Group aims to help cope with bladder cancer

TORONTO — When David Guttman was diagnosed with bladder cancer 16 years ago, he didn’t know where to find someone else who really understood what he was going through.

CBCAN founders Jack Moon, left, and David Guttman.

“I didn’t know how long I would last,” he said. “You feel your life is going to be snuffed out.”

He couldn’t find anyone anywhere to help him or answer his questions, he said.

Instead, he had to rely on information from other people who had not personally experienced the disease, he said. However, he didn’t want other people to have to face the same situation.

The result was the formation of the Canadian Bladder Cancer Network (CBCAN), a patient support network that he co-founded with fellow bladder cancer survivor Jack Moon.

The goal is to help other people who are just beginning their fight, and to tell others about the symptoms, Guttman said.

“Most patients go for six months without any treatment plan,” he said, adding that he had cancer for eight months before he was diagnosed.

He said there is not enough research into the causes and symptoms of bladder cancer.

The Canadian Cancer Society describes smoking as the most common risk factor for bladder cancer. The most common symptom is blood in the urine.

In 2009, about 6,900 Canadians were diagnosed with this form of cancer, and an estimated 1,850 patients died of it, according to the Canadian Cancer Society’s website.

Men are much more likely to contract the disease than women, the website says. They also have a much higher mortality rate. One in 95 men and one in 230 women are likely to die from this form of cancer.

Guttman called it the most expensive cancer to treat, explaining that even though he was diagnosed more than 15 years ago, he still requires expensive medical treatment.

Moon agreed. “Once you get bladder cancer, you basically have to have checkups for the rest of your life,” he said.

Mendy Sharf, who was diagnosed with the disease just under a year ago, said it was extremely beneficial to be able to speak to Guttman for advice on coping with the surgery.

Guttman’s main message, Sharf said, was “life goes on.”

Sharf, who is turning 80 in a few weeks, said he still lives a normal life. He is able to play tennis with a brace to hold the bag in place, and even has a “lady friend.”

The biggest challenge so far in starting the organization has been fundraising, Moon said, explaining that although this form of cancer is the fifth most common form, it is number 19 in terms of research.

However, he said some organizations have recently offered their support, including pharmaceutical giant Pfizer Canada, which recently gave CBCAN a grant.

The company already supports patient groups for kidney cancer, and bladder cancer is similar in that there is a lack of patient groups in Canada, said Safia Genereux-Khali, manager of corporate communications for Pfizer Canada.

“We are hoping that this small contribution will help the Canadian Bladder Cancer Network get off the ground and kick-start its efforts toward helping patients,” she said.

Although CBCAN has not started to hold meetings, the group runs a discussion forum where people ask questions and help each other, letting them know what they can expect as the disease progresses.

The goal of the forum, Guttman said, is to discuss the various treatment options, as well as to provide places for patients to get help with both the social and the nursing aspects of care.

The next step is to increase membership, he said, adding that  volunteers are needed in administration, fundraising, and database and website maintenance, so that they can continue to help the largest number of people.

“I’m not trying to get into the medical aspect of this [disease],” Guttman said. “I’m there to help people cope with it.”

For more information, please call 416-571-0016 or e-mail Guttman at [email protected].