For over twenty-five years, I have lived with prostate cancer. During that time, the most important thing I learned is that I was blessed with the form of the disease that was “Low Risk” rather than “Aggressive,” a cancer that is slow growing and almost never fatal. Which is why I fully expect to depart this earth a jolly old man, in my sleep, after a lovely day in the country with my honey and a few cherished friends.
My long and often humbling affiliation with prostate cancer began in Malibu, California, on a summer afternoon in 1990, when my family doctor, Jeff Harris, pulled on his latex glove, gave me his slow, surfer’s smile, and suggested that I “drop ’em and assume the position.” It was part of my regular checkup, the annual uncomfortable but necessary experience of the DRE or Digital Rectal Exam, the old doctor-inserts-finger-up-your-butt ritual most men over the age of forty-five are familiar with.
I was fifty-eight. I’d probably had half a dozen normal DREs. Then on that sunny afternoon, while giving my prostate a conscientious probing, Jeff found a lump. And because my PSA was slightly elevated for my age, he wanted me to have a biopsy. Since without a biopsy you would not know for sure if there was cancer, I grudgingly agreed.
Jeff referred me to a Los Angeles urologist—who I will call Dr. Danforth— to do a needle biopsy of the lump. Lying there on the surgeon’s table, I was sweating. My attitude was already surly and mistrustful. I was having a primitive reaction to letting some stranger cut out fragments, cores of my ﬂesh. Here’s this guy I’ve known for only twenty minutes going at it with his transistorized jackhammer: Core! . . . Core! . . . And he’s hurting me, and I’m lying there rigid, thinking: What if we’re really pissing off those cancer cells? Core! . . . Core! What if the shock triggers the diseased little mothers into making a run for it—to get as far away from this demolition site as they can? Core! . . . Core! . . . What are the chances that if there is cancer, he’s actually spreading it!
Three days later, Jeff called with the results of some blood tests. Then he announced almost casually, “By the way, Dr. Danforth wants to redo the biopsy.”
“You’ve got to be kidding!”
“Afraid I’m serious.”
“Whoa! Redo it! Why?”
Short pause. “Seems he got crush artifact.”
“What is that supposed to mean?”
“The specimens he removed were crushed.”
“Crushed? You mean he blew it?”
“Something like that.”
After I hung up, I just sat there. Redo the biopsy! Redo the bloody biopsy! Fat chance! I took a long, cold shower. Then I rang Dr. Danforth’s office. They asked when I wanted to reschedule. I felt like suggesting that they assemble the cores already in their possession, wrap them in their bill, have the doctor assume the position, then insert the whole thing.
Instead, I said I’d be in touch.
As with most things, there was a good side to all this. Regardless of the lump and my slightly elevated PSA, and despite the urologist’s report evaluating the lump as “suspicious for well-differentiated adenocarcinoma” and his recommending surgery—even without another biopsy—thanks to that crush artifact there was no “proof positive.” No way to be absolutely certain that I had prostate cancer. My gut feeling was: Time is on my side! So I decided there was no point worrying.
It was nine years before I submitted to another biopsy.
Mark Scholz, MD
“I’m scheduled for surgery next week, but my doctor says the operation can make me impotent—and the cancer may come back anyway. I really don’t like the odds.”
Every year, nearly a half-million men in the United States and Europe are diagnosed with prostate cancer. Most are under the terrifying impression that they are about to die. In reality, only about one out of seven with the disease are at risk. The most common varieties of prostate cancer are not life threatening at all.
One of the most important discoveries in the last 15 years is that aggressive types of prostate cancer can be clearly distinguished from the Low-Risk types that don’t spread. These Low-Risk forms and some types of Intermediate-Risk prostate cancer are best managed with observation alone. With this new awareness, the old-fashioned, treat-everyone approach is obsolete.
The tragedy is most men don’t know this.
In other words, out of the 75,000 radical prostatectomies performed every year in the United States, more than 40,000 are unnecessary. Surgery in its heyday was called the “gold standard.” However, research now confirms that many who were “cured” by surgery had a form of the disease that was never destined to threaten them anyway.
