On Being Diagnosed

In the timeline of our memories, major tragedies stand out as spikes. Most people remember clearly what they were doing when they learned that hijacked airliners had crashed into the World Trade Center. Those of us who are old enough can pinpoint precisely where we were when we heard that President Kennedy had been shot. Being diagnosed with prostate cancer is comparable.

I was sitting at my desk at the Stanley Medical Research Institute at 10 a.m. on May 4, 2004. The immediate problem was how to persuade research staff members who do not like one another to work together. I was not expecting the call, because my urologist had said the pathology report after my biopsy would take seven to ten days to compile, and this was only day six.

The arrival of the call did not unduly alarm me—at first—because I was reasonably certain that the lump in my prostate was benign and the biopsy would be negative. My prostate specific antigen (PSA) was only 3.3, well within the normal range, and the urologist had not seen any suspicious-looking areas on ultrasound at the time of the biopsy. Besides, I was a healthy 66 years old and planning to live at least twenty more years. I had only recently acquired a few harbingers of old age: forgetting names, a diminished urinary stream, and plaques on the skin. And I hadn't yet passed the definitive landmark

of the aged: sending obituaries of old friends to other old friends. Cancer was not something I was supposed to get; cancer was for other people. As one man put it: ''Prostate cancer was as remote from the possibilities I imagined for myself as a voyage to the moon.''1

The urologist did not preface it as ''bad news,'' but announced in a straightforward way that the biopsy had been positive, that I had cancer in three of the nine cores (samples) taken during the biopsy, and that the Gleason score was 7. In an effort to wrap my mind around this meteor that had just broken through the roof and landed on my desk, I asked what the Gleason score meant. The only Gleason I knew was old-time comedian Jackie Gleason, but I doubted he had anything to do with prostate cancer. I also wondered to myself why I had not done any reading on prostate cancer, so that I could interpret Gleason scores and numbers of positive cores, but then remembered that I had been virtually certain I didn't have it, so why waste my time?

A Gleason 7, he said, was an ''intermediate'' stage of cancer. It meant that the cells were not as benign as a Gleason 4, 5, or 6 but not as malignant as an 8, 9, or 10. I did not like the sound of

An Unwelcome Surprise

When my doctor said, ''General, you have prostate cancer,'' I was thrust into an immediate and fearful state of confusion. I can still recall my inability to move a muscle for what seemed like an eternity after hearing my diagnosis.

—Gen. H. Norman Schwarzkopf U.S. Army, retired

''So now, at last, I know," I thought, and my ground-floor study, surrounded on three sides by a yard and trees, in which I had taken his call, seemed to darken. ''Everything has changed. From now on cancer isn't out there. It's the enemy inside me, eating away at something vital.'' I experienced the cliché sinking feeling, as if something had suddenly happened to my blood pressure.

—Charles Neider, Adam's Burden

"intermediate"; it reminded me of the C I had gotten in intermediate algebra. I also remembered all too clearly from my histology course in medical school what "intermediate" cancer cells looked like under a microscope. They were ugly and misshapen, not as bad as the grossly deformed cells that would qualify as Gleason 9 or 10, but certainly not to be confused with normal, orderly-looking cells. And the urologist was telling me that the ugly cells were inside me, now, as I sat at my desk. Unbelievable. I was deeply resentful and felt that I had been surreptitiously violated.

The remainder of the workday had an illusory quality. I called my wife, but said nothing to anyone else. I needed first to understand the news myself. My strongest memories of the day are of listening to other people complain about things and being sorely tempted to cut them off, saying, ''Why are you complaining, I've got cancer!'' In the late afternoon, I listened as a research colleague wallowed in his personal and professional woes for almost an hour. I wondered briefly whether, if I strangled him, a jury would find me not guilty because of mitigating circumstances. Then, driving home, I got caught in the worst traffic jam I had encountered in months. Sitting there, I thought of Job. ''Man is born to trouble, as the sparks fly upward,'' it was written. This had to be the archetypal bad day.

My immediate task was to learn as much as I could about prostate cancer and my options for treatment. I realized that I, a trained physician, knew almost nothing about the prostate. It appeared to be, in fact, the most obscure and least interesting organ in the body. In anatomy class, my group of four students had had a female cadaver to dissect, while the group at the next table had had a male. Our instructor had told us to change tables periodically so that we would understand the anatomy of both sexes. It hadn't happened. Our almost all-male class had a personal as well as a professional interest in female anatomy and, more often than not, eight of us were working at our table. I'm not sure I even saw a prostate.

