Rob Ford's illness shone spotlight on rare cancer: liposarcoma

Toronto's outgoing mayor Rob Ford, left, stands next to his brother Doug Ford outside his office as he scrums with the media in Toronto on November 21, 2014. (THE CANADIAN PRESS/Chris Young)

In his illness and death, Rob Ford helped draw attention to a rare and still little-understood form of cancer.

Sarcomas, or soft connective tissue cancers, make up less than one per cent of all cancers diagnosed in Canada. And Ford's rare form - liposarcoma -- made up just 15 per cent of that one per cent.

The disease is so rare, it is diagnosed in only a few dozen patients in Canada each year. What's more, the form afflicting Ford -- pleomorphic liposarcoma -- is the rarest subtype of liposarcoma.

Liposarcoma is notoriously difficult to treat in large part because the tumours it creates typically present few symptoms, growing silently in fat cells until it is too late, says surgical oncologist Dr. Jay Engel at Kingston General Hospital.

"(The tumours) have been present for some time, growing in an area where they don't give a lot of symptoms. So by the time they are diagnosed, they are quite large," he said.

On average, tumours have grown to be 10 to 15 centimetres in diameter before they are found, Engel says. By then, they can encompass vital organs or structures, such as major blood vessels, the liver or kidneys.

After his diagnosis in September 2014, Ford's surgeons began with surgery to remove the growths in his abdomen, followed by four rounds of chemotherapy.

But liposarcomas often return and spread, leading to multiple and often difficult surgeries.

What's more, pleomorphic liposarcoma causes what's known as "high grade" tumours, meaning that each cell in the tumour is different from the next. That makes it difficult to find a chemotherapy drug cocktail that will prevent the cancer from spreading. High grade tumours tend to grow aggressively, making the prognosis poor for most patients.

By January 2015, doctors found more tumours in Ford that had attached to his bladder. He began chemotherapy again, but the tumours did not respond.

Throughout their cancer journey, Ford's family spoke openly about his treatment, which helped to raise awareness of the rare disease. Paul Cantin, a spokesperson with the Sarcoma Cancer Foundation of Canada, says any attention is welcome for a disease as under-the-radar as this one.

"We certainly feel the disease has not gotten the attention it does deserve as far as research goes. That is what people in the field have told us -- that it is an underfunded area," he told CTV News.

One of Rob Ford's legacies may be a new-found appreciation for this devastating form of cancer, and a stronger push to find better ways to treat those affected.

With a report from CTV medical specialist Avis Favaro and producer Elizabeth St. Philip