Why, then, are so many prostate operations still performed considering how surgery has such a negative effect on sexual and urinary function? The answer to this question is rarely discussed but easy to comprehend: Urologists, who are surgeons, dominate the field. Medical oncologists, the doctors who manage all other types of cancers, such as breast, colon and lung, are almost never involved in caring for men with early-stage prostate cancer. This means that most newly diagnosed men are only exposed to a single opinion—one that is biased toward recommending surgery.
When Ralph and I were brainstorming for this book we talked about the difficulties people face comprehending the complicated prostate cancer world. How would we convey such vast amounts of information to patients under-the-gun from a new cancer diagnosis? We decided to offer a patient’s firsthand experience, intermixed with the insights of a medical expert in alternating chapters.
The information Ralph and I assembled amounts to a road map for safe passage through this treacherous medical terrain. Our aim is to present a better, more accurate way of thinking about prostate cancer that deals effectively with the disease and still preserves a man’s quality of life.
Welcome to Prostate Country
Prostate country is shadowy, misty territory, the Himalayas of masculine vulnerability. There are brigands lying in wait. And a shortage of reliable Sherpas. Although making the trek would not have been my personal choice, the experience has been profound, a midlife reeducation in taking responsibility (and at times failing to take responsibility) for decisions that affect your health, your well-being, your work in the world and, ultimately, your understanding of what it means to be a man.
The words “It’s cancer,” when spoken to you by a doctor, are among the most distressing in the language. To say that hearing them leaves you reeling would not be overstating it. And yet oddly, of all possible cancers, cancer of the prostate would be my cancer of choice. In fact, I am convinced that if the Lord of Hosts had appointed a committee of power hitters—the likes of Colin Powell, Michael Milken, General Schwarzkopf, Emperor Akihito and Arnold Palmer—to design a cancer especially for men, it would resemble the prostate cancer I have managed to coexist with for over two decades.
The track I have followed has been scary at times, a cross between a high wire walk and a military exercise with live ammunition. When I was first diagnosed, the treatment options available today were still in the research stage. If they had been available back then, perhaps I might have made different choices. As it turned out, I became a contrarian, a renegade—someone who took up doctors’ time asking questions and requiring explanations, and then refused to follow advice. What the Russians would call a “refusenik.” Without realizing it, I suppose I turned into one of those feisty, difficult patients who, while irritating to doctors, often do well despite the odds. Or at least live quality lives for whatever time they have left.
The Education of a Refusenik
No one in my family or even among my close friends ever had cancer of the prostate, so it hadn’t occurred to me that I might one day be diagnosed with the disease. In fact, I had never given any thought to that mysterious gland. However, once I joined the ranks of the newly diagnosed, I suddenly felt like I was standing in the middle of what Mark calls a medical minefield.
Here’s how it usually goes: When your family doctor tells you that your PSA is above normal, or finds something “suspicious” while doing a DRE, he will refer you to a urologist who will—nineteen times out of twenty—perform a 12-core biopsy to determine whether the suspicious something is cancer. If cancer is confirmed, provided it is still contained within the prostate gland, and provided there is no medical reason surgery is contraindicated, the urologist will almost certainly recommend it.
What the average guy—myself included—doesn’t realize until that moment is that since the urologist is actually a surgeon, it’s hardly surprising that his treatment of choice would be surgery. Aside from the fact that he genuinely believes surgery is your best option, there is the financial aspect. As one seasoned observer of the prostate cancer industry told me, “Your prostate is worth what Ted Turner would call ‘serious cash money.’”
