2. THERE ARE MEN SUFFERING FROM PROSTATE CANCER WHO DO NOT DIE OF IT. The USPSTF presents the debate as if it were a zero-sum game, i.e., you live or you die, and, according to the panel, only slightly more of those who are not PSA tested die than those who are PSA tested.
But there are men with advanced metastatic prostate cancer who might not die from it. They might be 90 and die of a heart attack, but when they were alive they still had prostate cancer. And despite the inkling of doubt I have, no one could ever convince me that there was no chance I wouldn’t have developed advanced prostate cancer when I was, say, 75. I didn’t want that to happen. Too many other things will happen to me, so I’d rather have one less thing to worry about.
3. HUMAN BEINGS HAVE A REMARKABLE ABILITY TO ADAPT TO OUTCOMES THAT ONCE WOULD’VE SEEMED TRAGIC . Poorly executed or inappropriate interventions and cursed bad luck have most assuredly led men down the road of impotence and incontinence, but, statistically, how often does that happen? I don’t think that often across the population. And for the men in that vast fraternity (Phi Prosta Gonna) who have some incontinence and some erectile dysfunction, how many would say that those outcomes are acceptable to have rid themselves of cancer? I would say a lot.
“With regard to prostate cancer, no man can predict what incontinence or impotence might mean for him,” wrote Pamela Hartzband, MD, and Jerome Groopman, MD, in an excellent opinion piece published in the September 13, 2012, issue of the New England Journal of Medicine and headlined “There Is More to Life Than Death.” “There is often a profound disconnect between the way healthy people view medical conditions and the way patients with these conditions view themselves.”
Ten years from now there might be a new way of looking at PSA. Perhaps researchers will have found conclusive evidence that a man tested at 50 whose PSA reading is below, say, 1, will have almost zero chance of getting metastatic prostate cancer and therefore won’t have to be tested again, or biopsied, irradiated, or cut open. The research and endless debate will continue, and I will continue to listen and hope that I don’t have buyer’s regret. But as I write this, here’s one thing I don’t have: prostate cancer.
ON A BRISK NOVEMBER DAY I meet Leonard Collier at a Center City Philadelphia restaurant. We have the instant kinship of sailors who had been on a rocky voyage but returned to shore safely.
“The last time I saw you, Leonard,” I say, “you were naked with your legs spread. You look a helluva lot better now.”
We are at a steakhouse, but he orders grilled fish and I get lobster salad. We have both pledged to stay on top of our physical conditioning.
“I had about five months to prepare for the operation,” says Leonard. “I took long walks, got my core in shape. I think it made a difference. And I followed the postsurgery instructions to the letter.”
He pulls out two pieces of paper bearing post-op instructions. Each numbered item—“If constipated, drink lots of fluids, expect incontinence and impotency for several months,” for example—has been highlighted with a yellow marker, and some have annotations.
“I was an educator, Jack, and I’m always organized,” says Leonard.
One of those annotations says “Yippee!” next to it. It was the date of his first successful sexual encounter with Asha.
“There it is,” he says. “Surgery, October 3; October 24, full erection for orgasm. I had taken Cialis on Monday the 22nd. This was two days later.”
“You really defied the odds on that one, Leonard,” I tell him.
“As soon as it was over, Asha says, ‘We have to call Jack.’ So she did.”
“I am truly honored you made me your first call, Leonard,” I tell him.
I ask Leonard to sketch out his prostate specifics. He had it all down. His PSA, which he had always gotten tested for his yearly physicals, had in three years crept from 3.99 to 4.2 to 5.2. The biopsy showed two involved cores with a Gleason of 3 + 3 on one and 3 + 4 on the other. That was enough for him.
“Again, I did my homework,” says Leonard. “I knew that African Americans are at a higher risk for prostate cancer than white men. My grandfather had prostate cancer—I don’t know if he died from it—and my father [William Collier] has it right now. He’s 87. He’s had radiation treatments. It’s been up and down for him.
“And I talked to friends. Out of 20 of my golfing buddies, 8 had either an enlarged prostate or had had surgery. There was plenty of prostate conversation. And it was good because a lot of time black men don’t like to talk about what’s going on down there, about sexual life and leakage and things like that.”
“A lot of times white men don’t either, Leonard,” I say. “But I found in my research that a lot do, too. It surprised me.” He also talked to his daughter, Monique, a pediatrician, and she advised him to take action. “So I decided that surgery was the way to go,” says Leonard. “I did my homework and made three appointments with surgeons. Dr. Lee was first. After I talked to him I canceled the other two. That’s how strongly I felt about him.”
