Jon Joseph is in his mid-50s, runs a successful marketing agency, and has never been diagnosed with prostate cancer. But he’s vigilant about screening for the disease. His father, Ben, had it late in his life, and men who have a close relative with prostate cancer may be twice as likely to get it themselves.
In Ben’s case, his prostate cancer went undiagnosed for years, spread to his bones and claimed his life a month shy of turning 90.
Ben lived a long and fulfilling life, but his story highlights the challenges of detecting and diagnosing prostate cancer, the second most common cause of cancer death in men in the U.S. It also reinforces the need for new tests that can help with early detection and provide more certainty in diagnosing the disease.
The difficulty of diagnosis
Ben Joseph was a decorated veteran of World War II, where he was part of a Navy special operations group stationed in the Pacific transporting supplies to the front lines. After the war, he returned to North Dakota, where he farmed grains and raised livestock until his retirement.
Ben was 81 when the results from a routine blood test came back showing that his prostate-specific antigen (PSA) score, considered the gold standard in prostate cancer screening, was elevated. Yet his primary care physician saw no reason for alarm — Ben was healthy, remained physically active, and had no symptoms — and he opted to keep an eye on his PSA levels.
“He said, ‘Look, here’s the thing about prostate cancer,’” Jon recalls the doctor saying. “‘Even if you do have it, it’s such a slow-moving cancer, and it’s usually isolated to the prostate. You’ll probably die from something else before you die from this.’”
PSA scores, while helpful, are not a reliable indicator of prostate cancer, since they can be elevated for several unrelated reasons. In deciding to pursue watchful waiting, Ben’s doctor declined to order a biopsy or to refer him to a urology specialist for further examination.
Feeling as healthy as ever, Ben and his wife made their usual trip to their winter retirement home in Arizona. The next summer, at age 82, he had another blood test as part of his annual physical exam. This time, his PSA levels were slightly lower than before but at the high end of the normal range, leading his doctor to surmise that the previous results may have been a false positive.
Ben’s next few annual blood tests returned similar results, and he continued to experience no symptoms — until one day in April, at age 85, when he and his wife had returned home early to North Dakota.
He was shoveling snow from his driveway when he was forced to stop.
“He said, ‘My back hurt so bad, I thought I was going to die,’” Jon recalls.
“Given that my father had been so healthy for virtually his entire life, the statement ‘I felt like I was gonna die,’ really caught our attention.”
So Jon’s sister persuaded her father to make an appointment to see a chiropractor she knew.
The chiropractor examined Ben and detected something unusual under his skin.
“They shoot an X-ray of my dad’s back and the chiropractor says, ‘I’m not an oncologist, but I’m seeing stuff all over the place,’” Jon says.
Ben then saw a specialist who ran a series of tests and conducted a biopsy. They lead to a shocking diagnosis: stage 4 bone cancer. “It was all over his body,” Jon says.
Following an extensive series of tests and scans, the specialist traced the illness back to undiagnosed prostate cancer that had spread throughout his body over several years. Ben’s prognosis was six months left to live.
It would be what Jon calls “the beginning of a rollercoaster journey” of supporting a family member with cancer. Ben would undergo stomach injections and various painkillers. Over the next four and a half years, he went in and out of hospice care three times and still managed to spend winters in Arizona every year, even as his health yo-yo’d.
At Ben’s request, Jon said he spent his last day with his father at the casino in Arizona. Seven days later, Ben died.
“He had a good quality of life right up until the end,” Jon says. “Ultimately, prostate cancer is what got him, and I think my takeaway was that it was such a deceptive disease. It’s so hard to diagnose and there were confusing directions from the doctor. The end leaves you wondering if they had had some other method to follow up on the PSA, maybe all this could have been prevented.”
Several years later, Jon was visiting with his own primary care physician when he asked him for a PSA test. The doctor seemed reluctant, but Jon insisted, telling him about his father.
Jon’s PSA levels were normal, but he asked his doctor what he’d do if his PSA had been elevated. Would he refer him to a urologist for more specialized follow-up care?
The doctor tells him he’d run a second test to make sure the first one wasn’t a false positive, however, even if the positive result was confirmed, he’d opt to do watchful waiting. This left Jon feeling slightly uneasy.
“It’s like I’m seeing my dad’s scenario play out all over again — not just with anybody’s dad, but my PCP’s dad has a high PSA test,” he said. “I mean, forget about his age, it’s just like the exact same scenario is playing out again.”
There are many gray areas in the field of prostate cancer diagnosis, as Ben Joseph ’s story illustrates. Nevertheless, new biomarker screening methods, used in conjunction with the PSA test, hold great potential to help clinicians more accurately evaluate prostate cancer risk and decide whether a biopsy is needed.