CHAPTER 13
... In which the author presents the many and varied opinions of the doctors he interviewed
UROLOGISTS, RADIOLOGISTS, AND SURGEONS know much more about prostate cancer than I do, and, unless you are a doctor yourself, much more than you know. During my months of research for this book, I never stumped a doctor with a question. I never had one of them say, “Hmm, I never heard of that.” They keep up. They care. They know what they’re doing.
But doctors are human. They are not infallible. They do not speak directly to God. If they did, they would speak with one thunderous yet soothing voice, and—trust me—they do not. They have their own prejudices and sometimes form their medical opinions based on those prejudices. They are like Italian grandmothers, each with her own recipe for the perfect tomato gravy, each convinced hers is the only way to make it, each convinced that all others are just so much immondizia.
So take much, but not everything, from these portraits of the doctors I interviewed, all of whom are involved, in one way or another, in the battle against prostate cancer.
Patrick Walsh, MD
Acclaimed Urologist, Surgeon, Researcher, and Author at Johns Hopkins
“I think we’re going to see death rates [from prostate cancer] go back up again.”
Dr. Walsh’s second full-time job was as director of the Johns Hopkins Brady Urological Institute. That’s something like the urological equivalent of coming out of high school and starting as shortstop for the New York Yankees. By the age of 30, Dr. Walsh, the son of an Akron, Ohio, cigar store owner, had a track record in all fields of urology, which had a long way to go in 1974, the year he took over at Hopkins.
Men were presenting at doctors’ offices with advanced metastatic cancer. Radical prostatectomies were rarely performed (in only about 7 percent of diagnosed cases) because the procedure produced a gruesome amount of blood loss, permanent disappearance of sexual potency in almost every man, and permanent loss of urinary control in up to 25 percent of men. That meant there was little research and development going on because of the dearth of available post-op tissue. “Both patients and physicians agreed,” said Dr. Walsh, “that the treatment was worse than the disease.” Plus, radiation, the most common form of intervention, was nowhere near as sophisticated and effective as it is today.
So Dr. Walsh set out to find a better way to extract a cancerous prostate. He turned his operating room “into an anatomy lab,” as he puts it, and studied cadavers of young males in whom the tissue wasn’t so deformed. His aha moment came when he isolated the trunks of nerves that led to the prostate and those that were involved in erection. This is a vast oversimplification, of course, but the bottom line is that Dr. Walsh began performing prostatectomies that did not result in massive blood loss and went a long way toward preserving function, particularly erectile.
He still remembers the date when he performed what he considers to be the first nerve-sparing prostatectomy.
“April 26th, 1982,” he says, relaxing in his Hopkins office, though, to be honest, relaxing is not a state I associate with Dr. Walsh. “I did it on a professor of business from Cleveland. Thirty years later that man has an undetectable PSA and a normal quality of life.”
What Dr. Walsh did after that was just as important—he opened the doors of his OR. “I never felt competitive about it,” says Dr. Walsh. “Look, why is Hopkins on this earth? To train leaders in urology, make discoveries, and share them with others. I would ask prospective patients if they wanted to bring along their urologist so I could teach them. I’ve had 20 urologists in the room at one time observing me during the operation. Probably 3,000 to 4,000 have watched over these 30 years. I’ve made 50,000 DVDs and given them to every urologist in the world who wanted one.”
(He even gave one to me. I am thinking about trying to do this radical prostatectomy thing in my spare time.)
As the number of operations went up, so did the amount of tissue available for study. With the advent of PSA testing, by the mid-1990s more and more men were being treated earlier, and better, for prostate cancer. Public awareness of and education about the disease increased exponentially, and did so again when in 2001 Dr. Walsh wrote his Guide to Surviving Prostate Cancer, now in its third edition.
Like many others, Dr. Walsh is angry that the USPSTF never contacted him for input, but positively aggrieved at what he sees as the deleterious effects that will result from the recommendation against PSA screening.
