Johns Hopkins Bladder Cancer Institute holds forum
By Jon Kelvey and Carroll County Times
May 06, 2015 at 9:32 PM
When Richard Clendaniel, of Westminster, was first diagnosed with bladder cancer in August 2011, it came as something of a surprise: Compared with prostate cancer or skin cancer, bladder cancer wasn't something that was really on his radar.
Thankfully, Clendaniel said, the treatment he received at Johns Hopkins Hospital has beaten the cancer back so that he is now on maintenance therapy and involved in a clinical trial. The proximity of Johns Hopkins to Carroll County has meant he has had backyard access to what is really a national resource.
"I was talking to the nurse [at Hopkins] and she said there were quite a few that come in from all over. Someone from in New York, somebody from State College in Pennsylvania, coming down for treatments once a week," he said. "I had a 10:30 a.m. appointment, so I could miss the rush hour and make it in an hour; it's not a bad drive."
On Thursday, Clendaniel will attend the first public forum at the relatively new Johns Hopkins Greenberg Bladder Cancer Institute, where the physicians and scientists who have come together under the institute's umbrella to study this lesser-known cancer will present to patients and their families some of the state of the art research being done on bladder cancer treatment.
"It's gathering information really, to see what else they are working on in the bladder cancer area," he said. "The main thing is that it's just amazing the people that they have down there. They are exploring so many different things."
Clendaniel's own physician, Dr. Trinity Bivalacqua, will be speaking about creating artificial bladders for people who've had to have that organ removed, while other researchers will speak on topics such as immunotherapy and the use of biodegradable nanoparticles to deliver chemotherapy agents directly to tumors. Baltimore Health Commissioner Dr. Leana Wen will also be present.
"We will have a nice mix of innovation; where things are going in the very near future as well as what we will be seeing over the next six months to a year," said Dr. William Isaacs, interim director of the Greenberg Bladder Cancer Institute.
Isaacs noted this was the first of what will eventually become a regular series of public forums at the young institute.
"Who we would like to see [come to the event] are patients who are interested in finding out some of the reason for hope in bladder cancer, that there is in fact good research and good clinical studies under way," he said. "We are hoping to have this be the initial introduction to the bladder cancer research community and to let the patients know what we are trying to build."
Initially founded in May 2014 with a $15 million donation by Erwin and Stephanie Cooper Greenberg, the Greenberg Bladder Cancer Institute is the only research institute in the world dedicated solely to the study of bladder cancer, which Isaacs said has heretofore received much less attention than breast, prostate or colon cancer.
"There really hasn't been an acknowledgment of the scale of the problem that bladder cancer presents," Isaacs said. "Not that other cancers are not important, but the sole purpose of this institute is to focus on bladder cancer. ... A major problem right now is that work on this disease is underfunded and it is understudied."
Bladder cancer is sometimes called "the invisible cancer," Isaacs said, simply because it isn't talked about and studied like other cancers.
The American Cancer Society keeps statistics on the number of diagnoses and deaths related to all cancers, according to Chief Cancer Control Officer Dr. Richard Wender, and it also makes projections: He said the society expects 75,000 new cases of bladder cancer to be diagnosed in 2015, and 16,000 men and women to die from the disease. Those numbers might be smaller than the 240,000 people who die from either prostate or breast cancer each year, but it is significant.
"One-hundred-and-sixty-thousand deaths in a decade is hardly trivial," Wender said.
The statistics mark bladder cancer as the sixth most common cancer for all Americans, according to Isaacs, and the fourth most common form of cancer in men, who are, for reasons not yet understood, more susceptible than women.
"The National Cancer Institute invests about $200 million every year in funding research for prostate cancer and breast cancer," Isaacs said. "There's about half as many men dying from bladder cancer than prostate cancer, and yet the funding [for bladder cancer research] is one-tenth the amount spent on prostate cancer. It's really disproportionate."
The very creation of a bladder cancer institute at a place such as Johns Hopkins may go far toward correcting that disproportionate research investment, according to Wender.
"Places like Johns Hopkins have some really extraordinary scientists. When Hopkins develops a research institute around bladder cancer, I guarantee that some of those great scientists will be bringing their attention to bladder cancer," he said. "When institutions that are recognized as leaders in cancer research focus on a particular cancer, it does make difference."