I ask Leonard if he has heard the drumbeat about active surveillance and the USPSTF recommendation against PSA testing.
“Yes, I read all about it and heard all about it, and it didn’t affect me one bit,” he says. “My Gleason was high enough to get it, I was a black man at risk, and that’s all there was to it. That doesn’t mean I wasn’t a little nervous. Do you know I had never been in a hospital before?”
“Man, I have you there,” I say. “I’ve managed to screw up various parts of my body over the years. And I found that, while modern medicine has a hard time keeping schedules straight and keeps harassing you with bills you’ve already paid, they generally do a helluva job in operating rooms.”
“My faith kept me positive,” says Leonard. “I had Asha there. She would be my strength.”
“I hear you,” I said. “Donna did the same for me.”
“I came out a few weeks after the operation and beat all my friends in golf. They said, ‘That doctor should’ve kept you in another month. You kicked our ass and took our money.’ Then the second round? I couldn’t do a thing.”
“Same thing happened to me,” I say. “Good first outing, lousy second. But you know what? I blamed it on cancer.”
“Me, too,” says Leonard. “We can do that from now on.”
It’s time to leave. We promise to keep in touch, get together with our “nurses.” I tell Leonard that I feel good for him, not only because he had a good outcome, but also because he feels so absolutely, blessedly confident about it.
“Journalists tend not to be completely optimistic about anything,” I say. “We’re not happy unless we have doubt. We thrive best in a world of second-guessing.”
“Well, I don’t have any,” Leonard says. “I just wanted to be rid of it. I have a lot to live for. Asha. A wonderful daughter and son. My grandson. I babysit him one week out of the month. I play golf. I travel. I work two days a week at a supermarket just to stay busy. Life is good, you know? I didn’t want this hanging over my head. I consider it the best decision I ever made.”
We shake hands and depart in different directions, now bound by a disease and a diagnosis, by the skill of a surgeon and the gentle understanding of two women, citizens of a slightly altered physical universe and—the small doubts of one notwithstanding—happy as hell to be walking in it.
Sources and Resources
The Author’s E-Mail Address
[email protected]
Books
The Decision: Your Prostate Biopsy Shows Cancer. Now What?, by John C. McHugh (N/A: Jennie Cooper Press, 2009).
The Definitive Guide to Prostate Cancer: Everything You Need to Know about Conventional and Integrative Therapies, by Aaron E. Katz (New York: Rodale, 2011).
Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer, 3rd edition, by Patrick C. Walsh and Janet Farrar Worthington (New York: Grand Central Life & Style, 2012).
Promoting Wellness for Prostate Cancer Patients: A G
uide for Men and Their Families, 3rd edition, by Mark A. Moyad (Ann Arbor, MI: Ann Arbor Editions, 2010).
The Whole Life Prostate Book: Everything That Every Man—at Every Age—Needs to Know about Maintaining Optimal Prostate Health, by H. Ballentine Carter and Gerald Secor Couzens (New York: Free Press, 2012).
