The Prostate Monologues

by Jack McCallum

  Palmer recognized early, he says, that he was a lung cancer candidate.

  “As soon as the Surgeon General came out with his recommendation, I stopped,” he said. “Okay, that’s not quite true. I went off and on with it. Smoked for six months, didn’t smoke for six months. But finally it got to me. I didn’t want lung cancer. So in 1971 I quit for good. Never touched another one, never will.”

  IN 1991, SIX YEARS BEFORE PALMER was diagnosed with prostate cancer and five years before Senator Robert Dole of Kansas opposed Bill Clinton for president, Dole got his diagnosis. He was upfront about having the disease before Palmer was, but he is remembered more for what he said about a postsurgical remedy for erectile dysfunction.

  Senator Dole talks to me via phone from his Washington, DC, office.

  “I took 30 days or more trying to decide what to do after I got my diagnosis. Elizabeth [his wife, who served as both secretary of transportation and secretary of labor in the 1980s] and I talked it over very carefully. I went to the doctors at Walter Reed. They’re not making $1,000 an operation, and they didn’t have a dog in this fight, so I listened to them. They told me about watchful waiting, but they thought I should get the operation. And so I did. Their big reason was this: With cancer, you never know. You never know.”

  Senator Dole sounds as irascible as ever. While we talk, I can’t help but think about the spot-on impression Norm MacDonald did of him on Saturday Night Live. It was parodistic, sure, but it was also respectful and somehow warm.

  Dole’s feelings today about his operation, however, are 180 degrees removed from Palmer’s.

  “I think sometimes what the doctors tell you, as far as incontinence and erectile dysfunction are concerned, they are way too optimistic,” Dole says. “They tell you, the way I remember it, ‘Oh, you’re going to be as good as new, maybe 90 percent on erectile dysfunction and no incontinence.’ Well, I don’t think that’s true.

  “From the stuff I’ve learned since the operation, you will die with it, not from it. So if I had to do it all over again, I would choose the watchful-waiting philosophy. I used to travel around and encourage men to get their PSA taken, but I wondered later if I was maybe giving them bad advice.

  “But I will say this. More than once I was stopped at some function or another and someone said to me, ‘Thank you for talking about prostate cancer. You saved my life.’ So maybe what I did was okay.”

  Dole’s real legacy as a prostate cancer survivor is his Viagra commercials. His willingness to talk about ED got him so much attention and cultural currency that he later had some fun with it in a memorable Pepsi ad that ran during the Super Bowl. It shows him walking along the beach. “It helps me feel youthful and vigorous and most importantly vital again,” says Dole in the spot. “What is this amazing product? My faithful little blue friend, an ice-cold Pepsi-Cola.”

  Dole and his wife were both public figures when he talked about ED, so it took guts to do that, even if he sometimes got paid for it. I ask him if any staff members worried that he would damage his virile image and thus his political standing.

  “Heck, no,” says Dole. “What I heard mostly from people around me was ‘Where can I get the stuff?’ ”

  FRANK ZAPPA DIED IN DECEMBER 1993. His last brief interview is available on YouTube. It furnishes a haunting image of the ravages of prostate cancer. His voice is weak, his hair and beard have gone gray, his complexion is yellow, he looks a hundred years old. Only a few months before that he had been interviewed on the Today show, a clip you can find on YouTube. He didn’t look great and not at all like the frazzled maniac I had seen on stage in 1970 when he fronted the Mothers of Invention, but he didn’t look like he was dying either. When he started to go, he went fast. Zappa had been diagnosed with prostate cancer in 1990 but figured he had been living with the disease for a number of years before that.

  “Is there anything you want to say about prostate cancer?” the interviewer asks him.

  “Well, it’s worthwhile being examined,” Zappa says. “On the other hand, over a period of years I had had urinary problems and they didn’t find it. That’s why it came as such a shock to me when they told me I had it. You can imagine how irate a person might be when he finds out, yes, you have cancer, but we can’t operate on it.”

  Zappa was not exactly a health nut—he puffs away on a cigarette as the Today correspondent asks him questions about cancer, and it’s within the realm of possibility that he took a few drugs during his day. “To me, a cigarette is food,” he tells the interviewer. “Tobacco is my favorite vegetable.”

