Bladder cancer is the cancer no one wants to talk about
Bladder cancer is the fifth-most common type of cancer in Canada, yet it doesn’t get nearly the same attention that some other diseases do. Fortunately, there’s an organization that wants to change that.
“We’d like to shine a light on bladder cancer,” said Jack Moon, one of the co-founders of Bladder Cancer Canada (BCC), a national support organization for people diagnosed with the disease. “You’re talking about urine and not too many people want to talk about it.”
Moon’s decision to start BCC in 2009 along with co-founder David Guttman was borne out of the frustration of being unable to find adequate information about his own bladder cancer — and not being able to talk to other patients about their experiences.
“At that point you’re basically relying on your doctor and, of course, specialists don’t have much time,” said Moon. “I was on treatments, but when you start to get recurrences, you start to wonder if you’re on the right treatments or if there’s anything else that can be done. There were no other patients to talk to. At that time there was a little bit of information on the internet, but not much.”
Today, Bladder Cancer Canada offers the sort of support services that Guttman and Moon wish they had when they first discovered they had the disease.
“Our mission is threefold,” explained Guttman. “One is helping bladder cancer patients and their caregivers; that’s the cornerstone. Second, is increasing awareness and educating patients across the country and thirdly is raising funds for bladder cancer research.”
Anyone who has been diagnosed with bladder cancer can contact BCC via their toll-free telephone number 1-866-674-8889 or by email at email@example.com and they will be matched with a volunteer they can speak to who has the same type of bladder cancer and has experienced the same stage of the disease. They also periodically hold patient education meetings in different cities across Canada where people with bladder cancer can connect with each other and medical experts in person.
“When you are first diagnosed with bladder cancer, or any cancer, it’s like a 10-ton truck hitting you,” said Guttman. “What do you do? Who do you turn to? Your spouse or partner isn’t usually knowledgeable because they haven’t had it. Maybe you have a friend who has, but having an outside source to give you information or support really helps.”
The Bladder Cancer Canada website www.bladdercancercanada.org has an active discussion forum where people can ask questions and receive answers about the disease. It also lists helpful information about bladder cancer and what symptoms to look for, the most common of which is blood in the urine. Urgency and frequency of urination are also common symptoms.
About 80,000 people in Canada have bladder cancer and 8,700 new cases are diagnosed each year. About three-quarters of the cases of the disease affect men.
There are two main types of bladder cancer, non-muscle-invasive and muscle invasive. The most common of the two is non-muscle-invasive which is usually treated with surgery to remove tumours from the interior of the bladder or through an immunotherapy treatment known as Bacillus Calmette–Guérin (BCG) therapy which is inserted into the bladder through a catheter.
One quarter of cases are muscle-invasive bladder cancer which is often treated by removing the bladder. There are several different ways the function of the bladder can be replaced.
BCG therapy has been around for decades, but Moon says that pharmaceutical companies are researching new treatments, giving new hope for people who have bladder cancer. In April, Health Canada approved TECENTRIQ™ for locally advanced and metastatic bladder cancer.
Bladder Cancer Canada does what it can to raise money to aid research to find new treatments for the disease.
“Our fundraising compared to some larger organizations is really a trickle,” said Guttman, “but with help from our Medical Research Board we have found projects that are meaningful and will help patients. We work with other organizations that will match our funding so we can double our research spending. We’ve funded a quality of care meeting where we bring in doctors and they set standards for bladder cancer care across Canada.”
Much of their fundraising comes from their volunteer-run Bladder Cancer Awareness Walk that is held each September in 20 cities across Canada.
Guttman’s biggest piece of advice to people with bladder cancer is to take an active role in their own treatment and learn as much as you can about the disease and treatments available.
“You have to look your family doctor in the face and ask if what you have is bladder cancer. Usually the first thing they’ll tell you is that it’s an infection. It happen to me and the drugs which I received to fight the infection not only delayed my treatment but caused other issues, When I finally got to a urologist, I was diagnosed with bladder cancer and the proper treatment plan started”, said Guttman.
“You have to advocate for yourself,” he urged. “Doctors are extremely busy. I recommend you learn as much as you as can, find the best doctor one who has time for you and will encourage your questions.”