In a conference room at UCSF's Mount Zion campus, 20 people – young and old, male and female – sit around a table, sharing stories, telling jokes, updating each other on their treatment progression, and inquiring after each others' well being. Their faces are friendly, their stories upbeat, the intimacy palpable. But the cheerful mood belies the very serious fact that most of the people gathered here have been diagnosed with bladder cancer. Some have had it for years; others for just a few months. But all are dealing with a variety of physical, emotional, and social issues not often discussed in public, including incontinence, sexual dysfunction, pain, and mortality.

"Bladder is the fourth most common cancer in the United States," says Badrinath Konety, MD, Associate Professor and Vice Chair of Urology at UCSF, in response to a new member's question. "But people don't talk about it a lot. That's partly because there's a stigma about some of these issues. But it's also because two-thirds of the patients are men, who tend not to talk about this kind of thing as much anyway." As a result, he adds, "historically there's been an overall lack of understanding and support for bladder cancer patients. But there is now a growing realization that more needs to be done for people with this disease."

The bladder cancer support group is just one part of a unique program providing just such emotional and social understanding to bladder cancer patients at UCSF. Co-founded by Michael Rabow, MD, the director of outpatient palliative care, and social worker Karen Schanche, MSW, LCSW, the program also includes a symptom management component. The program is intended to complement conventional bladder cancer treatment which typically includes chemotherapy, radiation, and various forms of surgery.

Bladder cancer is not a death sentence. About 75 percent of the cases are "superficial" ones, in which the cancer hasn't yet spread into the bladder wall. Those cases are treatable, "although they do tend to recur," says Konety. Less common is what is known as "late stage" bladder cancer, in which the cancer cells have penetrated deeper into the bladder wall. In these cases (and in superficial cases where the cancer continues to recur despite repeated treatment), the bladder is removed and replaced with either a "neobladder" (an artificial bladder attached to the patient's urethra) or an external "pouch" connected to the patient's kidney via a conduit made from the patient's intestine.

In the past, Konety notes, the primary objective with bladder cancer patients was to save their lives. "We didn't have the diagnostic techniques that we have now," he explains, "so by the time we saw the patients, their cancer was often quite advanced. Now that diagnostic and treatment techniques have improved so much, quality of life issues are getting more and more important."



Seeking Connection

The support group, which was formed two years ago and now meets once a month, allows bladder cancer patients to both learn and share their experiences. At some meetings, guest speakers talk about issues ranging from surgical techniques to body image and from anesthesia to integrative approaches to treatment. At other meetings, group members simply "check in" on the status of their disease. "At our first meeting we spent 90 minutes on check-ins alone," Schanche says. "That's how hungry people were for this. We saw that patients were really seeking connection."

Rich Snodsmith was just 31 when he was diagnosed with bladder cancer in 2002. He went to his first meeting thinking it was about nutrition – when he realized it was a "support" group, he wasn't sure he wanted to return. He's now glad he did. "The speakers are phenomenal," he says. "And I've made many good friends. I've learned I'm not the only one going through this. That helps a lot."

Group members also exchange tips on coping with the disease. At one recent meeting, for instance, members talked about where to find basic information on bladder cancer, as well as what it's like to live with a neobladder and how Kegel exercises can help men. "That's the beauty of the support group," notes William Roisen, 83, who was diagnosed with bladder cancer 20 years ago. "We can exchange information that we might not find on our own."


William Roisen and Karen Schanche, MSW, LCSW

Caregivers are also welcome at the support group, as it provides a safe place for them to air their concerns and learn about issues that other caregivers are experiencing. "It lets them see that it's normal to feel stressed," Schanche says, "and hear how other caregivers are managing their issues. It's also a place for them to learn to be mindful of their own needs, so they don't end up getting sick."

Symptom Management

The difficult nature of urologic cancers led Rabow and Schanche to develop a symptom management program as well. The symptom management team works with UCSF cancer specialists to improve patients' quality of life. "It's a concurrent model in which the cancer treatment can be addressed at the same time we address attention to quality of life," Rabow says. "The program allows us to address non-cancer-related issues that range from the physiological to the existential." Such issues include fatigue, pain, nausea, constipation, diarrhea, incontinence, erectile dysfunction, concerns about spirituality and mortality, and the depression and anxiety that can arise from being diagnosed with – and treated for – cancer. "These are all issues that traditionally have not been routinely addressed," Schanche notes.

Through the program, which is one of the first of its kind in the country, 200 patients are receiving help with their symptoms (the program hosts about 70 patients per month).

Analysis of the program has demonstrated improvement in multiple symptoms, including pain, depression, anxiety, and spiritual well-being. Nationally it is already serving as a model for other programs.

Rabow is in the process of setting up a research project in which symptom management will be integrated into bladder cancer treatment, with the symptom management team working with the cancer doctors on a day-to-day basis, as opposed to being on a parallel track.

"Being diagnosed with cancer is a terrible thing," says William Roisen. "It's like a cold shower. You think you're going to die in two months. But here I am, 20 years later, still alive. I'm aware of my mortality. But I'm also aware that I need to enjoy life while I can."