Also by Jack McCallum
Bednarik: Last of the Sixty-Minute Men (with Chuck Bednarik)
Dream Team: How Michael, Magic, Larry, Charles, and the Greatest Team of All Time Conquered the World and Changed the Game of Basketball Forever
Foul Lines: A Pro Basketball Novel (with L. Jon Wertheim)
Full Circle: An Olympic Champion Shares His Breakthrough Story (with Dan Jansen)
Making It in America: The Life and Times of Rocky Aoki, Benihana’s Pioneer
Seven Seconds or Less: My Season on the Bench with the Runnin’ and Gunnin’ Phoenix Suns
Shaq Attaq! (with Shaquille O’Neal)
Sports Illustrated Book of the Apocalypse: Two Decades of Sports Absurdity
Unfinished Business: On and Off the Court with the 1990–91 Boston Celtics
To GEORGE B. YASSO
Who died too soon of prostate cancer but who got a lot done while he was here
“If treatment for cure is necessary, is it possible? If possible, is it necessary?”
—WILLET WHITMORE, MD,
famed urologist and prostate cancer victim, on the problematic nature of treating prostate cancer
Contents
Prologue
Chapter 1
. . . In which the author hears about an orgasm, lays out the prostate stats, witnesses a prostatectomy, and against all odds does not lose his lunch
Chapter 2
. . . In which we learn why your prostate is kind of like Liechtenstein
Chapter 3
. . . In which the author for the first time pays real attention to his PSA number
Chapter 4
. . . In which the author, blissfully unconscious, gets his biopsy and feels confident, but soon gets a sobering phone call
Chapter 5
. . . In which the author talks to a real person from the controversial USPSTF and wades into the murky waters of prostate cancer politics
Chapter 6
. . . In which the author finds out what the inventor of the PSA test has to say
Chapter 7
. . . In which the author consults with his urologist, visits a radiologist (just in case), decides against treatment, and opens himself up to second-guessing
Chapter 8
. . . In which the author gets a surprise at the Temple of Active Surveillance
Chapter 9
. . . In which the author visits an oncologist, changes strategies, communes with a robot, loses a walnut, and gains a catheter
Chapter 10
. . . In which the author celebrates catheter removal, gets his postsurgical pathology report, and skulks around in search of pads
Chapter 11
. . . In which the author rejects Levitra, finds Cialis, puts his oars into different sexual waters, and finds satisfaction, if not fireworks
Chapter 12
. . . In which the author learns a few things he should’ve paid more attention to before surgery
Chapter 13
. . . In which the author presents the many and varied opinions of the doctors he interviewed
Chapter 14
. . . In which the author talks to a golfing immortal and a Viagra pioneer and ruminates on other celebrities who have died from prostate cancer, as well as others who are living with it
Chapter 15
. . . In which the author presents personal prostate stories, ones with both positive and negative outcomes, that may provide guidance
Chapter 16
. . . In which the author ponders the lessons of prostate cancer, offers tentative advice, and breaks bread with his prostatectomy pal
Sources and Resources
Acknowledgments
Index
About the Author
PROLOGUE
While we waited for dessert, the Swede let pass that he was indulging himself in a fattening zabaglione on top of the ziti only because, after having had his prostate removed a couple of months back, he was still some ten pounds underweight.
“The operation went okay?”
“Just fine,” he replied.
“A couple friends of mine,” I said, “didn’t emerge from that surgery as they’d hoped to. That operation can be a real catastrophe for a man, even if they get the cancer out.”
“Yes, that happens, I know.”
“One wound up impotent,” I said. “The other’s impotent and incontinent. Fellows my age. It’s been rough for them. Desolating. It can leave you in diapers.”
—PHILIP ROTH, American Pastoral
GIVEN THE RESERVOIR OF DISPIRITING SUBJECTS explored by Philip Roth over his long career, it is not surprising that his fictional alter ego, Nathan Zuckerman, came upon prostate cancer in this 1997 novel that won the Pulitzer Prize for Fiction. You want to get any man depressed, just bring up the sometimes intertwined complications of uncontrollable urinary function and insufficient erections and watch him grab his favorite NFL sponge toy and retreat to his man cave.
