Staying the Course

Patient Expert

After finding blood in his urine in 2015, Steve Shulman, now 68, knew he needed to get checked out. His doctor referred him to a urologist, who conducted tests to determine his bladder’s health.

While Shulman, the executive director of a small nonprofit in Washington, D.C., was prepared for bad news, he was nonetheless shaken when his tests revealed the worst. “Hearing you have cancer in your body changes your perspective,” he says.

Shulman, who calls himself “the least medically knowledgeable person you might encounter,” was fortunate that his wife is a retired nurse and his two stepchildren are doctors. In addition, his wife is a cancer survivor. “She did a lot of the research, helped me identify those things that were important for me to know, and pushed me to do some reading,” Shulman says. At every step, the couple took the time to learn what they could and to carefully consider each decision they needed to make regarding his treatment.

Eventually Shulman settled on his doctor’s recommendation to undergo a course of chemotherapy and then have his bladder removed. “I was comfortable with the numbers,” he says. “The urologist said this protocol had an 80 to 85 percent success rate.”

Shulman managed to continue working during chemotherapy, which stretched over 12 weeks. He would receive each infusion on a Wednesday, stay home from work on Thursday, and work a partial day on Friday. “As a management executive, I’m fortunate that if I didn’t get to my work during work hours, I could do it at night or on the weekend,” he says.

From the start, Shulman was open with his staff about what he was going through, and he enlisted their support. “I told them that under chemo, I might become forgetful about things that might affect them and their work,” he says. “I told them that if I was forgetting something or doing the opposite of what I told them I would do, it would be OK to tell me, so that I wouldn’t screw things up.”

Shulman fared relatively well on the regimen, which had to be somewhat modified due to considerable swelling. Luckily, he never experienced nausea. “There was a new anti-nausea drug they gave me through my IV before administering the chemo,” he says. “For me, that stuff worked, and from what I could tell, it worked for other people, too.”

After chemo, Shulman had surgery, which was an extensive procedure. Along with his bladder, his prostate gland was removed. He spent 10 days in the hospital recovering.

Post bladder removal

Soon after getting the go-ahead, Shulman was up and about. “After surgery, the surgeon told me to walk, walk, walk. I walked in a circle around the hospital corridors,” he says. “A woman who was being treated for leukemia was told the same thing, and she walked along with me. We crossed each other’s path many times a day. It helped me to realize, whether it’s bladder cancer or some other cancer, you’re not alone.”

Prior to surgery, Shulman had spoken with other bladder cancer patients about their treatment decisions and the different approaches to replacing the bladder’s function, including the use of internal and external pouches to collect urine. “After listening to two other guys and the urologist, we decided that the best thing for my lifestyle was an external pouch,” he says. So the surgery included a urostomy, the creation of a stoma, over which to place the plastic container. “I don’t regret the decision or second-guess it,” he says. “I’m careful in how I dress and cover myself. I can use a public restroom and empty out the pouch and then go back to work. It’s not really different from urinating at a urinal, and it takes about the same amount of time.” (Some internal pouches require the use of catheters to drain urine.)

Since the surgery, Shulman’s pouch has leaked a half dozen times, when it became too full. But he has experienced no serious problems, such as infection, which he avoids by drinking at least 64 ounces of water a day.

The system has at least one silver lining: Shulman connects to a larger night bag at bedtime, which allows him to sleep through the night. “I get the best sleep I’ve had in 15 years!” he quips.

The removal of his prostate has affected Shulman’s ability to get an erection, though. “I was told that that could be the collateral damage, and it was,” he says. “The urologist has given me ideas about things that might help, and we haven’t used them, but I know that they’re out there and know he will prescribe what I need if that becomes important. The important thing is that we’re together and enjoying life.”

A couple closer than ever

Shulman says his illness has caused him and his wife to become closer than ever. “She was my rock,” he says. “We have an emotional togetherness that is probably tighter because of what we went through.”

Shulman is hopeful that his cancer journey will soon be a thing of the past. Every year since his surgery, he has gotten a CT scan, and every year he has gotten a clean bill of health.

Shulman believes it’s important to see the most up-to-date specialists when facing a diagnosis of bladder cancer. “One of the things my wife encouraged me to do was find a urologist associated with a university and medical school,” he says. “There’s a greater likelihood that that provider will have heard about cutting-edge treatments.”

He urges new patients to be positive and realize that cancer treatments have improved significantly over the last five to 10 years. “Things are happening very quickly,” Shulman says. “Outcomes are getting better. Bladder cancer is not a death sentence, it’s an inconvenience.”