Bladder Cancer Support Group Using Virtual Connections to Help Patients

When Dan, a husband and father from the greater New Haven area received a Stage IV bladder cancer diagnosis, he was presented with two options. The first was hospice care. The second was to undergo a radical cystectomy, a surgery that removes the bladder. He chose option two.

“When you’re in 8th grade creative writing class and they ask you to write your life story, nobody ever writes ‘I’m going to get cancer at 54 and be thankful that I live,’” Dan said.

Bladder cancer impacts around 80,000 people in the U.S. each year and it’s the fourth most common cancer among men. Treatments can include chemotherapy, radiation therapy and surgery. Since a radical cystectomy removes the bladder, patients who undergo the surgery require a new way of removing urine from the body, such as an ostomy bag.

Ahead of his ‘big, life-changing surgery’ with Patrick Kenney, MD, medical director of the Smilow Cancer Hospital Care Center at Greenwich Hospital and associate professor of Urology at Yale School of Medicine, “you have a lot of questions,” Dan said. “Everything from infection control, to, should I order two or four boxes of these supplies.”

Nine years after his surgery, Dan is now answering some of those questions for fellow patients in Yale Urology’s Bladder Cancer Support Group, which meets virtually the first Monday of every month. When Dan joined the group several years ago, there were only a few members. It’s since grown to include both men and women in different stages of their diagnosis, treatment or recovery.

The group is open to any patient diagnosed with bladder cancer in the Smilow Cancer Network, so people attend from Greenwich all the way to Westerly, Rhode Island. The hour-long meeting is an open forum for patients to ask questions, voice their concerns, frustrations or fears. Some choose not to speak at all during the meeting. But all are gaining a sense of comfort during a stressful time.

“You could have the best support group around you for family and friends, but you know they're not in your shoes and these people understand and can empathize in a way that others might not be able to,” said Monica Bevilacqua, RN, BSN, the bladder cancer nursing coordinator who runs the monthly meetings.

How to support someone with cancer

Dan’s biggest support is his wife Jill, who was by his side during treatment and helped Dan maintain his sense of humor. On infusion days, they would bring a portable DVD player with them and watch their favorite TV shows together, just to laugh. Having that kind of support can make a big difference for patients undergoing cancer treatment.

In addition to the Bladder Cancer Support Group, there are groups through Smilow Cancer Hospital for several other types of cancer, including breast cancer, lung cancer, pancreatic cancer and prostate cancer. The meetings are led by clinical social workers and give patients the opportunity to connect with others who faced the same diagnosis. If they don’t feel comfortable speaking about their experience in a group setting, there are other ways for them to get the support they need. All are free of charge.

“If someone is experiencing any psychosocial distress, any emotional distress, oftentimes there's a social worker that can get involved,” said Cori Ouellette, the clinical social worker who works with the Bladder Cancer Support Group. “At that point, the social worker can assess the needs of the patient individually and then move from there to provide community resources, general emotional support and collaborate with the medical team to see what best fits the needs of the patient.”

While a support group may not be for everyone, Bevilacqua says patients who are curious about the benefits should give it a try. It’s the comfort provided by other patients that can sometimes be the most powerful. She pointed to Dan as an inspiration in the group for his continued support to others many years after his own surgery. It’s a role that has given him meaning.

“I was raised Catholic, and I went through high school in the Jesuit part of the Catholic faith. Jesuits teach you to be altruistic. Be a ‘man for others’ is the Fairfield Prep motto and I get to live that,” Dan said. “It’s a way for me to pay back still being here for nine years.”

Find a support group and learn more about supportive services offered at Smilow Cancer Hospital.