Professor Richard Scolyer's Incredible, Inspiring Journey

Professor Richard Scolyer’s incredible, inspiring journey

The recently crowned Australian of the Year reveals how he became test case no. 1 in the fight against brain cancer and why he believes we all owe it to ourselves to try and make a difference in life.

PROFESSOR RICHARD SCOLYER knew something was wrong the moment he woke up. It was May last year and Scolyer was in Poland with his wife, Katie, for a conference organised by a friend and colleague from Harvard Medical School. The day before, after the conference had wrapped, Scolyer, his wife, his friend and his wife had gone hiking near the Polish/Slovakian border. “We climbed some mountains and got some incredible views,” says Scolyer, 57, who’s speaking to me today from his office at the University of Sydney.

“The next day I woke up not feeling very well. I felt sick. I just didn’t feel my normal self and I had a couple of episodes, which we call pre-seizure activity and then I had a major seizure.” Fortunately, Katie was there to organise an ambulance and take Scolyer to hospital. “If I had been in my hotel room on my own when this has happened, who knows? I could have passed away during that time,” says Scolyer, a keen triathlete who only a couple of weeks before had represented Australia at the World Multisport Championships in Spain. “So I must’ve been functioning alright,” he laughs.

Scolyer was transferred to Krakow University Hospital, where an investigation began to try and uncover the cause of the seizures. An MRI revealed a mass on his left temporal lobe. The doctors immediately recognised it was most likely a tumour, though there was a small chance it could be an infection called HSV encephalitis. “But we all knew that was very unlikely,” says Scolyer.

He was put on a course of treatment for herpes simplex encephalitis, essentially to cover all bases, then was able to fly back to Sydney. His colleague from the Melanoma Institute of Australia and co-Australian of the Year recipient, Professor Georgina Long, picked Scolyer and his wife up from the airport.

 

Long and Scolyer had worked together at the Melanoma Institute, pioneering the use of immunotherapy to treat melanoma, a breakthrough that’s helped save thousands of lives. Less than a decade ago, advanced melanoma was fatal—thanks to their efforts it has become a curable disease.

“What immunotherapy does is harness the body’s own immune system to be able to recognise and fight the tumour,” says Scolyer. “And for people with advanced melanoma that’s spread around the body, it’s gone from having no hope, to lots of hope. So now we’ve got five-year survival rates, that have gone from less than 5 per cent to 55 per cent and we think we’re curing most of those patients. If you look at the Australian survival rates, there’s this plateau, like it’s fallen off a cliff, that hasn’t been seen in any other cancer survival rate. It’s truly incredible.”

Scolyer was eventually diagnosed with incurable grade 4 brain cancer. His was a particularly pernicious form of the disease known as glioblastoma, “the worst of the worst subtype”, which carries a survival rate of 14 months. Scolyer can’t remember exactly when, but at some point Long made a radical suggestion. What if they used immunotherapy to fight Scolyer’s cancer?

“It took me one second to say, ‘Let’s go down this route’,” says Scolyer. “It was a no-brainer to me to do it. We know this field so well in melanoma. There was no choice for me.”

Scolyer’s reasoning was that while undergoing an experimental treatment carried a risk of shortening his life, brain cancer treatment hadn’t really changed in nearly 20 years. The standard procedure for treating brain tumours is to have local therapy before surgery, followed by radiotherapy, then a type of chemotherapy called temozolomide, Scolyer says.  The problem is the treatment method isn’t overly effective against glioblastoma. “This cancer sneaks off with tentacles everywhere,” says Scolyer. “You can’t pick it up on X-rays, so you can’t cut it all out.” The hope was that by harnessing the body’s own immune response, immunotherapy would be able to recognise the tumour cells and fight them while leaving his healthy brain cells alone.

“It didn’t sit right with me when we’d made such differences in melanoma in a short period of time,” he says. “Why not give it a crack and see if we could make a difference in brain cancer?”

The medical team who would treat Scolyer required some persuading before they were on board. Fortunately, the neurosurgeon, Dr Brindha Shivalingam, who Scolyer and Long had worked with in melanoma neurosurgery, also specialised in treating glioblastoma.

“We raised this possibility [to Dr Shivalingam] of giving immunotherapy before surgery because we’ve proven in melanoma that it’s more effective if you give it early on,” says Scolyer.

