If you feel good going into a prostate procedure, you have a better chance of feeling good coming out of it. I firmly believe that’s part of the reason I recovered so quickly (along with the skill of the surgeon, of course). It’s simple logic: The quicker you get up after surgery, the quicker you will recover—that’s just a fact—and you will not be able to do that if you’re out of shape. I think back to my 137 circuits around the downstairs perimeter when I had my catheter in—it helped me not only physically, but also mentally. In bed, I felt imprisoned; up and out, I felt alive. And it goes beyond “feeling.” Cancer Epidemiology, Biomarkers & Prevention, an online publication, recently published a study showing that being overweight or obese increased the chances of getting prostate cancer by 57 percent.
But beating cancer, as I (presumably) have, should not be mistaken as a test of character. In a perceptive January 21, 2013, post about disgraced cyclist Lance Armstrong on Salon.com, Samuel G. Freedman, a Columbia University journalism professor and member of the Prostate Cancer Club, wrote the following: “His [Armstrong’s] success fit into a certain pervasive narrative of cancer—that cancer is something you ‘defeat,’ something you ‘beat,’ less a disease than a test of character. We didn’t want to ask exactly how Lance Armstrong, recovering from testicular cancer, could possibly become the top cyclist in the entire world, because the image of his resurrection was, in a nearly religious way, irresistible.”
Doctors have agendas, just like everyone else in the world does.
Let me reiterate that I couldn’t be more pleased with the medical care I received all the way through this process. But since doctors and surgeons routinely perform such seemingly incredible feats, there is the temptation to look at them as a kind of stethoscope-wielding Justice League of America, superintelligent, superpowered, superknowledgeable. But the vast majority of them are tethered to medical institutions, free-floating entities with decision-making power, to be sure, but not completely divorced from either self-interest or the interests of those who employ them.
“There are all sorts of incentives in the health care system, and I think it’s important for patients to understand that,” says Dr. John Christodouleas. “At Penn, for example, we are motivated to suggest active surveillance only because it might be good practice.”
Translation: As far as the bean counters are concerned, active surveillance, which is not a money-making proposition, is about as attractive as bloodletting with leeches. Active surveillance doesn’t pay for da Vinci robots and proton beam machinery.
“In no way, shape, or form is the field of urology incentivized for patients to get radiation,” Dr. C. said. “Urologists will benefit more by [patients] getting surgery, in the same way I benefit more when a patient gets radiation. We are partners [he means urologists and radiation oncologists], and to an extent, that keeps us honest. If somebody is flagrantly violating standards, it would be noticed and would affect their professional standing.
“But, look, there are perverse medical incentives everywhere, in every country. You cannot set up a system in which everybody is perfectly aligned with the incentives of the patient. As long as the patient knows where it’s perverse, and as long as the physicians try to control themselves, be transparent, and give good reasons for the choices they are making, you will be okay.”
To reiterate, I feel that that’s what happened with me all along the road. But do not surrender your right to choose. Listen to the experts and weigh not only what they are saying but also why they are saying it, and you should be able to make a reasoned decision.
And so . . .
Get more than one opinion and solicit the advice of survivors.
The wisdom of that is axiomatic for any medical procedure, but even more important with regard to prostate cancer because of the volume of disagreement in the field. True, the farrago of options thrown at you—one doc advocates surgery, another pushes radiation, a third counsels active surveillance—will leave you feeling like you’re staring at Bloomberg TV, with all of its competing little boxes. But you have to do it. You have to hear the whole story and you will only get it from different doctors. My interview subjects who had bad outcomes all regret having listened to only one voice.
Also, ask your doctor to give you the names of some of his patients to contact. He has to first check with them, obviously, but he should have nothing to hide. And I’ve found that, contrary to popular belief, men will talk about prostate cancer and surrender their deepest secrets of the bedroom and bathroom.
You can go to the Internet, of course, and hear scores of endorsements for this modality or that modality. But beware of them because, first of all, there is a lot of misinformation out there, and second, the true believers might be getting paid for their praise.