Let me make it clear that I have had the same operation as Roth’s protagonist, Seymour “Swede” Levov, and, like the Swede, “I got off easy.”
Kind of easy, anyway. I’m still trying to figure that out, as you’ll see in the succeeding chapters. With this disease, see, you rarely get off easy. Even if you’re not peeing like a one-year-old or having trouble “in the bedroom” as the commercials describe it, your eardrums are being assaulted by a Greek chorus of second-guessers.
“You shouldn’t have got it done! You shouldn’t have got it done!” Prostate cancer intervention has become in some quarters a kind of cosmetic surgery, the glandular counterpart to the nose job. To an increasing number of people both within and without the medical profession, prostate is the friendly cancer, so unlike pancreatic, brain, breast, and lung, and much more benevolent than its brothers, testicular and bladder. You can live a long time with prostate cancer. Just about every man in the universe will get it and he probably won’t die of it. “Why the hell did you make yourself impotent when you didn’t have to?”
Ah, but choose to live with prostate cancer instead of having it excised or irradiated and you hear a different chorus: “It’s still cancer. Any cancer can kill you. Advanced prostate cancer is as bad as any other kind of cancer. Why the hell are you risking death by doing nothing!”
The two sides are locked in a debate that conjures up Rashomon, the celebrated Akira Kurosawa movie in which different characters relate incompatible versions of the same story. Mounds of data speak to the key questions of the prostate debate: How effective is PSA testing? At what age should men start to get tested? Does PSA testing prevent deaths? What is the best way to treat prostate cancer?—but myriad ways of interpreting them. It is a medical Rorschach: One expert sees this, another sees that, a third sees something else. And when experts can’t agree, it leaves the nonexpert in a quandary, as we are when we try to sift through conflicting investment advice.
At the very least, though, those of us in the Prostate Cancer Club can take pride that we clearly have the “It” malignancy, the male version of breast cancer, if you will. That is not a comment on the comparative severity of the diseases; it is merely to note that prostate—while lacking a Susan G. Komen–like standard-bearer, the full-blown, pink-gloved, fund-raising partnership of the National Football League and a thousand weekend benefit runs—is the cancer that these days is commanding much of the attention and almost all of the controversy.
President Barack Obama declared September 2012 the first Prostate Cancer Awareness Month in the United States. Two months later, there’s another way to recognize prostate cancer—“Movember.” It’s a movement that began a decade ago in Australia in which men grow mustaches (a “mo” is Aussie shorthan
d for one) for men’s health awareness, and it has now raised millions of dollars and has the official sanction of the Prostate Cancer Foundation. That organization was founded by the disease’s deep-pocketed champion, Michael Milken, the junk bond villain turned medical philanthropist who is himself a prostate cancer survivor.
The Lehigh Valley Iron Pigs, a minor league baseball team in my area, has been active in prostate cancer awareness, combining ads from Urology Specialists of the Lehigh Valley with a foam finger giveaway, a not-so-subtle reminder that a doctor’s finger goes along with the digital rectal exam. The Iron Pigs have also added a “Urinal Gaming System” in all of their bathrooms at Coca-Cola Park. Men aim their stream to compete in various games, the scores of which can then be entered and—get this—posted on the scoreboard for all to see. The system was added in conjunction with the Lehigh Valley Health Network with the express purpose of raising prostate awareness. Whether that will happen is a matter of conjecture, but there is little doubt that it has garnered the Pigs a huge amount of national publicity and a torrent of puns. Streaming media. Bladder up. Whiz Kids. You get the point.
