SAN FRANCISCO, Ca. - For at least six months, Michael Bailey's doctors assumed that the blood in his urine came from a kidney stone or a urinary tract infection.
After the bleeding persisted, his doctor persuaded him to have a cystoscopy, a procedure in which a tiny camera threaded through the urethra into the bladder allows a physician to see what's going on.
Bailey, who was 44 when he was diagnosed in 2010, had an aggressive form of bladder cancer. Months of chemotherapy and seven surgeries followed. Doctors removed his bladder, prostate, seminal vesicle, three lymph nodes, part of his urethra and 62 centimeters of intestine. Using his small intestine, they formed a "neobladder," or pouch, to function as a bladder.
Bailey, a correctional officer in the Santa Clara County (Calif.) Sheriff's Office, said he had never heard of the disease before his diagnosis.
Bladder cancer is the sixth most commonly diagnosed cancer in the United States, but it gets relatively little attention compared to other cancers. Nearly 73,000 new cases were diagnosed last year, far short of the more than 200,000 new cases of lung, breast and prostate cancers diagnosed annually.
Yet bladder cancer is the most expensive cancer to treat on a per-patient basis. A 2003 study estimated that the per-patient cost from diagnosis to death ranged from $96,000 to $187,000 and that the disease accounts for about $3.7 billion in direct medical costs each year. In contrast, the cost of treating breast cancer ranges from $20,000 to $100,000, a 2009 study found.
The high cost is the result of lifelong monitoring after diagnosis, because bladder cancer has one of the highest recurrence rates of any form of cancer. Half to 80 percent of patients will have a return of their cancer, requiring extensive monitoring, including the repeated use of cystoscopy, blood and urine tests, and other scans.
"Once you are diagnosed with bladder cancer, this is something you have to watch basically for the rest of your life," said Dr. Mark Gonzalgo, associate professor of urology at Stanford University and physician leader of its urologic cancer care program.
Clinical trials for various drugs and other treatments for bladder cancer are ongoing. Stanford is conducting clinical trials on robotic surgery. At the University of California, San Francisco, several drug studies are under way, but doctors say no potential silver bullet has materialized.
"There is some progress being made, but there hasn't been a big breakthrough," said Dr. Maxwell Meng, associate professor in UCSF's department of urology. "It's not as high-profile as other cancers, but I think that is changing."
Men are about three to four times more likely to get bladder cancer than women, which may be attributed in part to other risk factors associated with the disease, possibly smoking or exposure to chemicals such as arsenic or those used in the manufacture of dyes, rubber, leather and paint. The kidneys filter these harmful chemicals and then pass them to the bladder.
Bailey, who has never smoked and has been vigilant about diet and exercise, believes he was exposed to toxic chemicals while serving in the U.S. Marine Corps from 1985 to 1993. Bailey was stationed at Camp Lejeune in Jacksonville, N.C., a site linked to what may be the largest water contamination in U.S. history.
Aenea Keyes, a professional violinist and composer from San Anselmo, Calif., attributes her kidney and bladder cancers to carcinogenic extracts of aristolochia acid found in a Chinese herbal medicine that she took in 1991 to help reduce swelling from a condition known as lymphedema.
Keyes, 48, required a kidney transplant in 2005 and was diagnosed with bladder cancer in January 2010. Like Bailey, Keyes had to have her bladder removed.
"I don't feel ashamed, but I think there's an element of shame involved because it's connected to bodily functions," she said.
She also has had breast cancer, but described bladder cancer as a neglected disease, particularly for women. Though it is more prevalent in men, studies have shown that women are more likely to ignore symptoms or be misdiagnosed, so they tend to have more advanced tumors and worse outcomes.
Dr. Kirsten Greene, a urologic surgeon and assistant professor, serves as the physician representative at the UCSF bladder cancer support group.
Greene said bladder cancer is a difficult disease because it involves a personal bodily function that is performed multiple times a day.
"There's just not as much money for research and not as much focus on it, but it is a deadly cancer, and it is a life-changing one," she said.