With a neuro-oncologist and radiation oncologist also on board, the next issue was timing. “In melanoma, we know if you wait for six weeks between when you give the immunotherapy, to when you cut the tumour out, that’s when we see great effect,” says Scolyer. But Shivalingam was concerned. “She said, ‘Look, if we wait six weeks, we know 30 per cent of these sort of brain cancers just take off and you’ll never be able to have surgery and you’ll die very quickly’.”

Scolyer, Long and Shivalingam decided he would undergo immunotherapy treatment for two weeks—in the end it was 16 days between biopsy and the ‘debulking’ of the tumour. After Scolyer’s second round of surgery the team were able to compare the tumour specimen before and after the immunotherapy. What they saw astounded them.

 

“We saw incredible things that we weren’t expecting,” says Scolyer. “We showed a tenfold increase in the number of immune cells—the types of immune cells that become activated to become cells that would fight against the tumour. And we were also able to show that one of the drugs we tested for had crossed over into the tumour and was attached to the immune cells.” This, too, was a surprise. “People had said to us, ‘This drug doesn’t cross the blood brain barrier. It won’t get in there to have an effect’. We knew that wasn’t true because we’d already used these drugs in melanoma and proven that it does.”

Since then, Scolyer has had 11 does of immunotherapy and while he’s hopeful the treatment will be effective in prolonging his life, he warns it’s too early to assess its long-term viability as a treatment option. “This has never been done before in brain cancer,” he says. “So it’s exciting, the data that we’ve created. Whether it actually makes a difference for individual patients, we don’t know that. Whatever happens to me is not going to be the answer to that question.” A clinical trial is required to prove efficacy, Scolyer adds, something that is on the horizon. “We’re excited about that and the opportunity to change therapies that haven’t changed in 19 years,” he says.

How does Scolyer cope with living with what is still a terminal diagnosis? “To be honest, it’s tough,” he says. “But when a treatment hasn’t changed in almost 20 years, it doesn’t sit right for me. At times I go up and down with how I feel about it and the impact that it’s had, not just on me, but on my family, particularly my wife Katie. It’s definitely a tough journey.”

But Scolyer is determined to remain hopeful and will not be going quietly. “We’ve got to try and not just accept it but you’ve really got to try and make a difference, whatever happens to you in life, not just people with cancer. You’ve got to seek out opportunities to contribute, to participate, to action change. And I think my message is, think big, be bold, be courageous, and see if you can make a difference.”

To truly achieve that you need to harness the power of teamwork, Scolyer adds. “Our team in melanoma is what has made a difference,” he says. “It’s not just Georgina and I. This is how we grow as individuals and as a community, by working together with a great bunch of people. And I think that’s an important message, not just for us in medicine or cancer treatment. It’s something for the whole nation. We grow more by working together in teams and we shouldn’t let fear hold us back from having a crack.”

How to prevent skin cancer

Reject the tan

“Aussie men want to look good down the beach and this bronzed Aussie culture is out there and ultimately, is killing us,” says Scolyer. “So, we’ve got to change that culture. There’s nothing healthy about a tan. A tan is skin cells in trauma from overexposure to ultraviolet radiation. We’ve got to call on advertisers, social-media influencers, to take immediate action, stop the glamorisation of tanning, rethink your campaigns and the content. And when you see it, call it out and demand it change.”

Wear a hat

“Blokes tend to have less hair than women,” Scolyer points out. “They have their hair short and I think about 40 per cent of blokes become bald. You’ve got to wear a hat every time you go out in the sun during the day when ultraviolet or radiation is highest.”

 Be obsessive about skin protection

“There parts of your body that are always exposed to the sun—your face, your neck, your arms, they’re always going to be exposed. We’ve just got to be obsessed with protecting our skin. You can see it in people who’ve been out in the sun over a long period of time, to ones who haven’t done that, and it’s like chalk and cheese if they’re the same age. And even Australians, when you go overseas, you can see the difference [in our skin].”

Related:

6 common misconceptions about skin cancer

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Ben Jhoty

By Ben Jhoty

Ben Jhoty, Men’s Health’s Head of Content, attempts to honour the brand’s health-conscious, aspirational ethos on weekdays while living marginally larger on weekends. A new father, when he’s not rocking an infant to sleep, he tries to get to the gym, shoot hoops and binge on streaming shows.

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