Getting diagnosed with bladder cancer was harrowing, but with support and care, I’ve been able to live well with the disease.
How does it feel to perceive oneself as a bladder cancer survivor rather than a bladder cancer patient? The first time I was introduced as a survivor within the Bladder Cancer Canada (BCC) community, I felt a sense of empowerment and it changed my perception of myself — forever.
My first encounter with bladder cancer was over 20 years ago, when I was diagnosed with urothelial carcinoma — a form of nonmuscle-invasive bladder cancer. Since then, I’ve had seven trans urethral resections of a bladder tumour (TURBTs), mitomycin C (chemotherapy) and BCG (immunotherapy) intravesical therapies, and countless cystoscopies. However, this hasn’t hindered me from leading a good-quality life as a full-time working mother. So, essentially, I perceive myself as a bladder cancer survivor.
An accidental discovery
Like most cancers, bladder cancer is an insidious disease that only manifests itself long after it has taken root. What were my symptoms? None! I neither had blood in my urine nor UTIs nor any kind of pain. So, how was I diagnosed? An ultrasound technologist fortuitously noticed and reported a mass in my bladder while performing a routine pelvic ultrasound for menorrhagia symptoms. My doctor promptly referred me to a urologist/oncologist at the local hospital and, within a couple of weeks, I had my first cystoscopy.
It felt surreal looking into the interior of my bladder — as if I was watching a sea world episode of The Nature of Things. We were looking at this wafting polyp-like structure. That, the urologist said, was the tumour that needed to be scraped off as soon as possible. I was in complete shock and so was my husband. That such a cancer existed was news to us — neither of us had heard of it. We rushed to the library to do some research. The internet was in its infancy at the time, and we didn’t have it at home.
Where did I fit in?
There wasn’t a lot of literature on this cancer, but what we did find was interesting. Smoking was listed as the leading cause and its incidence was highest in older Caucasian men. “Where do I fit in?” I wondered. I was a health-conscious, non-smoking 44-year-old woman of South Asian descent, with no history of bladder cancer in my extended family.
An appointment with the urologist a few days later helped allay our fears somewhat. The good news was that the cancer was at a preliminary stage and he said that, although the probability of recurrence was high, it would be controllable. I would also have screening tests periodically to ensure that there was no cancer in other organs. Histology results of the TURBT performed a couple of weeks later confirmed the doctor’s diagnosis of urothelial carcinoma. According to him, my occupation as a pharmaceutical laboratory analyst was a concern, but not a risk. Upon our request, he wrote a recommendation letter to my employer to have my duties directed away from the laboratory environment. Thankfully my employer was accommodating, and I had a rewarding career in my new role as a coordinator for 20 more years, until my retirement.
Opening up eventually was a relief
Being diagnosed with cancer of any kind, regardless of the disease stage or one’s age, is a harrowing experience emotionally and not something that I felt I could easily share with others.
I was devastated at the time and apart from reaching out to my immediate family and very close friends, I wasn’t ready to talk about it. I feared not being able to handle people’s reactions. Eventually, when I did open up to my colleagues, I felt a great sense of relief. I realized that I wasn’t responsible for anybody’s feelings or reactions and that well-meaning colleagues, friends, and relatives would always be understanding and supportive.
Looking back over the long span of my bladder cancer journey, I feel very fortunate that it has been relatively smooth with a few bumps and jolts. The cancer has been nonmuscle-invasive and the fact that I have a caring and dedicated doctor who I trust has helped greatly. Of course, there’s always anxiety to deal with before each cystoscopy and TURBT. Although TURBT is a relatively safe procedure, complications can happen. I’ve had situations where my bladder wall was nicked, and this entailed having a catheter for a few days post-surgery. There was a time when I was consumed with worry about my bladder not sustaining the frequent TURBTs or the recurrence of the cancer.
A sense of belonging
Thanks to BCC, I’ve come a long way in understanding that it’s possible to live well even after a radical cystectomy. I’ve had the opportunity to meet other bladder cancer survivors in person as well as during online events and in support groups facilitated by BCC.
I continue to gain knowledge about the latest treatment options and ongoing research through BCC newsletters and webinars. Becoming a member of BCC has been a blessing for me. It has given me a sense of belonging and an opportunity to connect with other women who are bladder cancer survivors. I hope to help raise awareness of this little-known cancer and to be of service as a peer support volunteer.
Learn more and join the Bladder Cancer Canada community at bladdercancercanada.org.
