I could get surgery and, chances are, the cancer will be gone forever. But surgery can bring about lingering problems of incontinence and erectile dysfunction. Yes, but these post-surgical effects are often not that bad.
But if they are, you’re the guy trying to hide a box of adult Depends in his shopping cart under gallons of strawberry ice cream. Or you’re the guy sitting in that ridiculous outdoor bathtub praying that things, you know, kick in before “The Daily Show” comes on.
Radiation is an excellent option. There are many variations to choose from. And if I had six years of medical school, maybe I could understand them all. But radiation is painless and, at my level of cancer, chances are the PC will be zapped forever. Except if it’s not, radiation makes it almost impossible to go back in and get the cancer.
“Watchful waiting,” also known as “active surveillance,” is an option. True, as long as I can talk myself into forgetting that I have cancer. Which is kind of like forgetting that you’ve swallowed a javelin. With watchful waiting, I can keep an eye on things, get another biopsy in a year and more frequent PSA tests. Except that PSA tests might not be reliable. I believe this is where we all came in.
For the record, I have tentatively decided on a course of watchful waiting, which my wife and I are convinced is the correct decision.
Unless it’s not.
CHAPTER 8
... In which the author gets a surprise at the Temple of Active Surveillance
THE STRATEGY OF NOT INTERVENING SURGICALLY or radiologically in prostate cancer started in Sweden as “watchful waiting.” That seems logical because the whole strategy seems so positively Swedish. Find out you have an ominous-sounding disease, brood about it, pick up a Henning Mankell mystery about a grisly murder on the fjord, brood about it some more, get drunk on brännvin, brood about it some more. . . .
I don’t know if Sweden’s socialized health care system had something to do with the movement toward watchful waiting, but watchful waiting—or “active surveillance,” to use the latter-generation nomenclature—is based on sound medical evidence. To repeat—prostate cancer is a slow-growing cancer, and there is much evidence that many men who have it will die of something else. Even watchful-waiting opponents acknowledge that. Where urologists differ greatly is in determining for whom watchful waiting can safely be recommended.
The perplexing part of the prostate cancer equation stems from the fact that the cancer generally has an indolent nature—emphasis on “generally.” You may have a generally placid pit bull, but that doesn’t make you feel better if 1 percent of the time he snaps and bites the little girl next door. “A better question to ask than why 80 percent of it grows so slowly,” says Dr. Chu of Roswell Park, “is why 20 percent of it grows so aggressively. We just don’t know that yet.”
So if there is resistance to the concept of simply monitoring cancer in the urological community, it’s no surprise that the thought of not acting on it is frightening to the general populace. Always has been, probably always will be.
There is little mention of cancer in ancient history, possibly because it is to a large extent an age-related disease and people back then didn’t live very long. According to Dr. Chu, who has researched the history, the word “cancer” was first used in the Ebers Papyrus, a significant Egyptian collection of medical texts from about 1500 BC. Others believe that the term owes its birth to Hippocrates, who used the Greek words carcinos or karkinos to describe “hard lumps” that were undoubtedly tumors. Hippocrates lived from about 460 BC to 377 BC. The Greek physician Herophilus, who lived from about 335 BC to 280 BC, first used the word “prostate” to describe that troublesome thing in front of the bladder.
(What we would’ve done without the ancient Greeks I do not know. But after that fast start, man, have they ever managed to screw things up.)
Cancer of the prostate was first identified in 1817 by a London physician named George Langstaff, but the disease goes back centuries. On October 26, 2011, the online ScienceNOW news site described the study of an Egyptian mummified 2,250 years ago and known as M1, who almost certainly had prostate cancer. M1, who is housed at the National Archaeological Museum in Lisbon, “struggled with a long, painful, progressive illness. A dull pain throbbed in his lower back, then spread to other parts of his body, making most movements a misery.” That he had prostate cancer was determined by high-resolution scans, which showed, according to the magazine, “many small, round, dense tumors in M1’s pelvis and lumbar spine, as well as in his upper arm and leg bones,” the areas in which metastases most commonly occur.
