Ron’s Story: “It was shocking, surprising and disturbing”

It was nine years ago when I was diagnosed with bladder cancer. The first symptom I noticed was shocking, surprising, and disturbing: blood – in my urine. I contacted a urologist at my hospital, Morristown (NJ) Medical Center. At our first meeting, he performed a TURBT (trans urethral resection of bladder tumor) and saw that there was a tumor the size of a golf ball in my bladder!  It must have been there for quite some time before any symptoms showed up. When he said, “We may have to remove your bladder,” that was shocking news to get on my first visit with him.  Fortunately, he did remove the tumor during the procedure. Unfortunately, as he removed the tumor, the bladder was punctured, which led to some urine leaking into other parts of my body, which was very painful. So, he later inserted a catheter, taking care of the problem until the puncture healed and my bladder was made whole again.

Since that time and for several years after, my urologist would perform a cystoscopy to look for any new tumors. Unfortunately, tumors did continue to appear, prompting him to perform additional resections. He often called the tumors benign or superficial, which was good to hear. That continued for about seven years. At one point, I had BCG treatments.  Though he called it “maintenance treatment,” I unfortunately did not understand what that meant so I discontinued the BCG after only two sessions. I thought, “Well, once or twice is enough,” but unfortunately, he and I hadn’t talked about the need to continue with regular treatments.

Several months after those two BCG treatments, he looked at my bladder again and saw that a tumor had gone into the muscle layer behind the bladder wall. It shocked him and surprised me.  He said, “You’ll need to have your bladder removed” and suggested I enter a clinical trial during which chemotherapy would shrink the tumor, followed by bladder removal (a radical cystectomy). About the same time, I contacted the Memorial Sloan Kettering Cancer Center. I interviewed people there and decided that I felt very comfortable and assured by working with the doctors at Memorial Sloan Kettering.

At MSK, I continued with an oncologist and a new urologist. I entered a Phase II trial with both chemo and immunotherapy. I am very happy with my choice to use MSK. I had excellent care throughout my therapy cycles, even though it was necessary to have my bladder removed as part of the trial protocol. In late June 2020, after four treatment cycles, I had a radical cystectomy (with ileal conduit diversion).  Everything went well with the surgery, and I’ve felt very healthy since then, with no evidence of recurrence of the cancer.

I was very happy with the support system when I was going through my journey with bladder cancer. My medical team was excellent, and I was fortunate to participate in BCAN’s “Survivor to Survivor” (S2S) program, where I met others who had bladder cancer and had faced similar surgeries.  It was particularly helpful to speak with these folks prior to my treatment and surgery, so that I could better understand what to expect and to be prepared for the recovery period. 

As I wanted to share my journey with others, I contacted BCAN and enrolled in their S2S program, eventually speaking with about eight other bladder cancer patients.  It felt good to help others, but I also felt helped; it was therapy for me. I knew what I went through and how important it would be to share my story with others. 

Recently, I was introduced to a gentleman named Chris, who lives in Manhattan, who was recently diagnosed with bladder cancer. Three weeks after his diagnosis, he had to have his bladder removed; the entire process was rather scary for him. When I spoke with Chris, I could tell he wanted some reassurance. I chatted with him a couple of days before his surgery and visited him at the hospital a few days following his cystectomy. He was having issues with soreness and getting around, but he felt helped after our chats. We’ve spoken many times since then, and I am happy we created this bond.

I am grateful to be associated with the Bladder Cancer Advisory Network, where good support for me – and for others – can be found.  BCAN is a Beacon of Hope.