Rolling the dice with Active Surveillance
Happy Cancer Survivor Day ... it should be every day
By Howard Wolinsky
William Catalona, MD, of Northwestern University Feinberg School of Medicine here in Chicago, is one of the giants of urology. He has left an indelible mark on his profession and us as patients over the past half century.
Along with Patrick Walsh, MD, of Johns Hopkins, Catalona was one of the pioneers of nerve-sparing radical prostatectomies, helping to transform it into a bread-and-butter procedure for urologists in the 1990s with the promise of preventing or reducing risks for the “two I’s,” incontinence and impotence.
(William Catalona, MD)
Catalona also pioneered prostate-specific antigen (PSA) testing initially in the late 1980s as a means to monitor patients whose high-risk prostate cancer had been treated definitively with radical prostatectomy or radiation. He played a major role in promoting PSAs to screen men for prostate cancer to try to detect advanced cancers early
The idea has saved lives by detecting high-risk prostate cancer early. But there was a tradeoff for those of us with low-risk prostate cancer.
Across town from Northwestern, Gerald Chodak, MD, at the University of Chicago, warned in the early ‘90s that PSA screening was unproven and posed a risk of creating an epidemic of overdiagnosis and overtreatment of patients with prostate cancer that was not life-threatening.
Chodak, who died in 2019, published an article in 1994 in the New England Journal of Medicine that led to the development of active surveillance, close monitoring with PSAs of low-risk to favorable intermediate-risk prostate cancer. (Doctors now are debating whether Gleason 6 ought to be called cancer at all.)
Laurence Klotz, MD, of the University of Toronto, Ballentine Carter, MD, of Johns Hopkins, and Peter Carroll, MD, of the University of California, led the way to develop active surveillance as a management strategy.
During the early 2000s, Klotz and Catalona held a series of debates about whether men should be followed with active surveillance. Klotz of course was on the side of AS, while Catalona supported the other side.
Klotz had been a debater in high school and in college. But he was cowed by the likes of eminences of the profession, Catalona and Walsh.
In his recent acceptance of the Chodak Award from Active Surveillance Patients International, of which I am a co-founder, Klotz recalled: “At one time I had Pat Walsh on one side and Bill Catalona on the other, and it was like one of them was pinning me down and the other one was taking potshots at me. I walked off the podium really on the verge of being sick to my stomach. I thought what am I doing? These guys are so powerful this is going to be the end of my career.”
Fortunately, it wasn’t the end of Klotz nor of AS.
Klotz won every debate but one. Stacy Loeb, MD, of NYU Langone and Manhattan VA, standing in for Catalona, beat Klotz before a European audience. Loeb eventually came to be an AS advocate and a major AS researcher.
The acceptance of AS has been very slow, seemingly as slow as low-risk prostate cancer grows for many men who live with this lame Gleason 6 “cancer” and will not die from it.
When I was diagnosed in December 2010, I had a trace of Gleason 6 “cancer” in a single core. It must have been a bad prostate day since my “cancer” has not been seen again in a total of more than 80 individual cores in six transrectal biopsies. (I haven’t had a biopsy in six years as my urologist personalized my AS plan.)
It’s a near miracle that I found that AS existed. A friend at U. of C. told me about the availability of AS there should I need it.
My first urologist blinked in disbelief when I broached the subject--but wasted no time in saying he didn’t support AS. That was back in ancient times.
Most urologists didn’t offer AS an option back then. Only 6-10% of patients diagnosed with very low- to low-risk Gleason 6 prostate “cancer” chose AS.
I am a medical journalist by trade so my discovery of AS being available and my decision to go on AS were not typical. I lucked out. I won the lottery.
As a medical reporter in Chicago, it was only natural in the 1990s that I would encounter prominent researchers such as Chodak and Catalona.
After I was diagnosed, I unofficially consulted both about my cancer.
Chodak was very supportive. He gave me advice as I adjusted to being a so-called cancer patient. He told me all men eventually get prostate cancer if they live long enough. “When I get mine,” said Chodak, “I want what you have.” Those were very reassuring words at a stressful moment.
Meanwhile, Catalona told me he thought I was making a mistake back in 2013 when I talked to him about my case. He suggested that I get a radical prostatectomy STAT.
He has never forgotten his advice to me. I am one patient out of many. But my case is stuck in his mind, and he brings it up on occasions when I interview him.
In recent years, he has changed his attitude about AS, has some patients he places on AS, and has run major studies on AS.
When I hit my 10th anniversary on AS in 2020, Scott Eggener, MD, of UChicago, who put me on AS and declared me the “poster child” for AS, congratulated me and said: “I saved you from surgery. I only wish I could have saved you from all the biopsies.”
Me too, bro. The goal long term should be to remove the wolves from the sheep and help many patients like me avoid AS altogether to focus on those with serious risks.
(Scott Eggner, MD)
I spoke to Catalona. He congratulated me. To my surprise, he, unprompted, admitted he made a mistake in my case. Then, he said--I couldn’t tell if he was joking--that my case was the only mistake he had made.
Catalona was on the panel of urologists that just reported at the American Urological Association meeting in May that it found that AS has been growing rapidly.
In 2021, 60% of patients with very low-risk and low-risk Gleason 6 went on AS.
The AS rate has more than doubled since 2014. Catalona told me the goal now is for 80% of these patients going on AS. (Rates in the U.S. is lagging behind 90%+ rates achieved in Holland and Sweden.)
Still, this is a sea change in how low-risk prostate cancer is being managed.
(American Urological Association)
Bill Catalona still takes a more conservative approach.
