Come December, as I observe my "pros-mitzvah" -- 13 years on active surveillance (AS) for very low-risk prostate cancer -- I feel I'm at a tipping point.
Should I stay the course and keep monitoring my lesion -- a single Gleason 6 of less than 1 mm seen back in 2010 and never again in five other biopsies -- with annual or semiannual prostate-specific antigen (PSA) blood tests?
Or should I hop off the AS train? Should I make a symbolic move with a PSA jailbreak and end the cancer search?
This issue arose during my annual urology visit in late September with Brian Helfand, MD, PhD, urology chair at NorthShore University Health System in the Chicago area. It was 2 days before my 76th birthday, and the news, as always, was good.
I've had annual or semi-annual PSAs -- in the form of the Prostate Health Index (PHI) -- since I began going to his practice in 2016. He also gave me a baseline MRI followed by a systemic transrectal biopsy in 2017. Nothing of clinical significance was detected.
Helfand has "de-intensified" and customized my surveillance since then, relying on the PHI test, which he feels provides more predictive value than a plain PSA, though doctors debate this. He is no longer a stickler for biopsies every other year. In fact, he told me 2 years ago he thought I was done with prostate biopsies. (I won't miss them.)
At my recent visit, my PSA was 5.01 ng/mL (I was diagnosed in 2010 with a PSA of 3.95, but since I started on the AS path it has been in the range of 4.8-5.2). Helfand said my prostate volume is 59, and he calculates my PSA density at 0.08, well below the target of 0.125.
He told me I was good for another year on a "modified" version of AS. He would order an MRI for me if I wanted to know if I have any visible lesions.
When I asked him if I could stop surveillance altogether, he added: "You're very active in your health. Is there a harm to watching you? Does it make you feel better?" he asked.
I'm not sure.
As a medical journalist and an AS patient and advocate, I have spent a lot of time focused on AS and lower-risk prostate cancer. Maybe enough is enough? Maybe I should take up pickleball or gardening?
It's an odds game. According to insurance industry tables, my life expectancy is a sobering 9.88 years. Helfand expects I'll outlive those actuarial estimates. He said on paper and in person I appear to be very healthy, making it reasonable to stay on AS in the extreme unlikelihood that my cancer goes rogue.
My risk for an incurable metastatic prostate cancer is less than 2%. Nothing is zero, though top urologists say I essentially have zero risk.
I decided to cast a wider net and ask 16 authorities on prostate cancer from five countries what they would recommend. Bottom line: There was no consensus, though they leaned toward continued surveillance with PSA testing and maybe an occasional MRI. Some offered "Plan Bs."
Michael Leapman, MD, MHS, clinical lead in prostate cancer at Yale Cancer Center in New Haven, Connecticut, said: "There's no script for what to do 10-plus years without reclassification [of the Gleason score]."
Laurence Klotz, MD, of the University of Toronto, one of the developers of AS in the late 1990s, noted there is "no single right or wrong answer in this area."
Without guidelines, the experts' responses were all over the map.
Because several doctors suggested a mix of approaches, my choices boiled down to these (in simplified form):
Option 1 (seven of 16 urologists favored this approach): Stay the AS course with annual or semi-annual PSA (not PHI) and maybe add an MRI or a molecular marker test.
Peter Carroll, MD, MPH, an AS pioneer at the University of California San Francisco (UCSF), said: "The issue is how confident you would want to be. When men progress on AS, they generally do so within the first 5 years, but I have seen some late progression, a few of which have been very significant. These have been preceded by a sharp increase in serum PSA. The odds are very much in your favor, but if your health is good, I would continue to follow at least with a yearly PSA."
Klotz added: "Your risk of dying of prostate cancer is very close to zero, given the initial extent of disease and your stability over many years. I wouldn't bother with the PHI test. If you were my patient, you would have semi-annual PSA tests for another few years, and likely one more MRI. A biopsy would only be performed if your MRI showed a very large unequivocal lesion."
Leapman said: "There is no 'right' answer here about whether you need to have PSA tests moving forward; there is room for preference. I tend to be more conservative and think that there is little harm in checking a PSA annually. If it was me, I would probably keep getting PSA checks provided you think there is a chance you might act on the information."
