Joanne was diagnosed with Carcinoma in Situ at the age of 47, and then in 2016, she was diagnosed with high-grade and invasive bladder cancer -this is her story written from her perspective:
My name is Joanne and I am currently 58 years young and continuing to live life to the fullest after having bladder cancer which was first detected eleven years ago. I hope that sharing my story can provide support or motivation for others facing similar challenges.
My story started simply when I noticed a small amount of blood in my urine. I had been feeling that things were not right, so I took the time needed to be referred to a urologist for follow-up. Although initial test results were inconclusive, second tests were completed for thoroughness and this detected cancer.
This initial test led to a day surgery biopsy which discovered ‘carcinoma in situ’ or ‘rapid growing cancer cells’ in my ureter. Given the complexity with this location near my kidney, I was then referred to a great urologic oncologist surgeon for consultations leading to my first full surgery.
As a fit, non-smoker when I was first diagnosed with bladder cancer and learning about it, there were many occasions where I was lost. I thought that I needed to understand or explain to others why I had it, as well as facing all the worst fears of what would happen next.
All went well with this surgery, removing the suspect portion of my ureter and its reattachment to my bladder. Post-surgery care was supported with three years of BCG treatments, monitoring tests (cystoscopies, CT scans etc), and examinations all with good confidence that the cancer had been prevented from recurring.
Despite the best expectations from all of those steps, three months after my last BCG treatment, I again noticed blood in my urine, and very shortly after a tumour was found in my bladder. Since I was still under the care of my primary doctor, this situation was quickly addressed with my second full surgery to remove the tumour (TURBT).
Although I was hopeful that quick action would have addressed these fears, the pathology of the tumour indicated that it was high-grade and invasive, and therefore this surgery thrust me into preparation for a third more major surgery, a radical cystectomy (for me the removal of my bladder, one kidney and ureter, and hysterectomy) a 14 hour surgery!
I started a three-month regimen of chemotherapy in preparation and scheduling for my third major surgery. Even with my previous experiences in dealing with bladder cancer, this was when I first reached out to our local Bladder Cancer Canada (BCC) support group, seeking out others who had to select the type of diversion they we’re living with. The experiences of others and consultation with my doctor led me to request a ‘neobladder’ (or internal bladder constructed from pieces of my small intestine). This period waiting for surgery, dealing with chemo treatments and a related complication was most stressful even while trying to remain positive with everything that was still to happen. This pre-surgery period included my daughter rescheduling her wedding to ensure that our focus remained on life’s blessings.
My major surgery took place in the summer of 2016, went as best as could have been expected and its associated recovery period went day by day in both the hospital and later at home. Looking back now, I remain ever so thankful for all of my family, friends and BCC supporters who all encouraged me to be gentle and patient in expecting life to return to ‘my new normal’. I learned how to live with my neobladder and returned to work and travel with a positive attitude, and to be thankful to be able to make it work.
Emptying my neobladder thoroughly was time-consuming, hard work and having to have washrooms easily available was also very limiting. After two years I received the recommendation to consider emptying my bladder with a catheter to ensure it was being fully emptied.
With practice came proficiency, and I now chose to always empty with catheters leading to an even better ‘newer normal’. I can now sleep for four hours at a stretch and no longer need to be looking for bathrooms. Over the years, since having had bladder cancer, I also have been fortunate to appreciate all of my life’s treasures: an early retirement, travel, active living, spending time with family, including both of my daughter’s weddings and three grand-children. I continue to have medical follow-up from my same outstanding team of medical professions.
With my own gratitude for all of the professional care I have received and for the support from other BCC volunteers, I volunteer weekly at the Ottawa General Hospital cancer wing and as a BCC peer support person, helping others facing the fear of cancer with understanding, empathy and trust in faith.