Keep on reading, but don’t believe everything you read, and understand that we are all creatures of our time.
The prostate cancer field is changing constantly. The American Urological Association, which was initially vehemently opposed to the USPSTF recommendation against PSA screening, has now recommended that men under 55 years and at “average risk” to get prostate cancer (i.e., no hereditary connection, not African-American) not be screened. According to a New York Times story, more than a dozen companies have either introduced, or are planning to introduce, tests that are more sophisticated and might supplement the PSA test. “Some of the tests are aimed at reducing the false alarms, and accompanying anxiety, caused by elevated PSA readings,” the Times reported. “Others, intended for use after a definitive diagnosis, examine the genetic workings of the cancer to distinguish dangerous tumors that need treatment from slow-growing ones that might be left alone.”
Researchers are working on better biopsies, clearer imaging, ways to make connections to heredity, predictions based on DNA, and a hundred other things. I read about a Harvard study that found that drinking six or more cups of coffee per day reduces the risk of getting any kind of prostate cancer by 20 percent and the risk of developing aggressive forms by 60 percent. (Never mind what it might do for constipation.) There is a highly competitive and emulous scramble to find the Next Big Thing in prostate cancer, and that is invariably accompanied by a tendency to overcelebrate breakthroughs and vastly exaggerate triumphs.
For example, on the Web site for a chain of proton beam treatment centers called ProCure, a headline reads “Proton Therapy May Reduce Risk of Erectile Dysfunction” and a subhead further proclaims: “Prostate Cancer: 94% of men remained sexually active after treatment with proton therapy.”
First of all, yes, it may reduce erectile dysfunction. And I may be asked to stand in for Brad Pitt tomorrow. (All right, bad example.) Also, “sexually active” doesn’t necessarily mean you have an erection; as thousands of men without prostates know, you can have an orgasm without an erection. And “sexually active” could mean you’re indulging in self-inflicted orgasm. In the fine print the report also says that these were men ages 55 and under, which, across the prostate cancer population, is not only a relatively young age to have intervention, but also a young age to undergo radiation.
If something meaningful happens in prostate cancer, something that could truly affect your choice of whether to wait or have intervention, rest assured that those Web sites devoted to prostate cancer will have that news. So will, among others, the Web sites of the New England Journal of Medicine, Johns Hopkins University, the Cleveland Clinic, the University of Pennsylvania, and several others listed in Sources and Resources in the back of this book. Make sure you choose reputable sites for information gathering.
At some point, you may have to pull the trigger on a decision, and you can’t beat yourself up over what might come along later. In 40 years of covering athletes, the unhappiest ones I encountered were those who constantly inveighed against being born too early and raged that the younger generations made more money than they did. I always wanted to tell those guys, Look, had you been born earlier, you would’ve been chasing around mastodons for your w
inter wardrobe, so put a sock in it.
When you get your Gleason score, realize that your cancer might be slightly worse.
The prostate biopsy is, to some extent, a shot in the dark—6 to 12 shots in the dark, really. It does not provide a complete picture. “Needles sample 1/1,000th of the prostate,” says Dr. Walsh. “There’s a vast amount that hasn’t been sampled, and oftentimes that cancer is right down where the urethra is, at what’s called the apex, the hardest place to get a needle on.”
Dr. Walsh estimates that 25 percent of men have more cancer than is shown by the biopsy. That happened to me—my 3 + 3 Gleason was scored at 3 + 4 after the prostate was taken out. Several men I talked to reported the same thing.
No, that doesn’t mean I was close to dying. Rare is the cancer scored a 6 that turns out to be a 9 or 10. But it still means that the cancer was a little more serious, and Dr. Walsh believes that the next big step for prostate cancer must come in the field of imaging.
“If we can get to the point where we say, ‘Okay, you have Gleason 6 in only a tiny place in your prostate,’ ” says Dr. Walsh, “yes, we can have a way to diagnose that and monitor it. But we don’t have that type of imaging right now.”