How long did I have to make a decision? One book on prostate cancer advised you to ''commit to a therapeutic strategy within about three to six months after you're diagnosed,'' but sooner if your cancer is ''large and high grade.'' One study reported that delays in treatment of more than three months increased chances of recurrence ten years later. Another study found that prostate cancers for which treatment was begun an average of two months after diagnosis did not have an increase in recurrence three years later. A large 2005 study was the most reassuring, finding that surgical delays of up to a year after biopsy did not increase chances of recurrence five years later; therefore, ''men who wait several months after biopsy before undergoing RP [surgery] are not jeopardizing their probability of cure.''2 This lack of professional consensus on important prostate cancer issues would, I would soon discover, turn out to be common.

In general, I am neither laid back nor indecisive, and I found that with cancer growing inside of me, all sense of leisure disappeared. Despite reported assurances that prostate cancer is slow growing, I heard only the word growing, not the word slow. Each day that passed meant that my cancer had grown, and perhaps spread. One day it

A New Land

I sensed that I had crossed some invisible line into a new phase of my life, the way a traveler might feel when crossing a frontier and entering a different country, with a strange language, new customs, different rules, signs that made no sense, policemen with unfamiliar uniforms pacing in pairs up and down the railway platforms.

Michael Korda, Man to Man would be contained within the prostate gland and perhaps curable, but there would come a day when it would not be. Which day would that be?

It seemed obvious that the thing I needed most was accurate information. I found myself identifying with retired general Norman Schwarzkopf, who, on being diagnosed with prostate cancer, said: ''For me it was like war. First thing you do is learn about the enemy.''3 As a researcher, I had dozens of questions I wanted answered, taking into consideration all available studies. As a person with cancer, I wanted them all answered yesterday.

My search of books and professional papers told me that, according to the American Cancer Society, I was one of 230,110 men in 2004 who were being diagnosed with prostate cancer. Discourag-ingly, that number had not changed much in recent years. It meant that 630 men were being diagnosed every day, 26 every hour, 1 every 2.3 minutes, Sundays and holidays included. Two hundred thirty thousand, one hundred ten men is equivalent to the entire male and female population of Danbury, Connecticut, or Olympia, Washington. I had been in Danbury and Olympia, and that seemed like a lot of people. I also learned that 1.6 million American men currently have, or have had, prostate cancer—which is more than the metropolitan population of Columbus, Memphis, Milwaukee, Sacramento, or San Antonio. Misery loves company, but having all that company didn't make me feel any better.

''No, the man of the house is not at home.''

My reading also informed me that I had joined the ranks of some notable men who have had prostate cancer, including athletes such as Stan Musial, Arnold Palmer, and Len Dawson, and political leaders such as Bob Dole and Rudy Giuliani. Even Andrew von Eschenbach, director of the National Cancer Institute from 2002 to 2005, has had prostate cancer, and that didn't seem promising. All these men were members of the Prostate Cancer Club. Joining such a club provided little consolation—good grief, I had not even applied for membership. I was even more discouraged by the list of former club members, now deceased. It included educated, important, and wealthy men with access to the best available medical resources. The most disheartening name on the list was that of Willet Whitmore, who had been chief of urology at Memorial Sloan-Kettering Cancer Center and regarded as one of the nation's experts on prostate cancer.

Ultimately, my search for information about prostate cancer was disappointing on three counts. First, I was appalled to learn how little was known with certainty about the causes, natural course, and the relative merits of various treatment options. Hadn't President

Select Members of the Prostate Cancer Club (identified by occupation or position for which they are best known)

Current Members Mason Adams Ed Asner Dusty Baker Marion Barry Harry Belafonte Jim Berry Saxby Chambliss Sean Connery Len Dawson

Robert De Niro Bob Dole Louis Farrakhan Dan Fogelberg George Foreman Rudy Giuliani Robert Goulet Merv Griffin Andy Grove

Jesse Helms Charlton Heston Hamilton Jordan George Karl Herb Kelleher John Kerry Michael Korda

