One way to look at Glynn’s story is as a success. His cancer was removed. His impotence is being managed. But Glynn sees it differently, and so do many other men who have been treated for prostate cancer. Darryl Mitteldorf is the executive director of Malecare, a cancer-patient support group. He says it is not uncommon for men to regret their decision to be tested and treated for prostate cancer. “We have men come in very upset, week after week, telling us what they’re not telling their doctors,” he says. One-third of men who are given a P.S.A. test were never asked if they wanted it. Of men who are asked, more than half say their doctor failed to mention possible side effects that result from treatment.
Brawley tells the story of a patient who had surgery and then underwent radiation, which left him with severe damage to both his rectum and ureter. “He had every side effect known to man,” Brawley says. “He had a bag for urine, a bag for stool, he was a terrible mess, in and out of the hospital with infections.” The man died six years after his surgery, from an overwhelming infection. Yet cancer statistics would list such a man as a success story, Brawley says, “because he survived past the five-year mark.” Would an untreated prostate cancer have killed him within six years, too? There is simply no way to know.
Many doctors suggest that African-American men and those with a family history should be tested as early as age 40, because they are at increased risk of dying of prostate cancer. But Brawley, who is African-American and has declined P.S.A. screening himself, says this recommendation is based on conjecture, and even for men at higher risk, the test may cause more harm than good. Until the proper studies are done, he asserts, “We just don’t know.”
The dueling narratives of P.S.A. testing boil down to the way each side frames the potential for harm from the disease compared with the collateral damage from the test and subsequent treatment. Mohler says, “P.S.A., when used intelligently to detect prostate cancer early in men after proper education . . . performs pretty well; it actually performs better than a mammogram.” P.S.A. advocates are concerned that statistics play down the value of each life saved. Some also argue that the statistics will validate their view as men are followed beyond 14 years. More important, they worry that if men reject screening, malignant cancers will go undiagnosed.
David Newman, a director of clinical research at Mount Sinai School of Medicine in Manhattan, looks at it differently and offers a metaphor to illustrate the conundrum posed by P.S.A. screening.
“Imagine you are one of 100 men in a room,” he says. “Seventeen of you will be diagnosed with prostate cancer, and three are destined to die from it. But nobody knows which ones.” Now imagine there is a man wearing a white coat on the other side of the door. In his hand are 17 pills, one of which will save the life of one of the men with prostate cancer. “You’d probably want to invite him into the room to deliver the pill, wouldn’t you?” Newman says.
Statistics for the effects of P.S.A. testing are often represented this way — only in terms of possible benefit. But Newman says that to completely convey the P.S.A. screening story, you have to extend the metaphor. After handing out the pills, the man in the white coat randomly shoots one of the 17 men dead. Then he shoots 10 more in the groin, leaving them impotent or incontinent.
Newman pauses. “Now would you open that door?” He argues that the only way to measure any screening test or treatment accurately is to examine overall mortality. That means researchers must look not just at the number of deaths from the disease but also at the number of deaths caused by treatment.
Many experts agree with Newman, and two large studies of P.S.A. screening, published in The New England Journal of Medicine in 2009, came to the same conclusion: There was no difference between the screened and unscreened groups in overall deaths. One trial, conducted in the United States, showed no reduction in prostate-cancer deaths over a period of up to 10 years when men 55 and older were screened. The other, which was carried out in several European countries, showed that screening reduced mortality from prostate cancer by 20 percent, yet the overall number of deaths in each group was the same. Newman gives one possible reason for this: the benefit of early diagnosis could be offset by complications from diagnostic tests and subsequent treatment.
Each study has been criticized for design and execution issues that might have skewed the results, but the failure to reduce overall mortality reported in the European study is probably no fluke, Newman says. An analysis of six studies of screening involving nearly 400,000 men, published last year in the British medical journal BMJ, found no significant difference in overall mortality when screened men were compared with controls. Philipp Dahm, a professor of urology at the University of Florida College of Medicine and lead investigator for the analysis, says the study shows that P.S.A. screening “does not have a clinically important impact” on overall mortality. Or as Kramer, an author of the U.S. study, crisply puts it, “Men may be trading one cause of death for another.”
For Brawley, the greatest tragedy of P.S.A. screening is that it has been a distraction from making greater progress in reducing deaths with the one clear helpful thing: distinguishing between the prostate tumors that really need to come out and those that are better left alone. Instead, new types of P.S.A. screening are being promoted. “We live in a time when our failure to define questions properly has delayed our progress and harmed health,” he says. “We keep pursuing son of, son of P.S.A.”
As it stands, each man must decide for himself how he wants to play the odds. “Let’s put this in perspective,” says Welch, whose most recent book is
“Overdiagnosed: Making People Sick in the Pursuit of Health.” “The European trial says 50 men have to be treated for a cancer that was never going to bother them to reduce one death. Fifty men. That’s huge. To me, prostate screening feels like an incredibly bad deal.”
Other men, Welch acknowledges, may arrive at a different conclusion, and he is careful to avoid pushing his own patients in one direction or the other. The answer is ultimately personal, he says, and while studies of groups of people can feel unhelpful if you could be the one in the group with cancer, that is all we have to go on.
The solution, in Welch’s view, and in that of a growing number of physicians, including Brawley, is to make sure men fully grasp the downstream decisions they may face as a result of screening — the risk of knowing too much. Studies have found that when men are given balanced information about both the cons and pros of P.S.A. testing, they are less likely to opt for screening than men who were merely offered the test. Given this, Brawley asks, how can it be ethical for a doctor not to inform men of the risks — or to fail to even tell a man that the test has been ordered? “If a man understands the risks and benefits and does not want to be screened, that decision should be supported,” he says. “But just saying that gets you in trouble.”