Every story has a moment that could change for the better

The insights we need come from patients. Read along as they share the moments they wish to rewrite.

David Guttman

In 1994, 54-year-old David looked into the toilet bowl and saw blood in his urine. He immediately sought medical help. But it wasn’t until six months later that he was diagnosed with non-invasive bladder cancer.

Cells in the bladder sometimes mutate and behave abnormally. While some changes may lead to benign conditions, some changes to bladder cells can cause cancer. When the cancer cells are contained to the urothelium, it is called non-invasive bladder cancer. If the cancer spreads to the bladder wall, it becomes invasive bladder cancer.

The most common sign of bladder cancer is visible blood in the urine, however it may sometimes be seen only with a microscope or discovered through other urine tests. Other symptoms include urinating more frequently or trouble urinating, urinary urgency or a burning sensation while urinating. These and other symptoms of bladder cancer may not be present in the disease’s early stages but appear once the tumour has grown larger or invaded the deeper layers of the bladder wall.

It is estimated that 2,400 Canadians died from bladder cancer in 2017.

David went through 10 years of treatment for his cancer, including the removal of tumours from his urethra, until he underwent a radical cystectomy – the complete removal of his bladder. Today David advocates for other bladder cancer patients through Bladder Cancer Canada, which he founded with fellow survivor Jack Moon in 2009.

“For six months, I was misdiagnosed. I went to my GP (general practitioner) after seeing blood in my urine, but not once did he ever mention the words ‘bladder cancer.’ Instead he kept me on antibiotics that made me feel lousy, and one even caused me to have some hearing loss. I had a lot of discomfort and my symptoms continued to bother me.

I self-diagnosed. I did my research and I went through every other possibility for my symptoms until I couldn’t ignore them anymore. One day, I walked into my GP’s office and the receptionist said, ‘David? You don’t have an appointment today.’ I said to her, ‘Well I’m not leaving until I get an appointment with a urologist.’

That first urologist went with standard operating procedure – he got me in for a cystoscopy to confirm my diagnosis. He found tumours in my urethra; it was bladder cancer. While I was still under, this urologist went to speak with my wife. She was in a waiting area surrounded by consultation rooms, but he elected to tell her in front of everyone else, ‘Your husband has cancer.’

‘Does he know?’ my wife asked him, and he said yes. You can only imagine my shock when she came to see me in recovery, visibly upset, and began talking about my diagnosis. I said to her, ‘Are you telling me I have cancer?’ That’s how I learned that my life had changed forever.

There was no real discussion about prognosis or cancer treatment. I didn’t even have a booklet to look at – the urologist had no support material that he could give me.

If I hadn’t done my research and tried to get in with the best doctor in bladder cancer, I might still be with that urologist. But I was lucky because I found a doctor that got me.

I think things are different now, but everyone still needs more education. Patients, and even doctors, need to know more about the signs and symptoms of bladder cancer. They need to know that non-muscle invasive is recurring and has to be monitored to keep it from turning into invasive bladder cancer. They need to know that invasive bladder cancer is harder to treat. They need to know that it’s an expensive cancer to treat and that it costs our healthcare system a lot. We need to do more.”

We need to hear your voice!

To help us identify healthcare moments that could use some change, we need your stories. Tell us about your experience with cancer, whether it’s through your eyes or someone else’s.

Do you know someone with a story to share about their experience with cancer?
It’s time to #RewriteCancer!