In 2002, at age 55, I underwent my first digital rectal exam. The routine check set me on a 15-year path that transformed me from a medical editor on a daily newspaper in Chicago into an international advocate for men navigating the labyrinth of low-risk prostate cancer.
My exam was uneventful. My doctor, after the requisite “finger wave,” remarked, “Your prostate is small.” I also didn’t question that day the accompanying blood test for prostate-specific antigen (PSA), a protein enzyme that liquefies sperm to help ejaculation. My doctor failed to warn me how this simple test placed me at ground zero of a medical firestorm.
Doctors began testing PSA levels in the 1980s to monitor diagnosed cancers. By the early 1990s, researchers promoted it for widespread screening to detect prostate cancer in asymptomatic men. Within two years of being implemented, prostate cancer diagnoses doubled, creating a testing-induced “epidemic.”
American men with lower-risk cancers lined up for prostatectomies, paying a steep price: 15% to 20% developed urinary incontinence, 50% to 60% faced significant erectile dysfunction.
Some general practitioners and urologists elsewhere in the world were slow to adopt PSA testing because of concern about overdiagnosis and overtreatment. In 2012, the same concerns led the U.S. Preventive Services Task Force to recommend against using the PSA test as a screening tool in the general population. That debate still continues, even as new prostate cancers are projected to double by 2040. During the same period, deaths from prostate cancer are predicted to increase globally by 85%.
The problem? Over half of men treated for prostate cancer have low-risk “autopsy” cancers — silent tumors that would never cause problems and only would have been discovered in an autopsy. About 80% of 80-year-olds harbor such cancers, but die from heart disease, strokes, accidents — almost anything but prostate cancer.
PSA, it turns out, is a powerful but blunt instrument. It’s sensitive but not specific. Around 20% of men with prostate cancer have normal PSA levels, while only 25% to 30% of those biopsied for elevated PSA actually have cancer. In other words, roughly 70% to 75% of “PSA-positive” screens are false alarms. The test is excellent for tracking known disease, but generally terrible as a standalone cancer detector.
My own PSA was 3.9 in 2002, high enough to lead to a biopsy, which found a single core of low-risk, Gleason 6/Grade Group 1 cancer — just under the standard 4.0 threshold. By my second biopsy, my PSA had dropped to 3.6. Yet my first urologist, a private practitioner who had a financial incentive to operate, tried to rush me into his operating room the following week. My second urologist, at the University of Chicago, was paid the same salary whether he operated or not. He told me I didn’t need surgery and could likely live the rest of my life without being treated. He predicted my cancer would not grow in a decade. My PSA has stabilized between 4.8 and 5.2, well below the 6.5 average at my current age, 78.
Actually, within a year of diagnosis, my cancer “disappeared” and has not been seen in four subsequent annual biopsies nor in two prebiopsy MRIs.
The doctors disagree on what happened. Some think I had a spontaneous remission. Most think my cancer is just hiding. Whatever the case, I came this close to undergoing surgery I didn’t need.
Here’s the thing about prostate cancer, the most common solid cancer diagnosed in American men and the second most deadly: Like most cancers, there are few absolutes. Doctors still debate the value of PSAs — some don’t recommend the tests even as many urologists and advocates say a lack of PSA screening has led in recent years to an outbreak of incurable metastatic prostate cancer, the kind President Biden has.
The international urology community still debates the basics of treating prostate cancer: whether low-risk cancer, the kind I was diagnosed with, should even be called a cancer; which type of biopsy is safest; and whether transrectal biopsies, the most common kind in the U.S., are killing men by giving them sepsis. And of course, clinicians and researchers debate how to use the PSA test, which some doctors say is the “best test they have” — even though it is unreliable, and overdiagnoses cancers.
International practice diverges sharply from American dogma. U.S. guidelines generally remain stuck at 4.0 nanograms per milliliter as the threshold for starting cancer surveillance for everyone, though many academic centers now use 3.0 ng/mL for younger men. The U.K.’s independent National Institute for Health and Care Excellence (NICE) takes an age-graded approach: 3.0 for 50-59, 4.0 for 60-69, and 5.0 for men 70+.
