Eddie Goodall had just been elected to the North Carolina Senate when he got the diagnosis: Prostate cancer. Surgery recommended.
It was 2005. He was a 59-year-old accountant from Weddington, just outside Charlotte in Union County. He did his research and decided to play the odds — no surgery, no radiation, just watch and hope the cancer wouldn't spread.
"I didn't want to slow down," he said. "I was really having fun in life."
In the following years, national controversy raged over prostate cancer screening and treatment. The routine blood test many doctors were giving to middle-aged men like Goodall came under fire, with experts saying too many patients were being pushed into treatment they didn't need.
For more than a decade Goodall stayed healthy. He helped state legislators draft bills that fueled the state's charter school boom, and continued that work as an advocate and consultant after he left the legislature. He worked out, kept his accounting business alive and enjoyed life. He felt good about dodging the impotence and incontinence that prostate surgery can bring.
Most people had no idea he was sick, which was just the way he wanted it.
His doctor, urologist Dan Watson, kept telling Goodall he was pushing his luck. His PSA levels kept rising, a sign that the cancer was getting more aggressive. But his bone and tissue scans stayed clear.
Until this spring, when spots of cancer showed up along his spine, ribs and clavicle. Now Goodall faced a new diagnosis: Stage 4 cancer with bone metastases.
"I have some less than joyous news for you," Goodall wrote in an April 26 Facebook post. "A very few of you know I have had prostate cancer for many years ... and decided early on to forgo aggressive treatment. It has caught up with me."
Shortly after Goodall's grim news, the U.S. Preventive Services Task Force revised its stance on PSA screening for men in their 50s and 60s, saying they should consult with their doctors about the need for a prostate cancer test. And just this week, researchers reported that the incidence of advanced prostate cancer is rising, a change some critics attribute to the decline in early screening.
After years of keeping his cancer private, Goodall wants to tell his story now.
Yes, cancer is scary. And yes, it's uncomfortable to talk about things like sexual dysfunction and urinary problems. But men's silence, he says, makes it harder for others getting the diagnosis to sort out their options.
Goodall knows some tough times lie ahead. Prostate cancer is likely to kill him, and bone pain can be brutal. But for now he's feeling good.
"It sounds odd, but I have no regrets," he said in May. "The way I look at it, I got 13 good years with no slowing down."
Watson might disagree with Goodall's decision to delay treatment, but he respects it.
"He's an intelligent guy," Watson said. "He was very well educated about it from the get-go."
There are glimmers of hope for Goodall, Watson says, but also troubling trends for other men. While Goodall got to make a choice, Watson says he has begun seeing patients showing up in the same state of advanced prostate cancer, which invaded their bones before they had any idea they were sick.
"We have not seen that in my career until recently," said Watson, who works with Urology Specialists of the Carolinas and is physician director for Presbyterian's Multidisciplinary Urologic Oncology Clinic.
Slow but not harmless
Much of the confusion about prostate cancer comes from the fact that it's common and slow-growing.
According to the American Cancer Society, one in nine men will be diagnosed with prostate cancer — most of them after age 65 — but only about one in 41 will die from it. The 15-year survival rate is over 95 percent. For many older men, surgery is considered riskier than living with the cancer.
Like most men, Goodall got his first hint from a blood test given during a routine physical. His PSA, or prostate-specific antigen, level was high enough for his doctor to recommend a biopsy.
The biopsy confirmed cancer and indicated a significant risk that it could have already spread past the prostate gland. Goodall says his first doctor suggested immediate removal of the prostate and downplayed the potential side effects. He did internet research and got a second opinion from Watson's team, which also recommended surgery.
As a CPA, Goodall says he felt confident weighing risks and benefits. Plenty of things might kill him before prostate cancer did, he decided. The risk of life-changing side effects was significant, and if the cancer had already spread, surgery wouldn't save him. So Goodall said no.
He kept his diagnosis secret from most who knew him — even from his parents, who had already lost one son to cancer. But he did confide in Stan Bingham, a Senate colleague who had just received a similar diagnosis. After talking with Goodall, Bingham got a second opinion and also decided against surgery.