Even at a Jethro Tull concert these days you’re liable to get a prostate reminder (blessedly brief) orchestrated by flautist Ian Anderson, who has fronted the group since I was listening to them nearly five decades ago in college. A plant in the audience gets up in midsong, presumably to urinate, and Anderson calls attention to him. This leads to a skit, visible by shadowy pantomime behind a curtain, in which a man gets a digital rectal exam as Anderson talks about the importance of getting tested and images of rock performers Frank Zappa and Johnny Ramone flash on a video screen. Both died of the disease.
Still, there are other worlds for the prostate people to explore. They have not, for example, been as creative as advocates for another type of cancer who in March of 2013 managed to put up a 20-foot-long walk-through colon in New York City’s Times Square for National Colorectal Cancer Awareness Month. “Kids, after we see the Statue of Liberty and the Empire State Building, your father wants to visit the Giant Colon.”
IN A WAY, I’ll be trying to do in this book what Ian Anderson tries to do in his concerts—tell you a few things without being preachy (and without a digital rectal reenactment). I will tell you about prostate cancer in general, not because I went to med school, which I did not, but because of firsthand experience, research, and interviews with urologists, cancer experts, and other members of the Prostate Cancer Club. I will tell you a number of doctors’ opinions on treating prostate cancer, and, as you’ll discover, they do not speak with a united voice.
I will tell you about my cancer. I will tell you about my operation and an operation just like mine that I witnessed. I will tell you about my postsurgical complications.
I will tell you a lot about other people’s cancers and their complications. I will tell you about the people who say I did the right thing and the people who say I did the wrong thing, and why each says what they say. I will tell you about the Gleason score and percentage of core involvement, as well as some facts about PSA (prostate-specific antigen), ED (erectile dysfunction), BPH (benign prostatic hyperplasia, a fancy term for an enlarged prostate), DRE (digital rectal exam), and whatever other combinations of the prostate alphabet come into play.
Here’s what I will not do: If you’ve already had surgery or radiation, I will not tell you that you did the wrong thing. (Though others I interviewed might do that.) If you’ve decided to do nothing and instead monitor your prostate cancer, I will not tell you that you’re doing the wrong thing. If you’re about to have intervention, surgery, radiation, or anything else, I will not tell you that you’re making a big mistake.
This is a book about information and options, probabilities and statistics, ideas and outcomes—not lectures and regrets. You don’t have to look far, after all, to get plenty of those.
CHAPTER 1
... In which the author hears about an orgasm, lays out the prostate stats, witnesses a prostatectomy, and against all odds does not lose his lunch
THE CALL CAME IN AT ABOUT 10:00 P.M. It was Asha Jagtiani, a woman I had met only once, delivering the following information:
“Jack,” she said, “Leonard wanted me to tell you that he just had an orgasm. He is very, very happy.”
“That’s fantastic,” I said. “Tell me about it.”
“We were fooling around,” said Asha, “and it just happened. We didn’t really expect much but then, all of a sudden, he said he orgasmed.”
“It was dry, right?” I asked.
“Oh, yes,” said Asha. “Nothing came out. But he said it felt just like an orgasm and we wanted you to know. This has made him feel even better about the operation, the fact that he can still have sexual relations.”
“I understand completely,” I said. “Tell Leonard congratulations.”
I am not a close pal of Leonard Collier’s, I am not a sex counselor, and I am not Dr. Phil. When I received this climactic news, I had never met Leonard Collier personally, though I had seen him knocked out cold and stripped down naked in a refrigerated operating room. Our connection is this: I had watched Leonard go through the same surgical procedure (robotic prostatectomy) performed by the same surgeon (David Lee, MD) at the same hospital (Penn Presbyterian Medical Center in Philadelphia) that I had gone through. Those who have endured prostatectomy surgery often compare notes.
This was a happy one.
THREE WEEKS BEFORE ASHA’S ORGASM NEWS, I am sitting in the office of said Dr. Lee, the chief of urology at Penn Presbyterian Medical Center, early on a Wednesday morning. In about an hour he will be sitting behind the console of a $1.9 million robotic device, a multitentacled thing that resembles a droid from Star Wars, directing its “fingers” as it cuts into the abdomen of Collier, a 64-year-old retired educator from West Chester, Pennsylvania.