James Leach

Actor Actor

Baseball manager, Chicago Cubs

Mayor, Washington, DC

Entertainer

Cartoonist

U.S. senator, Georgia

Actor

NFL quarterback, Kansas City

Chiefs

Actor

U.S. senator, Kansas Leader, Nation of Islam Singer

Heavyweight boxer Mayor, New York City Actor

TV producer

Businessman, cofounder and chairman of Intel U.S. senator, North Carolina Actor

White House chief of staff Coach, Denver Nuggets CEO, Southwest Airlines U.S. senator, Massachusetts Editor in chief, Simon and Schuster

Member of Congress, Iowa

Marv Levy

NFL coach, Buffalo Bills

Jerry Lewis

Actor

Nelson Mandela

President of South Africa

Michael Milken

Wall Street financier

Roger Moore

Actor

Robert Mueller

Director, FBI

Rupert Murdoch

Media owner

Stan Musial

Baseball player, Saint Louis

Cardinals

Robert Novak

Journalist

Arnold Palmer

Professional golfer

Richard Petty

nascar driver

Sidney Poitier

Actor

Colin Powell

U.S. secretary of state

Pat Robertson

Televangelist

Norman Schwarzkopf

General, U.S. Army

Richard Shelby

U.S. senator, Alabama

Paul Stevens

U.S. Supreme Court justice

Ted Stevens

U.S. senator, Alaska

Joe Torre

Baseball manager, New York

Yankees

Desmond Tutu

South African cleric

Andrew von Eschenbach

Director, National Cancer

Institute

Andrew Young

Mayor, Atlanta

Past Members Who Died from Prostate Cancer, with Age at Death

Don Ameche (85) Wayne Calloway (62) Stokely Carmichael (Kwame Ture) (57) William Casey (68)

Actor

Chairman, Pepsico Black activist

Director, CIA

Silvio Conte (69)

Gregory Corso (70) Hume Cronyn (91) Glenn Davis (80) Dean Gallo (59) John Gardner (89) Ayatollah Khomeini (89) Herbie Mann (73) Spark Matsunaga (73) François Mitterand (79) Marion Motley (79) Jerry Orbach (69) Joseph Papp (70)

Johnny Ramone (55) Bobby Riggs (77) Steve Ross (65) Cornelius Ryan (54) Telly Savalas (70) William Shockley (79) Leo Szilard (66) Pierre Trudeau (80) Robert Penn Warren (84) Willet Whitmore (78)

Member of Congress,

Massachusetts

Poet

Actor

Heisman Trophy winner

Member of Congress, New Jersey

Founder, Common Cause

Iranian cleric

Jazz flutist

U.S. senator, Hawaii

President of France

NFL player, Cleveland Browns

Actor

Director, New York State

Shakespeare Festival

Guitarist, founder of punk band

Tennis player

Chairman, Time Warner

Writer

Actor

Physicist and Nobel laureate Scientist and writer Prime minister of Canada Writer

Expert on prostate cancer

Nixon declared war on cancer more than thirty years ago? What had my colleagues been doing all this time?

Second, the most useful information that was available was scattered in various professional papers, books, and websites. Much of it was out of date and contradictory, and some was factually wrong. Moreover, prominent urologists strongly disagreed with one another, publicly and not always politely, thus giving the appearance (ironic, given their profession) of an adolescent urinating contest. If

I, as a trained medical professional, was having trouble sorting it out and deciding what to do, what must nonprofessionals experience?

Finally, I was surprised to realize that I was the person who was expected to assess the treatment options and decide which one to select. I had grown up in an era when doctors usually made strong recommendations. Now, as noted by the New York Times, patients are awash in information, but ''many find the job of being a modern patient, with its slog through medical uncertainty, to be lonely, frightening, and overwhelming.''4 Despite having an extremely supportive wife, an excellent internist and urologist, and many highly knowledgeable medical friends, I felt very much alone with my decision.

This book, then, is the book I wish had been available to me when I was diagnosed with prostate cancer. I hope it will lighten the load for other men who receive the same diagnosis.

CHAPTER 2

Baseball For Boys

Baseball For Boys

Since World War II, there has been a tremendous change in the makeup and direction of kid baseball, as it is called. Adults, showing an unprecedented interest in the activity, have initiated and developed programs in thousands of towns across the United States programs that providebr wholesome recreation for millions of youngsters and are often a source of pride and joy to the community in which they exist.

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