Other Materials
One of many stories from the New York Times about the purported harms of PSA testing: https://www.nytimes.com/2011/10/09/magazine/can-cancer-ever-be-ignored.html?mtrref=www.google.com&gwh=6978CCC47BC82CBDD04EC88E772A466B&gwt=pay
A story from the New York Times about PSA overtesting in elderly men: https://www.nytimes.com/2011/04/12/health/12prostate.html?mtrref=undefined&gwh=99840931C15A1F4F3CBFC65676E253A4&gwt=pay
An article from the New England Journal of Medicine reporting that 15-year death rates were lower with prostatectomy than with active surveillance: http://www.nejm.org/doi/full/10.1056/NEJMoa1011967
The US Preventive Services Task Force recommendation statement: http://www.uspreventiveservicestaskforce.org/ prostatecancerscreening/prostatefinalrs.htm [inactive]
An opinion piece from the New England Journal of Medicine about medical choice: http://www.nejm.org/doi/full/10.1056/NEJMp1207052
An article summarizing the findings of a study on the benefits of PSA testing: http://www.webmd.com/prostate-cancer/news/20120730/ study-psa-testing-cuts-worst-prostate-cancers
Two different opinions of PSA testing: https://www.wsj.com/articles/SB10000872396390444301704577631431570809256
A well-known Swedish study that found PSA screening beneficial while also noting the “substantial” risk of overdiagnosis: http://www.researchgate.net/publication/45089772_ Mortality_results_from_the_Göteborg_randomised_ population-based_prostate-cancer_screening_trial/ file/d912f505c4d8364410.pdf [inactive]
A prostate cancer expert and oncologist discusses prostate cancer: https://www.scientificamerican.com/article/should-you-get-screened-for-prostate-cancer/
Much-debated op-ed from Richard Ablin, MD, about the PSA test: http://www.nytimes.com/2010/03/10/opinion/10Ablin.xhtml [inactive]
A rebuttal to Dr. Ablin by James Mohler, MD, of the Roswell Park Cancer Institute: http://www.roswellpark.org/media/news/psa-and-psa- test-what-public-needs-know
More on the Dr. Ablin op-ed from John McHugh, MD, a urologist: http://theprostatedecision.wordpress.com/about/my-letter-to-the-new- york-times-in-regards-to-richard-albindiscoverer-of-psa
An article from Men’s Health magazine about a man who regrets surrendering his prostate: http://www.menshealth.com/health/coping-prostate-cancer
Michael Lasalandra, a medical journalist, describes his decision to choose active surveillance: http://www.watchwait.com/my_story.php
Jeff Jarvis’s blog on prostate cancer: http://buzzmachine.com/2009/08/10/the-small-c-and-me/
The Prostate Cancer Foundation page on erectile dysfunction: http://www.pcf.org/site/c.leJRIROrEpH/b.5836625/ k.75D7/Erectile_Dysfunction.htm
Myths about prostate cancer from the Fred Hutchinson Cancer Research Center: http://www.newswise.com/articles/view/592867/
An article from MedPage Today reporting that a study found that proton beam therapy is not superior to regular radiation: http://www.medpagetoday.com/HematologyOncology/ ProstateCancer/32213
The abstract of a paper comparing the biopsy costs and rates of cancer diagnosis of self-referring urologists and urologists who used independent labs: http://content.healthaffairs.org/content/31/4/741.abstract
Another critique of self-referring urologists and their facilities by a private-practice radiation oncologist: http://www.dattoli.com/publication/CHOICESvol27-2 june2011.pdf
An article about the link between heredity and prostate cancer: http://www.health.harvard.edu/newsweek/Heredity_and_prostate_cancer.htm [inactive]
A study about penis length following prostatectomy: http://www.ncbi.nlm.nih.gov/pubmed/12629384
An article from New York magazine about longevity: http://nymag.com/news/features/parent-health-care-2012-5
A story about combining BPH drugs with PSA readings to detect aggressive cancer: http://www.sciencedaily.com/releases/2012/08/ 120809090530.htm
A video about penile prosthesis surgery from the well-regarded Cleveland Clinic: http://www.youtube.com/watch?v=7EVVzUI8s2U
Indispensable Web Sites
American Cancer Society: www.cancer.org
The Cleveland Clinic: http://my.clevelandclinic.org/disorders/prostate_cancer/ hic_prostate_cancer_basics.aspx
Johns Hopkins active surveillance program link: http://urology.jhu.edu/prostate/advice1.php
Johns Hopkins James Buchanan Brady Urological Institute: http://urology.jhu.edu
Mayo Clinic: http://www.mayoclinic.com/health/prostate-cancer/DS00043
MedlinePlus prostate cancer information: https://medlineplus.gov/prostatecancer.html
Memorial Sloan-Kettering Cancer Center: http://www.mskcc.org/cancer-care/adult/prostate
Milken Institute: http://www.milkeninstitute.org
National Cancer Institute: www.cancer.gov
National Comprehensive Cancer Network: http://www.nccn.org/index.asp
The New England Journal of Medicine: http://www.nejm.org
NewYork-Presbyterian Hospital/Weill Cornell Medical Center: http://nyp.org/services/oncology/prostate-cancer.xhtml
Prostate Cancer Foundation: http://www.pcf.org/site/c.leJRIROrEpH/b.5699537/ k.BEF4/Home.htm
The Prostate Net: http://prostatenet.com
Roswell Park Cancer Institute: http://www.roswellpark.org/cancer/prostate
University of Pennsylvania Health System (where the author was treated): http://www.pennmedicine.org
For families of prostate cancer sufferers: http://www.hisprostatecancer.com
General prostate cancer information from a private network of oncologists: http://www.prostate-cancer.com
General Web site for men’s health issues: http://malecare.org
Online Prostate Cancer Tools
Johns Hopkins Medicine Partin Tables: http://urology.jhu.edu/prostate/partintables.php
Memorial Sloan-Kettering Cancer Center Prediction Tools: http://www.mskcc.org/cancer-care/adult/prostate/prediction-tools
University of Texas Medicine Cancer Therapy and Research Center: http://deb.uthscsa.edu/URORiskCalc/Pages/uroriskcalc.jsp
Acknowledgments
This book never would have gotten started had I not received so many e-mails, calls, and letters after my columns appeared in the Allentown, Pennsylvania, Morning Call newspaper. So I would like to thank those people first, some of whom are also mentioned in the book.
