John’s Story: “In a matter of seconds, your entire world can shift.”

An unexpected health concern led John Morley, an active, outdoors-loving man, down a path he never anticipated. What began as a minor symptom soon unfolded into a life-changing journey marked by startling discoveries, difficult decisions, and unwavering resilience. Supported by family, expert care, and trusted resources, John found strength in the face of uncertainty and hope where it mattered most. This is his story:

My journey with bladder cancer started quietly, almost unnoticeably, in November of 2021. I noticed a small trace of blood in my urine, just a little pink tint. At first, I honestly didn’t think too much of it. I’ve always been an active guy. I love to hike and jog, and I thought maybe I had just strained something. I figured it would go away in a few days.

But it didn’t. It gradually became more noticeable over the next few weeks. I reached out to my primary care doctor, and he suspected a urinary tract infection. It sounded plausible, so he ran a urine culture. When the results came back, he called and said, “Well, it’s not an infection. I’m going to refer you to a urologist to investigate further.” That was the first moment I felt a jolt of concern. I had no idea what I might be walking into.

In December, I met with a urologist in Manassas, Virginia. He scheduled a cystoscopy, which is when they use a scope with a tiny camera to look inside your bladder. I was awake during the procedure and watching the screen as it happened. Everything seemed routine until suddenly, the doctor said, “Oh yeah, that looks like cancer.” Just like that. So casually. I sat there stunned, trying to process what he had just said. I remember thinking, “Did he really just say that out loud?” Almost immediately, he seemed to realize how jarring it sounded and added, “We’ll need to take a biopsy to be sure.”

Those next few days were filled with a lot of anxiety. I tried not to jump to conclusions, but it’s hard not to go down the rabbit hole once you hear the word “cancer.” When the biopsy confirmed it was indeed a tumor, the doctor scheduled a TURBT, Transurethral Resection of Bladder Tumor, to remove it and get a better look at what we were dealing with.

The follow-up appointment after surgery brought a bit of relief. The initial diagnosis was T1, non-muscle invasive bladder cancer. That was a huge distinction. I had already done some reading by then and knew that T1 meant the cancer hadn’t invaded the muscle wall of the bladder. It was serious, but it was treatable with bladder-sparing options like intravesical therapy, specifically, BCG treatments. My wife and I both felt cautiously optimistic.

My urologist wanted to be thorough, so he sent the pathology slides and surgical notes up to Johns Hopkins for a second opinion. That’s how I ended up meeting Dr. Max Kates (editor’s note: Dr. Kates is also on BCAN’s Scientific Advisory Board). He’s one of the leading experts in bladder cancer and someone who’s done a lot of work with BCAN. We drove up to Baltimore to see him in person. He was reassuring and professional. He told us that based on everything he saw, minus the finalized pathology, he agreed with the diagnosis. It looked like non-muscle invasive bladder cancer. He said it was fine to continue with treatment locally, which was a relief. Driving back and forth to Baltimore from Northern Virginia isn’t easy.

That night, my wife and I went out to dinner near the Inner Harbor. We even celebrated a little bit. Not because I had cancer, of course, but because we believed we had caught it early, and we had a clear path forward.

The next day, everything changed.

I had just pulled into my driveway when my phone rang. It was Dr. Kates. He asked if I was driving, and I told him I had just gotten home. Then he told me the pathology report had just come in. He said, “I’m sorry, but it’s definitely muscle invasive and highly aggressive.” I was completely blindsided. I had just spent the night feeling hopeful, and now I was being told I needed chemotherapy and major surgery.

Within the span of that six-minute phone call, everything flipped. No more BCG treatments. No more talking about keeping my bladder. The plan was now chemotherapy followed by radical cystectomy and prostatectomy, removal of the bladder and prostate.

I won’t lie, hearing those words felt like the floor dropped out from under me. I was scared. My wife was scared. There’s just no preparing for that kind of news. But within a few days, we were meeting with a medical oncologist. Everything moved quickly. I started chemotherapy—cisplatin and gemcitabine—for two months. I had a pretty good response to it, but it wasn’t easy. Chemo is grueling. It wears you down physically and emotionally.

During this time, we also discovered a large mass on my spleen during a routine CT scan. That was a whole new curveball. Spleens aren’t easy to biopsy without risk, so the decision was made to remove it during my cystectomy. Just add that to the list, right?

On June 22, 2022, I had my surgery at Johns Hopkins. Dr. Kates removed my bladder, prostate, and spleen in one long, complex procedure. When I woke up in the hospital afterward, I had tubes coming out of me, and I felt like I had been hit by a truck. I spent about eight days in recovery at the hospital before I was able to go home.

The next phase was all about healing. I had to learn how to live with a urostomy bag, something that took some getting used to. Hopkins gave me a spreadsheet of past patients who had chosen different urinary diversions, and I talked to several of them before making my decision. I went with the ileal conduit and urostomy, and it’s been manageable. Not ideal, of course, but manageable.

Throughout all of this, my wife was an incredible source of support. She works for ASTRO—the American Society for Radiation Oncology—so she’s familiar with cancer treatment. She helped guide a lot of our decision-making, and her strength kept me grounded when I felt like I was losing control.

BCAN was another lifeline. When I first saw Dr. Kates, he handed me a bunch of BCAN brochures and guides. I read every word. Being informed made a huge difference. The fear didn’t go away entirely, but it became more manageable. Knowledge gave me power.

Now, almost three years later, I’m doing well. I go in for regular surveillance, ultrasounds, blood work, and so far, everything’s come back clean. No evidence of disease. I’ve gotten back to a more normal routine. I still love hiking, and I’m back out on the trails, enjoying nature and moving forward.

I think back to that phone call in my driveway a lot. How in a matter of seconds, your entire world can shift. If I could go back and talk to myself on that day or speak to anyone just beginning this journey, I would say this: Don’t lose hope. Be your own advocate. Ask questions. Do the research. Surround yourself with people who care. And lean into organizations like BCAN that are there to help you through every step.

20 Years of Impact: 20 Voices of BCAN

For two decades, the Bladder Cancer Advocacy Network (BCAN) has been a beacon of hope, support, and advocacy for patients and their loved ones. As we celebrate 20 years of collective progress, we honor the voices that have shaped this journey—those who have faced bladder cancer with resilience, and those who have provided unwavering support.

Through our 20 Voices initiative, we are sharing powerful personal stories that highlight the impact of bladder cancer and the strength of our community. These voices reflect the challenges, triumphs, and hope that define BCAN’s mission for better todays and more tomorrows for all those impacted by bladder cancer.