Jon’s Story: It’s a Marathon, Not a Sprint

Two years ago, at the age of 42, I faced a life-changing diagnosis. Despite experiencing uncomfortable symptoms for six months, it was only after noticing discoloration in my urine accompanied by blood clots that I decided to seek medical attention. Due to the pandemic, I hesitated to see a doctor, but I finally made an appointment for my annual physical to discuss my symptoms with my primary care physician. Little did I know that this was the beginning of a journey that would test my strength and resilience.

While speaking with my primary care physician, I assured her my symptoms were due to kidney stones. I have had them, so I was sure that was the cause. She referred me to a urologist to get it checked out.

The day for me to see the urologist came and I certainly did not think the day would go the way it did. Once I went over my symptoms with the urologist, he immediately took me to the ultrasound machine to examine my bladder. I will never forget the look on his face. I could tell he was taken aback by what he was seeing. There was a mass on my bladder the size of my fist, and I had no idea what it meant. He took a picture of the ultrasound and said, “This is a textbook case. I will show this to my nurses, so they know what to look for.” Again, I was clueless. The only time I had seen an ultrasound was for my two children. He showed me the ultrasound, did some measurements, and said, “I need to go in and take a look at it.” Well, what does that mean?

I was taken into a third room, an exam room to receive a cystoscopy. I did not know what to expect and I was not prepared. This was not how a routine visit for a kidney stone was supposed to go. The urologist and the nurse performed the procedure and discovered several masses in my bladder. Still not thinking it was a big deal, I listened to the doctor tell me this is something we must take care of. He said, “So I’m going to refer you to get some blood work done. We’re going to do another CT to ensure that there’s nothing outside of the bladder, and then I’m going to get you slated for my next available appointment.” Things were moving fast. I went in on a Thursday, had my second CT scan done on Saturday, and that Tuesday was my TURBT procedure.

Going in for my procedure, I was still in denial that something was seriously wrong. There was no way I had cancer. I tricked myself into thinking this was still no big deal. Before the surgery, my surgeon reviewed my scan and noticed a ton of tumors sitting in my bladder. He told me they would remove the tumors and send them out for further observation. My procedure went well; recovery was easy. Five days went by, and the results of my pathology returned.

I was sitting in a room and waiting to hear the results and that had me on edge. Soon as my surgeon entered the room, my immediate question was, is it cancer? His exact words were, “Oh, yeah, yeah, it’s cancer.” It took time for the news to register with me, but he continued with the fact that the good news was that it is low grade, and the bad news was the likelihood that it would come back was pretty high. It was hard for them to get all the tumors out because there were so many. So, I was set up to go back quarterly for a cystoscopy.

My diagnosis was in February/March of 2021 and in the two years since, I have had seven TURBT procedures, two chemo washes, and only one clear cystoscopy. Every other time they either found something, or there was stuff that looked like scar tissue, but it had to be investigated to see if anything more drastic was needed. So, it was going under full anesthesia, having a TURBT for things that he described as pencil eraser-sized nodules. They were all low-grade, papillary, non-invasive, and non-muscular invasive. I thank God that I did not have something more substantial. It was not until this past fall, when I had my sixth TURBT, my doctor did more exploring into my bladder and noticed a mass in my right ureter. Because he was uncomfortable exploring that area, he referred me to the Cleveland Clinic to see Dr. Kaouk.

Meeting with Dr. Kaouk was a changing point for me. My first appointment with him was in November of 2022; my latest procedure was in January 2023 to remove the tumors from my right ureter. Luckily for me, they are all low-grade papillary. On March 20th, I had surgery to resect the right ureter below the affected point and do a resection of my bladder. My hope is that we are getting to the root of this issue and can move towards having clear and less frequent cystoscopies.

I am grateful for my wife, kids, family, and friends because they have been a fantastic support system for me along my journey.

UPDATE:

On April 17, 2023, a few weeks following his surgical procedure, Jonathan provided an update to BCAN.

Jonathan stated the procedure went well, but pathology returned high-grade on the removed tissue. The margins were clear. He thought that removing the source would avoid the repetitive TURBTs. “Unfortunately, I had my follow-up, and even my untrained eye could see several cancerous clusters as the cystoscope entered the bladder.” He is currently waiting for the scheduling of another CT/X-ray and TURBT. Because of his now high-grade diagnosis, he will have his first round of BCG treatments shortly after.

Jonathan shared his story as well as the update in the hopes that other patients who might read his story would see that bladder cancer is a marathon, not a sprint, and others would know setbacks are just part of a larger story Jonathan feels that all patients need support in order to continue pushing forward.