In alphabetical order (and I hope I haven’t missed anyone):
George Anthony, Henry Bartholomew Jr., Ron Bauer, Fred Bergstresser, Robin Blackburne, Jim Boeheim, John Brinson, Joe Brogan, Lou Burdick, Peter Carry, Mike Caruso, Bruce Charon, Frank Claps, Ken Clifford, Larry Christoff, John Craig, Donna Dowlatshahi, Steve Drescher, David Ernhoffer, Bob Fink.
Brenda Gerhard, Dennis Glew, Richard Grammes, Dana Grubb, Jim Haering, Carol Huennenkens, Gary Jerabek, Robert and Sandy Keiber, Joe Lamack, Jack Littley, David Lubar, Bruce Mack, John Makuvek Jr., Scott Marakovits, Emery Marsteller, Richard Mauthe, Jim Mikitka, Jeff Mohler, Ron Montz.
Norman Morris, Bill and Ann Moss, John Moyer, Robert Murphy, Ken Muth, Paul Newton, Chuck Pinyan, DL (Ron) Pizarie, Ralph Puerta, Jay Radio, Charlie Repka, Paul Rosen, Elmer Ruppert, Gale Siess, Suzzie Silfies, Bob Snyder, Kevin Snyder.
The Spang family, Bill Springer, John Stoffa, Glenn Walbert, Dan Weaver, Bob and Flo Wheeler, Gene Wieder, Joel Wingard, Bob Young, Wayne Young.
Thanks to Rodale Inc. and especially to my editor, Mark Weinstein. Thanks also to copy editor Nancy Elgin, fact-checker Sonya Maynard, and project editor Nancy Bailey. And a shout-out to my agent, Scott Waxman.
I would also like to thank Bob Orenstein and Tim Darragh of the Morning Call.
Arnold Palmer gave me a memorable 30 minutes in person and Senator Robert Dole gave
me a memorable 20 on the telephone. Jeff Jarvis isn’t quite as well known as Arnie or Senator Dole, but he was lot funnier than either of them—and anyone else—during our conversation. Thanks to all three of them.
Though the subject matter wasn’t all that pleasant, it was nice spending time with two friends, Jean Yasso and Gerry Yasso, the widow and brother, respectively, of George B. Yasso, to whom this book is dedicated.
And it was great meeting two new friends, Asha Jagtiani and Leonard Collier, my prostatectomy pal.
For expediting interviews and providing general information I’d like to thank Annie Deck-Miller of the Roswell Park Cancer Institute, and to Stacy Loeb, MD, I owe a debt of gratitude for the lengthy interview on SiriusXM Satellite Radio.
Kelly Monahan deserves much applause for her care during my operation, her explanations after it, and her oh-so-gentle removal of you know what.
Nonfiction writing almost always involves asking questions, but I’ve never been involved in a project where I had to ask so many, the result, obviously, of my being somewhat out of my element when I started. For enlightenment, I needed the experts, who are, in alphabetical order:
Dr. Peter Bach, Dr. Jerry Blaivas, Dr. William Catalona, Dr. John Christodouleas, Dr. T. Ming Chu, Dr. Steven Kaplan, Dr. Aaron Katz, Dr. David Lee, Dr. Michael LeFevre, Dr. James Manley, Dr. Edward Messing, Dr. Pablo Torre, Dr. Keith Van Arsdalen, Dr. Patrick Walsh, and Dr. Samuel Waxman.
Dr. Walsh deserves special notice because of the number of times that he, though a busy man, got back to me with more information. And Dr. Lee deserves special, special attention for doing the same, plus sharing a cheesesteak and fries and a couple rounds of golf and . . . let’s see . . . oh, yes, keeping me alive in the OR.
The Prostate Monologues Page 19
