Update: We are deeply saddened to report that John passed away on December 18, 2016. It is a privilege to continue to share his story and keep his memory alive.
In the summer of 2004, John Wagontall looked like the picture of health. The 46-year-old Canadian had been a firefighter for 20 years, was an avid cyclist, and also worked out alongside his wife as she trained for a bodybuilding competition. The only sign that something was wrong was a bit of blood in his urine.
His doctor told John he had a bladder infection, prescribed antibiotics, and sent him home. And all appeared to be well until a few months later, when his urine was bloody again. This time, his doctor sent him to a urologist to learn the underlying cause of his recurring bladder infection.
Thinking it was a bladder or kidney problem, the urologist ran a lot of tests. “When he scoped my bladder, he saw a dark spot at the neck,” John recalls. Biopsies showed that the dark spot was prostate cancer, that it was extremely aggressive, and that it had also spread to his abdominal lymph nodes.
“It caught me off guard and it caught my doctors off guard,” John says. None of them had even considered cancer. While his prostate was now twice as big as normal, it had been fine when his doctor checked 2 years earlier.
The only treatment his local oncologist offered was androgen deprivation therapy to block testosterone production, which can control, but not cure prostate cancer. “He said I was so far gone that no one would want to treat me,” John says. “He said I’d be dead in the next little while, and to get my affairs in order.”
In search of more options, John traveled to a major cancer center in Calgary for a second opinion. But the oncologist there agreed there was nothing else they could do. Undeterred, John sought a third opinion from a radiation oncologist in Calgary. This time, he was finally offered another treatment. “He said he couldn’t cure me, but that he could give me some more time—3 to 5 years—with focused radiation,” John says.
But when he went back home, his local doctors told him not to do it. Based on their experience with radiation that was less targeted, they said it wouldn’t help and would cause problems. “They were so negative, but the radiation oncologist was so positive—it was hard to know what to do,” John says.
He wanted to discuss targeted radiation further, but the radiation oncologist said he might be too busy. Even so, John put his fate in the radiation oncologist’s hands. “I decided that if I could see him I would get radiation, but if not I wouldn’t,” he says. John went back to Calgary, waited to see the radiation oncologist, and then gave up and started to leave. Luckily, the radiation oncologist showed up just as John was walking out. “He ran after me calling my name,” John says.
In the spring of 2005, John had daily radiation treatments in Calgary and only got to go home on the weekends. Citing his youth and excellent health apart from prostate cancer, his radiation oncologist maximized the dose to give John as many more years as possible.
“It was a scary time in my life because almost everybody was against doing anything except for androgen deprivation therapy,” John says. “But without radiation, I’d be dead.”
Firefighters are at increased risk of prostate cancer, presumably due to toxic chemicals in smoke, and in the summer of 2006 John bicycled the nearly 5,000 miles across Canada to raise awareness of this issue. He met with other firefighters all along the way, encouraging them to get tested for prostate cancer and to open up about this disease. “Men are less likely to talk about stuff like this,” he says. “They preferred to talk about my bike ride.”
John also urged those who tested positive to file workmen’s compensation claims. His own claim had been denied, which added financial hardship to the challenges he and his family faced. But, partly thanks to his awareness campaign, in 2011 the Alberta government added prostate cancer to the occupational diseases that workmen’s compensation covers for firefighters.
After finishing radiation treatment in 2005, John controlled his prostate cancer by repeatedly going on and off androgen deprivation therapy. When the effectiveness of this approach diminished in 2012, he added chemotherapy, switching to new treatments as each lost their potency against his cancer. Soon he will be down to the last approved treatment. So he’s on the lookout for a clinical trial and also hopes new treatments will be approved, as has already happened twice since his diagnosis. “All along, I’ve told myself that if I can make it two more years, something will come up and it will be okay,” he says.
Today, John can no longer cycle, but he continues to hear from men who thank him for prompting them to get tested for prostate cancer—and for saving their lives—during his cross-country ride. “It makes you feel really good to know you can make a difference in someone’s life,” he says.
In turn, his family and friends make a difference in his life. As John says, “This is seldom a journey taken alone.” Last Christmas, John and his family celebrated his 10th year of survival since his diagnosis.
Follow John on his blog at Cycle for Life.
Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.