One wonders how many men have their blood tested for PSA levels looking for prostate cancer without being asked if that’s what they really wanted.
The Foundation for Informed Medical Decision Making (which supports my web publishing efforts) has now posted on its YouTube page a video clip with a man who has some regrets about his prostate cancer screening and treatment experience. It’s the same man featured in the New York Times Sunday magazine piece, “Can Cancer Ever Be Ignored?“
Relevant excerpt from the NYT piece:
“Tim Glynn, a self-described country lawyer from Setauket, N.Y., was 47 in 1997 when he went to his primary-care doctor, troubled by a vague feeling of being down. After his physical exam, Glynn was sent to have his blood drawn. Along with thyroid and cholesterol levels, the doctor ordered a P.S.A. test. A week later, Glynn returned to hear the results. His P.S.A. was elevated. He was told to get a biopsy as soon as possible.
After the biopsy, he walked into a bar in the middle of the afternoon and ordered a martini. A few weeks later, Glynn’s urologist told him the biopsy showed prostate cancer and recommended that he have his prostate removed immediately. Glynn chose to do some homework first.
One of Glynn’s clients happened to be Richard Ablin, the scientist. Ablin told him that not all prostate cancers are alike, and that he could wait; if he developed symptoms, or if his P.S.A. shot up, he could always opt to be treated at that time. (Some doctors recommend “active surveillance,” in which the patient is periodically given P.S.A. testing and biopsies, rather than immediate treatment.) Glynn chose to hold off on surgery.
Kerri Glynn, Tim’s wife of now 39 years, was terrified by her husband’s decision. “I felt as if an ax had fallen,” she says. In her mind it was better to be safe than sorry, and safe meant being treated immediately. “She was a wreck,” Glynn says. “She was scared witless.”
His colleagues were also worried about his decision to forgo treatment. “My business partner was clearly very anxious, and my assistant asked if she should look for a new job,” Glynn recalls. “And there was the fear that if this became public knowledge, there would be clients who wouldn’t want to deal with us because they wouldn’t want to engage a lawyer who was going to be dead the next day. When you see the people around you falling apart, you sort of have to get treated for them, so you can go back to a normal life.”
For many people, not being treated after a diagnosis of cancer is psychologically unbearable. Our view of cancer, says Barnett Kramer, is still shaped by the fact that until relatively recently, cancers were only discovered when they were causing symptoms. Before current treatments were available, such cancers were often fatal. We can now screen for cancers long before they become symptomatic, but it’s still very difficult to imagine that they can safely be left untreated. Brawley says, “I have had patients say, ‘Damn it, I’m an American — you can’t tell me I have cancer and we’re going to watch — you have to treat it.’ “
Glynn had the surgery. Fourteen years later, he still takes drugs for impotence. It would be more than a year following surgery before he had the energy to play a set of tennis again. “The toll that this took on energy and physicality was like being aged five years,” he says.
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.”
The Foundation also posts video clips from its decision aid on prostate cancer screening, featuring one doctor who chooses to have the PSA test and one who chooses to decline such screening. How many men never hear such a rational discussion before having the PSA test?