“What I worry about are the young men who are listening to the advice that they shouldn’t get tested,” says Dr. Walsh. “In 1990, 20 percent of men who were newly diagnosed with prostate cancer had metastases to bone. That’s just a fact. Now it’s 3 percent. If you take the death rate from prostate cancer in 1990 and the most recent data in 2008, the number should be about 60,000 deaths. But it’s only 28,000 deaths. Why?
“Because we improved the surgical procedures and PSA [tests] came along. Now it’s easier for us to find the men who are curable, and suddenly, we have what we had in most other fields of medicine—a way to diagnose the disease at a curable stage and a curative form of treatment. And what results is a tremendous decline in mortality.
“But if people listen to the USPSTF, I think we’re going to see death rates go back up again. With the influx of the baby boomers, [by 2050] there’s going to be about 40 million men in the age group that’s most susceptible to prostate cancer.
“Plus, men are living longer. Between 1975 and 2000, deaths from cardiovascular disease in men under the age of 85 fell by about 50 percent. They used to say that people didn’t die from prostate cancer because they will die from something else. But now people are living longer and not dying of cardiovascular disease. And so they will die of prostate cancer.”
James Manley, DO
My Primary Care Physician
“We have to look at patients on an individual basis.”
I have been going to Dr. Manley for almost 20 years. We’ve grown older together. I feel like I know him even though we don’t socialize outside of the office. He probably feels like he knows me, too. Oh, the anatomical secrets that a PCP takes to the grave.
When I interview him, he gives me his thoughts on primary care philosophy and the USPSTF recommendations against testing.
“No matter what the panel says, it is putting a much greater emphasis on cost than we ever had before,” says Dr. Manley. “It is about numbers. How many people do I have to put on a statin to prevent one heart attack? How many people do I have to order a PSA test for to prevent one death from prostate cancer? And all the statistics in the world can’t hide this fact: If you happen to be the one in a hundred or the one in a thousand who dies from something because you were not screened, the numbers don’t mean anything to you.
“The controversy is only going to get worse, and I think primary care doctors are really going to have to look at the reasoning behind these recommendations against screenings. Let’s say a man comes to me at age 50 and I don’t recommend PSA screening, and at 55 he comes back with lower-back pain and it turns out to be prostate cancer. And he wants to sue me because I did not order a PSA test. I can say, ‘Well, they told me not to screen.’ Okay, we’ll see if lawyers really care about that.”
Dr. Manley pulls up the USPSTF recommendations on his smartphone and begins reading.
“Okay, 55-year-old, doesn’t smoke, sexually active. The ‘A’ recommendations include aspirin to prevent cardiovascular disease. Colon cancer screening gets an A. High blood pressure screening, an A. That makes sense.
“But then how ridiculous is this? HIV screening and syphilis screening are also A recommendations. Really? Where are they getting the numbers from? I have been in practice for 25 years and I have never—never—had a newly diagnosed HIV patient.”
“That’s because you serve, basically, a white, suburban, middle-class population,” I say.
“That’s exactly my point,” says Dr. Manley. “Individual doctors should decide wh
at screens are necessary and what are not. And I am still waiting for one of these higher-up, ivory-tower docs to convince me that we will do worse in the long run by testing somebody as opposed to [seeing] someone to whom we do nothing and his cancer eventually metastasizes. They try to tell me that the average man is going to die of something else. Well, not somebody who gets prostate cancer at 40. That guy is going to die of prostate cancer if he’s not treated.”
Dr. Manley believes that the USPSTF guidelines are more about future cost considerations than about the tests themselves. That may be obvious. According to the Web site Healthcare Blue Book, a PSA test costs between $23 and $45. But that turns into at least $1,500 if it leads to biopsy at an ambulatory surgery center. The digital rectal exam doesn’t cost anything (unless you want to add up the damage done over time to a physician’s finger, or a patient’s psyche), yet it gets a D rating, just like the PSA test. What could be the harm in doing a test that literally takes seconds and just might uncover something?
