Be Your Own Best Advocate When it Comes to Bladder Cancer

Advocating for yourself.

HEATHER L. VAN EPPS, PHD
PUBLISHED: 1:00 AM, WED MARCH 14, 2012
Talk about this article with other patients, caregivers, and advocates in the Bladder CURE discussion group.
When 58-year-old pathologist Michael Jones spotted blood in the urinal at work, his first thought was “Gosh, somebody here is sick.” Then he remembered that he was the only male in the office that day.

He promptly collected a urine sample for cytology and handed it off to one of his colleagues. He quickly received a diagnosis of stage 1 bladder cancer.

When later exams suggested possible muscle involvement, Jones opted for a radical cystectomy with a neobladder, and he’s been healthy and cancer-free ever since. “For me, the surgery worked out marvelously. I feel like I’m healthier than I was before.”

But not everyone is as fortunate as Jones. For many, especially women, hematuria is often attributed to other causes, such as urinary-tract infections or gynecological problems. “I suppose I should have said, ‘This isn’t right; I need to see a urologist, but I trusted my doctor,’” says Pat Boumansour of her initial, incorrect diagnosis. For many women, blood in the urine might not be a cause for alarm, and they may miss the common signs of bladder cancer. But Boumansour urges women who find blood in their urine to contact a urologist.

Unlike many other cancers, bladder cancer might not be on most people’s radar. And the research dollars for bladder cancer are comparatively scarce. “Breast and prostate cancer have been extremely successful,” says Dan Theodorescu, MD, PhD, “but that’s partly because they have a lot of visible, vocal and eloquent advocates.”

To help spread the word about bladder cancer, Boumansour has gotten involved with the nonprofit organization Bladder Cancer Advocacy Network (BCAN). “BCAN is trying to get information on bladder cancer into the urologists’ offices … but that is a day late and a dollar short,” says Boumansour, who feels that the critical target for this information should be primary care and gynecology offices in order to reach those who may be at risk.

Jones, now retired, is grateful for his rapid diagnosis and treatment and has also gotten involved with BCAN. As a pathologist, he is in a unique position to help others understand the details of their diagnoses. “It gives me an opportunity to help people understand their pathology reports, which is very rewarding.”

Talk about this article with other patients, caregivers, and advocates in the Bladder CURE discussion group.
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