Twenty years ago, a man I revered calmly shared the news that he had just been diagnosed with metastatic prostate cancer. Frank A. Oski, MD, was chair of pediatrics at Johns Hopkins, a beloved, iconic, and iconoclastic figure to thousands of students, faculty, and practicing clinicians throughout the realm of children’s health care, a brilliant mind who loved nothing better than tweaking the pretensions of the medically effete.
During the course of his treatment, he wrote an editorial urging his fellow males to submit to the potentially lifesaving indignities of the digital rectal examination (DRE). This was before prostate-specific antigen (PSA) testing had become the diagnostic screening tool of the day. Dr. Oski was 64 years old when he died in 1996.
Today, the story for men newly diagnosed with prostate cancer is vastly different and, for the most part, infinitely more hopeful. I know because I am one of them.
Over the past two decades, the average age at diagnosis of prostate cancer in the United States has dropped from 72.2 years (1988-89) to 67.2 years (2004-2005).1 Over the same period, the incidence rate of advanced (stage T3 or T4) prostate cancers has plummeted from 52.7 to 7.9 per 100,000 among whites and from 90.9 to 13.3 per 100,000 among blacks.1
Thanks largely to widespread PSA screening, most prostate cancers today are decidedly not metastatic at the time they are diagnosed. In fact, more than half (50%-60%) are considered to represent “favorable-risk” disease (Gleason score of 6 or less, PSA of 10 ng/mL or less, and stage T1c-T2a) with a presumably “long window of curability.”1 The dilemma that plagues so much of modern medicine is that our technological ability to discover medical problems outpaces our clinical and practical understanding of what to do about them. Prostate cancer is the male poster child for this conundrum. Over in the women’s locker room, you’ll find the companion poster for breast cancer.
Once upon a time, the focal question for a man diagnosed with prostate cancer was, what can we do? Today, for every man with early-stage, promisingly curable prostate cancer, the question is, what should we do? The choices are many, bewilderingly so. The tendency in this country is to find it and fix it, sooner rather than later. That means take it out (radical prostatectomy, open or robotic); nuke it (external radiation or implanted radioactive seeds); freeze it (cryotherapy); or heat it (high-frequency focused ultrasound).
Another choice, now gaining currency and momentum, is to simply bide some time and see what happens. This used to be called “watchful waiting.” It’s now labeled “active surveillance”—an approach that involves monitoring favorable-risk prostate cancers with rigorously scheduled PSAs, biopsies, and good old-fashioned DREs and intervening with active treatment when an incipient cancer appears to have shifted out of neutral and into overdrive.
The National Comprehensive Cancer Network (NCCN), among other groups, has recently embraced the concept of active surveillance for certain men with low-risk prostate cancer.3 In fact, NCCN now recommends active surveillance as the preferred choice—not just an option—for men with “low-risk” prostate cancer and a life expectancy of less than 10 years as well as men with “very low risk” cancer and a life expectancy of less than 20 years.3
Active surveillance is based on the premise that many newly discovered prostate cancers are indolent and destined to remain so. The great unanswered question is, which prostate cancers will march forward and which ones will lollygag? No surefire answers here, much ambiguity, and thus much controversy. My Internet meanderings have led me to, among other destinations, an imaginative characterization of prostate cancers as turtles (slow and basically stationary), rabbits (capable of hopping beyond the nest), or birds (likely to fly to distant metastatic sites).
An effort is under way to change our basic thinking about prostate cancer and, in fact, not to call some of it cancer at all. In a commentary in JAMA, Esserman et al suggested the term IDLE (Indolent Lesions of Epithelial Origin) for minimal-risk lesions.4 I can appreciate the thought and agree with the need to take a more measured and considered approach to the management of prostate cancer. However, as one now walking around with this diagnosis, I suspect that the benign terminology may lure us into a false complacency. An idle engine is still running. Maybe turtles can fly. Even some favorable-risk cancers “still progress to advanced, incurable prostate cancer and death.”2
In this age of information overload, I can read Dr. Peter Scardino’s Prostate Book, Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer, and even Prostate Cancer for Dummies, by Paul Lange, MD, a urologist and prostate cancer survivor. I can enter my vital statistics and biopsy data into a nomogram on the Web and instantly learn my chances of being alive in 5 or 10 years, depending on which treatment modality I select. I can subscribe to a newsletter that is all prostate, all the time. I can pick up the sports pages of the local newspaper and find ads describing prostate cancer as a “couple’s disease” and touting the virtues of the daVinci robotic surgical system By virtue of my diagnosis, I suddenly find myself a member of a key market demographic. How odd. If I lived in the Buffalo area, I could even join a Prostate Club.
In the meantime, I have read all the headlines declaring that prostate cancer is overdiagnosed and overtreated. Granted, the cancers harbored in some of those surgically extracted or radiated prostates might never have set sail. At the same time, I spend more than a few “idle” moments wondering whether my cancer may ultimately spawn occult metastases that will snicker at the efforts of the most skilled urologic surgeons or radiation oncologists. You tend to adopt a slightly less population-oriented point of view when it is literally your ass on the line.
An increasing number of men will have regular PSA tests. John McEnroe is only one of many sports luminaries urging us to get screened. An increasing number will be sent for biopsies if and when their PSAs lurch upward. A fair number of them will later hear the “disappointing” news (as my doctor put it) that cancer has been found.