My own experience in the medical minefield began when Jeff Harris sent me to see Dr. Danforth. I knew next to nothing about the mechanics of a biopsy: how it works, how it could go wrong, what are the risks. It now appears that in my ignorance and my anxiety, I was less than fair to Dr. Danforth when I blamed him for blowing it. When I discussed that first biopsy with my old friend, Michael Klaper, MD, here’s what he had to say:
“No, he didn’t “blow it.” If the needle penetrates the tissue perpendicularly, and does not encounter anything but soft prostate tissue, the pathologist is given an intact core of tissue, relatively easy to read. But there may be a subtle curve to the surface that results in the needle penetrating slightly obliquely, which makes the forces upon the tissue going up the bore of the needle asymmetric, thus beginning to distort the shape of the core. If the needle then encounters a band of fibrous tissue, common enough in the prostate substance, a force will be exerted upon the core which further distorts it. Finally, if the already distorted core stubbornly refuses to come out of the needle, it must be extracted with an instrument, further changing the architecture—creating “crush artifact. None of this is under the control of the urologist. Do this procedure on a thousand men, and it’s a mathematical certainty that the process I have just described is going to happen to someone. In this case it was you. It’s called being human.”
Should I have been upset? Perhaps. In retrospect, I see that my overreaction was inappropriate and very risky. What if I’d had an aggressive form of prostate cancer? Waiting all those years before getting another biopsy might have been my death warrant. Warning: I absolutely do not want to suggest that other men follow my potentially dangerous example. And yet, looking back, if it hadn’t been for Dr. Danforth and crush artifact, my prostate cancer journey would probably have taken an entirely different course. What I first regarded as Dr. Danforth’s botched biopsy actually bought me nine years of quality time during a period when “watchful waiting” (or the more military term “active surveillance”) conﬂicted with the entire force and wisdom of the medical establishment.
Introducing Homo Urologo
If I was to avoid making a fool of myself again, I realized I needed a urologist I trusted as an advisor. I remembered my stepfather, Al Schwalberg, who had once been a federal agent, telling me years ago how, if a new cop in the New York Police Department wanted to get ahead, he needed a “rabbi,” someone further up the ladder—almost certainly an Irishman— to mentor him and show him the ropes. What I needed was a prostate cancer rabbi. I found him in Larry Raithaus, MD, a urologist on the island of Kauai.
I got to know Larry thanks to John Lilly, MD, the dolphin brain scientist, who rang me one day hoping that with my old LSD connections I might have access to a few cc’s of ketamine, an animal tranquilizer used by some as a recreational drug, and, when injected intramuscularly, John’s favorite “cocktail.” I had no source for ketamine but I happened to have a painful kidney stone. So Lilly put me in touch with Raithaus, who hauled me over to St. Joseph’s Hospital on Kauai for stone-blasting lithotripsy—and the beginning of a rewarding friendship.
After Michael Klaper had set me straight about the biopsy, I called Larry and asked him to brief me about the challenges a urologist faces.
“To begin with,” Larry explained, “urologists are unique in that unlike all other surgeons, they also have a medical practice at least half of which involves dealing with problems like impotence, infections, incontinence and kidney stones. The average urologist has between twenty and thirty patients to see each day, in addition to operations to perform, reports to write, meetings to attend. He barely has time to keep up with what’s new in his own field. And when your biopsy is positive, he has to make sure you understand all your treatment options, which usually calls for explaining, and then reexplaining. It takes a lot of time to educate a new patient. However, the average board-certified urologist knows that the law calls for ‘informed consent.’”
“The law states that you have to present all viable treatment options. So I quote the stats on radiation, cryosurgery, and even explain about treatments like proton beam therapy. I also maintain a list of experts in the field to whom I can refer patients for second and third opinions. I spend a lot of time giving information and advice.”
“Do they follow your advice?”
“That’s the problem. Once they hear the word cancer, most of what I tell them after that won’t even be absorbed. A lot of men will ask, ‘What do you think, Doc? What would you do?’ The average guy wants me to make the decision for him.”
My conversation with Larry left me feeling considerably more sympathetic about the challenges facing any urologist. He is the one, after all, who has to give you what is possibly the worst news of your life, educate you about the complexities of the disease and your treatment options, and help you manage the inevitable emotional trauma of the cancer diagnosis. In the end, I understood that it wasn’t just the urologist who pushes for surgery. It was a combination of the urologist’s preference for surgery and the “just get it out!” attitude of most men.