In other words, my 3.9 PSA would have been unremarkable in London or Stockholm. In Chicago, it triggered biopsies and anxious conversations.
Active surveillance for prostate cancer: The gift that keeps on giving
This international divide reflects deeper philosophical differences. Socialistic European systems treat PSA levels as one data point in a clinical picture; capitalistic American medicine often treats it as the decision point. The result: The U.S. treats about 40% of low-risk prostate cancers, while the U.K. treats under 10%. Same disease, different medical cultures.
Financial incentives cannot be ignored. A Mayo Clinic study in 2019 found that six years after diagnosis, the mean costs per patient were $12,143 for active surveillance, $17,781 for radical prostatectomy, and $29,238 for external beam radiotherapy. When I founded support groups for men choosing surveillance almost 10 years ago, I heard fears from men with low-risk disease who felt their urologists were financially incentivized to push them into surgery. PSA gave urology a major cancer and helped upgrade its image from the specialty of syphilis and kidney stones. Now, urologists are saving lives and earning about $500,000 a year, putting them in the top 10 most lucrative specialists.
I’m sure that greed drives some urologists. Still, I sense that the new generation believes that surveillance is a safe choice for many low-risk patients based on the huge ProtecT trial in the U.K., which showed that at 15 years, there were no significant mortality differences between men randomized between surveillance, surgery, and radiation. However, the untreated men had a higher risk of metastases.
So most men with prostate cancer can live with it and not die from it.
Financial incentives and medical cultures partially explain the dramatic gap between academic and community practice. At major U.S. centers, surveillance rates now exceed 80% to 90%. But in community practice — where most men are treated — rates remain stubbornly below 50%. The U.S. system rewards intervention.
The psychological burden of living with a cancer that you’re told not to treat is real. PSA anxiety becomes its own disease. MRIs, biopsies, and urology office visits can add emotional distress. We call it “SCANxiety” and “anxious surveillance.”
An Italian oncologic psychologist warns these patients: “A prostatectomy doesn’t cure anxiety.” Emotional distress can be so severe that about 10% of U.S. men with low-risk prostate cancer ask for aggressive treatment, even though they are candidates for surveillance, based on a survey I presented at the American Society of Clinical Oncology.
Most importantly, what I’ve learned from 15 years of observation is that stability over time is the most reliable indicator. My decade-long plateau reflects what researchers call “tumor indolence” — a biological equilibrium where low-grade cancer cells remain dormant. No one can explain how that happens, nor can they predict who will have that experience.
The 23‑year follow‑up to the recently published European Randomized Study of Screening for Prostate Cancer showed it took a major effort in a structured PSA screening program to prevent a single prostate cancer death. The study reported that PSA screening does modestly prevent prostate cancer deaths, but only after a large amount of testing, and with clear collateral harm. In rough terms, about 450 men must be invited into repeated PSA testing to prevent one prostate cancer death. And yet, that testing means several others are overdiagnosed, leading some to live with treatment‑related side effects from cancers that might never otherwise have surfaced.
We need better tools to try to screen men without rushing them into aggressive surveillance, let alone aggressive treatment. PSAs could be stratified by family history, ethnicity, and comorbidities to help men make informed decisions. New artificial intelligence-based testing, such as Artera AI, is helping men avoid overtreatment and even predicting who will fare best on active surveillance. Experts around the world are still sorting out how best to screen for prostate cancer.
I sometimes think about whether I should have undergone PSA testing because of the chaos it has caused my family and me over the past decade and a half. Would my life have been better? Could I have avoided the stress and life insurance discrimination I faced because I opted not to treat my cancer?
If I were to do it over again, I probably still would have gotten PSA screening because I generally am a compliant patient. But I would have asked more questions.
Soon, I hope, we’ll have better testing that shows which prostate cancers don’t need treatment — releasing many of us from this relentless treadmill of testing, scans, and biopsies.
Howard Wolinsky is a Chicago-based medical journalist and publisher of The Active Surveillor, a Substack newsletter that covers lower-risk prostate cancer and active surveillance. He has been on active surveillance for 15 years.
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