I am often struck by the beauty of the language and images used in medical research. This quotation from a paper in the British Journal of Urology about bladder cancer (BC) pierces my heart,
“…among patients diagnosed with BC, the burden of the disease is noticeably greater in women than men.” (E Scosyrev, et al. BJU International, 109: 57-62, 2011)
Women bear the burden, but men are three times more likely to be diagnosed with bladder cancer. Women bear the burden because they are diagnosed at higher stages and even when diagnosed at the same stage as men, they are more likely to die from the disease.
Read about bladder cancer at the Bladder Cancer Advocacy Network (BCAN) webpage here
An orphan disease
Dr. Gary Steinberg, professor of surgery and director of urologic oncology at the University of Chicago, identifies a lag in detection and diagnosis as key culprits to women’s worse outcomes.
“Bladder cancer is still an orphan disease. If you don’t look for it or ask for it, you won’t find it.”
Overlap between symptoms of urinary tract Infection and bladder cancer isn’t recognized consistently by general practitioners.
“There’s a lack of awareness of bladder cancer being a differential diagnosis for blood in the urine…especially for women….The message in the internist’s mind is UTI. Bladder cancer is not on their radar.”
Instead women are frequently diagnosed with “recurrent urinary tract infections” that may be, instead, recurrent symptoms of bladder cancer, including these:
- microscopic blood in the urine
- visible blood in the urine
- changes in urinating (frequency, persistent urge)
- burning and pain when urinating
Absence of urologic rotations in the current medical school curriculum contributes to the problem of diagnosis in primary care. “The average medical student never does a urology rotation,” Sternberg explains.
Information overload also contributes:
“I think that we’re living in this explosion of information and technology….I only read about bladder cancer. I can’t possibly keep up and read about all these other diseases, and I suspect that the internists are overwhelmed as well.”
Electronic medical records and evidence-based medicine
However, the explosion of information and technology may also help general practitioners. Despite political controversy, electronic medical records may provide the data and feedback they need.
"Our healthcare system is going through a tremendous transition right now….I think the electronic medical records, once we really get it up and running everywhere, and we’re able to collect data and mine that data I think that we’ll learn some very important things about how we manage patients. I think that your average doctor doesn’t get a whole lot of feedback, but once you have data, you will be able to get feedback."
Using data to shape clinical practice will help turn healthcare toward evidence-based medicine.
“One of the things that is sorely lacking from our healthcare system and one of the things that is lost in the political debate is the need for evidence-based medicine. When we get data, we’ll be practicing evidence-based medicine, and I suspect that will help improve outcomes.
“Women are the driving force”
As women carry a greater burden of the disease, they also carry greater weight for advocacy about bladder cancer. Steinberg notes that women’s advocacy has been a driving force in raising money for breast cancer research and he believes that will be for bladder cancer, too.
“Bladder cancer suffers from that because it’s perceived as a male disease...but women are out there doing the advocacy…When you look at BCAN, there’s a lot more women volunteers than there are men.”
“I’m an academic person, and I’m an optimist.”
If you’re familiar at all with bladder cancer, you’ll know that there have been no major advancements in the disease in more than 30 years. In addition, bladder cancer treatment costs almost $4 billion dollars every year.
In spite of this, Steinberg remains optimistic about the medical research.
"We’ve made a lot of progress in bladder cancer in general, through the genomic work…one of things that we’re trying to understand…is [whether] bladder cancer is different in males than females or is it the same disease? Most importantly, why do women die from bladder cancer at a higher level than men?There’s been a tremendous interest in the biology of bladder cancer from the scientific community. I think there’s been a tremendous interest in the treatment of bladder cancer from the pharmaceutical industry."
What can we do?
Orange needs to become the new pink, in my opinion. Those of us touched by bladder cancer need to be passionate advocates for the disease. We need to make our general practitioners and the general public more aware of the symptoms of the disease, and we need to raise money for research and treatment.
BCAN's Chicago Walk for Bladder Cancer is this Sunday, May 3rd at Harold Washington Playlot Park. Registration is at 9 and the walk starts at 10. For more information, go here.
And, I'd be very honored if you'd donate to our Cancer is Not a Gift team. Even $5 helps. You can donate here.
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