Damon’s Story: I Did Not Fit the Profile of Your Typical Bladder Cancer Patient

I was diagnosed with bladder cancer in October 2020 at the age of 58 but experienced symptoms two years before the diagnosis.

On New Year’s Day in 2018, I noticed that I was passing what looked like blood clots. I just thought maybe I had too much champagne, or I was dehydrated.  I never really saw actual blood, just clots. I ignored my symptoms as many people do, but during an annual physical in December 2019, I casually mentioned seeing the blood clots in my urine to my physician, and he ordered a bladder ultrasound and urine tests. The ultrasound and urine test were negative, but my doctor still referred me to a urologist.

I met with the urologist in February 2020, and he ordered another ultrasound and urine test, which were negative. He recommended that I have a cystoscopy. I had never heard of a cystoscopy and did not think there was anything to it. I asked the doctor, “What’s that procedure look like?” After he described it to me, I told him it sounded barbaric. I could not believe in 2021 that the only definitive way to examine a bladder was so invasive. I told him I would schedule it, but the Covid-19 pandemic hit, so I used the pandemic as an excuse to delay my cystoscopy.

I decided to change primary care physician and during my annual physical in May 2021, she saw in my records my scheduled cystoscopy. We discussed the procedure; I gave her my opinion of the exam and she recommended that I have the cystoscopy performed as an outpatient procedure. She said, “You’re not going to feel anything. I said, “Okay, great.” I delayed the procedure several more times, intending to have it at the end of the year. However, in August, I applied for additional life insurance. The underwriter saw that my cystoscopy was still outstanding and required that I complete the exam before approving my application for additional life insurance. At that point, I contacted the urologist to schedule the procedure, still thinking there was not anything wrong.

On October 19, 2020, I had my cystoscopy, and the urologist told me he removed a 3cm tumor and sent it to the lab for analysis. My post-op seemed to go well until the next day; I began experiencing complications. Apparently, the area where the tumor was removed was still bleeding, and a large number of blood clots developed, making it difficult to urinate. I went to my urologist, but the nurse was unable to void my bladder. I was immediately admitted into the hospital and taken to the operating room, where they were able to stop the bleeding and remove the blood clots. About a week later, I received a phone call from my urologist that no one wants, “You have bladder cancer.”

I was diagnosed with non-invasive high-grade papilloma urethral carcinoma, Ta1, which was about 3 centimeters.

I was shocked to hear I had cancer. I did not fit the profile of your typical bladder cancer patient. I am a 59-year-old Black male. I have worked in the financial services industry my entire career. I have never been exposed to any hazardous chemical that contributes to bladder cancer and never smoked or used illegal drugs. I live a very active lifestyle and have always eaten very healthy. While I do enjoy drinking wine, I have never been considered a “drinker.” I am extremely active and a triathlete and lead a healthy and active lifestyle.  I naturally had questions. Hearing that I had cancer surprised me. 

My urologist seemed annoyed by my questions and seemed to want to rush me off the phone. I asked about the treatment, and he said, “Well, we’ll treat it with BCG for a few weeks and see how it goes,” and hung up. I then changed urologists because I did not feel it was right to hear that I had bladder cancer over the phone and that his responses and attitude were poor.  I told my wife about the diagnosis and she was devastated. I spoke with my brother, a doctor, and he forwarded my pathology results to a colleague who confirmed the diagnosis and BCG as the correct treatment – but longer than six weeks.

I found a new urologist with an outstanding medical background, more experienced, and specializing in bladder cancer. It also helped that she is an avid runner, so I knew she would understand my need to be able to return to training as soon as possible.  My wife and I met with my new urologist, and we had a very direct and transparent conversation, and I felt like she genuinely cared. She listened to me and provided her philosophy and approach to cancer and my specific diagnosis and provided an aggressive game plan.

During my visit, my urologist told me that she usually treated bladder cancer aggressively and recommended a rescission TURBT with Blue Light Cystoscopy along with Gemcitabine followed by BCG treatment following SWOG protocol for 36-48 months. I have responded well to my BCG treatments without minimal side effects. I’ve only experienced flu-like symptoms later in the afternoon after getting the instillation and of course than is some blood in my urine that day, but it’s faint. The following day I’m feeling like myself again. As of December 4, 2021, I have been NED for one year and still responding well to treatment.

It has not been fun and caused me to put my triathlons on hold. I raced this year (2021) and placed third in my age group and 28th out of 82 overall. My training has been interrupted, but I am feeling great physically and continue to train.

When you get a diagnosis like this, you go online to research your diagnosis and treatments. I found BCAN while researching bladder cancer. I contacted BCAN and spoke with Morgan Stout. Morgan matched me up with John Gallant with their Survivor-to-Survivor peer program. John and I spoke shortly after my second procedure in November. I asked him about his BCG treatment experience and what to expect and suggestions on how to make the day of my treatment more tolerable. He answered all my questions and provided valuable information.

Living with bladder cancer has taken more of a psychological toll on me. I have been very fortunate to have a strong support system. My family and the close friends I shared my diagnosis with have been great! Yes, I did have periods of depression and feeling very emotional at times. There were times that I would start crying when alone in my car or my office. I would go through periods of thinking I was going to die from cancer; although I knew I was being overly dramatic, it was only natural to have that thought. I believe strongly that being a triathlete and training 5-6 days per week, swimming, cycling, running and strength training has helped me physically and mentally in my cancer journey.  I cannot wait until the 2022 season to participate in all my scheduled races.

This is the first time I have told my story. I have only told a few close friends. I’ve been reluctant to tell anyone. Recently, I have become more comfortable sharing that “I have bladder cancer.” I was happy to discover the Schar Cancer Institute in Virginia, which has been an excellent resource. I have a fabulous nurse navigator, Karen Sachse, who is also BCAN patient advocate. I look at Karen as my “Personal Cancer Concierge,” who I can call anytime for anything. I cannot express enough how instrumental Karen is to my life with the cancer journey. I tell her all the time she can’t retire until I’ve been NED for at least five years!

No one should feel alone after being diagnosed with bladder cancer. I searched BCAN’s site and others for cancer survivor stories of patients who look like me and share a similar profile and could not find any. So, I hope that sharing my experience will contribute to the journey of other cancer survivors.