Info-Armed for Bladder Cancer

Patient Expert
Nicole Bowman-Layton

When Karl Pritchard found blood in his urine in February 2014, he went to see his family doctor. He was told the problem could be one of two things—a bladder infection or cancer. The 81-year-old retired U.S. Navy man residing in Edenton, North Carolina, was put on antibiotics. But when the bleeding persisted after a week, Pritchard feared the worst. “The first thing I thought was, ‘It couldn’t be me. Other people get cancer. Other people get in car wrecks. Other people have drug problems. It’s never me,’” says Pritchard, a native of Brooklyn, New York, who was stationed at bases in San Diego, Memphis, and Key West, among others, before working in the computer industry. “‘Cancer’ was that bad word that meant automatic death, and I was very scared at first.”

“The first thing I thought was, ‘It couldn’t be me. Other people get cancer. Other people get in car wrecks. Other people have drug problems. It’s never me,’” says Pritchard, a native of Brooklyn, New York, who was stationed at bases in San Diego, Memphis, and Key West, among others, before working in the computer industry. “‘Cancer’ was that bad word that meant automatic death, and I was very scared at first.” Testing with a urologist confirmed that he had advanced bladder cancer.

Pritchard quickly turned his fear into action. “I did a tremendous amount of online research, and I felt a lot better because I learned a lot more,” he says. “Websites, including BCAN.org (Bladder Cancer Advocacy Network) and Inspire.com, prepared me well for the surgery and for every- thing that followed.”

Because Pritchard’s cancer had spread beyond his bladder, his oncol- ogist recommended that the organ be removed, and surgery was sched- uled three months after his diagnosis at the University of North Carolina (UNC) Medical Center in Chapel Hill. Surgeons created a stoma, or open- ing, on the abdomen to connect with his urinary system and allow urine to be released from the body into an external pouch.

Pritchard will never know how he developed bladder cancer. But he served in Vietnam in the early 1960s, and there is some evidence that ex- posure to chemicals used in the war at that time, such as the chemical defoliant Agent Orange, may have triggered health problems—including bladder cancer—in returning veterans.

Preparation counts

Pritchard’s adjustment and his recov- ery could have been very difficult, he says, but he read up on his condition and was able to anticipate and avoid many of the challenges that some pa- tients face, such as leakage from the external pouch and skin irritation. For instance, it’s important to wash the skin around the stoma with warm wa- ter and dry it well; avoiding products that contain alcohol is also key, as they can cause the skin to become dry.

“It would have been hard to get used to, except I’d been checking with the online community, and a tremendous number of people have the very same thing,” Pritchard says. “Plus, the hospital at UNC had a very good training session with the stoma nurses. I came home fully prepared.”

In fact Pritchard, who is single, was so prepared that he decided he didn’t need home nursing care; after a week, he sent the nurses home.

“If I hadn’t been studying online to learn all the little pitfalls and prob- lems that I would see or run into, it would’ve been terrible,” Pritchard says. “But I knew what was coming, and I was able to handle everything. I live by myself, and I was able to take care of everything on my own.”

Pritchard’s treatment wasn’t over, however. In addition to surgery, he was told he needed chemotherapy to kill any remaining cancer cells. While researching his condition, he learned about immunotherapy, a type of treatment that uses the body’s own immune system to fight cancer.

Due to a problem with one of his kidneys, Pritchard was unable to have chemotherapy. But when he asked about immunotherapy, he discovered that it was an option for him, and he enrolled in a clinical trial testing a new drug. “I found out I was the last person in the world to get into this study,” he says.

Success with immunotherapy

Pritchard started the drug in February 2015, a year after his diagnosis, and got infusions every three weeks. The good news: “I had an immediate response,” he says. “The tumors that they had seen on the CT scan had shrunk considerably. By the fourth scan, which was eight months after treatment started, they couldn’t find a trace of anything. I felt good. I knew I was going to live.”

Although Pritchard did well on the drug, he did have side effects, including an itchy rash and fatigue. “I would be sitting at home and thinking about doing something in the yard,” he says. “I’d go outside and start, but after five minutes, I would have to come in and sit down.” The fatigue subsided in the second year.

Pritchard’s doctor told him that cancer cells can hide in bone marrow and come back someday. As a result, Pritchard says, he agreed to stay in the study to help researchers gather long-term data.

After three years on the drug, however, Pritchard started having bouts of intense pain in his lower back and beneath his ribs on the right side. “This drug teaches the immune system to look for certain markers on tumors and on any cell that has these markers,” he says. “If a cell has this marker, the immune system will go in and kill that cell, because it assumes it’s a tumor cell, and 99 percent of the time it is. The problem is a lot of the good cells in your body have the same markers, and there’s a danger that the immune system can turn on your body.” The doctors determined his kidney was being attacked.

He had episodes of pain in February and March, and then again in July, so he stopped taking the immuno- therapy drug and started on a high dose of the corticosteroid prednisone to calm his immune system. The drug he’d taken for his cancer was subsequently determined to be safe to take for no more than three years.

“If I had stopped the trial before the beginning of 2018, I would not have any problems,” Pritchard says. “But I don’t regret it because the people running the trial saved my life, and they need these sort of data to know how safe the drug is.”

Info matters

Pritchard has tapered off the steroid now, and he is still cancer-free. He plans to do some camping in his small motor home and to be as active as possible for as long as he is able.

His advice to other bladder cancer patients: “Educate yourself before you even go to the doctor,” he says. “And when you see the doctor, go in with a list of questions to ask. If you don’t ask, the doctor probably won’t think to tell you. I wouldn’t have known about immunotherapy if I hadn’t asked about it. That’s why I’m still here.”