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Q&A with Bladder Cancer Advocacy Network

November is Bladder Health Month, and we are honored to be partnering with Bladder Cancer Advocacy Network (BCAN). We spoke with Stephanie Chisolm, PhD, Director of Education and Research at BCAN about how this little-known cancer is detected and treated, as well as the unique risks for women diagnosed with bladder cancer. Read our Q&A with Stephanie, below. 

Tell us a bit about your organization and your mission. What motivates you to do this work? What inspires you to show up every day?

BCAN was founded in 2005 and is the only national advocacy organization devoted to advancing bladder cancer research and supporting those impacted by the disease. Though bladder cancer does occur more frequently in older men, women are also diagnosed, but usually at a later stage with more advanced disease.

In addition to supporting research to find a cure, BCAN provides information (reviewed by a robust group of leading clinicians and researchers) and support to patients and their caregivers.

This work feeds my soul because I know that we make a huge difference for those who are impacted by this very scary disease - that frankly, most people never knew existed before their diagnosis.

What are the risk factors for bladder cancer? What kinds of symptoms should women, in particular, look out for?

Bladder cancer is a disease that is most commonly diagnosed in older white males. However, compared to men, women who are diagnosed with bladder cancer have a worse prognosis and higher mortality rates. There are 19,000+ women diagnosed with bladder cancer each year in the United States.

When bladder cancer is diagnosed at an earlier stage, 5-year survival of the disease dramatically increases. It is important for women to be aware of the signs and symptoms of bladder cancer in order to be diagnosed earlier, and have an increased chance of survival.

  • Smoking is the greatest risk factor. Smokers get bladder cancer twice as often as non-smokers.
  • Bladder cancer symptoms may be identical to those of a bladder infection (see signs below) and the two problems may occur together. If symptoms do not disappear after treatment with antibiotics, insist upon further evaluation to determine whether bladder cancer is present.
  • Bladder cancer has the highest recurrence rate of any form of cancer, between 50-80 percent.

A primary sign of bladder cancer is hematuria, or blood in your urine – either microscopic blood that is picked up on a urine cytology screening at a doctors office or gross hematuria, the type that you can see in the toilet with your own eyes. This could be attributed to other causes (for instance, kidney stones) and must be confirmed with a look inside the bladder by a urologist.

Most women notice blood and if it is unexpected, they first go to their general practitioner or gynecologist. Neither of those medical professionals have the equipment to look inside the bladder (a cystoscope). Sometimes the blood may be intermittent and the individual thinks it was just a fluke and never even tells their doctor. Many times, for women especially, they are given multiple rounds of antibiotics to treat a possible bladder infection in response to the blood noticed. Even without biological evidence of an infection!

Urgency and frequency changes in urination are also possible signs of bladder cancer. Of course, those are often associated with aging or other causes, so women get their diagnosis at a more advanced stage on average.

On the BCAN website, you share stories from women who’ve gone through bladder cancer diagnosis and treatment. Can you talk about how cancer treatment might uniquely impact women?

Women with bladder cancer that grows into the muscular layer of the bladder may have to have a radical cystectomy to remove their bladder and create a new way for urine to leave her body, via a urinary diversion. Often, to reduce the risk of spreading, nearby organs like the uterus (including the cervix) and possibly the ovaries are also removed.

Depending on where the cancer is located in the bladder, due to the proximity of the urethra (the tube from the bladder carrying urine out of the body) to the vagina, sometimes the surgery can impact the vagina itself, and the nerves in the area that respond to sexual stimulation.

You can live a full life without your bladder, and we often call it the ‘New Normal’, but women’s sexuality is often impacted. Speaking with the medical team about concerns in advance is helpful. Because bladder cancer happens more often in older adults, they don’t always ask about a patient's sexual goals and activity, especially in women. It is really important for a woman to bring that up, even if she’s uncomfortable talking about it, because her doctor may not.

We have resources for women with bladder cancer that include stories from patients, video presentations by experts, and transcripts of a panel discussion focused on women and bladder cancer.

How can our followers get involved and support Bladder Cancer Advocacy Network?

BCAN’s website, is available 24/7 to provide information, support, research news and awareness about bladder cancer. Visit us to get involved, get answers, connect to others who know what living with bladder cancer is all about, and help us raise awareness and support our mission.