Disclaimer: This story reflects one person’s personal experience with bladder cancer and is shared with the hope of raising awareness and offering different perspectives. It is not intended as medical advice, and does not necessarily reflect the views, policies, or positions of Bladder Cancer Canada. Everyone’s health journey is unique, and symptoms, diagnoses, and treatments can vary widely. If you are experiencing symptoms or have any concerns about your health, please speak to your doctor or a qualified healthcare professional.
My journey with bladder cancer began in the Spring of 2017 with the natural act of going pee. Sorry for the graphic description. There in the bowl was something seemingly unnatural, a blob of darkened matter. Congealed blood – maybe? I froze. I had no idea what was going on.
This was before the brilliant BCC ad campaign, “See Red”.
Something in me at least said I had to get this checked out ASAP. One day later I was in the family doctor’s office. He instantly conducted a urine test in the office which came back positive for blood. That’s when our much-maligned medical system sprang into action. In just ten days I was on the table for a cystoscopy with my new soon to be best friend, my urologist (he even gave me his mobile number to text/call, which I later did). He and I both saw it on the screen at the same time. I said, “That clump of cauliflower isn’t supposed to be there, is it?” “Nope, you have bladder cancer. I’m scheduling you for surgery.”
That’s when my brain hit a brick wall.
At least I’m lucky (?) that a lifetime of experiences in journalism have taught me to snap out of shock and indecision to deal with what’s in front of me. I knew I had to make informed decisions for a path forward, especially since I was already watching one extended family member slowly die from putting off the initial investigation of symptoms and treatment for bladder cancer.
Like many, I asked Dr. Google, although with the critical thinking I usually applied to journalistic research. I looked at various national institutes of health webpages, accredited non-profits, and peer-reviewed studies to figure out the odds (very good) and various treatment options, depending on my type and extent of cancer. And that’s when I also came across Bladder Cancer Canada.
Bladder Cancer Canada gave me the trusted information I needed—and connected me with experts, survivors, and patients like me. It helped me make informed decisions and take control of my journey.
Alan participating in Bladder Cancer Canada’s Sourface Selfie Challenge for Bladder Cancer Awareness Month.
That newfound knowledge came into play quickly with the surgery to remove the tumour (TURBT) and the resulting diagnosis from the biopsy. High grade, non-muscle invasive, with carcinoma in situ (CIS). At that time, I had two options (there may be many more for your diagnosis now): radical cystectomy and likely eliminate further progression of the CIS or try BCG as a starting point. I elected for BCG.
I had what’s considered the gold standard for BCG: once a week for 6 weeks; then 3 weekly treatments at 3, 6, and 12 months; and finally every 6 months to the 3 year mark.
My decision turned out to be the right one for me. My urologist and oncologist declared me cancer free by month 7. That didn’t mean I stopped BCG. In fact, I joked with the medical team that I’d carry on with it for life if that was an insurance policy – not that that would be effective after the 3 year point.
During all that time, and even now, the people at Bladder Cancer Canada, both staff and volunteers, have been a wonderful support and source of information. One particular live event about radical cystectomies created a powerful connection for me and introduced me to survivors who are friends to this day. I have been part of a support group for the last 6 years that meets once a month, either in person or on Zoom, and I’ve seen many patients greatly benefit from that peer support.
Another connection has been the annual Bladder Cancer Walk, which not only offers a way to financially give back but also unifies us as a group. The camaraderie during the walk itself and the event is priceless. To see all those people gathered who have been through similar journeys is powerful, and so is the public reaction. Many of those on-lookers have heard little about bladder cancer, are amazed it’s one of the most-diagnosed cancers, and that so little research money is ear-marked for it. Just think what discoveries could be made with a major corporate or trust donation!
So, for those of you who are newly diagnosed, I’d say do your research – but resist going down the rabbit hole of non-critical thinking! And make use of the many resources of Bladder Cancer Canada: the articles, webinars, videos, and live events. This will help you keep abreast of the latest innovations and protocols, advocate for yourself, and introduce you to a whole bunch of people who know exactly what you’re going through.
Alan W.
8 year survivor (and counting)