Whatever your opinions are about intervention, go to the tables.
Let’s say you’re 65 years old, your PSA is below 4, your Gleason score is 3 + 3, and your biopsy shows localized cancer that has not escaped the prostate. You want to do active surveillance but need that last little bit of convincing. Go to the prediction tables. One of the interviewees in the previous chapter (Bob Snyder) spoke about the one on the Sloan-Kettering Web site, and there’s one from Johns Hopkins, too; both are listed in Sources and Resources.
It is easy to use. I put in my PSA (3.8), my Gleason (6), and my clinical stage (T1c), hit FIND RESULTS, and instantly was told the following: My chance of having organ-confined disease was 87 percent. My chance of having cancer that had spread outside my prostate was 12 percent. And my chance of having either seminal vesicle or lymph node involvement was zero.
All in all, that’s a bet anyone would make in Vegas—but one I chose not to make with my body. Given the same set of circumstances, you might choose differently.
If you choose intervention, experience counts.
I had excellent success with robotic surgery. But if for some reason I had been given the choice of robotic with an inexperienced surgeon or any other treatment modality (radiation, radioactive seeds, cryotherapy) with a veteran, I would have taken the latter in a heartbeat. The more repetitions of a procedure a surgeon or radiologist does, the more times he or she encounters something that might be a problem, and the more efficient he or she is at dealing with it.
Communicate with your partner and figure out a way to make sex a positive.
This is for those of you who have had intervention and are now experiencing erectile dysfunction. You know who you are. Your partner knows who you are. Your urologist knows who you are because he or she has asked you about it. It’s a medical reality, not a congenital weakness or a failure of the will.
You have to talk about it at home. If you stop talking about ED, then it starts to grow and grow (unlike your penis) and becomes this crushing invisible weight that nobody wants to deal with, and the next thing you know, sex has become a hazy memory, like the antics of a particularly adorable pet you used to have.
There are all kinds of statistics out there, but after all my research and interviews I believe what Dr. Pablo Torre says about it. “If people say they get 90 percent of their erection function back, they are probably lying,” he says. “Even in the best of hands, ED response is probably about 60 percent to 65 percent. It’s much more an issue than continence, which is probably close to 90 percent.”
As of this writing, 13 months after surgery, I can get a full erection. Maintaining it is sometimes the problem, a condition known as “venous leak.” (Cruelly, “venous” is pronounced like “Venus,” the goddess of love, and rhymes with “penis.”) In a venous leak, the veins in the penis, diminished by age and weakened by surgery, cannot prevent blood from exiting, stage left, during an erection. Anxiety can also bring it on. You start thinking about a possible failure and next thing you know, it’s a self-fulfilling prophecy, what the medical profession calls an example of “psychogenic erectile dysfunction.” In the immortal words of Yogi Berra, “Ninety percent of this game is half mental.”
But I am working on it and I am optimistic. And there are small benefits. Sometimes the orgasm doesn’t feel complete, so I feel like engaging in Act II—something that hadn’t happened for many years. And apparently there are other avenues to explore. To combat venous leak, Dr. Walsh (who turns out to be the urological equivalent of Masters and Johnson, by the way) suggests attempting sexual activity standing up. “The escaping blood has to travel all the way back up to the heart, and this takes longer if a man is standing up than if he’s lying down,” writes Dr. Walsh. Stand-up sex presents interesting possibilities, but also the possibility of a spectacular orthopedic catastrophe.
My wife and I have turned our encounters (none of which, to this point, have occurred vertically) into mini-ceremonies. There is a time for them and a certain ritual they follow, and even if they sometimes do not produce volatility, they produce much intimacy, and I do not want to make them a thing of the past. As Jackson Browne wrote in “Running on Empty,” “Gotta do what you can just to keep your love alive.”
There are surgical remedies for ED, as well as the pumps described in previous chapters. I have nothing against pumps in principle, and I can’t be sure that I wouldn’t have used one if I were 10 years younger. But I can safely say that a pump is not in my future plans, even if my potency never returns to presurgical levels. It just doesn’t fit my mental picture of sex, conjuring up as it does images of clogged sinks and water-filled basements. And a needle through my penis to increase blood flow? That just isn’t going to happen, either.