Since I have previously compared the prostate to the breast in terms of public awareness, there also appears to be an evolutionary link between the two, that they “seem to have evolved on parallel tracks,” as Dr. Walsh writes in Surviving Prostate Cancer. Countries with high breast cancer rates (including the United States, Great Britain, Australia) also have high prostate cancer rates, and countries with low breast cancer rates (most Asian nations) tend also to have low prostate cancer rates.
The thoughtful folks who communicated with me after I went public with my decision not to pursue intervention did not know of Egyptian mummies and Greek physicians. What they did know was that they had heard the word “cancer.” Cancer is bad. Cancer kills. One of the cards I received was of a religious character and “hoped that God would find a way to heal me.”
Half the population was telling me I wasn’t sick, and the other was giving me last rites.
I can’t emphasize this enough: I had no symptoms. One of the cards I received read “Hope you feel better,” but there was nothing perceptibly wrong with me. When people who had read the newspaper column saw me at the gym, I could see them surreptitiously examining me for signs of deterioration and showing clear puzzlement when I didn’t look any worse than I normally do.
The people I heard from about my active-surveillance decision were divided into two camps: One camp thought I was crazy but didn’t say so, and the other thought I was crazy and did say so. My sister, Pam Scott, was in the former camp. Her husband, Chip, had been treated surgically for localized prostate cancer (his PSA number and Gleason score were similar to mine, and Dr. Lee had done his surgery) and she let me know, casually but emphatically, that he was doing fine except for some postsurgical “limitations.”
Among those on the “You’re nuts!” side was a local doctor who wrote me a heartfelt letter that read in part: “I have seen too many men die of prostate cancer. PLEASE PLEASE reconsider your decision not to get surgery.”
That’s pretty persuasive stuff when you’re not 100 percent sure to begin with.
I consulted with Dr. Manley, who suggested I talk to a general oncologist. I bounced that idea off Keith, my urologist, and he had a better one:
Go to Johns Hopkins. See Ballentine Carter. He is The Man in active surveillance.
IT IS IMPOSSIBLE TO OVERSTATE the importance of Johns Hopkins University and its hospital to the study and treatment of prostate cancer. The first radical prostatectomy was performed there in 1904 by a surgeon named Hugh Hampton Young, and the procedure he used (removal of the whole gland and the seminal vesicles with the suturing together of the bladder and urethra) remained the model for four decades.
The highly regarded James Buchanan Brady Urological Institute on the hospital’s Baltimore campus is not, however, named for a distinguished Hopkins urologist. Rather, it honors its benefactor, the famous, and famously overfed, “Diamond” Jim Brady, shady businessman, Broadway gadfly, and philanthropist. In 1912 Brady was successfully treated at Hopkins for various prostate problems—their existence perhaps not surprising considering his Herculean appetite—and in gratitude, he endowed the institute. A photo of Diamond Jim has a featured place in the staid Hopkins urology library, whose interior was designed, incidentally, by Margaret Walsh, wife of Dr. Patrick Walsh.
Dr. Walsh is probably the best known of Hopkins’s dream team of urologists. He is credited not only with improving the “open” radical
prostatectomy, which was once a downright barbaric procedure, but also with bringing prostate understanding to the masses with his teaching. Dr. Walsh still sees patients and does research (see Chapter 13 for more), and among his most distinguished colleagues is Dr. Carter, who is considered one of the leading practitioners of what the Hopkins team variously calls “expectant management with curative intent,” “proactive monitoring,” and “active surveillance.”
When Hopkins adopted and refined the Swedish philosophy, they wanted nothing to do with the verb “waiting.” They wanted to develop a proactive approach that involved PSA tests and rectal exams every six months, along with a yearly biopsy. We’re Americans. We don’t sit there and brood. We do stuff.
