In 1997, Halifax Community College math instructor Wendell Perry was diagnosed with an aggressive case of prostate cancer. It was found at what would be an unusually early age for a white man.
But Perry is African-American. So it wasn’t odd that he was facing a threatening form of the disease while still in his mid-50s.
Nor was it strange that he hadn’t been told how common and dangerous prostate cancer was for black men.
Or that he initially didn’t get good care in his mostly rural community of Garysburg, where the only urologist practicing then – there are none now – misdiagnosed the illness, Perry said.
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Nor is it strange that his father, William Odell Perry, died from the disease at age 65. Or that an uncle, Pocahontas “Net” Cherry, fell to it in his late 60s.
Or that Perry, now 74 and retired in Raleigh, knows more than 10 black men who have been diagnosed with prostate cancer.
The likelihood of black men getting prostate cancer and dying from it represent two of the biggest gaps between the health of black and white men in the United States. The gulf is particularly wide in North Carolina, where the odds of dying from prostate cancer are among the worst in the nation, with African-Americans nearly two times as likely as whites to be diagnosed with it and nearly three times as likely to die from its complications.
For every 100,000 African-American men in North Carolina, 216 per year will develop prostate cancer, and 48 will die of the disease, according to the N.C. Central Cancer Registry.
“The mortality is worse and the incidence is worse” for African-American men, said Dr. Daniel Watson, who leads the multidisciplinary clinic for urologic cancer at Novant Health Presbyterian Medical Center in Charlotte and has a private practice at Urology Specialists of the Carolinas.
“They appear to get the disease earlier, and they appear to have a more aggressive disease,” Watson said. But they can be hard to reach. Watson recalls several times, years ago, when he held educational sessions at black churches. Few people showed up, and the women outnumbered the men.
Across North Carolina, especially in Northeastern and Eastern North Carolina counties where the African-American population approaches or exceeds 50 percent, the disease is often more dangerous for black men than the state’s sobering average.
In Northampton County, about 75 miles northeast of Raleigh, black men are nearly four times more likely than whites to succumb to the disease, according to data from UNC-Chapel Hill’s Lineberger Comprehensive Cancer Center.
The same is true in Lincoln County, 40 miles west of Charlotte, where prostate cancer kills 87 out of 100,000 black men, compared with 22 white men.
But urban areas also show the disparity. In Mecklenburg County, African-American men are three times as likely as whites to die from prostate cancer.
For black men, prostate cancer is a fearsome disease.
“If there’s a history in the family, you pretty much need to assume that you’re going to have prostate issues or prostate cancer,” said Kelly Breckenridge, who with her daughter, Brittany, started a campaign – A.C.E. Your Prostate Exam – to raise awareness about prostate cancer for men in Mecklenburg County. “A.C.E.” stands for awareness, commitment and education.
Breckenridge became interested in prostate cancer after her father was diagnosed with it and had a radical prostatectomy, or surgical removal of his prostate gland, in New York in 2007.
The mother and daughter recently won the inaugural Digital Impact Award at the annual SEED20 competition in Charlotte, where social entrepreneurs are nominated to pitch their missions to gain community and financial support. They’ll use the $10,000 worth of in-kind Web and digital services to update their website.
They have reached more than 150 black men at several educational forums at public libraries. And they are planning a golf tournament/fundraiser on Sept. 12 in the Ballantyne area. “We are committed to providing men with information about testing and resources,” Kelly Breckenridge said.
“It’s an epidemic,” said the Rev. Thomas L. Walker of Rocky Mount, who was diagnosed with an aggressive form of the cancer at age 47 and has become a prostate cancer activist, spreading the word among black communities about the dangers.
“It has been a tremendous toll, and the nature of the disease perpetuates it and makes it worse because you have to break through that barrier and deal with something that’s really private for many of us,” Walker said.
‘It weighs on you’
It’s the accepted family story now that if Wendell Perry’s urologist hadn’t himself died of prostate cancer, Perry would never have been properly diagnosed.
Later, his general practitioner didn’t like Perry’s symptoms and sent him to Duke Medicine in Durham for a proper check. Results from the standard, but unreliable, PSA blood test for prostate cancer, which measures the level of a substance put out by the prostate, looked bad.
A doctor then took several biopsies, tiny samples of tissue, from various parts of his prostate.
“They told me I had so many hits, about 11 or 12, that it was really bad.”
Perry decided to have his prostate removed. Now, 17 years after the operation, routine checkups continue to show that he’s healthy, Perry said.
When it hits your family hard, as it has Perry’s, that’s a risk factor that doctors use to evaluate whether you should be screened and, if you are diagnosed, whether your case is likely to be dangerous.
“It weighs on you,” Perry said, “but what can you do except move on and try to keep your life together?”
Many of the hardest-hit counties around the state are rural and impoverished, and some have only a handful of doctors, if that. Outreach efforts to get accurate information about the disease to black men have sometimes been as rare as doctors’ offices where it can be diagnosed and treated and as scarce as the money to pay for health insurance.
About 300 African-American men die from prostate cancer in North Carolina every year. If the mortality rate were brought down to the same level as for white men, nearly 200 of them could be saved.
