When Peter Bentey was diagnosed with prostate cancer, the doctor told him that he needed surgery. So did the doctor who gave him a second opinion. And the third. And the fourth.
Prepared to have his prostate removed, Bentey kept an appointment with Dr. H. Ballantine Carter, a Johns Hopkins urologist and oncologist. Carter looked at Bentey's blood work and did his own biopsy. The doctor's conclusion? Bentey had prostate cancer, but the New Jersey man did not need surgery. At least not right away.
Bentey's cancer appeared to be growing slowly, so Carter recommended a wait-and-see approach.
"He said, 'You're going to die someday, but I don't think it's going to be of prostate cancer,' " Bentey recalls.
That was in 2002. A couple of weeks ago, Carter gave him the all-clear for another six months.
Nearly half of the men diagnosed with prostate cancer in the United States have what is considered a low-grade disease, which many doctors say is unlikely to kill and does not require immediate treatment, be it surgery or radiation. But just a small fraction of those men - less than 10 percent, by most estimates - delay.
Instead they opt for what Carter and many others say could be unnecessary treatment with side effects that can harm urinary and sexual function.
"The knee-jerk reaction that everyone with prostate cancer needs curative intervention may not be the best approach," Carter said.
Leading prostate cancer experts agree that close monitoring of the disease - a process known in some circles as watchful waiting, in others as active surveillance - probably is the best course for a large number of men. But few long-term studies have been done to confirm that, because few men are willing to participate in research in which the cancer is left untreated.
Even longtime proponents of active surveillance say the wrenching decision of which avenue to pursue is complicated by the fact that some of the men who wait will end up with advanced cancer - and the small possibility that it cannot be cured.
"It flies in the face of the American approach to disease, which is, 'I've got to do something now,' " Carter said.
Dr. Ian Thompson, chairman of urology at the University of Texas Health Sciences Center, agrees. "Men look at prostate cancer and they think cancer - 'the Big C.' And they think, like pancreatic cancer and lung cancer, 'I must treat it,' " Thompson said. "But it's a different disease ... than many other cancers."
Prostate cancer is second only to lung cancer as a killer of American men with cancer. And it is the second most common cancer among men in the United States. Only skin cancer affects more.
In the past two decades, the number of American men diagnosed with prostate cancer has skyrocketed - there were an estimated 186,000 new cases last year - as a blood test that looks for a protein called prostate-specific antigen (PSA) has become more routine.
Early detection has led to a reduction in deaths, from roughly 31,000 annually to about 27,000. But it also has led to many more surgeries. For every 20 to 100 more people treated, doctors say, one life is saved.
Thanks to PSA, many of the cancers being found are much smaller - and less dangerous - than those that had previously been discovered through physical exams. So the question has become: What should be done about them?
"That really is the big conundrum in prostate cancer, whom to treat," said Dr. Howard Parnes, chief of the prostate and urological research group at the National Cancer Institute in Bethesda. "Many more men die with prostate cancer than from prostate cancer."
In determining whether a patient is a candidate for active surveillance, Carter looks at a series of factors, including PSA levels, whether a tumor is palpable during a physical exam, and a score based on the microscopic appearance of cancer cells in prostate tissue, which gives an idea of a cancer's aggressiveness.
But Carter, like other doctors, cannot say with certainty that the cancer won't spread if the patient holds off on treatment. What he has been able to do is spot a growing cancer early enough so that the window of opportunity for cure is not closed. He has done this with a group of 700 men with low-grade prostate cancer whom he has been studying since 1995. When he broke down data on the first 562 men in his study, 35 percent went on to be treated and 2 percent died of other causes.
"No one has ever died of prostate cancer in this program," Carter said.
Carter cautions that he is "incredibly conservative" about whom he chooses for surveillance. He rarely includes men in their 50s because if he and his staff are wrong, the chances of harm are greater. Older men are more likely to have other diseases that are likely to claim them before the cancer does.
"More and more doctors are beginning to recognize we are grossly overdiagnosing prostate cancer in this country," said Dr. Peter C. Albertsen, a Hopkins-trained urologist and a surgeon at the University of Connecticut Health Center in Farmington. But "it's still a vast minority of patients who pick [active surveillance]. A lot of doctors don't even discuss it."
Studying whether treatment or observation is a better option for men with low-grade prostate cancer has been difficult. One clinical trial in the United States is having trouble recruiting enough men to participate because it has been hard to convince patients - and their doctors - that being in the surveillance arm of the trial is a safe option.
One Swedish study showed that the outcome after surgery was slightly better after 12 years, but no patient over 65 benefited from surgery in the trial, Albertsen said.
"If we could demonstrate surveillance was as safe as active treatment, the quality of life of hundreds of thousands of men would be improved, not to mention the [savings]," said Thompson, who also is studying men who have chosen active surveillance instead of surgery or radiation.
Much more research, these experts say, has been done on breast cancer, because women have been more willing to enroll in clinical trials that have led to better answers and better treatments. The lack of studies of prostate cancer makes it difficult for doctors to persuade men to consider active surveillance.
Even with men who are good candidates for waiting, "you've got to spend a lot of time talking patients out of treatment," said Dr. Peter Scardino, who heads the surgery department at the Memorial Sloan-Kettering Cancer Center in New York. "I look them in the eyes and say, 'If I had what you have, I wouldn't let anyone touch me.'
"Every visit you go through this again."
These emotional conversations often include a wife who says that she doesn't care about the incontinence or impotence that can result from surgery. "I just don't want him to die of cancer," she'll say.
And after all of that, Scardino says, "you can't be certain that you're right." Every urologist, he says, has had that low-grade patient who opted for surgery and then it turned out that the cancer was much worse than the doctor originally believed. Then he is left to wonder, what if the patient had been put on watchful waiting?
Scardino is a proponent of the surveillance approach but says he wants to be sure that patients are fully evaluated and with a repeat biopsy before they choose that route. He said doctors must be sure that a larger cancer is not lurking undiscovered.
Researchers are looking for better markers for which cancers will be aggressive and which will not do harm. Carter hopes that his group of patients will add to that knowledge.
And it is crucial that men on active surveillance stick with the program, even after five years without progression.
"You begin to think it is nothing," Scardino said. But because of the way this cancer can grow, it can still turn into something many years later. "With active surveillance, five years is just the beginning."
Bentey was 53 when he was diagnosed with prostate cancer. After consulting with Carter, he decided to buck those other doctors who had pushed for surgery. Now 60, he drives to Johns Hopkins from his New Jersey home every six months to see the doctor. Every year or so, he gets a follow-up biopsy.
"I feel comfortable with the decision," he said.
But, he added, "I've met four or five people who said I was crazy. ... I don't feel that way. So far, I've had seven very good years."
Bentey knows that active surveillance isn't for everyone. He referred two of his friends to Carter - and the doctor recommended surgery for both.
"He's not going to gamble," Bentey said.