While every fatal disease could use more research and public attention, the people involved in the fight against bladder cancer make the case that their illness is especially overlooked.
They say cancer of the bladder doesn’t get near the media attention of cancers that affect the breast, lungs or blood and that bladder cancer research is relatively underfunded.
It’s the sixth most commonly diagnosed form of cancer in the United States, according to the Centers for Disease Control and Prevention, and kills about 16,000 people a year. Yet there have been no advances in the treatment of the disease in more than 30 years.
“It’s not popular, even though it’s No. 6,” said Catriona Johnson of Carrboro, a member of the Triangle chapter of BCAN, the Bladder Cancer Advocacy Network.
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Johnson and others involved in BCAN hope to raise the profile of bladder cancer and some money for research with a walk this Saturday in Hillsborough. The event is one of more than 50 bladder cancer walks taking place nationwide this weekend.
A large tumor prompted doctors to remove Johnson’s bladder when she was 5. Now 33, she struggles to explain why the disease doesn’t have a higher profile. She thinks it might have something to do with the fact that it’s most common in men in their 70s.
“It affects an older generation,” she said. “And people gravitate to leukemia and breast cancer, things that are going to affect people when they’re younger.
William Kim, a UNC-Chapel Hill professor who runs a lab that studies bladder cancer, says people are generally uncomfortable talking about the bladder. Also, the disease tends to affect heavy smokers, who are increasingly people of low socio-economic status.
“I think there hasn’t really been someone famous or rich that has had bladder cancer. We don’t have a champion for it,” Kim said. “We don’t have a Lance Armstrong or a Pavarotti or a Steve Jobs. That’s been a big deficit.”
Kim, 44, said he was initially reluctant to concentrate on bladder cancer, because he wondered who would fund his research. He said BCAN gave him his first big grant to get started and that his lab and others are now testing new therapies made possible with genomic research.
“This is a really pretty exciting time,” he said. “I’m sure they said this in the ’70s, too, but I do think there are going to be significant advances in bladder cancer treatment in the next 5 years, if not sooner.”
The Triangle BCAN chapter, one of only a handful in the country, grew out of a support group for bladder cancer patients and their caregivers. Johnson, who moved to the Triangle from Scotland in 2012 and works part-time as a corporate assistant, said it’s been inspiring for her.
“I’ve never met anyone who’s had the same thing as me until the last two years. I’d never come across a BCAN meeting before,” she said. “They get my bladder jokes when nobody else does.”
Triangle Walk for Bladder Cancer
The Triangle chapter of the Bladder Cancer Advocacy Network will hold a walk to raise money and awareness about the disease starting at 10 a.m. on Saturday at Gold Park, 415 Dimmocks Mill Road in Hillsborough. Click here to learn more.