyer posted a video admitting to suffering a touch of "scanxiety". Cancer patients know it well: the anxiety that creeps in as the date for a milestone MRI or other diagnostic scan approaches.
Will the cancer be back?
A few days later, Scolyer posted again after receiving the results of his six-month scan. "Fabulous news: experts tell me my MRI scan stable or possibly even better than 2 months ago!"
It's incredibly encouraging but Scolyer and the team are careful to temper their excitement. "What we want," Long says, "is this in another few months, another two or three scans. If it stays like this, then we can really, really celebrate. But at least we can celebrate today."
Given the tumour and all the treatment, Scolyer says he feels fairly good; a bit of sleeplessness, some irritability and his energy levels are lower. His liver function test results have been slightly abnormal, which has meant some tweaks to the immunotherapy, and he received iron infusions for the anaemia.
But he continues to exercise and go to work when he can and was well enough to travel to Chicago recently, to receive a lifetime achievement award from the American Society of Dermatopathology.
His treatment continues: injections of the vaccine will be given in intervals over the next 12 months, as well as immunotherapy, depending on how his body copes.
And Long's data is building up. Pharmaceutical companies are watching developments closely. A large multi-disciplinary team meets regularly to discuss the scientific minutiae of every sample.
"We're trying to back everything up with science to show that, if it does happen to work, why it's working, or if it doesn't work, why does it not work? That's the important piece, the science. Because only then can we use this data to help other patients, meaning next step is clinical trial," Long says.
"I'm a melanoma cancer specialist. I'm trying very, very hard to set up the next clinical trial in glioblastoma."
Scolyer is proud to be able to help advance the field, even though it comes at a great personal toll. "I'm confident, to be honest, that it's going to make a difference for future brain cancer patients," he says. "And what a legacy to be able to leave, even if it doesn't cure me. It'll get us closer to getting cures for patients."
The day before Scolyer had his seizure and everything changed, he and Katie climbed the mountains of southern Poland and gazed out at bordering Slovakia. It was beautiful, he says.
He's climbing a much tougher mountain now, and while the weight is heavy, the hope is strong that improved brain cancer treatment is on the horizon. Nothing will match that vista.
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