By Stewart P.
In mid-2020, I was diagnosed with bladder diverticulum. In late 2020, I underwent a prostatectomy with diverticulectomy to remove it. Although the surgery was major, everything went well, but the healing process took some time.
Almost a year later, while on a business trip, I experienced hematuria (blood in urine). Although this wasn’t the first time, I was particularly concerned as it occurred well after my procedure a year ago. My wife, who was with me, promptly contacted my urologist’s office. Upon returning to Canada, I was scheduled for another cystoscopy and tests at the hospital the following day.
Following a cystoscopy, there were areas suspicious for carcinoma in situ. A CT urogram revealed thickening of the left anterolateral bladder wall. Subsequently, I underwent a repeat transurethral resection of bladder tumor (TURBT) with transurethral resection of prostate (TURP), marking the beginning of my challenging journey.
My urologist relayed the results to me over the telephone, revealing T1 high-grade urothelial cancer of the bladder. Shocked, I felt the blood draining from my body, trembling with the thought, “Is this the end?”
Recognizing the gravity of this diagnosis, I sought a second opinion. My urologist promptly referred me to Dr. Girish Kulkarni at the Princess Margaret Cancer Centre, whom I affectionately call the “Man the Myth the Legend.” Meeting him and his team in January 2022 amidst the COVID-19 surge added another layer of complexity to my situation, with surgeries being postponed and healthcare professionals working tirelessly to manage the crisis. Nonetheless, I remain immensely grateful to Dr. Kulkarni and his team for changing my life forever.
We explored several treatment options, including:
- BCG, a form of chemotherapy administered through the urethra into the bladder.
- Participation in a case study trial for a new drug, which is a potent version of BCG.
- Neo Bladder reconstruction.
- Radical Cystectomy, the surgical removal of the bladder.
Considering the high recurrence rate of bladder cancer (over 80%), the potential need for self-catheterization with a Neo Bladder, and the uncertainty of success with BCG, I opted for the most impactful choice: Radical Cystectomy.
Fast forward to January 2022, amidst rising Covid cases. My surgeon, Dr. Kulkarni, informs me that the earliest surgery date he can offer is late March, with no guarantees. These developments are concerning. Cancer continues to grow inside me, and at 59 years old, I am relatively young for bladder cancer, as it typically affects older males.
During this time, my urologist at Mackenzie Health, Dr. Michael Kogon, who I owe a great deal to for catching my condition early, recommended that I begin chemotherapy while awaiting surgery. Unfortunately, I could only undergo one infusion of chemo because my blood counts and kidney function couldn’t tolerate the treatment. However, it appears that this single infusion may have been sufficient to eliminate the cells needed to prevent the cancer from spreading and becoming muscle invasive.
In late March, I received the call I had been eagerly anticipating. Kira from Dr. Kulkarni’s office informed me that my surgery was scheduled for April 7th. Dr. Kulkarni had arranged for the surgery to be performed robotically, a piece of news that filled me with joy and relief.
On the morning of April 7th, at 5:39 AM, my life partner, my rock throughout this ordeal, dropped me off at Toronto General Hospital. As I entered the hospital, preparing for a surgery that would last over 13 hours, a myriad of thoughts raced through my mind. Would I see my family again?
In the packed surgery suite, as Dr. Kulkarni entered, he asked if I had any questions. I replied softly, my voice trembling, that I did not. However, I made a promise: if I woke up after the 13 hours of being under, I would dedicate the rest of my life to working with him and Bladder Cancer Canada, helping others in need and fighting this disease.
I have been fulfilling this promise and will continue to do so for as long as I am physically and mentally able.
After my surgery, I discovered that the recovery process was not as daunting as we had anticipated. With the support of the hospital team, the guidance of the wonderful Stoma Nurse Debra Johnston, and the unwavering love of my wife, living with an Urostomy Ileal Conduit (a bag outside my body to collect urine) hasn’t been as terrible as one might imagine.
While you may not have control over the physical outcomes— that’s the doctor’s role—you do have control over the mental outcome, which is entirely up to you. Maintaining a positive mindset, no matter how challenging it may seem, is truly the only way to navigate this journey.
It’s been almost two years since my surgery, and I’m thrilled to share where I am today—embracing life more passionately than ever before.
Over the past two years, I’ve achieved several milestones, and I firmly believe that the best is yet to come:
- Participated in two Bladder Cancer Canada Walks
- Volunteered as a peer support member for Bladder Cancer Canada, offering a listening ear to those in need.
- Agreed to be on a bladder cancer panel in April 2024
- Traveled to Europe in March 2023
- Recently returned from a trip to Thailand in March 2024
- Play Pickleball 4-5 times a week.
- Spend quality time with my family whenever possible.
- Continue to manage my company daily.
I am grateful for the support I’ve received and look forward to what the future holds.
Bottom line…… Life doesn’t stop when you get diagnosed, and thankfully for many, now more than ever if caught early it just begins 😊
