Bladder Cancer: Breaking the Research Barrier

Talk about this article with other patients, caregivers, and advocates in the Bladder CURE discussion group.
“I am convinced I will die in front of a truck or by falling off a mountain or of a heart attack. I do not believe this is going to kill me.” Thomas Touzel’s confidence comes despite having already been through four surgeries to remove dozens of tumors from his bladder.  

Diagnosed in 2003 at the age of 64, right now he feels great. Most cases of bladder cancer are chronic but treatable, while others are lethal within a year or two. Touzel has the more treatable type. “They do a scope and do some chop-chop when necessary,” is how he describes his ongoing treatment. “It’s just a question of maintenance.”

Of the more than 61,000 new cases of bladder cancer estimated for the United States in 2006, about 90 percent will be in people over age 55 and nearly 45,000 will be men—white men for the most part. Although progress is being made in understanding the origins and development of the disease, experts say insufficient funding, poor accrual to clinical trials and lack of public awareness of bladder cancer have left promising new treatments under-researched.

Despite its ranking as the sixth most common cancer in the United States, according to the American Cancer Society, and a recurrence rate of at least 50 percent, the biggest challenge in terms of developing new treatments is enrolling patients in clinical trials, says Walter Stadler, MD, director of the genitourinary program at the University of Chicago Hospitals. Smoking is the biggest risk factor for bladder cancer, so since the disease mainly afflicts men who smoke and have concurrent diseases, “smoking history and things like hypertension and prior surgeries mean that these patients often have problems with kidney function, and that limits our ability to give certain chemotherapy drugs,” Dr. Stadler explains. Delayed enrollment also impacts eligibility. “By the time oncologists run out of options, the patients are too sick to enter a clinical trial,” says Dr. Stadler.

Funding for bladder cancer research is also an issue. Michael O’Donnell, MD, director of urologic oncology at the University of Iowa Hospitals, says researchers have made some promising discoveries in laboratory experiments for a possible vaccine that could target specific attributes of bladder cancer tumors. “Unfortunately, there is not much commercial interest in this kind of development,” Dr. O’Donnell says. While a lack of interest may in part stem from the perception of bladder cancer as an “old white man’s disease,” those affected are starting to take action.

A 2002 national task force identified the need for a nationwide advocacy group for bladder cancer to help establish research priorities at the national level and advocate for scientific studies and clinical trials. Three years later, the wife of a bladder cancer patient founded the Bladder Cancer Advocacy Network.

Diane Zipursky Quale, whose husband John was diagnosed with bladder cancer in 2000, says cancers for which a lot of new research is being done can be traced in part to the patient advocacy groups. “So much is being done in breast cancer, prostate cancer and colon cancer, in large part because the advocacy groups stepped forward and said, ‘We need something better.’ ” Zipursky Quale hopes BCAN will increase awareness and engage the bladder cancer community so that more research funds will be devoted to exploring better treatments.

“Groups like BCAN can make a big impact,” says Dr. Stadler. “Getting patients, community physicians and everybody on the same page is a very important step.” He also urges patients to get more involved in their care. “It would go a long way in galvanizing some of the research efforts out there if the patients would ask, ‘Why are we doing this? How could we make this better?’ ”

Touzel did just that. After researching emerging treatments for bladder cancer, he moved more than 1,100 miles from Florida to Texas to be near M.D. Anderson Cancer Center in Houston. “I’m not a rocket scientist, but within days I knew where I wanted to be and what doctor I wanted to treat me,” Touzel says. 

Pat Screeden of St. Charles, Illinois, was 54 when she first noticed a small amount of blood in her urine, known as hematuria, in December 2003. She received a prescription for antibiotics for what was thought to be an infection. About six weeks later, the hematuria showed up again and she was given another round of antibiotics. When the hematuria returned yet again a month later, Screeden consulted a urologist. Several tumors were revealed during a procedure known as a cystoscopy in which a thin tube with a lens and light (a cystoscope) is placed in the bladder through the urethra.

People should not ignore blood in their urine, says Dr. O’Donnell. “It’s not normal and it isn’t always a simple urinary tract infection. If they have no symptoms of infection, they should consider that bladder cancer is a possibility and ask their physicians.”

Talk about this article with other patients, caregivers, and advocates in the Bladder CURE discussion group.
Cure Connections
Related Articles
CURE Magazine and Bladder Cancer Advocacy Network Align to Increase Awareness of Fifth Most Common Type of Cancer
CURE Magazine and the Bladder Cancer Advocacy Network (BCAN), whose mission is to advance research, provide information and support, and raise awareness of bladder cancer, have joined forces to battle the fifth most common type of cancer, which begins when the cells in the bladder's lining start to grow out of control.
Keytruda Shows Activity in Urothelial Cancer
Data from an ongoing trial showed that one fourth of patients with PD-1-positive advanced urothelial cancer had objective responses to treatment with the immune checkpoint inhibitor Keytruda.
Combining Radiation and Chemotherapy May Improve Outcomes
In the right cancer, radiation and chemotherapy can make a powerful duo. 
Managing Urinary Incontinence
Urinary incontinence after a cancer diagnosis can be managed.
Advances in Bladder Cancer Treatment Around the Corner
New treatments for bladder cancer may be nearing the finish line. 
Related Videos
Dr. Bishoy Faltas on the Future of Bladder Cancer Therapy
Bishoy M. Faltas, medical fellow at Weill Cornell Medical College, explains how the genomic landscape of bladder cancers has an impact on possible treatments for patients.