Q&A with Cynthia Kinsella: President of the National Bladder Cancer Society

July 17 has officially been declared as National Bladder Cancer Awareness Day. Our last post gave you some suggestions on ways that you can help build awareness about bladder cancer – one of the most overlooked, but deadliest cancers.

The American Bladder Cancer Society’s president and CEO, Cynthia Kinsella, is thrilled to have the spotlight focused on bladder cancer around the country. The American Bladder Cancer Society is only two years old, but already is rallying to build awareness and a community for bladder cancer survivors. The website is centered around a community of survivors who can find support and information on the site’s forum.

We’re happy to feature a Q&A with Kinsella about what people can do to build awareness and some startling facts about this disease.

Denene Brox: What can people do to get involved with National Bladder Cancer Awareness Day on July 17 and all year round?

Cynthia Kinsella: We have ideas on our website, Twitter and Facebook accounts of ways people can help. We are asking everyone to do just one thing. We’ve done a flyer that people can download and print. You can take it any place you can think of – your dentist’s office, your work’s bulletin board, etc. It’s awareness that we’re working toward this year. Get the word out. Call your local paper and ask them why they haven’t done anything on bladder cancer – give them our information, we’d be glad to help them.

DB: What do you want people to know about bladder cancer?

CK: The thing about bladder cancer is that it’s a major cancer that is little known by the public. The reality of it is this: One out of 28 men and one out of 84 women will develop bladder cancer in their lifetime. Bladder cancer can be deadly if it’s not caught early.

There is no cost-effective, common test for bladder cancer as of yet. Until that time, what we’ve got to do is get the word out about symptoms. The thing about symptoms is that it doesn’t mean you have bladder cancer, but if you have any of the symptoms you need to have them checked out by an urologist.

The gift that we can give bladder cancer survivors to come is the gift of an early diagnosis. We’re hoping to start a national campaign. We’re currently looking for grants to support it. The message is going to be very simple: Ignorance can kill. Know bladder cancer symptoms. We feel that if we can just get people to be cognizant of symptoms like difficulty urinating or seeing blood in urine. In particular women: Women have a better chance of dying from it than men. One of the reasons is because often the symptoms are mistaken for common gynological problems.

One of the top symptoms of bladder cancer is that you’ll see blood in your urine and it can be sporatic. Women can see spotting in between their periods and they’ll assume it’s their period, you don’t think of urine and how can you differentiate? This is why we want awareness of symptoms, so that people will get them checked.

DB: What are some statistics associated with bladder cancer – to give people a perspective of its severity?

CK: Seventy thousand people in the Unites States this year will get bladder cancer. That’s 20,000 more people than will contract AIDS this year. And a few days ago I heard on TV that that was epidemic.

For a lot of years, bladder cancer has been looked at as an “old man’s cancer,” but it’s really not. We’re seeing another side of it in young fathers. And yes, your chances of developing it do increase as you age; but even if 10 percent of the people getting it are younger, that means that 7,000 people each year are getting it at a young age. It has the highest recurrence rate of any cancer. It costs the most to treat. It can affect your sexuality, your body image and take your life.

Our goal is to support survivors – there are half a million survivors in the Unites States. When I was diagnosed in 2004 there was very little out in there and no support services.