  Johnny Ramone, guitarist for the seminal four-chord punk band, was three years older than Zappa when he died of prostate cancer at age 55 in September 2004. Ramone, whose real name was John Cummings—the Ramones took their last name in honor of Paul McCartney, who used to check into hotels under the alias of “Paul Ramon”—had gotten his diagnosis four years earlier and had received doses of chemotherapy.

  Johnny didn’t talk much about prostate cancer and died quietly, two years after the group he cofounded was inducted into the Rock and Roll Hall of Fame. The Ramones were indeed a star-crossed bunch of musicians. Joey (born Jeff Hyman) died of lymphatic cancer in 2001. Dee Dee (Douglas Colvin) died of a drug overdose in 2002. Johnny, a political conservative who thanked George W. Bush at the hall of fame induction ceremony, was known for taking care of himself, staying away from drugs, drinking only in moderation, and working out.

  Speaking of drugs, Timothy Leary, the Harvard professor who proselytized for LSD, died of prostate cancer in 1996 at age 75. He had been diagnosed just one year earlier.

  Dan Fogelberg, a musician who went at his craft more quietly than Zappa and Johnny—more quietly than Leary, too—died of prostate cancer in 2007, three years after he was diagnosed. Through the efforts of his widow, proceeds from some of his songs have gone to prostate cancer research.

  Prostate cancer killed three celebrated poets, one who won the Nobel Prize in Literature and two who perhaps should have. The Nobel winner was Chile’s Pablo Neruda, who died in 1973 at age 69. The other two were Robert Frost, who had a radical prostatectomy in 1962 when he was in his 80s and died shortly afterward, and Langston Hughes, who died in 1967 at age 65. Hughes’s death was officially declared as being the result of complications from abdominal surgery related to prostate cancer.

  A Nobel winner in two other fields, Chemistry and Peace, Linus Pauling, died of prostate cancer in 1994, three years after he got his diagnosis and after he had received radiation therapy. He was 93.

  Bill Bixby, a gentle man who played Dr. David Banner on the television version of The Incredible Hulk from 1978 to 1982, died in 1993 at age 59, two years after receiving his diagnosis. Bixby’s case is worth a look because it touches on so many aspects of the disease. In January of 1991 he was crippled by a sudden pain in his hip. He visited his proctologist, who performed a digital rectal exam and found an alarmingly large growth. I have no idea if Bixby had gotten PSAs—this was right around the time, remember, that they were becoming SOP—but he said that he had gotten digital rectals on a regular basis. A biopsy, a CAT scan, and a bone scan confirmed a diagnosis of advanced prostate cancer.

  Before his radical prostatectomy, Bixby deposited sperm in a Los Angeles sperm bank “just in case Laura [his wife] wanted to have my child, should I die,” he told People in a March 1993 story. That became a moot point when his wife filed for divorce in the middle of his ordeal.

  He felt okay for a while, but the cancer returned and Bixby was told that it had spread to his spine. He continued working but then began taking painkillers. At the UCLA Medical Center he began an eight-week treatment with an experimental drug called suramin, which researchers hoped would halt the spread of the cancer. He was confident. “I want Congress to not build one fighter plane,” he said in that 1993 story, “and instead use the money to research suramin.”

  Eight months after that story, which was somehow full of both dread and hope—People kn
ows how to do that—Bixby died.

  The two decades since his death give us some perspective. Prostate cancer is in most cases a slow-spreading disease, slower than most cancers. But not always. If we believe Bixby, he had regular visits to his proctologist yet progressed to advanced prostate cancer between six-month exams. It happens.

  His deposit in a sperm bank is typical of men who are facing a prostatectomy but still might want to father a child. You will have no sperm after the procedure.

  Bixby put some hope behind an experimental drug, which is absolutely understandable. If I were in Bixby’s shoes, I would’ve said, “Bring it on,” too. And there was, indeed, hope for suramin. A 1997 entry on the Johns Hopkins urological Web site talks about it in a measured, optimistic tone. But now it is all but forgotten as a possible cure for prostate cancer (though it is being discussed as a treatment for autism). There are always experimental drugs and much hope comes along with them, but at this point there are no drugs to cure any kind of cancer.

