Richard Scolyer and Georgina Long, on different sides of the globe, both felt devastated after looking at a scan.
Untrained eyes would have seen an innocent-looking brain in front of them.
However, these lifelong friends who are both highly regarded skin cancer specialists feared it was a ticking time bomb.
Within the upper right corner of Prof. Scolyer’s skull, there was a region that was cloudier and lighter than the surrounding material.
“I’m no expert in radiology, but… in my heart, I knew it was a tumor,” according to the BBC.
Before long, neurosurgeons were able to identify any brain tumor but “the worst of the worst” a subtype of glioblastoma so aggressive that the majority of patients only live a year or less.
Devastated but unflinching, he and Professor Long set out to accomplish the impossibly difficult task of discovering a cure for him.
It might sound absurd, but Australian researchers have successfully used melanoma in this manner in the past.
“It didn’t sit right with me… to just accept certain death without trying something,” Professor Scolyer states.
Is this cancer incurable? Alright, screw that!”
treasures of the nation
When Professor Long and Professor Scolyer first met as intelligent, young doctors thirty years ago, advanced melanoma was fatal.
However, it’s precisely what drew them to it.
Australia has historically had the highest rate of skin cancer worldwide, and while many saw the disease as an overwhelming challenge, others saw opportunity.
“The patients with advanced melanoma were the hardest for me to see back when I was doing the cancer block. It was devastating,” Professor Long remarks.
These days, it would be difficult to overstate their influence on the field.
The work of the Melanoma Institute, which they currently lead, has paved the way for anyone in the world to receive a melanoma diagnosis or treatment.
The work of their team on immunotherapy which attacks cancer cells with the body’s immune system has significantly improved the prognosis of advanced melanoma patients worldwide over the last ten years. Almost half have recovered, compared to less than 10% before.
Prof. Long refers to this discovery as the “penicillin moment” because it has led to the application of the breakthrough to numerous other cancers, saving even more lives.
Both have become national treasures as a result. Their work has affected almost every Australian, and this year they have all been named Australians of the Year together.
However, they were not only changing the field; they were also influencing one another.
Their shared frustration with cases they couldn’t solve, excitement over game-changing discoveries, love of fitness, and aspirational goal of Australia having zero melanoma deaths united them.
“We’re very different but very similar in that sort of… roll up your sleeves, get things done way,” Professor Long explains.
With bright eyes, the medical oncologist enumerates the attributes that make Prof. Scolyer an ideal friend and colleague: brave, honest, positive, and driven.
“It’s a pleasure,” she concludes.
She therefore cried all night after getting that fatal call from Poland in June of last year, when Prof. Scolyer was on vacation and a seizure led to his diagnosis.
“I’m in mourning… My friend is going to pass away in a year, I believe.”
However, she devoted the rest of the morning to planning, going through textbooks, looking up clinical trials, and sending emails to colleagues all over the world.
The standard treatment for glioblastomas, which are located in the connective tissue of the brain and are known to be extremely aggressive, has not altered much in the past 20 years and involves immediate excision followed by radiation and chemotherapy.
The survival rate has performed comparably. Only 5% of patients survive for five years or longer.
In a desperate attempt to save his career, Professor Long devised a drastic treatment plan for Professor Scolyer that was based on melanoma treatment that had never been tried on brain cancer.
Risk versus return
Prof. Long and her colleagues found that in melanoma, immunotherapy is more effective when prescribed in combination with other medications and given before any tumor-removal surgery.
She compares it to training a sniffer dog, saying you have to instill in it the scent of the illegal substance, in this case, cancer cells so that it can later locate them.
Prof. Scolyer quips that it was a “no-brainer” to try the treatment.
But there are a lot of risks involved.
Certain oncologists expressed doubts about the medications’ ability to enter his brain and whether his immune system would react if they did.
They also feared that the experiment might kill him more quickly.
