By Dick G.

In April 2012, as I prepared for retirement after nearly 40 years as an Urban Transportation Planner, my plans took an unexpected turn. I noticed blood in my urine, prompting a visit to my family doctor and, eventually, a referral to a urologist. Following a series of tests, including a transurethral resection of a bladder tumour (TURBT) and cystoscopy, I received a diagnosis of muscle-invasive bladder cancer.

Through a biopsy and CT scans, it was determined that the type of cancer was “small cell”, an aggressive type rarely found in bladder tumours. An oncologist with experience in small cell cancer was therefore assigned to my case. Fortunately, the tests also showed no evidence that the cancer had spread beyond the bladder. My case was referred to a panel of specialists, including my urologist and oncologist, that met on a regular basis to determine appropriate treatment plans.

Facing the Diagnosis: Treatment Decisions

Through a biopsy and CT scans, it was determined that the type of cancer was “small cell”, an aggressive type rarely found in bladder tumours. An oncologist with experience in small cell cancer was therefore assigned to my case. Fortunately, the tests also showed no evidence that the cancer had spread beyond the bladder. My case was referred to a panel of specialists, including my urologist and oncologist, that met on a regular basis to determine appropriate treatment plans.

My recommended treatment plan would include the removal of the bladder and chemotherapy to minimize the chances of cancer spread. The key issues were first how to replace the urinary function, and second whether the chemo would be done pre- or post-surgery. Regarding the first issue, my urologist advised that I was eligible for a neobladder, which is a new bladder constructed with a section of intestines, and he was experienced with the required reconstructive surgery. He noted that this was a state-of-the-art solution and offered the best quality of life post-surgery.  He also wished to proceed quickly with the surgery, and it was tentatively scheduled for late-August. Meanwhile the panel considered the second issue further and decided it would be best for me to undergo the chemo treatment in advance of the surgery in order to minimize the possibility of the aggressive small cell cancer spreading to other areas.

The Journey Through Treatment

I underwent six cycles of chemotherapy over four months before undergoing surgery in November. The chemo treatments went smoothly, allowing me to enjoy a relatively normal summer before surgery. I was able to work during my chemo treatments, which allowed me to wrap up as many projects as I could. The treatment plan saw me undergoing one week of chemo and two weeks of rest between each cycle. The conditions were not ideal for my first summer post-retirement, but I was still able to enjoy a decent summer with a few rounds of golf, some swimming, and many visits with friends and family.

Pre-Surgery: Good News and Outcomes

Surgery for removal of my bladder and neobladder reconstruction had been re-scheduled for November 8, providing about a month of rest from the final chemo treatment. I was buoyed with good news from CT scans that chemo had shrunk the tumour and that there were no signs of cancer spread. The surgery itself was long and complex, but in the end it was successful. My treatment plan had rendered the best possible outcome.

Life After Surgery: Adjustments and Challenges

Living with a neobladder has its challenges. While the fluid mechanics of the system remain as before surgery, more time and effort are required to void, as the intestinal material making up the neobladder generates a mucous which impedes the free flow of urine. The mucous tends to harden with time, making it more difficult to expel. To avoid flow problems, it is important to stick to a regular schedule.

Some incontinence can be expected in the early months following surgery, as your lower abdominal muscles have been weakened. Incontinence during the night is common, as your muscles relax during sleep. Daily exercises (Kegels) can strengthen the lower abs, and incontinence products are readily available to help. A few months after my recovery from the cystectomy, I discovered I had an incisional hernia because of the surgery. This apparently is not uncommon. I was referred to a hernia specialist, who concluded that, since I had no negative symptoms, repair surgery was not urgent. We mutually agreed to monitor the situation. Monitoring continued up until last year when, some 10 years later, emergency surgery was required.

Looking Forward: Gratitude and Resilience

Having faced the threat of cancer spread and surviving three major surgeries over the past 12 years, the inconveniences of living with a neobladder seem minor. I feel grateful for the care and support I received and the life I’ve been able to lead post-surgery. I’ve continued to enjoy golf, sports games, dinners with loved ones, and travel, including seven trips to Europe. Life is indeed good!