But the barriers to that are numerous, one long string of daunting bottlenecks. Some may be biological and harder to discern, though researchers are trying. Some are cultural, some socioeconomic, some tied to lack of insurance, some to lack of access to medical care. Those things can mean the cancer is found later, when treatment is less likely to succeed.
“If you’re an African-American male, you’re probably the least likely person to be in the preventive, health-seeking mode for any issue, and that’s been time-tested,” said Allen Smart, vice president for programs at the Kate B. Reynolds Charitable Trust, based in Winston-Salem. The organization funds projects to improve the health of low-income North Carolinians.
“Males are less likely than women, and African-American males are less likely than white males, to be health care seekers, and then when you include the access barriers and the levels of uninsured and underinsured, then you’re painting a picture of a public health crisis that people have, I think, come to think of as the norm,” he said. “And that’s really unfortunate, because it’s incredibly treatable, and in many cases a good regimen of care will get you back on your feet.”
A question of screening
The prostate is a walnut-sized gland that secretes fluid that nourishes and protects sperm. That fluid is expelled with sperm as semen during ejaculation.
In some ways, prostate cancer behaves oddly. It’s the most common non-skin cancer among U.S. men. But nearly two-thirds of all cases are diagnosed among men older than 65, and it usually grows so slowly that those who have it die of something else. More than 200,000 Americans are diagnosed with it each year, or about 138 per 100,000 men, and about 29,000 die from it, about 21.5 per 100,000.
In African-American men, though, it tends to appear not only more often but at an earlier age. It’s also more likely to be dangerous and fast-moving. And catching it early recently has become trickier: The usefulness of the standard blood test for prostate cancer has come under serious question. The ensuing debate over its merits has driven some away from testing.
It’s hard to say which of the many barriers is the first on the long road to getting a high-quality regimen of care. But near the top of that list is availability and accuracy of the information that black men get about prostate cancer screening.
Screening for the disease is one of the most controversial topics in medicine, mainly because of a recommendation announced in 2011 by the U.S. Preventive Services Task Force, an independent group of health care professionals that develops disease prevention policies for the federal government.
The task force recommended that healthy men of all races stop getting screened for prostate cancer with the PSA test, which measures the level of a substance released by the prostate gland into the blood. The panel concluded that, while screening with PSA probably saves some lives, it leads to unnecessary surgeries and other treatments that harm patients who otherwise might survive the cancer with little or no problem.
The recommendation led other groups, such as the American Cancer Society, to modify their own guidelines, made it harder for federally funded programs to get money to pay for screening and led some community groups to stop offering free screening events.
Mecklenburg County Health Director Dr. Marcus Plescia said advising men about PSA screening is difficult because the test does not “delineate who’s going to have an aggressive disease” that should be treated. Most prostate cancer will be “indolent,” meaning it will grow slowly.
Even though African-American men have higher rates of aggressive cancer, Plescia said diagnostic and treatment “have some pretty substantial side effects,” such as incontinence and impotence.
“It’s a tough problem,” Plescia said. “You feel like you ought to say we should be screening and finding it early. But it’s not as straightforward as that.”
Mistrust of medical institutions
Many experts disagree with the task force guidelines, saying they were developed without significant data on the effects of screening black men.
Dr. Durado Brooks, director of prostate and colorectal cancers for the American Cancer Society, has spent much of his career trying to enhance prevention in primary care and to improve care for medically underserved populations.
“The message that men get now is kind of confusing to say the least,” Brooks said. “The task force simply said men shouldn’t be screened, but if you dig down in their recommendations, they note that they don’t have enough data on black men to say anything about how screening affects them.”
Black men are more likely to be uninsured or underinsured than their white counterparts and less inclined to have regular checkups. Yet they are disproportionately affected by prostate cancer and other diseases, including sickle cell anemia and diabetes.
Research, including studies in North Carolina, has shown that black men tend to mistrust the medical establishment – in part a legacy of a notorious, four-decade study performed on black men at the Tuskegee Institute in Alabama. Federal researchers there infected hundreds with syphilis from 1932 to 1972 and watched to see what the disease would do to them.
And that’s one reason the task force recommendations didn’t have enough data to apply to black men: They are less likely to sign up for research studies.
A debate over the screening recommendations continues to rage in the medical community, with some thinking the task force guidelines make sense for all, some believing that they are more applicable to white men and others thinking that they’re completely wrong.
Experts on prostate cancer think that the confusion raised by that debate and the changes to the screening recommendations have made it even more difficult to persuade African-American men to see doctors or trust whatever they hear about prostate cancer.
“The way it was portrayed in some media outlets, words were being spoken like ‘Prostate cancer screening is killing men, not saving men,’” said Steven Patierno, deputy director of the Duke Cancer Institute, who does research on the genetics of the disease in black men. “Now, that’s a wonderfully controversial, eye-opening message for a reporter to latch onto and get it into a newspaper or on the nightly news.
“It fed into every innate fear that you could possibility find in the African-American community, and they played on that over and over and over again. And it did an incredible amount of damage.”
Patierno – like many other experts who are unhappy about the task force guidelines – recommends a careful, personalized approach. The idea is for health care professionals to educate men about their risk and about screening so they can make an informed decision. Reporter Gavin Off contributed.