According to them, many brain tumors grow so quickly that even a two-week wait for surgery could mean it’s too late. The combination of immunotherapy drugs can be highly toxic, increasing the risk of poisoning. And he might pass away right away if the brain swelled as a result of either of those conditions.
Colleagues at home discreetly expressed concern that Prof. Long’s emotional connections were impairing her judgment.
“They were saying… ‘Just let the neuro-oncology experts do their thing and be his friend’,” she relates.
“However, he requires us… Given our depth of knowledge, it is our responsibility.”
Thus, Prof. Scolyer became the first brain cancer patient to receive combination, pre-surgery immunotherapy, while under the supervision of Prof. Long and a group of specialists.
He also receives a vaccine that is unique to his tumor markers, which enhances the medications’ ability to detect cancer.
“A ray of hope”
A few weeks following the catastrophic initial scan, Prof. Scolyer and Dr. Long examined the results of a subsequent test.
The tumor that had been carefully removed from Professor Scolyer’s skull was being examined.
“I was astounded. Within a millisecond,” he declares.
“It was bloody obvious that it is doing something.”
Not only did the tumor contain drug residues, indicating that the drug had made its way to his brain, but the immune system was overflowing. And they became “activated”, offering the team hope that they would now be attacking his cancerous cells.
After surgery, glioblastoma cancer typically returns six months later. However, following eight months of continuous immunotherapy, Prof. Scolyer is not exhibiting any symptoms of active cancer.
Prof. Long reports that his brain is “normalizing” after a clean scan resulted in just the previous week.
There’s been a lot of excitement around the results thus far.
There’s a nagging hope that this will help Prof. Scolyer live longer.
However, there’s also hope that the two may be close to making a discovery that will benefit the 300,000 brain cancer patients worldwide who receive a diagnosis each year.
Normally, this kind of research would take years or even decades, but in just a few short months, Dr. Long and Prof. Scolyer were able to accomplish something that has already sparked interest from pharmaceutical companies and discussions about clinical trials.
Conversely, Roger Stupp is more composed.
According to the physician, who is also the name of the current glioblastoma treatment protocol, Prof. Scolyer has a “grim” prognosis and it’s too soon to tell if the treatment is having an effect.
“The word promise is tough. “I would describe it as encouraging,” he tells the BBC from Chicago.
“It’s not a revolution, but it is still a step forward.”
Before he is convinced, he wants to see Prof. Scolyer go 12 months or even 18 without experiencing any problems.
However, Dr. Stupp asserts that he is “absolutely” certain that immunotherapy will alter the course of treatment for brain cancer; the science is still a mystery.
“We need to get out of our silos and look at what worked in other tumor types,” he states.
Professors Long and Scolyer are also attempting to avoid getting carried away by the excitement.
The possibility that Prof. Scolyer will recover is considered the best-case scenario, but it is “minuscule”.
“There’s a chance for a miracle,” says Prof. Scolyer.
He tells the BBC that he has already overcome the worst-case scenario, saying, “I would have died before now.”
Rather, he spent Christmas and his 57th birthday in December with his wife Katie, and his three teenage children, Emily, Matthew, and Lucy.
But along with the gratitude for each new achievement and every successful scan comes the worry that it may be his last.
Prof. Long remarks, “It’s tough,” regarding treating her friend.
They’ve talked about funerals and death. “He’s incredibly strong,” she continues.
However, Professor Scolyer breaks down in tears as he sits in his office, surrounded by images of his kids, tasks written on a whiteboard, and shelves brimming with framed awards.
Despite his seeming optimism, he acknowledges that he is also terrified and extremely depressed.
“I cherish my family. I cherish my spouse… With a grimace, he says, “I like my work.”
“I’m furious. I’m heartbroken. I wish not to pass away.”
However, the notion that this research might give his diagnosis some context or significance gives him solace.
“The data that we’ve generated – I know it’s changing the field, and if I die tomorrow with that, I’m very proud.”