He stressed to me: “Patients diagnosed with ‘low-risk’ prostate cancer should not be misinformed that they do not have what is a potentially life-threatening cancer, and they need to be adequately surveilled.”
It’s funny how some doctors in talking about Gleason 6 put the quotation marks around “ low risk” and others put them around “cancer.”
Catalona is very cautious about “high-volume” Gleason 6 while doctors like Klotz and Eggener remain supportive of patients with this ill-defined diagnosis.
In an interview, Catalona told Targeted Oncology magazine in its June 2022 edition: “When surveilling patients, it really must be acknowledged that we are rolling the dice to some extent because we know from experience that 30% to 50% of them harbor worse cancer than we thought based mostly on sampling error in their biopsies. These men have to be watched. About half of them will do well long term, and the other half of them will be reclassified as having more aggressive disease and will need to go on to treatment. The challenge is really to be able to identify those who are harboring the more aggressive disease and treating them within the window of opportunity to cure them.”
He also informed me that in the research there is tremendous variability in terms of individual practitioners and practices, ranging from 0% of patients to 100% of patients being recommended for active surveillance.
“In large practices with multiple doctors, some doctors don't recommend active surveillance for any appropriate patients and some recommended it for all. There's tremendous variability that needs to be taken care of,” he told Targeted Oncology.
He told me: “I do not attempt to steer [my personal patients] into treatment unless I believe that would be their best option. Nevertheless, some opt for surveillance when I believe they are making a mistake, and some opt for treatment when I believe surveillance would have been a rational choice. I believe that You (me) have been dealt a lucky ticket, but I attribute your happy outcome more to your genes than to any sagacity of Gerry (Chodak) or Scott (Eggener).”
Personally, I’m still rolling the dice with AS and am monitoring my situation with an annual phi (Prostate Health Index) test. In this game of Gleason craps, I want lucky 3+3=6, not a 7—or higher.
What are you doing on the evening of June 7? How about joining me for a program about being a prostate cancer patient? It won’t just be about AS.
Mark this on your calendar: Join us on Zoom at the Tri-Cities Support Group from outside Vancouver.
No registration necessary. Go to: https://bit.ly/3NGQQob
Here’s what ProstateSupport Canada said:
“Lessons Learned: My Prostate Cancer—and Yours”
JUNE 7TH, 2022 |
7:00 PM Pacific/8:00 PM Mountain/ 9:00 PM Central/10:00 PM Eastern
Go to: https://bit.ly/3NGQQob
From Dale Bryant at Tri-Cities:
The Tri-Cities Support Group's speaker will be Howard Wolinsky, a co-founder of Active Surveillance Patients International. Howard is an award-winning medical and science journalist from Chicago, who wrote for the Chicago Sun-Times. He recently started writing a newsletter: TheActiveSurveillor.com
Howard is the author or co-author of three books about medical issues.
Since he has been so willing to speak to people and write about his experience with prostate cancer, he is an ideal choice to introduce the topic of how to talk about prostate cancer to family, friends, and those with whom we come in contact. We are hoping that his talk will serve as a springboard for an interesting sharing of information on how comfortable people are to talk about their prostate cancer journey with others.
Nearly 200 people attended an AnCan webinar featuring Drs. Stacy Loeb, NYU Langone/Manhattan VA, and Justin Gregg, of University of Texas MD Anderson, on the impact of sleep, exercise, and nutrition on prostate cancer of all grades.
Click here to view the video:
https://ancan.org/webinar-optimizing-sleep-exercise-and-nutrition-in-prostate-cancer/
…….
How’d you like to join a study on lifestyle and prostate cancer?
Stacy Loeb, MD, a urologic oncologist at NYU Grossman School of Medicine, is looking at sleep, exercise, nutrition, and survivorship in prostate cancer patients and their partners and families.
The purpose of this study is to examine the value of a website with sleep and lifestyle recommendations for patients with prostate cancer and their families.
To be eligible for the study you must:
∙ Be a U.S. adult over age 18
∙ Diagnosed with prostate cancer OR partner/family of a patient with prostate cancer ∙ Have telephone and internet access
∙ Have trouble with sleep
Participation in this research study will include:
∙ Visiting a website at least once weekly for 3 months
∙ 2 online surveys
∙ Wearing a wristwatch to measure activity for 2 weeks
∙ 2 telephone calls with the study team
∙ $125 in gift cards for study participation
If you are interested in learning more about the study, please contact Nataliya Byrne: Nataliya.Byrne@nyulangone.org • 646-501-2681
Finally, the video of the AnCan-ASPI program on BPH with Steven “DrProstate” Kaplan, MD, the expert on enlarged prostates from Mount Sinai, is available at:https://ancan.org/special-presentation-it-aint-your-grandpas-bph/
Dr. V. Thanks for responding to our reader, Charles. So much with this cancer and its treatment is confusing and contradictory. HW
Were it the case each of us a wide reader, names you note here of the "Who's Who"-plus others- found in Jack McCallum's, "The Prostate Monologues" would appear familiar, your message redundant. But why spend the time at all when blessed with "The Active Surveillor!" The power of your innate ability, result of treatment by BIGGEST names in industry 12 years ago, is not solely in research near impossible for typical subscriber to obtain on his/her own; no, equally important is repetitive highlighting through which each of us-with time-learn, bringing ALL of us along for the ride. While 6 to 60% and counting in 10 years is remarkable, some support groups aligned to medical center's remain closed-lip to ongoing open discussion; USTOO groups guilty also. You've been 'round long time, Howard, seen it all. One has to wonder whether impact of your newsletter shared before such groups likely greater than the millions spent by national organizations were we to simply open our mouth.