A Melanoma Expert's Battle with Brain Cancer – A High-Risk Move

Pathologist Richard Scolyer and oncologist Georgina Long are two prominent scientists known for their innovative work in cancer research. Although they were living in different parts of the world, both felt deeply concerned when confronted with a brain scan performed on Richard.

In a brain scan of Richard Scolyer, although Scolyer and Long are doctors who specialize in melanoma (a type of skin cancer) they recognized signs of a potentially life-threatening condition. This brain scan, seemingly unremarkable at first glance, offered their experienced eyes an important clue to an unexpected threat lurking in one corner of Prof. Scolyer's skull.

This marked the beginning of the difficult steps they would take together in research and treatment. The situation highlighted the challenges facing both scientists and the important responsibilities they would assume.

But these long-standing friends, both leading melanoma doctors, feared he was carrying a ticking time bomb in his brain.

On the MRI scan, there was an area of tissue in the upper-right corner of Prof. Scolyer's skull that looked lighter and more blurred than the rest.

“I'm not a radiologist, but… I knew it was a tumour,” he tells the BBC.

Neurosurgeons soon confirmed that it was not just any brain tumour, but a highly aggressive cancer called glioblastoma .

Devastated but determined, the pair set out to achieve the impossible: find a treatment that would save his life.

And, crazy as it might sound, the Australian researchers had done it before with melanoma.

“Accepting death just didn't feel right to me... 'An incurable cancer? Come on!'” says Prof. Scolyer.

Thirty years ago, when Prof. Scolyer and Prof. Long met as bright young doctors, advanced melanoma was effectively a death sentence.

But that was precisely what drew them in.

Australia has long had the world's highest rate of this skin cancer, and where many saw a daunting challenge, they saw potential.

“When I worked in the cancer ward, the most difficult patients were those with advanced melanoma. It was heartbreaking,” says Prof. Long.

“I wanted to make a difference.”

Today, we can say that the introduction in 2011 of immunotherapies completely changed the outlook for melanoma.

Over the past decade, the team's research into immunotherapy has dramatically improved outcomes for patients with advanced melanoma worldwide. Now half of patients are effectively cured, compared with fewer than 10% previously.

This breakthrough, or the 'penicillin moment' as Prof. Long calls it, is now being applied to many other cancers, saving more lives.

Their work has made the pair national treasures. Almost every Australian knows someone affected by their work, and this year they were jointly named Australians of the Year.

But while transforming melanoma treatment, they have also left their mark on each other.

They forged a friendship through the cases they could not solve, the highs of life-changing discoveries, their love of exercise, and lofty ambitions such as reaching zero melanoma deaths in Australia.

“We are very different, but at the same time very similar in how we roll up our sleeves and get things done,” says Prof. Long.

Prof. Long and Prof. Scolyer represented Australia at the 2019 World Triathlon Championships in Switzerland. With her eyes sparkling, the medical oncologist lists the qualities that make Prof. Scolyer an ideal colleague and friend: courageous, honest, cheerful and motivating.

“He is a delight,” she sums up.

So, after the devastating news following an epileptic seizure while on holiday in Poland last June that led to his brain tumour diagnosis, she spent that night in tears.

“I'm grieving… I thought my friend would die within 12 months.”

But then she spent the morning making plans – poring over textbooks, researching clinical trials and emailing colleagues around the world.

Glioblastomas, found in the brain's connective tissue, are highly aggressive, and the standard protocol for treating them – immediate surgical removal followed by radiotherapy and chemotherapy – has changed little over the past two decades.

Survival rates have remained similarly low. Only 5% of all patients live beyond five years.

Desperate, Prof. Long proposed treating Prof. Scolyer with a radical approach that had worked in melanoma but had never been tested in brain cancer.

Risk and Reward

In melanoma, Prof. Long and her team found that immunotherapy worked better when a combination of drugs was used and administered before the tumour was removed surgically.

It is explained as being like training a sniffer dog: you let the dog smell the fugitive – cancer cells in this analogy – so it can later hunt them down.

Prof. Scolyer jokes that it was 'sensible' to try the treatment.

But it carries major risks.

Some oncologists doubted whether the drugs would reach his brain at all and, even if they did, whether his immune system would respond.