  Many other celebrities have died, too, and this is by no means a complete list: Merv Griffin, Don Ameche, Hume Cronyn, Hopper, producer Joseph Papp, Earl Woods (father of Tiger), former Canadian prime minister Pierre Trudeau, Bud Abbott (of Abbott and Costello), and Glenn Davis, the 1946 Heisman Trophy winner, to name a few.

  At the same time, millions of men have survived prostate cancer, one of the earliest known being Sir Laurence Olivier, who was diagnosed in 1967 and was cured with radiation treatment. (He died of renal failure in 1989.) Other relatively early prostate cancer survivors include—and this is by chronology, not talent—Jerry Lewis (prostatectomy in 1992); Robert Goulet (prostatectomy in 1993); and Harry Belafonte (cancer diagnosed in 1996 and he started with radiation and eventually had surgery after which he became a significant spokesman for prostate cancer awareness).

  The clusters of contemporary survivors are fascinating. There are Bonds—Sean Connery and Roger Moore. There are musicians who rock (Springsteen’s drummer Max Weinberg) and musicians who jam (Grateful Dead bassist Phil Lesh). There are Democrats (Secretary of State John Kerry) and Republicans (Rudy Giuliani) and at least one politician who is sui generis (Marion Barry). There are generals (Colin Powell) and Navy drill instructors (Louis Gossett Jr.; okay, he was acting). There are coaches from all sports (Joe Torre, baseball; Marv Levy, football; Phil Jackson and George Karl, basketball). There are billionaire media tycoons (Rupert Murdoch) and grizzled bosses (Ed Asner; okay, he was acting, too). There are guys you’d love to see chatting at a cocktail party—evangelist Pat Robertson and Nation of Islam leader Louis Farrakhan, and two guys you might need to referee that conversation, Nelson Mandela and Bishop Desmond Tutu. And there’s a guy who could get anyone to that party on time—NASCAR legend Richard Petty.

  Perhaps the two most famous ongoing survivors are Warren Buffett and Robert DeNiro. They handled their diagnoses in very different ways. Buffett went public, telling the tale that his cancer was discovered in the classic manner—his PSA jumped, and, as Buffett said, “a biopsy seemed warranted.” He also decided that intervention was warranted, and he chose radiation, the most logical course of action for a man in his 80s. In September 2012, he told an Omaha newspaper (which he happens to own), “It’s a great day for me. Today I had my 44th and last day of radiation.” At this writing, Buffett was doing fine.

  DeNiro, whose father died of prostate cancer at age 71, got a diagnosis of early-stage prostate cancer in 2003 but did not reveal his choice of intervention, if any. That is not surprising since the man reviles attention. I once sat across from DeNiro on a flight from Newark to Los Angeles. (I had upgraded on points, but I assume he had the cash to book first class from the beginning.) Anyway, DeNiro came on the plane looking a little haggard. He grabbed a pillow, told the flight attendant he did not want to be disturbed—not for water, not for lunch, not for a pilot’s droning rumination on the beauty of the Badlands—and curled himself into a ball in the window seat and went to sleep. He never stirred until we alighted in LA.

  CHAPTER 15

  ... In which the author presents personal prostate stories, ones with both positive and negative outcomes, that may provide guidance

  Jeff Jarvis

  AGE AT DIAGNOSIS: 55

  PSA LEVEL: Unknown, but relatively low

  GLEASON SCORE AND BIOPSY REPORT: 3 + 3; 5 percent involvement in one core

  DECISION: Robotic prostatectomy

  OUTCOME: Mixed

  Jeff is a well-known blogger on the subject of Internet rights, and he wrote a seminal book on that subject called Public Parts, in which he argues for “publicness,” i.e., more openness and less fear of revelation.

  Not surprisingly, he has written candidly about his prostate cancer on his blog, the link for which is in this book’s Sources and Resources section. Here is Jeff’s story.

  “After my biopsy, I asked, ‘Is this like Amelia Earhart trying to find the island? One degree off and you wouldn’t have found the cancer?’ Well, that’s possible.

