‘Transformed the landscape’: What Terry Fox taught cancer doctors

TORONTO — “The poster child is lung cancer,” said Lillian Siu, a clinical trial specialist at Toronto’s Princess Margaret Cancer Centre, over a bistro lunch on Thursday with Terry Fox’s family members and a few of the cancer researchers who will benefit from a record-breaking new donation in Fox’s name, publicly announced an hour earlier.

In cancer medicine, Siu said, many of the diagnostic concepts are blunt and outdated, such as describing lung cancer as either “small cell” or “non small cell” based on how tumours appear under a microscope. It makes every patient’s tumour seem the same as all the others, and so their prospects seem similar.

But lung cancers are not all the same. Now, the genetics of tumours can be sequenced, and often this reveals they come in genetic subtypes that respond to certain treatments and not others.

Tumours might look the same, but to genomic sequencing they reveal their specific “vulnerabilities,” Siu said. So, in this emerging science, lung cancer is recognized as having many subgroups, and people who recently might have been expected to die quickly can now expect to live 10 years or more if they have a certain type that is vulnerable to a targeted genetic intervention.

Cancer is a genetic disease, Siu said. As with lung cancer, so with all the others. The cancer that killed Terry Fox, for example, osteosarcoma, had a 20 per cent survival rate after five years in 1980, when he ran his Marathon of Hope. Today it is 80 per cent.

This is the promise of “precision medicine,” the underlying principle of the Marathon of Hope Cancer Centres Network, the manifestation of Fox’s dream that was the focus of Thursday’s announcement.

Marco Marra, a medical geneticist at the University of British Columbia and Terry Fox Leader in Cancer Genome Science, called it “the ultimate tribute” to Fox, a network connecting the research of more than 1,300 scientists among 57 cancer centres across the country.

These include melanoma researcher Ian Watson of McGill University. He said melanoma has gone from a cancer that was incurable to one that responds to precision-targeted genetic treatment leading to “curative outcomes.” His goal is that these outcomes should be within reach for all late-stage melanoma patients. Precision medicine, based on biomarkers in each patient’s genome, has “transformed the landscape,” he said.

“We know the model works, but now we need to take it further,” said Marra.

The first phase of Marathon of Hope network, launched in 2019, involved research on tissue samples from biobanks. Some were from patients who gave samples prospectively when they were diagnosed. Some were from people who were dead.

Phase two will use genomic information directly from actual current patients, and use to this to devise targeted treatments focused on the promise of genetic biomarkers for personalized medicine.

“It’s more challenging,” Siu said, and the goal remains lofty, to sequence the genome of each patient newly diagnosed with cancer. There can be inefficiencies, seeking out more genetic information than is needed to treat the cancer. But the promise is massive.

Now, it is also well-funded by both government and philanthropy.

At the ceremony Thursday in Toronto to unveil a new short video that illustrates the network’s activities, with music by Leslie Feist, the Terry Fox Foundation announced its largest single gift ever.

Larry Tanenbaum, a part owner of the Maple Leaf Sports and Entertainment, and his wife Judy, gave $25 million from their family foundation, which is matched by the federal government for a $50-million influx of actual funding for this phase two of the network.

“Progress is real, but it is not yet enough,” Tanenbaum said.

As a thank you, former Toronto Maple Leafs captain Darryl Sittler presented the Tanenbaums with a framed photograph of Sittler presenting Fox with Sittler’s 1980 NHL All Star Game jersey before a welcoming crowd at Toronto’s City Hall during his run in 1980.

“I was Terry’s hero. He was mine,” Sittler said.

“He asked all of us to keep going,” said Fred Fox, Terry’s older brother.

He said Terry did not run to become a famous Canadian hero, though he did, perhaps the greatest in that pantheon. He simply ran to raise money to help people with cancer, with a provisional goal of a dollar from every Canadian, which in 1980 would have been just shy of $25 million, a total that has been long since surpassed. The Terry Fox Foundation has raised more than $1 billion since he died on June 28, 1981.

Fox ran every day for 143 days in the summer of 1980, from the Atlantic Ocean to the north shore of Lake Superior, where he learned his cancer had spread to his lungs, forcing him to stop. A statue marks this place today, outside Thunder Bay. He died the next year, age 22, the youngest ever Companion of the Order of Canada, its highest rank.

A newly released documentary film, Run Terry Run, is compiled of behind the scenes footage from his run, from reels that had been unwatched for years.

His niece, Kirsten Fox, who works in community development for the Terry Fox Foundation in B.C. and Yukon, said they were rediscovered in storage at a sweetspot in time, early enough that they had not physically deteriorated, and late enough that the cost of digitization had become affordable. She described some of its poignant scenes, including Terry leaving the highway for a swim and the boyish joy he displayed.

After the ceremony Thursday, a long-time Terry Fox Run participant strode away across the cobblestones of Toronto’s historic Distillery District.

“He and I would have made a great pair,” said Bill McGuire, meaning he still has his right leg, and Terry had his left.

McGuire lost his leg to a similar type of cancer, sarcoma. He has done the Terry Fox Run for 37 years, first on two legs, then in a wheelchair and for the past two decades on just one leg and crutches, as he does not like his prosthetic. Lately, he has raised about $20,000 each time.

In 1980, McGuire was an avid runner, even doing marathons, and he recalls being amazed to hear of this young guy running across the country. “He wasn’t looking to sell ads on his T-shirt. He’s just doing it,” McGuire said. He was a “quintessential Canadian.”

McGuire reflects that his own experience with cancer has made him a better person, no longer “borderline jaded” as before, but grateful, hopeful, and appreciative of the chance to carry on Fox’s fundraising legacy.

National Post

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