Bladder Cancer Briefs March 22, 2023

Read prior editions

Glenn’s Story: Sharing My Journey to Help Others

On April 1, 2023, it will be the two-year anniversary of Glenn’s bladder cancer diagnosis, a few months before his 75th birthday. Glenn is grateful for the opportunity to share his story, hoping it will alleviate anxiety and offer encouragement to those who are beginning a similar journey.

My fear confirmed

On that day 23 months ago, I presented to my local urgent care facility for what I feared might be blood in my urine. A urinalysis was conducted immediately and confirmed my fear. I was sent for a CT scan, and about an hour later, the doctor came back into the room and made the dreaded announcement that every cancer patient will recall forever. He said, “Glenn, I’m sorry to report that you have a large tumor in your bladder.” I said, “Get me to a urologist.” The next morning, I met Dr. Alex Koper for the first time.

I was, of course, quite anxious and concerned about what would come next. Dr. Koper said we needed to do a cystoscopy immediately, but I tried to talk my way out of it. “How about another CT scan?” It was explained to me that surgery would likely be necessary and that it was essential that the surgeon have a direct view of the problem. He then said something else that I would never forget. He said, “Glenn, we are going to get to know each other very well.” He was correct about that!

On the second or third day after the diagnosis, I went to the hospital for the bladder tumor resection procedure (TURBT). I was discharged the next day and told that I had a large high-grade papillary tumor graded Ta with a small satellite tumor nearby. About one month later, I had a second TURBT as a standard protocol to ensure complete removal of the tumors. The urologist then explained the next step would be six weekly instillations of BCG. I did some basic research about BCG and was at first alarmed to read that some patients had problems either tolerating the procedure or having difficult side effects from the BCG. I then obtained a second urological opinion and was convinced that the BCG protocol was standard and necessary and would give me a good chance of avoiding any recurrences.

At first, I dreaded the BCG procedure, but I soon realized that my fear and anxiety, although reasonable enough, were quite unnecessary. To this date, I have had a total of 15 BCG instillations, first on a quarterly and now on a bi-annual schedule, and I can say that the procedure, for me at least, is quite tolerable. There is momentary discomfort, and instillation is over in about 90 seconds. In further reading on the subject, I noted the term “surveillance,” which describes the purpose of regularly scheduled cystoscopy, which I still receive quarterly. I told Dr. Koper that I wish to obtain “maximum surveillance.” In all honesty, I can say that I actually look forward to getting BCG whenever I can.  I consider the treatment as another brick in the defensive wall against the recurrence of the cancer and the cystoscopies are like the periscope in a submarine looking out for an approaching enemy. I asked my doctor if the regular scoping of my bladder would always enable us to stay ahead of the disease, and he said it would.

I cannot say what the future holds for me, but I now feel quite optimistic that I can avoid a recurrence of the bladder cancer and continue on with my life without any further impact from the disease than what I have described.   

Resources for Patients and Families

For more information on signs and symptoms, visit BCAN’s Signs and Symptoms page. If you are a newly diagnosed patient and would like more information, sign up to receive BCAN’s Bladder Cancer Basics Handbook for the Newly Diagnosed.

If you would like to read more stories or want to share your journey with bladder cancer, visit our my bladder cancer story page. Be a voice for those who have felt alone in the fight against this disease.