Brian’s Story: “You made the brave decision. You did the right thing.”

After quietly struggling with subtle symptoms that were easy to dismiss, Brian Billings received a shocking bladder cancer diagnosis that would change his life. What began as routine doctor visits and small procedures quickly escalated to major surgery and an aggressive variant he hadn’t expected. Navigating treatment during the height of COVID, he faced fear and uncertainty but discovered resilience he never knew he had. Years later, he has turned his experience into purpose, building a strong support network for others facing bladder cancer and finding strength in community, advocacy, and hope. This is Brian’s story:

Looking back, the hardest part of my diagnosis was realizing how quietly the symptoms crept up on me. I didn’t have blood in my urine or anything that seemed alarming—just increasing difficulty urinating. I first mentioned it to my doctor a full year before my diagnosis. During my regular physical, all my bloodwork came back fine, and when I said, “It’s getting harder to pee,” my primary care doctor, someone I’d seen for 30 years, told me, “That happens when you get older.” I was 54 at the time, and I thought, well, welcome to aging.

Over the next year, things got worse, but I kept brushing it off until my next physical, when I finally insisted something was wrong. I was referred to a urologist, who assumed I was too young for bladder cancer. He believed my issue was an enlarged prostate and performed an in-office procedure to expand it without ever doing a cystoscopy. It didn’t help. Two months later, I was in even more pain. When I returned to the urologist, he finally performed a cystoscopy and, just like that, said, “You have cancer.”

I went numb. It felt surreal. He mentioned I’d be getting BCG treatment and said not to worry. This was during the height of COVID in 2020, which made every appointment more stressful. Still, I completed six rounds of BCG feeling cautiously optimistic. My diagnosis was non–muscle invasive, stage T1, but aggressive.

After two TURBT procedures to remove a relatively large tumor, I decided to seek a second opinion. A friend referred me to Dr. James McKiernan at Columbia, then the Chief of Urology there. I immediately felt confident in his care. After another TURBT, he told me news I wasn’t expecting: I needed to have my bladder removed. I had gone in thinking the BCG worked, and instead, I was facing major surgery.

Further testing revealed I had an aggressive variant called plasmacytoid carcinoma, known for spreading quickly and burrowing into muscle. Dr. McKiernan told me, “If we act now, I believe we can stop your cancer completely. You don’t have time for chemo beforehand. We’ll decide after surgery if it’s needed.” Hearing that urgency was terrifying. My surgery was scheduled just five weeks later, in May 2021, while hospitals were still partially shut down due to COVID.

In the weeks leading up to surgery, I tried to learn everything I could, but Googling bladder cancer and plasmacytoid variants only made me more afraid. I spoke to two people who had undergone neobladder surgery, and their stories gave me my first glimmer of hope. Still, I felt like Frankenstein’s monster facing the unknown. I chose to have a neobladder constructed and trusted my surgical team completely.

When I woke up from surgery, I looked down at all the tubes and thought, oh my God, why did you do this to yourself? But within minutes, that fear turned into resolve. I told myself, “You made the brave decision. You did the right thing.” And from that moment on, I never looked back. The recovery was tough, especially since no visitors were allowed due to COVID, but being alone forced me to grow stronger. My mother and sister took turns staying with me for two weeks when I returned home, and their care was invaluable.

Now, years later, I can say that I’m living my best life. I became involved with the Bladder Cancer Advocacy Network (BCAN) after my surgery, thanks to Lydia Saravis, who leads the Neobladder Support Group. She encouraged me to check out BCAN, and soon I was all in and even organized the BCAN New York City “no one walks alone cancer walk” in May for three years, which is now run by Sandy Weicher. I urge everyone to participate in the community whenever possible. I always say I found my greatest strength through communication with others. I am proud to say I founded, with BCAN’s kick off assistance, the New York City Bladder Cancer Support Group, and every month it brings me strength through helping support others in their journey. 

Through BCAN’s Survivor 2 Survivor program, I now speak with others facing surgery or diagnosis. I always lead with optimism, because I know what it feels like to be terrified. My advice to newly diagnosed patients is simple but powerful: Stay calm and take one step at a time. Bladder cancer is a long, stop-and-start process filled with anxious waiting. The best thing you can do for yourself is to find peace wherever you can, through meditation, yoga, or support from others who understand.

I’m proud to work alongside BCAN and witness all the incredible progress made in research, awareness, and patient support. When I think about how far we’ve come in just two decades, I feel grateful, not only for my own health, but for the strength and connection this community brings to so many of us. You’ve got this!