So I made an appointment with Dr. Carter, which took some doing—he is a busy man. His office requested not only my biopsy report, but also my biopsy slides.
The specifics of active surveillance are on the Hopkins Web site, as outlined by Dr. Carter and another urologist, Jonathan Epstein, MD. Their study has been going on for more than 15 years and has followed more than 900 men who, to quote the site, “are thought to have tumors that can be safely managed without immediate treatment.”
Before the appointment, I would say that I perused the site. My wife digested it, and we formed the same opinion: Active surveillance seemed designed for men like me. As ol’ Larry King might say, “Next to ‘active surveillance’ in the dictionary is a photo of Jack McCallum.”
Dr. Carter met me late in the day. He had my records. He knew that my cancer was low level and had not escaped the prostate. He performed a digital rectal exam—expertly, I might add—and found nothing. Then he floored me with this pronouncement:
“You’re 62. I would certainly not recommend active surveillance.”
I was utterly confused. “Really? Why not?”
“Because of your age,” he said. “And because you’re in too good health. I know you weren’t looking to be a patient down here, but, if you were, you would not be accepted into our program.”
Dr. Carter said that the age of 65 is used, roughly, as a cutoff, but that a man’s health is just as important. The healthier a man is, the more likely it is that he will die of prostate cancer because nothing else that is immediately evident will likely kill him. Therefore, it is advisable to kill the cancer. It makes a curious kind of sense, but you have to roll it around in your mind for a while.
I should’ve been happy, I suppose, since somebody had just told me that I was too young and too healthy for something, which hadn’t happened in quite a while. But I walked out in a kind of daze. It was a long three-hour drive home, and my planned prostate solution was no solution at all.
CHAPTER 9
... In which the author visits an oncologist, changes strategies, communes with a robot, loses a walnut, and gains a catheter
MY WIFE AND I REREAD the Hopkins Web site page about the active-surveillance program, the address for which is in the Sources and Resources section at the back of this book. Here’s what it says: “For older men, especially over age 65 years who meet criteria, active surveillance is one of the options that should be seriously considered.” It also says the following: “Studies suggest that 30–50 percent of men over the age of 60 years diagnosed with prostate cancer today by PSA screening undergo a treatment that will not extend their life or improve its quality. . . . The key is to identify the men who for now can safely forego treatment.”
That is where “life expectancy” comes in, which is, by definition, a free-floating estimate. It says, after all, “expectancy” not “certainty.” The Hopkins people were not saying—could not know—that without surgical or radiological intervention I would die of prostate cancer because I was (at the time) 62 and in otherwise good health. Nor could they be sure that a cause other than “prostate cancer” would be on my death certificate. It was based on research, but it was basically a guess.
“Age is not the best criterion,” says Dr. Walsh. “It’s life span. There are 57-year-old men who aren’t going to live 8 years, and there are 75-year-old men who are going to live 20 years.”
When I was making this decision, I thought of myself as a 62-year-old who was more like a 52-year-old (albeit one with 72-year-old knees). At any rate, hearing that the country’s top active-surveillance study would not accept me was a powerful disincentive to continue that protocol.
During my research, several active-surveillance advocates had also brought up the point that new tests, new medications, and improvements to the PSA test will almost certainly be coming along, as will genetic discoveries that will revolutionize prostate cancer detection. Hold off on intervention, the thinking was, and doctors would be able to more accurately assess whether my level of prostate cancer needed to be treated.
All that is true. But how far down the road are those new developments? Would I still be around? There is no way of knowing.
In retrospect, my decision to turn away from active surveillance began as soon as my appointment with Dr. Carter ended.
So now what? My literary agent, Scott Waxman, had been telling me that I should visit his father, a veteran oncologist at Mount Sinai Hospital in Manhattan. “Just see what he has to say,” said Scott.
