Joe’s Story: “I am not alone on this journey.”

Amid other health issues, Joe Moore’s bladder cancer diagnosis arrived unexpectedly. The sight of blood in his urine prompted concern which encouraged him to undergo tests where it was revealed that he had a tumor in his bladder. He embarked on his journey into a cancer diagnosis, marked by uncertainty and a quest for answers but regardless of the difficulties, he learned valuable lessons throughout: “Be your own advocate and learn as much as you can about bladder cancer and where you are.” Here is Joe’s story:

My bladder cancer diagnosis came at a time of other health surprises, but in hindsight, it is fortunate how it happened. At age 69 and the height of the COVID pandemic, I had a minor heart attack.  It was a surprise as I was fit and very active. My wife took me to the emergency room, but she was not allowed to accompany me further due to COVID restrictions.  I received three coronary stents, spent the night in the ICU, and was quickly discharged the next morning due to overcrowding. I was immediately placed on strong blood thinners which I would need to take for a year. Off I went, adjusting to the new normal and continuing to be very active.

Two months later, I noticed bright red blood in my urine. I panicked but convinced myself it was a side effect of the blood thinners. I called my cardiologist’s office, but they said I should go see my primary care physician. The physician’s assistant I saw took a urine sample and prescribed antibiotics for a possible infection. He also recommended I go see a urologist. I said I would prefer to wait and see how the antibiotics work. He responded, “If you were my father, I would insist you see a urologist and I would take you there myself as soon as possible.” That got my attention and we scheduled the appointment.

The urologist’s staff took a urine sample and scheduled a CT scan. They called the day after and said I needed to come in and see the doctor. The urologist showed me the scan of a 5 cm tumor in my bladder. My urologist does not say a lot unless I ask questions, but he is always very straightforward in his answers. He explained the need for a cystoscopy to back up the CT scan and then a TURBT. I asked if it could be benign or a cyst. He replied that based on his experience, it was cancer, but the procedures were needed to confirm it and plan further treatment.

We discussed my history; I had never smoked but spent several years as a painter and always enjoyed working on vehicles with exposure to all the solvents involved.  These were all during a time when protective equipment was not emphasized or I was indifferent to using it. He told me I was lucky to be on the strong blood thinners as they caused the tumor to reveal itself early. I left somewhat in shock, without much information, and realized my life was taking a new turn.

My first TURBT procedure, including a chemotherapy wash, was straightforward – at first.  My urologist would be away for two weeks but would call with the results on his return.  It was three very anxious weeks waiting for the call.  The results were not what I wanted; hospital staff had lost the biopsy sample and it had never made it to the pathology lab. Numb, I hung up the phone and then exploded.

My wife called a friend whose daughter worked as a patient advocate at the hospital. Her daughter immediately called me and promised I would hear back within a day.  She was true to her word. The head of surgery called and said the sample was lost and then, in my opinion, went into institutional damage control. I interjected and asked him if he understood the impact such a mistake has on a patient, both physically and psychologically. I said, “You can’t help me but you need to tell me that procedures will change and no patient will experience this again.”  Later, I found out that procedures did change and that my patient advocate “angel” had forcefully rattled cages throughout the hospital.

My urologist called and we discussed how to proceed. He felt he had excised the entire tumor and that it did not appear to be muscle invasive. Since the tumor had been removed, there was nothing to do but be diligent with three-month cystoscopies and see if anything returned. I was not offered BCG treatments and my rheumatologist strongly recommended against it as I have inflammatory arthritis and take medication that lowers my immune system. My urologist stated that if things were to progress, chemotherapy would be the next step.

My three month follow-up cystoscopy was clear, but the next three month scope showed another smaller tumor. I had another TURBT. I had quite a bit of bleeding afterward, likely due to the lingering effects of the blood thinners I had temporarily discontinued. This time the tumor made it to the pathologist and was classed as non-muscle invasive, low grade. Treatment would consist of continuing the cystoscopies every three months for two years.

I remained clear until just before the two-year mark when a very small tumor was found. This one was burned off during the cystoscopy with very little discomfort. So I’m back to another two years of three-month scopes before I can graduate to six-month scopes. This doesn’t bother me, as I want to know of any recurrence as soon as possible so proper treatment can occur quickly.

I live in a sparsely populated state in what many would consider a rural area. Although medical care here is rapidly expanding, there are no major cancer centers or much information on bladder cancer. I know that should my cancer progress, I need to be very well informed and ready to commit to traveling to the best treatment out of state. That is where BCAN has become so important to me.

I first learned of BCAN as it is linked with the online group Inspire, where I go for arthritis-related information. I quickly found BCAN to be a source of the relevant, factual information that I need to be informed and to serve as my own advocate. It has helped me understand terminology, various treatments and protocols, and research. I now know what to ask my urologist and understand that he is following established protocols.

Patient stories have helped me understand that I am not alone on this journey.  I have come to accept that bladder cancer is now part of my life, for better or worse.  I feel blessed that my diagnosis so far has been low grade. I’m active and live with my wonderful wife in a very beautiful area. My children, grandchildren, and great-grandchildren all live nearby. My life has been good and my choice is to keep moving forward and enjoying every day. Life is good.

There are some important things I have learned on this journey.  Family and close friends are so important; be open and honest with them about your condition.  You may be surprised both at how willing they are to help you and also the journey that they are on. A friend of mine is a very upbeat, active person who is dealing with recurring prostate cancer. He is very open about his condition and treatments.  Talking and sharing with him has been very helpful.

Be your own advocate and learn as much as you can about bladder cancer and where you are at.  Know enough before your appointments so that you understand what medical staff are saying and can ask good questions.  If you don’t understand or don’t agree with something, assert yourself and keep questioning until you are comfortable with what is recommended; anyone can make an error.  BCAN has helped me learn all of this.