Bladder Cancer Canada helps patients take control of their disease
Bladder Cancer Canada helps raise money for research and promotes awareness of the disease across the country, but its most valuable role is connecting patients with one another so they don’t have to fight the disease alone.
“No matter how much my husband or my friends cared for me or wanted to support me, they had never been on the bladder cancer journey and being on that journey is unique and scary and so it was really nice to have somebody I could talk to,” says Valerie MacLeod, referring to the fellow bladder cancer patients she met through the organization.
The 60-year-old Calgary business consultant was first diagnosed with the disease in 2008 and underwent treatments that she thought put her into remission, but it came back more aggressively two years later.
“The first time I was diagnosed, I don’t think I really understood how serious the disease was. I just thought it was like a little cancer you take it off and it’s gone, but when it came back in 2010, it was really scary, and all of a sudden I was in panic mode,” she adds.
She started researching the disease online and stumbled across the Bladder Cancer Canada website.
“They helped calm me down because I was in this frantic mode. Everything was running in my head at a hundred miles an hour and I learned that other people have been through this before and have survived this. The people on their website gave me really good ideas on how to do things and how to take ownership of my disease,” MacLeod notes. She’s since become a volunteer member of the organization’s board of directors.
Bladder Cancer Canada was formed in 2009, right between MacLeod’s first and second bouts of cancer, by Jack Moon and David Guttman, two bladder cancer patients who found there was a lack of useful information for patients of the disease online. This despite it being the fifth most common form of cancer in Canada.
Bladder Cancer Canada Executive Director Tammy Northam says the organization has grown since its early days. Its core function to provide education and support to bladder cancer patients and families’ remains, but it has also begun to raise awareness of the disease within the general population.
“It’s been very rewarding for me to meet people and see them come together as a community and know that they are taking charge of their disease,” notes Northam. “They’re empowered with the information we give them. As we’ve raised more funds, we’ve seen incredible developments in research and in the treatment landscape. To see that progress happening in front of our eyes is amazing.”
One of the major programs the organization offers is a peer-support network where newly-diagnosed patients speak on the phone to volunteers who have experienced the same stage of the disease. Bladder Cancer Canada’s website also offers an active online forum where people post questions and receive answers from others in the community. The forum is moderated by Jack Moon, one of Bladder Cancer Canada’s co-founders.
Northam notes that they offer patient handbooks online that people can download to educate themselves about the disease and that they organize meetings in different cities across Canada throughout the year where people can come together to find out more about bladder cancer. For people living in smaller communities who can’t come to those meetings, the organization offers online webinars.
With all that they do, she says Bladder Cancer Canada receives no government support and their major source of funding is an annual awareness walk held each fall. It will take place in 22 cities this year and the date of the walk varies by community, but in most places will take place on September 23. Last year it raised $600,000.
“We find that it’s not just about raising the money, but also creating more awareness and bringing people together. They enjoy being with their peers, making friends and feeling like they are part of something bigger,” Northam says.
Dr. Wassim Kassouf, the chair of Bladder Cancer Canada’s Medical Advisory and Research board and one of the organization’s co-founders, encourages people to participate in the walk to help raise money for a disease that he says is disproportionately underfunded compared to other forms of cancer.
“The only way to advance the treatment of this disease is to improve and increase research,” he says. “As long as bladder cancer is underfunded, it will always be a challenge.”
Despite that, Kassouf says the outlook for the disease after diagnosis is promising.
“There have been, in the last couple of years, new immunotherapeutic treatments that have been shown to prolong the survival of patients with advanced forms of the disease. That’s exciting and promising, particularly for patients where chemotherapy does not work,” he says.
Kassouf adds that one of the symptoms of bladder cancer is blood in the urine so he urges people who see red to contact their physician immediately.
“Whenever you see blood in your urine, go see your doctor,” he said. “You may see it once and the next time you see it could be a year or two later. Don’t wait for a second episode. Go have it checked just to make sure [you’re] not dealing with something that needs to be [taken care of] immediately.”