Hold off on testing?
He agreed that overtreatment was a serious problem — he considered himself a near-victim — but bridled at the notion that denying men information about their own health was the solution. He broke his silence to write a piece for The (Raleigh) News & Observer advocating a different path: Continue screening but provide better support to help men understand the risks and benefits of all their options.
Goodall also noted that African-American men, who are at significantly higher risk than whites, and men with a family history of prostate cancer should be especially vigorous in pursuing screening.
Mary Anderson, executive director of the Prostate Cancer Coalition of North Carolina, and Goodall's doctor are also among those alarmed by the drop in screening. Anderson, whose father died of prostate cancer, recommends that all men should have a baseline PSA screening in their 40s to make later readings more meaningful.
Watson says as the routine PSA tests dwindled, he has started seeing men who are checked only after they feel bone pain. At that point their PSA levels are through the roof, and their long-term survival prospects much bleaker than with early-stage cancer.
Luck runs out
Goodall, now 71, had already decided it was time to seek treatment even before he knew his cancer had spread. He was having urinary trouble, tiring quickly and feeling aches and pains — all of which could be symptoms of aging or of cancer.
Watson started him on hormone therapy, which squelches the testosterone that feeds the growth of prostate cancer. Even though Goodall had had a clean bone scan just last year, Watson suggested doing another.
That's when it became clear Goodall's luck had run out.
Watson says Scandinavian researchers have found that people who forgo treatment for prostate cancer can expect about a decade of good health, but the cancer often spreads to the bones in 12 to 14 years. "Eddie is sort of a model of the Scandinavian data," Watson said.
The hormone therapy is likely to stop the growth of the bone metastases, perhaps even shrink the lesions, Watson said. But eventually that will stop working.
Until recently, the average life span after the cancer learns to thrive without testosterone was about 18 months, Watson said. Advances in immunotherapy, newer targeted therapies and second-line hormone therapies have extended that. Such treatment is expensive, Watson said, but Goodall could expect another five to 10 years.
Still, "his prognosis is not good," Watson said.
In the weeks after his Stage 4 diagnosis, Goodall displayed the sheepish bemusement of a man trying on a new costume. He could look at his bone scan — he has his own copy — but it didn't quite feel real. He was still going to the gym. He went to watch the Wells Fargo golf tournament in early May, and while walking from the parking lot drained him, he enjoyed it.
"I'm sitting here smiling about it," Goodall said as he sat down for an interview about his illness. "I'm not quite sure why."
Each path is different
One thing was nagging at him, though. He had heard Bingham, who retired from the Senate last year, was sick. Goodall had trouble reaching Bingham, and worried that his friend, too, was dying of cancer.
Then he found a phone number for Bingham at his home in Denton, about 60 miles northeast of Charlotte.
Cautiously, he inquired about his friend's health. Bingham was just fine. The illness Goodall had gotten wind of was temporary and unrelated to cancer. In fact, Bingham was preparing for a cross-country motorcycle ride.
"I'm getting a lot of pleasure out of drinking beer and riding motorcycles and eating whatever I please," Bingham, who is also 71, told a reporter. "I'm just very blessed."
Goodall was practically giddy. That drove home what he believed all along: Each man has to make his own choices. And sometimes saying "no" to treatment is the right path.
For Goodall, silence and secrecy are no longer the right path. Almost 165,000 American men are expected to get a prostate cancer diagnosis this year, and Goodall believes they need support navigating the tough choices that follow.
"For goodness sakes, talk to at least two doctors. Maybe three," he said. "Talk to other men about it. Be open about it and get advice. The more information the better."
Information and support
The Prostate Cancer Coalition of North Carolina, based in Research Triangle Park, offers information and a "brother to brother" support network. NCPCactivist.org or 919-703-5345.
Novant Health's Buddy Kemp Cancer Support Center offers a monthly support group in Charlotte for people with prostate cancer: 704-384-5223.