Samuel Waxman, MD, told me at the outset that he wasn’t going to advise me on whether or not to get intervention. “That’s not my job,” he said. “I’m not a urologist. I’m not your doctor.” He was familiar, of course, with both the ongoing controversy and the relatively slow advancement of prostate cancer. And over the course of a career spanning six decades, he had seen many patients die of prostate cancer. He understood the whole picture.
He examined me physically, giving me a pass on the DRE—“I suppose you’ve had enough of those,” he said—and questioned my wife and me about our feelings on living with cancer, surgery, and possible post-intervention issues of incontinence and sexual dysfunction. He discussed his opinions about surgery and radiation. He touched all the bases. He was utterly complete and utterly professional without telling me what to do.
But one thing he said stuck with me more than anything else:
“The healthier you are going into surgery, the better you get through it. And you’ll never be healthier or younger than you are right now.”
True. I had never felt better. All right, that’s a bunch of crap. I felt better when I was 30, when I could run six miles and play two hours of full-court basketball and report to work the next morning after tequila shots at midnight. But all in all, I felt good. So if surgery might be a necessity anyway—perhaps when I was 70 or 75—why not get it out of the way now?
I had also been thinking a lot about the active-surveillance regimen. I understood it, but had the feeling that I was unprepared to endure future biopsies, DREs, and constant PSA tests, all the while wondering if they were going to show something.
In the Sources and Resources section at the back of this book is the address for the Web site of an active-surveillance advocate, Michael Lasalandra. He is a medical journalist, so the info provided in his account of his cancer experience is clear, concise, and well written. It includes a full list of his PSA test results (from October 2006 through June 2012), which, after he started taking dutasteride (Avodart), went down from a high of 11.1 to a low of 3.3. But that isn’t me. I didn’t want to endlessly compile a list of my PSA readings. I didn’t want to keep taking tests, wondering and worrying if the score was going to go up. If you’re giving blood and visiting doctors and keeping logs, you are, in fact, obsessing, and, moreover, continuing to define yourself as Someone with Cancer.
I had finally told my sons (both of whom are in their 30s) that I had cancer, and they had given me their best “Are you kidding me?” reactions to the idea of active surveillance. The whole idea of waiting and watching never did catch hold with them, and it was beginning to lose favor with my wife, too. I had stopped talking about prostate cancer precisely because I didn’t want to define myself by it. But one day I turned to my wife an
d said, “I thought I could forget I had cancer inside of me, but I can’t. I think about it every time I urinate and every time we have sex.”
She nodded. She had been thinking about it, too, and wondering why I had stopped talking about it. So as we strolled down Park Avenue after the appointment with Dr. Waxman, I turned to my wife and said, “I’m going to call Keith and tell him I’m having surgery.”
She had been expecting it. “I’m glad,” she said.
I told my family and friends of my decision to take action and they all seemed relieved, especially my sister.
“When you told me you weren’t going to do anything,” she said, “I thought you had lost your mind. But I’ve thought that before.”
THE MORNING CALL
February 11, 2012
Being Convinced to Have Surgery for Prostate Cancer
Some of you are at this moment muttering, “Wait a minute, we already heard about this guy’s prostate. I’m trying to eat breakfast here.”
I understand completely and won’t feel slighted if you find something else to do. Tax season is upon us, after all, and it’s not too early to start complaining about the Phillies’ hitting.
But since I presented one side of the prostate case in a previous Morning Call column (Oct. 17, 2011), and since, for a while at least, I was the clearinghouse for Lehigh Valley prostate-cancer information, I feel obligated to reveal a change in my treatment decision.
Three months ago I was all but certain that I would embark upon a course called “active surveillance” or “watchful waiting.” In prostate-cancer cases such as mine—low-level, relatively unaggressive, disease contained in the prostate—there is an argument for managing the disease without surgical or radiological intervention. You do this with more frequent PSA tests, digital-rectal exams and biopsies, counting on the fact that prostate cancer is slow growing.
The Prostate Monologues Page 7