Richard Schooler was one of the world’s leading researchers in the field of melanoma – a type of skin cancer – when he developed a brain tumor. Faced with possible death, he decided to make himself a guinea pig.
Because Scolaire was an athlete competing all over the world, he was in excellent physical condition. He is one of the world’s leading pathologists in the field of melanoma whose pioneering research has saved thousands of lives, according to a report in The Guardian.
At the age of 56, Professor Schooler’s life has been rich. Then, on the morning of May 20, 2023, he lost consciousness and was shaking on the floor of a hotel room in Poland, terrified and afraid.
After this grand mal seizure, he went for an MRI scan at Krakow University Hospital. The examination found a mass in the temporal lobe. Schooler immediately realized that this examination brought him very bad news.
Having diagnosed other people with cancer several times, he knew exactly what this discovery might mean, most likely brain cancer. He knew that the outcome for the high-grade glioma was “shockingly bad” and that the brain tumor was incurable, and that he would have “a horrific last few months”.
He felt devastated, anxious and terrified, and cried a lot when he called his children.
Twelve days later, he had a biopsy in Sydney, which confirmed “the worst of it.” The tumor was a grade 4 glioblastoma, which is fatal.
“I loved my life,” Schooler wrote in his new memoir, “Brainstorming.”
Diagnosis detection
Just 3 weeks before the seizure, the athlete had represented Australia at the Multi-Sport Triathlon World Championships in Ibiza. But his life became measured in months and weeks.
Schooler seems remarkably optimistic for a man who was not expected to be alive when his book was released last month. But now he is alive, and fighting back.
Shortly after his diagnosis, Schooler decided to disclose his diagnosis as a way to keep friends and colleagues informed, but mainly as a memorial to his three children. The news was received with a torrent of letters. Now everyone knows what the inside of his skull looks like because his brain scans are on his social media.
For years, Schooler’s associate medical director at the Melanoma Institute, Georgina Long, has been leading trials using a new class of immunotherapy drugs that have achieved amazing results in melanoma patients.
She explains, “What these drugs basically do is stimulate the body’s immune system to recognize and kill cancer cells.”
These drugs are more effective if given before the tumor is removed. Within 15 years, the 5-year survival rate for advanced melanoma patients increased from 5% to 55%.
But while progress has been made in melanoma survival rates, treatment for aggressive glioma has not changed in 20 years.
“Basically, this type of tumor spreads like tree roots running through your brain,” Schooler says. “And if you look through a microscope, you can’t see where the tumor ends. So you can never treat it with surgery or radiation therapy. And if you try to cut out the entire tumor, there’s nothing left.” You have a lot of brain.”
Treatment usually focuses on prolonging life with chemotherapy and radiation until palliative care and death.
From the moment she received her MRI scans from Poland, Long was at work consulting with world-leading Melanoma Institute experts and those around the world. She pioneered the successful use of immunotherapy for melanoma patients whose cancer had spread to the brain.
She and her team were developing a plan for a radical treatment for their colleague. They took what they had learned from immunotherapy and applied it to his cancer. This treatment had not been tried before anywhere, was extremely risky and the risks could not have been higher as there was a 60% chance that the side effects would lead to his death. If it causes significant swelling in the brain, it could kill him within days.
They estimated there was a 5% chance of saving his life, but it might be less than 1%. For Schooler, “it seemed worth a try.”
Hoping the tumor wouldn’t get any bigger, he would postpone the downsizing surgery as long as possible to give the drugs a chance to work. He was to receive a combination of 3 immunosuppressive medications intravenously. Through it all, he continued to run and bike.
After 28 days, cranial neurosurgeon Brinda Shivalingam removed pieces of the tumor in a 6-hour operation. She later admitted that it was an emotional experience for her to operate on a friend.
Tremendous result
The pathology results showed that his immune cells were active and “hopefully attacking the tumor cells” and, as Schooler says, “it was a tremendous result.”
This experience caused him to re-evaluate his previous life and priorities. Driven, ambitious and hard-working, he rushed through life, traveling abroad 10 to 12 times a year to speak at conferences. “I got caught up in everyday life and didn’t necessarily think about the big things. That’s changed.”
Now he knows that love is what really matters. “The only thing that has really changed is spending time with my family and appreciating them. It has made me prioritize my family.”
He received praise and attention. But he says he would return it all in a heartbeat to get his old life back.
It is too early to say whether his first treatment in the world has been successful.
Every cell in his body is studied. “Ultimately, you have to do clinical trials to prove whether something works or not,” Schooler says. “We won’t know for sure until the trial is done. But the great thing is that we are able to generate some science by comparing my brain before and after immunotherapy.” “This gives some scientific hope that this is the solution. It’s worth exploring.”
After nine doses of the vaccine, with another dose coming next month, Long made the decision to stop Scolaire’s immunotherapy. At the time of writing, there was no sign of recurrence. But that doesn’t mean it won’t happen. “It’s just a matter of waiting and watching and seeing if there’s a reoccurrence. We’ll deal with that if and when it happens.”
For now, Long added, “I’m thrilled that this is the path we’ve taken.”