“What they’re worried about is not the cost of the test, but the costs that can result when something is discovered because of the test,” he says.
Dr. Manley understands the general movement toward eliminating screening tests that might be ineffective. And he believes the common wisdom that younger primary care physicians, schooled in an era when the USPSTF has a heavy hand in health care, will be far less likely to screen for anything that is not rated A or B. But in his 25th year of practice, he’s not about to do a one-eighty on prostate cancer.
“When I train younger physicians,” says Dr. Manley, “I still tell them the old-fashioned way—PSA screening and digital rectal exams. As a family doctor, my primary goal is to keep people living healthy lives for as long as possible. To do that, we have to look at patients on an individual basis. Right now I have a patient who is in his mid-70s. He swims a mile a day, walks the course every time he plays golf. He is in better shape than some 20-year-olds I see. He had prostate cancer, he wanted it out, and I agreed. Why not? He has an excellent chance of living 20 more years, so why not give him every opportunity to do that? But a person his age with dementia? Of course not. You don’t treat him. You don’t give him radiation.
“As for you, I would recommend exactly what we did. I still think a healthy young person—and I’m going to consider you young in this case—has a better chance at longevity by getting the cancer out. That is not going to change for me.”
Jerry Blaivas, MD
Noted New York City Urologist
“I consider myself an agnostic when it comes to prostate cancer.”
Several years ago, when Dr. Blaivas was being treated for a kidney stone, a couple of residents, without telling him, made sure that his PSA was checked in routine blood work. Smiling all the while, they told him what the reading was. He doesn’t remember the number (it wasn’t high), but he does remember his annoyance.
“They did it as a joke, but I didn’t appreciate it,” says Dr. Blaivas. “Things like that have very serious consequences.”
Dr. Blaivas is a clinical professor of urology at Weill Cornell Medical College, an attending surgeon at NewYork-Presbyterian and Lenox Hill Hospitals, and the father-in-law of a friend of mine, Chris Stone, the managing editor of Sports Illustrated. Chris told me to be sure to interview him.
“Jerry’s a smart guy with a lot of opinions,” said Chris.
Right on both counts.
Dr. Blaivas’s specialty is not prostate cancer. It is treating bladder-related complications resulting from urological treatment, incontinence in particular. Dr. Aaron Katz calls Dr. Blaivas “the father of urodynamics, one of the important people who invented testing for men and women with bladder issues.” Along the way, Dr. Blaivas has developed some strong opinions about prostate cancer.
Or, looking at it another way, he hasn’t come to any opinion at all.
“I consider myself an agnostic when it comes to prostate cancer,” Dr. Blaivas tells me at his office on the Upper East Side of Manhattan. “Most urologists believe that prostate cancer is a deadly disease and that early detection and treatment is of benefit. I’m an agnostic on that point. It has yet to be proven to my satisfaction.
“If prostate cancer could be cured by a pill with no side effects, there would be no controversy. Or if treatment killed 90 percent of the patients, there would be no controversy. But we’re in the middle of that.
“And the middle is this: Most 62-year-old men [with] Gleason 6 [he’s talking about me here] would live out a normal life expectancy whether or not they’re treated.”
Keep in mind, as Dr. Blaivas himself acknowledges, that he is coming at this from the perspective of someone who sees symptoms that result from treatment. He doesn’t usually see men dying of prostate cancer; instead, he sees men with issues related to prostate cancer intervention, both surgical and radiological.
“You might say that makes me biased because I see so many complications,” he says. “And, yes, I see that downside all the time. But what I’m saying is that we don’t even know if the upside is curative. So for me, it’s just not worth it.”
I ask him if he would advise his son-in-law, my friend, to get a PSA test.
“No,” says Dr. Blaivas. “I would advise my son-in-law to be aware of colon cancer, glaucoma, blood pressure, and diabetes. About those things I am not an agnostic. I’m on the bandwagon. Those things, we know that if you’re screened and diagnosed early the treatment is unequivocal. That’s not the case for prostate cancer.
