By Terri Coles
Gord Downie’s decision to be open about his incurable brain cancer diagnosis could be a watershed moment for brain cancer research in the country, and his courage to continue to perform could provide hope for others with the disease, experts say.
“The news today, while sad, also creates for us in brain cancer research an unprecedented opportunity,” Downie’s neuro-oncologist Dr. James Perry said during a Tuesday morning news conference.
Susan Marshall, CEO of the?Brain Tumour Foundation of Canada, admires Downie’s bravery in being open about his diagnosis, and hopes that it will lead to not just greater awareness of the disease but also a measure of hope for others currently living with it.
“I can’t imagine what will happen when he goes on tour this summer. People will want to talk to him about it,” Marsall says. “That takes great courage.”
During Tuesday’s news conference Dr. Perry said that he considers the singer’s courage in sharing his diagnosis to be a beacon for other Canadians, particularly as the band prepares to head out on tour as planned for this summer.
“They will see a survivor continuing with his craft despite many challenges,” he said.
And Marshall agrees that seeing a brain tumour patient — even one with a terminal diagnosis — do well and continue enjoying life is powerful for others living with the condition.
“There is hope out there for people,” Marshall says. “We do know of people who have survived with that tumour and are living for many many years.”
It’s estimated that about 27 Canadians each day are diagnosed with a brain tumour of some type, she says. That means nearly 10,000 Canadians each year face that diagnosis, and about 55,000 Canadians are living with a brain tumour or have recovered from one.
“Our sense is it seems like there’s more and more people being diagnosed with these tumours,” Marshall says. “We think it’s more about awareness. People are becoming more aware. Also, the treatment for brain tumours hasn’t changed for a long, long time.”
Of those tumours, most are non-cancerous — though benign tumours can still be dangerous depending on their location in the brain. The Canadian Cancer Society estimates that about 2,800 Canadians were diagnosed with a cancerous brain tumour in 2012, and the condition was estimated to be fatal for 1,850 of those. While the five-year survival rate for all cancers overall is 62 per cent, the society says, it’s just 23 per cent for brain cancer.
In some people the brain malignancy is primary — that is, it begins in the brain itself. This is the case for Downie, who has a type of brain cancer called glioblastoma, his neuro-oncologist explained at the news conference.
Marshall says the Canadian Cancer Society estimates that 15 to 20 per cent of the people diagnosed with a different cancer elsewhere in the body may develop cancer in the brain when their original disease metastasizes. These secondary brain cancers are becoming more common as people live longer and as cancer survival rates improve, she says.
Gaps in data and research
But ultimately, we can’t say exactly how may Canadians are diagnosed each year, Marshall says, because of a lack of complete national data.
“The number of people affected by brain tumours is not well understood in Canada,” she says.
Right now the brain cancer community in this country looks at the American stats and adjusts them for our population, which may ultimately provide an incomplete or inaccurate picture of the national situation.
Dr. Faith Davis in Edmonton is working with the foundation on a three-year project that will collect data from the five provinces — Alberta, British Columbia, Manitoba, Ontario and Quebec — that make up 90 per cent of the brain tumour cases in Canada. Davis is working to ensure the project provides an accurate picture of brain tumours in Canada, region by region, Marshall says.
“That’s going to be critical and that project is very costly, and so we’re looking for funding to help us complete that project so we can have a full Canadian picture,” Marshall says.
As well, more work is needed to fund clinical trials for new brain tumour treatments, Marshall says, and to get patients across the country access to that research.
“We fund research,” she says of the foundation, “and there’s always a lot more requests for funding than we can possibly provide.”
Many of the front-line treatments for brain cancers have been around for years, she says. For example the chemotherapy drug that Downie is taking, temozolomide, was approved in Canada a decade ago.
“The brain tumour community in Canada, the research community in Canada, is small but they are working very collaboratively with other researchers around the world,” Marshall says.
One example of that work is the Brain Tumour Tissue Bank, which is located in London, Ont., and solely funded by the Brain Tumour Foundation of Canada. The bank provides tissues to researchers around the world who are studying brain tumours.