Being diagnosed with a malignancy at any age is a wake-up call. I can feel the frosty breath of mortality on my neck. Knowledgeable doctors and nurses tell me that I shouldn’t look upon myself as a sick person at this stage of the game. I thank them for that perspective. At the same time, I am rejected as a blood donor and have fallen off the life insurance salesman’s list of Top 10 prospects.
I’m at an age when the epidemiologists cheerfully tell me I am much more likely to die of something other than prostate cancer in the time that lies ahead. They are quite likely right; my dad died of a heart attack a week before his 55th birthday. His dad didn’t make it to 60 either. In a way, at 62, I feel like I’m playing with house money.
On balance—and maintaining balance is key—I can deal with the inevitable ambiguities of living with prostate cancer. I realize how fortunate I am to have a condition that is widely regarded as having a generally curable disposition and a favorable prognosis. My friends Rick, who died of bile duct cancer at age 61, and Brad—pancreatic cancer, age 64—were not so fortunate, two creative fires extinguished much too soon. That puts everything in proper perspective. I am blessed by the love and support of family and friends, whose therapeutic value is immeasurable.
After much contemplation and discussion, I have enrolled in a clinical trial comparing active surveillance versus immediate intervention in men with favorable-risk prostate cancer.5 The hypothesis is that many of these guys can be spared the downside of radical treatment with surgery or radiation—a panoply of possible consequences that includes erectile dysfunction and persistent bladder and bowel problems—until the time that documented disease progression sounds the bell for therapeutic intervention. Evidence to date suggests that only about 1 in 3 of the men under active surveillance will show sufficient disease progression to warrant treatment.6
As it happens, I was randomized to the immediate treatment group and had to choose between surgery and radiation. I made what I consider to be a reasonable, carefully considered, and well-informed choice. I am fortunate to be the recipient of wise counsel and excellent care from the top-notch physicians, oncology nurses, radiation specialists, and colleagues at Fox Chase Cancer Center in Philadelphia. Thank you all!
The investigators will be following us for at least 15 years, examining morbidity and mortality, side effects of treatment, quality of life, and other outcomes. They will try to determine more precisely the optimal time for active intervention in men with favorable-risk prostate cancer. I hope this study, and similar investigations, will bring greater clarity to the diagnosis and treatment of prostate cancer in a way that supports evidence-based, cost-effective solutions to this ubiquitous male problem.
My unsolicited advice to men who find themselves facing the same diagnosis: Don’t panic. Take some time to explore your options (I deliberated for several months). Collect points of view—not just from health professionals, but from men who have been through a similar experience. There are lots of us out there now, some of whom have emphatic post-prostatectomy regret. Listen carefully for voices that offer information and inspire trust. Seek equanimity, that principle articulated so brilliantly by the great Sir William Osler, another Hopkins man.7
For physicians, my suggestion is to engage the newly diagnosed prostate cancer patient in truly shared decision making. Help us put everything in proper context—to understand levels of risk and to explore all feasible options with care, underscoring the fact that every case has its own unique odyssey. As Osler himself noted, “It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.”7
Twenty years ago, the outlook was far too bleak for far too many men diagnosed with prostate cancer. In another 20 years, we will have much better answers. I hope we can look forward to the day when we can say that all cancers are appropriately diagnosed and appropriately treated. Better yet, prevented. I want my children and grandchildren to live in a world where people have the opportunity, or at least a fighting chance, to survive and thrive for a full and healthy lifespan. All of the Frank Oskis. All of the Brads and Ricks. Everyone, everywhere.
The author has undergone 39 guided, external-beam radiation treatments at Fox Chase Cancer Center in Philadelphia. He is Vice President and Group Editorial Director for PRI Healthcare Solutions in New York, NY, and former editor of Contemporary Pediatrics, Patient Care, and Medical Economics magazines. He can be reached at firstname.lastname@example.org.
- Shao YH, Demissie K, Shih W, et al. Contemporary risk profile of prostate cancer in the United States. J Natl Cancer Inst. 2009;101:1280-1283.
- Klotz L. Point: Active surveillance for favorable risk prostate cancer. J Natl Compr Canc Netw. 2007;5:693-698.
- National Comprehensive Cancer Network. NCCN guidelines for prostate cancer updated to stress careful consideration of active surveillance. January 7, 2010 press release. http://www.nccn.org/about/news/newsinfo.asp?NewsID=235. Accessed July 29, 2010.
- Esserman L, Shieh Y, Thompson I. Rethinking screening for breast cancer and prostate cancer. JAMA. 2009;302:1685-1692.
- National Cancer Institute. Observation or radical treatment in patients with prostate cancer. http://www.cancer.gov/clinicaltrials/CAN-NCIC-CTG-PR11. Accessed July 29, 2010.
- Klotz L, Zhang L, Lam A, et al. Clinical results of long-term follow-up of a large, active surveillance cohort with localized prostate cancer. J Clin Oncol. 2010;28:126-131.
- The Alan Mason Chesney Medical Archives of the Johns Hopkins Medical Institutions. Celebrating the contributions of Sir William Osler. http://www.medicalarchives.jhmi.edu/osler/osler150.htm. Accessed July 29, 2010.