The Bladder Cancer WebCafé

By Diana Price

When Wendy Sheridan started the Bladder Cancer WebCafé (http://blcwebcafe.org) in June 1999, she was determined to provide survivors and their loved ones with crucial information and support. Her determination was fueled by personal loss and a close connection with bladder cancer: she had lost her father, James, and one of her sisters, Janey, to cancer before another sister, Maureen, was diagnosed with bladder cancer in 1998. Wendy herself is a breast cancer survivor. Aware of how important it was for her family to have all of the available information about a diagnosis, and devoted to increasing the number of resources available to bladder cancer patients and their caregivers, Wendy set about creating a site that delivered both the most current information about treatment and a welcoming community of support for those affected by a bladder cancer diagnosis.

The result, seven years later, is a Web site that has become a home for many in the bladder cancer community, offering medical information reviewed by an advisory board of medical experts in uro-oncology, a thriving message board, resource links, survivor stories, and regularly updated research information. Topics that are especially relevant for women include a page devoted to women and bladder cancer (http://blcwebcafe.org/womenandbladdercancer.asp) and a page describing risk factors (http://blcwebcafe.org/blcatypes.asp).

All of the information draws visitors, Wendy says, and it is fulfilling to be able to provide people with information about their diagnosis and at the same time enable a community of survivors to share their experiences. “People want to know what they may (or may not) be in for,” she says, and they “want to feel validated; [they] want to share and connect, and our site enables this.”

Wendy continues to contribute much of the information on the site herself, tracking the progress in the field of uro-oncology, attending conferences, and communicating with doctors in the field who view the WebCafé as an important resource. Other information on the site is contributed by survivors who share their experiences in such sections as “Pre- and Post-Op Survival Guides,” “Tales from the Trenches,” and “Surviving Chemotherapy.” It is the critical contributions of these survivors, Wendy says, that keep her inspired: “The most beautiful thing of all is watching a scared newcomer to our group develop into a knowledgeable, empowered patient or caregiver, who then extends the same support to the next newcomer. It’s a way of ‘paying forward’ the invaluable help I received myself when my sisters were diagnosed.”

Indeed the spirit of the Bladder Cancer WebCafé is characterized by the generosity of its creator, its frequent survivor contributors, and its advisers. It is a dedicated community determined to make a diagnosis of bladder cancer and the journey that follows a little less daunting, much friendlier, and more accessible for all of those who face the challenge.

What Women Should Know About Bladder Cancer

From Wendy Sheridan, Founder, Bladder Cancer WebCafé

  • Although bladder cancer is considered a disease of elderly white men and “rare” in women, more women die from bladder cancer each year than from cervical cancer, and the number of women with bladder cancer rivals that of women with ovarian cancer.
  • It’s true that men with bladder cancer outnumber women three to one, but the prevalence of bladder cancer in women is still very high and growing each year.
  • Women are more often diagnosed with advanced cancers or with rare cell types (meaning it’s harder to treat) and have decreased survival compared with men. For these reasons it’s extremely important that healthcare providers become educated about the signs and the symptoms of bladder cancer in women.
  • Even young women can get bladder cancer.
  • Timely diagnosis is paramount with any cancer but especially with bladder cancer. Eighty percent of bladder cancers are noninvasive and very curable when found early, but survival rates drop drastically once bladder cancer invades even slightly.
  • Painless blood in the urine is the most common symptom of bladder cancer, but many healthcare providers are not educated about this and assume that blood in the urine is of gynecologic origin. Be aware of the symptoms of bladder cancer.
  • Smokers and those at high risk should consider hematuria screening.
  • Many people are terrified of losing their bladders and ending up with a “bag,” but innovations are making this worry a thing of the past. We now have promising bladder-sparing therapies and bladder replacement surgeries that provide excellent quality of life, leave no telltale signs, and allow for normal voiding.
  • It is of utmost importance to go to an institution of excellence when dealing with bladder cancer. Not all urologists can perform the latest techniques or have access to a team of experts in related fields of oncology and radiology.