‘I still have my leg, and I’m alive. That’s what Terry Fox did for me’

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In late 2011, Robert Bailey, a student at Ontario's Sheridan College, started experiencing pesky pain in his right knee. Over the next few months, it grew progressively worse and his knee swelled grotesquely, to the point where he had to wear sweat pants because jeans were too tight.

"Nobody could figure out what the problem was so I was just getting a lot of painkillers," Bailey said.

The consensus was that he was likely suffering the after-effects of an old sports injury. But when Bailey saw a sports-medicine specialist, the doctor knew exactly what the problem was and it had nothing to do with sports.

"He sent me for an emergency MRI and a bone scan. Then he sent me to Mount Sinai," Bailey recalled.

The tests showed that the 20-year-old had a rare form of cancer called osteosarcoma – the same cancer that killed Terry Fox.

But in 2012, the prognosis was dramatically different than in 1977.

When Fox, a student at Simon Fraser University, was diagnosed with osteosarcoma, his right leg was amputated immediately to slow the spread of cancer. He then endured 16 gruelling months of chemotherapy, during which most of his fellow patients died.

At the time, the five-year survival rate was less than 5 per cent. Today it is over 80 per cent.

Bailey was also relieved to know that, today, amputation is almost unheard of. But he did undergo chemotherapy for more than seven months, which shrank the tumour enough to allow for surgery. (Radiation is not used on osteosarcoma tumours because it is largely ineffective.)

Surgeons at Toronto's Mount Sinai Hospital – which is world-renowned for its sarcoma research and treatment program – removed the bone and muscle that was damaged by the cancerous tumour and installed an artificial knee.

One year later, Bailey said, "I can walk normal, I can climb stairs, I can jump. You wouldn't know I had cancer except for this impressive 15-inch scar on my leg."

Dr. Jay Wunder, surgeon-in-chief and Rubinoff-Gross Chair in Orthopedic Oncology at Mount Sinai, said that if Terry Fox were diagnosed today with osteosarcoma he would not have his leg amputated and he would very likely be cured.

While the cancer remains rare – 189 Canadian cases were diagnosed and 45 deaths recorded between 2003 and 2007, the most current statistics available – there are much better treatments.

"The biggest change is that we now have effective chemotherapy," Wunder said. "At the time, we had no idea what drugs worked for which tumours."

In fact, Fox was part of a study that helped researchers figure out what cocktail of drugs was most effective for killing cancerous tumours in the bone. Now researchers are trying to use different chemotherapy drugs based on specific traits. There is no known cause of osteosarcoma, but there are genetic traits that influence risk and response to treatment.

As chemotherapy protocols were developed and improved upon, research on limb-sparing surgery and prosthetics grew exponentially.

Fox, whose tumour was close to the knee, simply had his leg amputated above the knee. In the 1980s, the amputation rate was 100 per cent; today it is less than 5 per cent. Fox wore a crude plastic and metal prosthetic limb when he ran his Marathon of Hope, a heroic 5,373-kilometre trek that lasted 143 days before he fell ill with a recurrence of cancer.

By contrast, Bailey – who was not even born during the Marathon of Hope but learned about it in school – underwent a complex surgery where part of his femur and his knee were replaced with a prosthetic. He then underwent months of intense physiotherapy.

On Sunday, Bailey is going to participate in the Terry Fox Run in Cambridge, Ont. (The Terry Fox Foundation has raised more than $600-million. It funds research for all types of cancer.) As someone who has survived the "Terry Fox cancer," he has been asked to say a few words.

"Mostly, I'm going thank all the donors because I know I benefited from the research they funded," he said.

"Because of that research, I still have my leg, and I'm alive. That's what Terry Fox did for me."