More to managing low-risk PCa than looking at life expectancy: researcher
Auburn Coach holding that prostate tiger
By Howard Wolinsky
Mileage varies with Active Surveillance (AS).
Maybe you’re following your own AS comfort level all the PSAs, MRIs and biopsies vs., say, the de-intensified approach I’m taking, known as Watchful Waiting (WW), or AS lite, limiting myself, with medical support, to annual PSAs.
Or maybe you’re somewhere in between on the AS path.
I know several men on AS in their 80s. One wants to stay on the same “aggressive” AS into his 90s and even later, if he can, with the full monte of surveillance. Maybe a biomarker test.
Another had been debating whether to leave the AS train. He feels he has gotten all he needs from AS, and it’s time to move on. Your ticket; your ride.
(Riding the AS train in Antwerp—Howard Wolinsky)
I have been debating this myself and will write more on it soon. My advice? Personalize your care based on how you handle risk with advice from your doctor, spouse, peers.
Researcher Lisa Lowenstein, PhD, MPH, RD, Associate Professor, Department of Health Services Research, Division of Cancer Prevention and Population Sciences, The University of Texas, MD Anderson Cancer Center, Houston, told Urology Today how patients “transitioning” out of AS and their doctors need to develop “a shared decision-making intervention” to address patient gaps and patient anxiety about reducing surveillance.
(Dr. Lisa Lowenstein)
She and interviewer Zachary Klassen, MD, a urologic oncologist, Assistant Professor Surgery/Urology at the Medical College of Georgia at Augusta University, Wellstar MCG, Georgia Cancer Center, discuss how patients resist transitioning “due to fear of missing cancer progression, while clinicians recognize their desire for continued reassurance.”
Personally, I “transitioned” unofficially to AS lite in 2016, having been on AS for six years and undergone six biopsies, only one of which showed a single core of a small Gleason 6 “cancer.” The one mm lesion apparently just disappeared. Poof.
In 2018, I told my urologic oncologist that I had read an article in New England Journal of Medicine about how MRIs—which I personally dread because I get claustrophobia—could be used to monitor low-risk guys like me and avoid transrectal biopsies, which carry risks such as potentially disabling and deadly sepsis. I said there would be a patient rebellion unless doctors stopped giving us so many biopsies.
My urologist insisted that the biopsy was his best tool, but he listened, and I officially moved over to de-intensified AS lite.
I know that not all of you would or should do what I do. You have to go your own way—consulting with a urologist you trust and support from spouse and care supporters.
You may prefer full-blown AS. I get it. There is more reassurance if you have all the MRIs and biopsies. I am monitored minimally with a version of the PSA test, Prostate Health Index. I can get more aggressive with an MRI or a biopsy, if needed, if the PSA shoots up—but it has been stable around 4.8-5.2 for years.
I benefit in this way from being a pin cushion for the first six years of this journey.
Lowenstein said guidelines vary on when to leave AS: “…it's not very clear. And there's a lot of talk about life expectancies. There's a lot of talk about comorbidities. And what I don't show here is that there is a lot of talk of frailty assessment and shared decision-making. Because as you know, many of the men on Active Surveillance and Watchful Waiting tend to be a little bit on the older side.”
Whoa, go easy on that, Lisa. I’m 77, I feel 17 (and my podiatrist says I have the blood circulation of a 17-year-old to prove it), and there is a wide range of experience and health statuses at all ages. My urologist is betting I still have a long horizon even though my mom died from creast and colonn cancer in her late ‘60s and her mom died just sort of 100.
Lowenstein emphasizes to clinicians the importance of considering the whole patient beyond their cancer, including their daily life and goals, rather than focusing solely on life expectancy.
Life expectancy has been a key factor, based on insurance tables, in deciding whether to stay on or jump off the AS trolleyz My urologist says his patients don’t die based on prostate train schedules.
Lowenstein said she often hears this quote from patients: “My thought is if I develop these symptoms, that could be an extreme form of prostate cancer. So, I could be shooting myself in the foot by not pursuing monitoring."
Where do you stand?
Then, after talking to patients, she asked clinicians what they thought. She describes a typical clinician who has been seeing these patients for 25 years, “and he's just saying like, most people don't want to be kicked out of the clinic. They want to keep on coming back. They want to say hi. They want to say, ‘How am I doing? Am I looking good, doc?’ The doc says, ‘You're looking terrific." And they're like, ‘All right, great. See you again next year.’ And that's usually the pattern.”
Both patients and urologists don’t want to experience “decision regret” or “anticipatory regret.”
So for many of us, AS is part of our routine. We don’t want to walk away from it—even if we have more serious conditions.
Lowenstein concluded: “So even in the face of heart attack, [AS patients] still want to be tested. So from a patient perspective and their values, I think it's really on the clinicians to drive home the clinical aspect…”
TIME FOR ACTION On Pending Cut of DoD’s prostate cancer research
ZERO Prostate Cancer is reporting that Comngress may be voting tomorrow on a bill to cut by 57% funding foCongressionally Directed Medical Research Programs, which includes the Prostate Cancer Research Program (PCRP).
The DoD program focuses on lethal advanced prostate cancers, having dropped research on lower-risk PCa and Active Surveillance years ago.
Still, we need to support our brothers with advanced prostate cancer. Get your position out to your state’s Congressional delegation here: https://zerocancer.quorum.us/campaign/SAVEPCRP/
Auburn Coach Freeze holding that prostate tiger
By Howard Wolinsky
Auburn University Tigers’ coach Hugh Freeze recently went public with his diagnosis with prostate cancer.
Details were spare but it sounds like he has a less aggressive cancer—a Sleeping Lion— in contrast to the Snarling Tiger, an aggressive symbol of advanced prostate cancer. The Auburn Football program, whose mascot is Aubie the snarling tiger, announced in X that Coach has an “early form of prostate cancer.”
The post said: “Thankfully, [the cancer] was detected early and his doctors have advised that it is very treatable and curable, He will continue his normal coaching duties and responsibilities, and with forthcoming proper treatment, is expected to make a full recovery. Coach Freeze is incredibly appreciative of our medical professionals and has asked that we use his experience as a reminder of the importance of prioritizing and scheduling annual health screenings."
Naturally, I wondered how “early” was the Coach’s cancer? What was Freeze’s Gleason score? Was he offered Active Surveillance as an option? Which treatment has he chosen? Could freeze be getting radiation? Focal therapy like cryoablation, or cryotherapy, where extreme cold is used to freeze all or part of the prostate gland?
(Clockwise: Coach Hugh Freeze, Augbie the snarling tiger mascot, X post on Freeze.)
A spokesperson for Auburn Football told me Freeze is “not interested in talking publicly about this until after he completes his course of treatment “
Stay tuned.
Unsolicited testimonial
Hi Howard,
I hope you’re well, and as always, thanks for what you’re doing with the Active Surveillor. You have, and are, doing an incredible public service. And you’re constantly teaching me. Thank you.—Oli Lamb.
You’re welcome, mate. My job isThe ACtive Surveillor motto: Saving prostates daily. Keep on surveilling, .Howard
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'Crossed paths with PCa survivor who had surgery whose doc is insistent on Lupron; his career, biologist. To date he's "gone his own way", refusing because of personal research. What I see as my problem is inability to bring this individual "to god" with tools blog and webinars present. He is more than mildly guarded given "unbridled" missteps of the American Urological Association and many other similar voices of authority. Thank you, Howard, for staying the course when you've long earned the right to lay back and GLOAT!
Another great article!