  “But once I found out I had cancer, whatever the level of it, there was no doubt what I was going to do. I was already a hypochondriac. I have two kids, and you hear ‘cancer,’ and the way I see it you get it out. If science knew the difference between fast growing and slow growing, maybe my decision would be different. But they don’t.

  “Before I did anything, I talked to David Agus, a doctor who wrote The End of Illness. His advice was to get treated.

  “At about the time I was diagnosed, Rudy Giuliani was getting radiation seeding. I thought, ‘I’ll have that, please.’ But I was going to Sloan-Kettering for my treatment, and they told me about how difficult it might be [to do it] if a prostatectomy was needed after radiation. So I said, ‘I want the robotic method.’

  “As far as urinary continence goes, I had a drip there, a drab there, but nothing serious. You do your exercises and that goes away.

  “But sexually? I’m dead as a doornail down there. I took Viagra prophylactically. I have a heart condition, so I was nervous about taking anything else. Yes, I can stimulate myself—you don’t have to worry about having tissues anymore because of the dry orgasm—but I can’t have intercourse.

  “I tried a few pumps. I actually went into a porn store for one and it’s true that you get what you pay for. Then I got a prescription for one—shameful how they gouge desperate people. In short, it’s worse than inefficient. It distorts the body part and does little else.

  “How do I feel about my decision? Well, once in a while I’ll say to myself, ‘Did I get screwed?’ Obviously, I mean that metaphorically because literally, it’s not happening. And then I feel bad for myself.

  “On the other hand, I’m still grateful I did it. My grandfather died of prostate cancer. I’ve known people who have died of prostate cancer. I didn’t want to be one of them.

  “And I am angry about the USPSTF recommendation against PSA testing. I take the Internet attitude on this. More information is better. You have a right to have information about your body. The problem is not information; the problem is what to do with the information.

  “When you make judgments across a statistical pool, as the USPSTF did, okay, you reach some conclusions. But I’m not a pool. I’m one person. And I’m not going to play the odds.

  “I think it’s vital that men know about prostate cancer and PSAs and all other information. Women did an incredible job of getting out the message about breast cancer and it saved lives. There was a time when you couldn’t even use ‘breast’ on the Internet. At first AOL put it on their list of dirty words and so people couldn’t even research the subject of ‘breast cancer.’

  “ ‘Penis’ is the same way today. And then to have a panel come out and say you shouldn’t get tested? You shouldn’t have information about yourself? That’s crazy.

  “Okay, if I were 82-year-old Warren Buffett, maybe then I’d say screw it. But I wasn’t ready to screw it.”

  TAKEAWAY: Jeff’s situation was similar to mine. Activ
e-surveillance advocates would say we were good candidates for it, but we thought about our families and ourselves. We didn’t want to live with cancer. His outcome—good on incontinence, not so good on potency—is not unusual. I’m doing better than Jeff.

  His early flirtation with radiation seeding was influenced by Giuliani. That is typical. Our society frequently learns about disease from celebrities. But Jeff thought about it and concluded that he wanted to go in a different direction.

  As for his experience with pumps, well, I haven’t used one, and I’m still waiting for someone to wholly endorse them. And I sure as hell wouldn’t buy one in a porn store.

  Bob Snyder

  AGE AT DIAGNOSIS: 66

  PSA LEVEL: About 5

  GLEASON SCORE AND BIOPSY REPORT: 3 + 3; 15 percent involvement in one core

  DECISION: Active surveillance

  OUTCOME: So far, so good

  Bob was one of the people who contacted me after my first column about choosing active surveillance. I was happy to hear from him since most people I talked to had elected some form of intervention. Here is Bob’s story.

  “After going through my annual physical with my internist, I was referred to a local urologist for follow-up because of a growth on my prostate that he had felt during palpation. My urologist indicated that I should have a PSA test and then a biopsy. The results indicated that the growth on my prostate was benign, but that 15 percent of one of the other biopsy samples indicated prostate cancer.

  “My urologist put all the results of tests and other information through Sloan-Kettering’s Web-based prostate cancer [outcome-prediction tool], and this indicated that intervention via radiation or surgery would only increase my ‘living to old age’ by 2 percent. The result said [my odds of long-term survival were] 97 percent if we did active surveillance versus 99 percent if I would select some type of intervention.