But at this moment, Dr. Lee is thinking about golf.
“Putting,” he says, “is much harder than what I’m about to do. Putting is mysterious.”
Putting is mysterious, I agree. But so is surgery. And so is the concept of digging into someone’s abdominal cavity and pulling out a gland through a small hole just above the navel—especially because it’s done without the surgeon actually touching the man or even standing over him.
I’m a little nervous. I’m not a huge fan of blood and gore, my own or anyone else’s. I never wanted to be a doctor, never even played doctor. The robotic prostatectomy procedure is available for viewing on the Penn Web site and, like everything else in the world, on YouTube, but I had chosen not to watch one before my own surgery. Still, research is research, so here I am, scrubbing up and trying to figure out how to carry notebook, pen, and tape recorder into an operating room without dropping them into Leonard Collier’s abdominal cavity.
I should emphasize that Leonard, just now going blithely and utterly to sleep in the prep room, does not object to my being there; a week earlier he had given me permission to watch his innards being opened up. To the extent that one can be gung ho about surgery, that state of mind would describe Leonard, who, as an African American, is aware of the greater risk he faces of dying of prostate cancer. Nor would Leonard object to the pre-procedure, off-topic talk about golf: He had selected Dr. Lee not only because of the surgeon’s experience (3,300 robotic prostatectomies), but also because Lee is a fellow golfing traveler.
It is difficult to get precise numbers, but Leonard Collier’s prostate and mine were two of somewhere between 55,000 and 75,000 that were removed in 2012 across these United States. About 25 percent of men with cancerous prostates chose to intervene with various forms of radiation. A much smaller number chose to monitor their cancer without surgical or radiological intervention in what is known as “active surveillance.” A 2010 article in the Journal of Clinical Oncology reported that 7 percent of the men in a particular study chose that route, so that would put the 2012 active-surveillance number at roughly between 3,850 and 5,250.
The reason th
at there is so much prostate cancer activity is that there is so much prostate cancer. The National Cancer Institute (NCI) predicted that about 241,740 new cases of prostate cancer would be diagnosed in 2012 (final numbers were not yet available at the time of this writing), making it the second most common cancer in men behind skin cancer. The NCI estimated that prostate cancer would kill 28,170 men in the same year, making it the second-leading cause of death in men behind lung cancer, which would likely kill 87,750 men (and 72,590 women). Overall, prostate cancer is responsible for 3 percent of all male deaths.
But parse those numbers carefully. First, don’t conflate 28,170 with 241,740; most of the deaths are from cancers that were diagnosed much earlier than 2011. Prostate cancer is among the slowest growing of all cancers, with an estimated 80 percent of the cases nonaggressive and slow growing (meaning a nettlesome 20 percent—a not insignificant number—are aggressive).
Second, relatively few of the men diagnosed die of the disease. By comparison, the NCI estimated that in 2012 there would be 43,920 new cases of pancreatic cancer and 37,390 deaths. Not all of the newly diagnosed died within one year, but the best estimate from the American Cancer Society is that the five-year survival rate for pancreatic is only 4 percent. By contrast, the 15-year survival rate for prostate cancer is above 90 percent. Perhaps “I have prostate cancer” sometimes sounds so horrific because it’s heard as “I have pancreatic cancer.” Misidentification through alliteration.
Look at it this way: About 1 in 6 men will be diagnosed with prostate cancer at some time in his life, but only 1 in 36 will die of the disease. Of course, if your loved one is that “1,” you don’t think of it as an “only” number.
Prostate cancer is considered an old man’s disease, and there is much truth to that. The probability of being diagnosed with prostate cancer is 1 in 8,499 for men younger than 40; 1 in 38 for men ages 40 through 59; 1 in 15 for men ages 60 through 69; and 1 in 8 for men ages 70 and older. About 70 percent of men who die from prostate cancer are older than 75.
The Prostate Monologues Page 1