Option 2 (two votes): Status quo surveillance with the PHI test.
Helfand and William Catalona, MD, of Northwestern University Feinstein School of Medicine in Chicago, both recommended I have annual or semi-annual PHI tests. Catalona is not only the "father" of PSA screening, but also helped develop the controversial PHI test. He said: "Your PHI history looks very reassuring. I would recommend, at the very least, PHI every 6 months." (10 years ago he told me I needed a prostatectomy stat -- so his view has changed.)
Option 3 (two votes): Magnetic surveillance with a dash of PSA.
Mark Emberton, MD, dean of faculty of Medical Sciences at the University College London and a pioneer in MRI monitoring, said (not surprisingly) I was overdue for an MRI. "If the MRI is normal, I discharge for an annual PSA. Men with a lesion need to be monitored for life, in my view." (I don't know where I stand now regarding lesions since I haven't had an MRI since 2017.)
Matthew Cooperberg, MD, MPH, an AS guru at UCSF, said: "I'd say 76 isn't that old! We transition to 'watchful waiting' when life expectancy starts looking like <10 years. I have occasionally seen cancers progress late -- it's uncommon. I would personally advise an MRI once in a while, which is non-invasive and should not necessarily lead to anything more."
A couple other urologists recommend MRIs as part of a Plan B.
Option 4 (one vote): Modified watchful waiting.
Kevin Ginsburg, MD, MS, co-director of the prostate program with MUSIC (Michigan Urological Surgery Improvement Collaborative), which has the highest uptake () of AS in the U.S., said: "Given your age and previous prostate history, with all your negative biopsies, I would be pretty hands off with you."
He recommended PSAs, or, based on Helfand's preference, PHI, for the next 2-3 years. If the PSA shoots up, he'd recommend an MRI.
All the urologists discouraged more biopsies -- unless my PSA shot up.
Ginsburg added: "Who knows what the future holds, but in 2 years, if your MRI looks good, PSA is stable, and now you are 78 or 79, that may be your last MRI and we'd transition to more of a watchful waiting approach."
Option 5 (four votes): Jump the AS Ship
Arvin George, MD, an AS expert at Johns Hopkins in Baltimore, says it's time for me to jump: "Your prostate was an unfortunate casualty by detecting a microscopic amount of Gleason 6 prostate cancer. We would have been better off never knowing. Ultimately it depends on your risk tolerance. If it makes you uncomfortable to ignore it, limited monitoring to ensure no drastic changes in the biology of your prostate cancer would be reasonable. Otherwise, live your life!"
I feel like I had a "bad prostate day" in 2010 that has dominated my life ever since. This is why I am questioning continued surveillance.
Ganesh Palapattu, MD, chair of urology at University of Michigan Medicine in Ann Arbor, agreed: "I recommend no further testing. And keep up the diet, exercise, and advocacy!"
Chris Bangma, MD, PhD, urology chief at Erasmus in Rotterdam, the Netherlands, and "father of AS in Europe," said: "Jump off [AS] if you can! Risks are minimal. The concern is overdiagnosis."
Overall, my expert panel strongly supported surveillance in some fashion, but a significant proportion of experts recommend dropping it.
I will continue mulling my options, as I am not due for another PSA or PHI until sometime in 2024.
Ola Bratt, MD, chairman of the national working group for organized prostate cancer testing in Sweden, which has the highest AS uptake in the world, said, "You raise an important issue. Guidelines are needed for men of all ages."
My hope is that this discussion might prod guideline bodies to consider recommendations on AS. With more and more patients going on AS, these questions are increasingly coming up. We need better schedules so the conductors (doctors) can better inform us (patients) when to get on and off the AS Express.
What do you think? Should otherwise healthy men on AS for low-risk prostate cancer end surveillance at age 75? Comment below.
Howard Wolinsky has been writing "A Patient's Journey" for 51˶ since 2016. The Prostate Cancer Research Institute just presented him with its Harry Pinchot Award for Advocacy. Wolinsky was the medical editor at the Chicago Sun-Times for 26 years. He is a first-year student in the MPH program at the University of Illinois Chicago School of Public Health. He hopes to complete the program before he turns 80.