“My big public education push, if I can call it that, is whether to get screened in the first place. To me, that’s the crucial decision a person makes. Because unless you’re really in the know about it, the odds are overwhelming that you will end up with a prostate biopsy if you have an elevated PSA. And there’s a pretty good chance that you’ll end up with prostate cancer and a pretty good chance that you’ll end up with treatment that could’ve been avoided if you had never gotten screening in the first place.”
I ask him if he agrees with the USPSTF recommendation against PSAs. That puts him in a tough spot. Doctors as a whole are reflexively against government intrusion, and Dr. Blaivas will give you chapter and verse on the consequences of having too many federal rules and regulations.
“I think people should at the very least become as educated about their health as they are about anything else in life,” answers Dr. Blaivas. “Most guys know more about the details of what car they’re going to buy or what sports team they follow than they know about their health. Much as you did. You investigated. You talked to people.”
But I wouldn’t have known about my prostate cancer, I tell him, without my primary care physician telling me that I had an elevated PSA.
“I’m not saying you or your doctor did anything wrong,” answers Dr. Blaivas. “What I am saying is that I would’ve preferred he sat you down and told you all about prostate screening.”
Dr. Blaivas makes it clear that he would never tell me I made a mistake by having surgery. (Or tell me that outright, anyway.) And he allows that deciding on intervention, if it comes to that, is a personal decision that might involve extenuating factors.
“All the men in my family died of cardiovascular disease, diabetes, things like that,” says Dr. Blaivas. “One hundred percent. So I figure my mortality is more heavily weighted in that direction.”
I tell him that it’s the opposite for me—cancer wins out over cardiovascular disease.
“That is totally understandable,” he says. “Remember, I said I am an agnostic. I’m not against anything. I’m just not sure.
“And let me be clear that I have great respect for the prostate cancer treatment advocates. As a group they are incredibly bright, highly motivated, and wonderfully good surgeons. So if it’s just a matter of patient preference, most people feel uncomfortable knowing there’s cancer in their body. Plus, there are people for whom treatment is surely lifesaving.
“But the present data doesn’t give
me enough confidence to say that it’s necessary or worthwhile to pursue early diagnosis and treatment. What I’m saying is that I’m older than you, and it’s entirely possible that I have prostate cancer.” He sends me off with a warm smile. “I just haven’t checked.”
Peter Bach, MD
Writer and Researcher on Cancer and Public Health Policy
“Screening is a very, very inefficient enterprise.”
It is the worst of interview beginnings.
I meet Dr. Bach at a restaurant in Midtown Manhattan. We shake hands, we sit down, and I say:
“How is your wife? Is she doing okay?”
He pauses for a moment. “She passed away. In January of this year.”
Dr. Bach had come to my attention through a series of well-written articles he had done for the New York Times. Some of them mentioned prostate cancer, but they were more about general health care policy, research on which he is actively involved at the national level.
He had also written about his wife, who was battling breast cancer, and I had assumed that she was still alive. I met with him in June of 2012, and at that point he hadn’t been able to bring himself to write about her death. As of March 2013, he still hadn’t.
Dr. Bach has written extensively about overtesting in medicine. He was part of that chorus telling me that I had probably done the wrong thing in opting for surgery. But he was telling me so eloquently. So in what seemed like a logical segue, I asked if his wife, Ruth, who had been 46 when she died, had received regular mammograms.
“It is perfectly okay to ask me that question,” says Dr. Bach. “But I have decided I’m not going to answer it. I’ll tell you my reason. Obviously it’s not privacy, because I’ve written about her illness. My worry is that people will look at individual cases and ask those sorts of questions and make judgments. If I say that she was 43 and had regular mammographies, one would conclude, ‘Oh, they must not work very well.’ And if I said she didn’t get them, some might conclude, ‘Oh, how irresponsible. That’s the reason she died.’”
The Prostate Monologues Page 11