If you are so inclined, join a support group and talk about it.
I have attended the meetings of two prostate groups and, to be honest, I went only for research. Journalists tend to be nosy rather than soul-searchingly communicative, and I have not returned.
But if I were suffering from serious postsurgical complications or depression, I would go back in a minute. At both meetings there was a free exchange of ideas, and the participants seemed to get a lot out of them. At one of the meetings I learned that several of the men had been attending for more than a decade. They had become prostate pals, and in their anecdotal exchanges one feeling came to the fore:
I am not alone.
That is very important.
Anyway, I don’t have much left to talk about. I’ve been talking for the last 190 pages. That’s a lot of catharsis for one man.
I would make the same treatment decision again. I’m almost sure I would. My decision-making process was absolutely impeccable. Unless it wasn’t. But I’m sure . . .
I have tried to make sense of the studies and statistics used by both sides in the PSA debate, and I have dutifully called and e-mailed both sides many times for clarifications. My in-box is bulging with the replies of Dr. Walsh, Dr. T. Ming Chu, Dr. David Lee, Dr. Keith Van Arsdalen, Dr. William Catalona, and the USPSTF’s Dr. Michael LeFevre. But as I wrote in the Prologue, it boils down to a statistical version of Rashomon. The experts look at the same data and extrapolate from them entirely different conclusions, and that’s disheartening. I sincerely doubt that the average man would be able to read through the studies and say with certainty: “Okay, I get it.”
But here’s what I do get:
Overscreening exists. Overdiagnosis exists. Overtreatment exists. As I was finishing this book, the authors of a study published in the New England Journal of Medicine reported that routine mammograms have resulted in tumors being detected that would never have led to clinical symptoms in 1.3 million women over the last 30 years.
But I can only tell you that despite the relat
ively low chance that I would’ve died from prostate cancer, I would again choose to do what I chose to do in 2011, the Year of Indecision. I would take my “little Gleason 6” and present myself in Operating Room 9 at Penn Presbyterian, where, with David Lee at the robot’s controls, I would surrender my 39-gram prostate to the Mayo stand.
Which also means: I am glad I got my PSA taken and glad I had a biopsy that revealed my “little Gleason 6.”
In the absence of statistical certainty, one must depend upon feelings, seasoned as they might be with a teaspoon of ambivalence. Is my conclusion influenced by my having had a skilled surgeon, a good outcome, and an understanding wife? Of course. If urine were running down my leg and I was facing a life bereft of sexual activity, would my feelings be different? Absolutely.
But after all my interviews and research, three salient facts stay with me:
1. THE PEOPLE I MET WHO ARE INVOLVED IN PROSTATE CANCER TREATMENT ARE SINCERE AND DEDICATED. Some of them have devoted their professional lives to researching and treating this baffling disease. They might have, as the saying goes, “skin in the game,” but I do not believe that, as a group, cashing in on PSA tests and needless interventions is what moves those intimately involved with other men’s prostates. You don’t spend your life studying this half-buried gland, one that Dr. Walsh declares does “much more harm than good,” just to hear the ring of a cash register.
That doesn’t mean I dismiss the USPSTF entirely. But numbers are open to interpretation and interpretations are open to interpretation, and at the end of the day your thoughts about PSA will probably come down to a matter of degree. If you edge over to the traditional corner, where Dr. Catalona stands in a white lab coat, you believe that it just might save your life. If you edge over to the USPSTF corner, where Dr. LeFevre stands holding a calculator, you will focus on its inaccuracy and possible deleterious effects. But keep in mind that even a doctor like Aaron Katz, who chastises Dr. Catalona for relying too heavily on the PSA test, routinely uses it himself in diagnosing patients. The idea of throwing it out entirely, which is what the panel recommends, strikes me as moronic.
The Prostate Monologues Page 18