And they worried that the experiment might kill him faster.

Glioblastoma, also known as GBM, grows so quickly that even a two-week delay in surgery can mean it is too late to operate. Immunotherapy drugs also have considerable side effects, especially when used in combination.

Her colleagues quietly feared that Prof. Long's emotional ties were clouding her judgement.

“'Let the neuro-oncology specialists do their jobs and be his friend,' they said,” she says.

“[But] he needs us… We have this deep knowledge; this is our duty.”

And so, under the care of Prof. Long and a team of specialists, Prof. Scolyer became the first brain cancer patient to receive combination immunotherapy before surgery.

He also became the first person to receive a vaccine tailored to his tumour markers, which enhances the drugs' ability to identify the cancer.

A Glimmer of Hope

Weeks after that first scan turned their lives upside down, Prof. Scolyer and Prof. Long looked at another test result.

It was an analysis of the tumour carefully removed from Prof. Scolyer's skull.

“I was amazed. In a millisecond,” she says.

“Clearly, the treatment given before surgery is doing something.”

Alongside traces of the drugs in the tumour – proving that the medication had reached his brain – there was a surge of immune cells showing signs of activation. This gave the team hope that they might, at that very moment, be attacking the cancer cells.

Glioblastoma recurs, on average, six months after surgery. But eight months later, after continued immunotherapy, Prof. Scolyer shows no signs of active cancer.

Last week, another scan came back clear, and Prof. Long says his brain is 'normalising'.

The results so far have generated considerable excitement.

Hopes are rising that this approach could extend Prof. Scolyer's life.

There is also optimism that the pair could be on the verge of a discovery that might help the three hundred thousand (300.000) people diagnosed with brain cancer worldwide each year.

Research of this kind usually takes years – even decades – but what Prof. Scolyer and Prof. Long have achieved in just a few months has already attracted pharmaceutical companies' interest and prompted discussions about clinical trials.

The doctor whose name is given to the current protocol for treating glioblastoma says Prof. Scolyer's prognosis is 'grim' and that it is still far too early to say whether this treatment is working.

“Promising is a difficult word… Encouraging is what I would call it,” he tells the BBC from Chicago.

“It is not a revolution, but it is still a step forward.”

He wants to see Prof. Scolyer reach 12 months, or even 18 months, without his cancer recurring.

But Dr. Stupp is 'absolutely' certain that immunotherapy could change the treatment of brain cancer.

“We need to step outside our comfort zones and look at what works in other types of tumour,” he says.

Prof. Scolyer and Prof. Long are also trying not to get carried away with excitement.

The best-case scenario is that Prof. Scolyer is cured, but they describe the likelihood of this as 'very small'.

“A miracle could happen,” says Prof. Scolyer.

As for the worst-case scenario, he tells the BBC that he has already beaten it: “I would have died by now.”

Instead, in December he celebrated his 57th birthday and spent another Christmas with his family – his wife Katie and their teenage children Emily, Matthew and Lucy.

Prof. Scolyer wants to live long enough to see his children become 'truly independent'. But alongside his gratitude for every extra milestone and every clear scan comes the fear that it could be the last.

“It is hard,” says Prof. Long about treating her friend.

They have had conversations about death and funerals. “He is extraordinarily resilient,” she adds.

But sitting in his office – surrounded by pictures of his children, tasks scribbled on a whiteboard and shelves filled with framed awards – Prof. Scolyer breaks down in tears.

For all his outward positivity, he admits that he is frightened and feels a sadness that reaches deep into his soul.

“I love my family. I love my wife… I love my work,” he says with a pained smile.

“I'm angry. I'm devastated… I don't want to die.”

What comforts him, however, is the thought that this research might give his diagnosis meaning and purpose.

“I know that the data we are generating is changing the field, and if I die tomorrow, I will be very proud of that.”

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When the patient is also a physician working in cancer care, the initiatives taken during treatment and the decision-making process can take on a different dimension. This arises both from their in-depth knowledge of treatment methods and from the unique perspective their professional experience gives them in confronting their illness. Nevertheless, encouraging results from a single case must be supported and confirmed by large-scale clinical studies.