Richard’s Story: “Everyone deserves the resources and support to make informed decisions.”

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. 

The life of Richard Zera, a seasoned surgical oncologist, took an unexpected turn when he was diagnosed with a rare and aggressive form of bladder cancer. After decades of treating patients, he suddenly found himself in their shoes—navigating the challenges of being on the receiving end of care. His journey through diagnosis, treatment, and recovery gave him a profound new perspective on compassion, resilience, and the importance of support. This is Richard’s story:

In August of 2023, I experienced something that would forever change my life. I woke up in the middle of the night, and though it was dark and I didn’t have my glasses on, I noticed that the water in the toilet was much darker than it should have been. I didn’t think too much of it at first,  but then later that month, I saw bright red blood in my urine, and that really scared me. I knew exactly what that could mean, but I tried to convince myself it could be something else.  Unfortunately, that wasn’t the case.

It was a shock to be diagnosed with a rare type of bladder cancer, osteoclast-rich undifferentiated carcinoma, with a sarcoma element as well. It’s a bit ironic to think that, after practicing as a surgical oncologist for 35 years, I would be diagnosed with such a rare tumor.  But the irony didn’t make it any easier to accept.

What hit me hardest wasn’t just the diagnosis—it was the realization of how difficult it is to be a patient. As a doctor, I had always been on the other side, caring for others. But suddenly, I was the one who needed care, and it was a completely different experience. I had always tried to practice with compassion, but being a patient taught me so much about the process from a whole new perspective.

I had been planning my retirement for November 2024, but then this diagnosis came at a time when I was looking forward to the next chapter of my life. I had always joked that I didn’t want to be the guy who worked until the very end and then suddenly fell over dead—yet here I was,  facing this challenge just as I was preparing to retire.

At first, I tried to be a good patient. I reached out to a urologist outside my institution, but the wait time for an initial evaluation was four weeks. With blood in my urine and no immediate attention, I started to panic. When I did get in, I was given a specimen cup, and when the medical assistant saw there was no visible blood, she gave me a look that made me feel like I  was wasting their time. Eventually, I saw a urologist who did a cystoscopy and suggested a more formal resection to get a diagnosis. He mentioned it could be cancer, which made my heart drop.

When I went to the desk to schedule the procedure, I was told that the first available appointment would be three months out. This was completely unacceptable to me. Thankfully, I  reached out to a friend who was a urologist at my institution, and within a week, I was in the OR for a transurethral tumor resection. If I hadn’t been a physician, I may have waited those three months and missed the opportunity for early diagnosis and treatment. It struck me how much the average person, without medical knowledge or connections, would have to endure in this process. The lack of urgency was something I hadn’t realized was so common.

My experience didn’t stop there. I had a CT urogram, and the radiology tech, who had no idea who I was, treated me with the utmost professionalism. It was a pleasant reminder that there are many health care providers that make the patient experience excellent. I later got a call from my friend, the radiologist, who, knowing my background, was very direct with me. He said the CT  didn’t look good—it showed not only a tumor but thickening in my bladder wall and fat stranding, which likely indicated invasive cancer. As a doctor, I could interpret that information, but getting it as a patient was terrifying.

Despite all the alarming results, my urologist reassured me, saying the CT result was likely due to my enlarged prostate. That provided some temporary comfort, but when it came time for the resection, the news was far from reassuring. My urologist came out of the procedure and told my wife, “I’ve never seen anything like that,” which was not what you want to hear after surgery.

That was the beginning of my journey as a patient, and it changed everything. Every step of the way was an education on what it truly means to be in the healthcare system—not as a provider but as someone on the receiving end of care. It gave me a new level of empathy for the patients. 

I had treated for decades. Through it all, I’ve learned that being a patient is one of the most challenging roles anyone can face. As a retired surgical oncologist, this journey has given me a profound understanding of both sides of the medical world.

My experience with the diagnosis and treatment process felt surreal. I felt I was in capable hands at my home institution. However, the longer it took for my pathology results to come back,  the more I understood how unusual my tumor was. Eventually, the pathology was sent to the University of Minnesota, then to Mayo Clinic for another opinion. The consensus was clear: I had an aggressive tumor, and I needed a radical cystectomy.

This was hard for me to hear. For years, my work as a surgical oncologist focused on finding ways to minimize treatments, and here I was, facing a recommendation for such an aggressive procedure. I went through the stages of denial and bargaining quickly. A consult at the Mayo  Clinic resulted in a recommendation for open radical cystectomy. I started reaching out to other experts in the field, emailing authors of studies on bladder-sparing treatments, hoping for an alternative. To my surprise, one expert, Dr. Matthew Galsky, responded. He reviewed my case and suggested having my pathology reviewed at Memorial Sloan Kettering Cancer Center (MSKCC) in New York City. , and based on the unusual nature of my tumor, he suggested that a radical cystectomy was likely necessary.

Despite this advice, I continued to seek other opinions. I met with a medical oncologist friend who helped guide me through the process, exploring options like genetic testing and possible neoadjuvant therapies. Meanwhile, my wife insisted I go to MSKCC, given their reputation for handling complex urologic cancers. There, I met Dr. Alvin Goh, a leader in robotic surgery. He recommended further staging to assess my pelvic area and lungs.

Dr. Goh’s thorough approach gave me confidence. For the first time, I felt like I was being guided through the process with careful consideration. At the same time, I was still facing a decision: Should I wait several more weeks for robotic surgery with Dr. Goh or proceed with open surgery at Mayo Clinic in the next week? I live in Minnesota, so proximity mattered, and the idea of delaying treatment remained a frightening prospect. My daughter, a physician,  helped us work through the decision by creating a “pros and cons” list. It was a simple yet incredibly effective way to process everything.

In the end, I felt like I was truly in the right hands at MSKCC, with a team that wasn’t just rushing to surgery but exploring all possibilities to ensure the best outcome. It was a difficult, stressful time, but one that taught me a lot about being a patient. The whole experience was incredible— from the thoroughness of Dr. Goh’s team, the fantastic nursing care throughout my stay, and the sense of being allowed to be “just” a patient rather than a surgeon. My surgery, done robotically,  was a success; no spread of the cancer was found, and I was discharged just four days later with a healthy urostomy.

In the aftermath, I became involved in a support group for bladder cancer patients at MSK. The group was invaluable in helping me cope with the significant changes to my body and provided therapeutic support. I also realized that accepting my new normal wasn’t easy, but it has come with time and reflection.

A major turning point for me was receiving great news during follow-up scans, which showed no signs of metastatic disease. Now, over 16 months post-surgery, I’ve started to believe in the positive prognosis Dr. Goh gave me, despite my tumor’s unusual histology. I feel lucky to be doing well and appreciate that I didn’t need further treatments like chemotherapy or radiation.

Through the support group, I also learned about BCAN, which has been another source of support. It’s been helpful to read about other patients’ experiences. I’ve even spoken to some new patients through their Survivor to Survivor program, sharing my story to help them navigate their journeys.

As I reflect on this experience, I emphasize the importance of being well-informed and supported as a patient. The road to treatment is long and difficult, and having a strong support network, whether it’s a social worker, nurse, or a loved one, is crucial. Ultimately, I’ve realized how much luck plays a role, but it shouldn’t be the only factor in someone’s recovery. Everyone deserves the resources and support to make informed decisions.