Discover more from The Active Surveillor
The old man and AS
By Howard Wolinsky
I mentioned in this space the other day that my prostate signs point to stability and most likely I’ll die from something else.
In a way, I am lucky. I have learned to co-exist with my “cancer” on Active Surveillance (AS) without overwhelming emotional distress. Mine has not been an Anxious Surveillance.
On the other hand, I have spent nearly 13 years living with the cloud of cancer uncertainty hanging over my head.
When is enough enough? Can we hop off the AS train or the USS AS and move on?
As Arvin George, MD, an active surveillance (AS) expert at Johns Hopkins in Baltimore, told me in an article in MedPage Today: "Your prostate was an unfortunate casualty by detecting a microscopic amount of Gleason 6 prostate cancer. We would have been better off never knowing.”
I agree. But once you uncork that PCa genie, there’s no turning back.
In my case, and that of many others I know of in men with low-risk disease, cancer was seen ONCE and NEVER AGAIN. Some doctors think your immune systems wipes out the microscopic buggers. Others think cancer is still lurking in the gland, like a spider on its web waiting to spring at its next meal.
We boomers have experienced a public health disaster, like that which our female boomers and our mothers and grandmothers have encountered with breast cancer and other diseases,
A close friend of mine, the so-called medical heretic, the late Bob Mendelsohn, MD, wrote a book about the medical abuse of women entitled, “MalePractice.” It was all about these mishaps women underwent at the hands of male doctors.
Today, he would be writing “FeMalePractice” about the abuse of prostates and tits owner/operators [us] at the hands of male and female urologists—I’ll throw a few family docs in internists in there, too, since they take 90% of PSAs.
The late 1980s and the 1990s, with the advent of PSA screening, the biopsy gun, and ultrasound equipment, set men up for a big fall as radical prostatectomies became a bread-and-butter operation for urologists. Previously, urology was a bit of a professional backwater focused on “the clap” and other STDs (sexually transmitted diseases) and BPH (benign prostatic hyperplasia/enlarged prostates).
Our generation has been though an epidemic of overdiagnosis and overtreatment of low-risk cancers that could have been ignored but instead, we were pushed into an epidemic of erectile disorder and incontinence.
Active Surveillance has been sa beacon in these dreary times. But it is not the whole solution.
Better tools are needed to separate those with aggressive cancers (“the snarling tigers”) from those with non-aggressive cancers (“the sleepy lions.”)
The year I was diagnosed, 2010, 94% of us decided to undergo prostatectomy or radiation therapy, accepting risks for incontinence and impotence. The remaining 6% opted for an AS approach, which has other issues, such as emotional and financial distress.
Research has shown that AS is a safe approach for most of us with low-risk prostate cancer. 60% of us, per the American Urological Association, now opt for AS. But the flip side is that 40%—too many American men— are still undergoing aggressive treatments—compared with 10% or less in Michigan, Sweden, and the United Kingdom,
Personally, I’m trying to suss out whether I should stay on AS of some form or just hop off the AS train.
I’m a mostly healthy 76-year-old—birthday greetings still are being accepted—who only has been undergoing a type of PSA on an annual basis since 2017.
In that story for MedPage, I found that 25% of the 16 expert urologists I asked what I should do going forward felt I could safely leave AS and “live” my life.
Peter Carroll, MD, MPH, of UCSF, one of the fathers of AS, said I have about a 1% chance of developing a deadly cancer in currently healthy prostate tissue. But he. like 75% of the other gurus., thinks I should continue to monitor my prostate.
Interestingly, and maybe not surprisingly, I found patients were far more conservative than the docs. Only 7% of 72 respondents to a survey so far think I should quit AS.
There’s still time to answer a couple of questions on AS and related topics: https://forms.gle/oFvfH3rPdgJmEbiQ7
I’d like to hear what you have to say. Maybe we can get a dialogue going with the urologists and develop guidelines to help us decide what to do about AS in older men.
Consider a paid subscription to help me cover my expenses. Everything seems free on the internet. But I actually spend time researching writing these articles. No pressure. Just a little support goes a long way. firstname.lastname@example.org
You’ve got questions? They’ve got answers.
By Howard Wolinsky
Starting in November, a panel of experts will answer your questions about Active Surveillance and lower-risk prostate cancer right here at TheActiveSurveillor.com.
These top docs will respond to your questions about pathology, urology, radiology, and sex and surveillance.
Please send questions via email to mailto:email@example.com
Keep the questions short and sweet. They should be of general interest. Sign with your real name, initials, where you live, how long you have been on AS. Or sign with a wistful anonymous name, like “Lost in Flossmoor,” or “Stranded on a Desert Island.”
(We cannot offer medical advice. Go to your personal physicians for that.)
Join ASPI in celebrating AS support pioneer Thrainn Thorvaldsson
By Howard Wolinsky
Icelandic support group trailblazer Thrainn Thorvaldson, who started the world’s first support group for Active Surveillance, is being honored with ASPI’s for Patient Advocacy Award Saturday, October 28 at 12 pm-1:30 p.m. ET.
Thrainn changed my life when he heard about how I ranted about bad treatment of AS patients at a major medical meeting, and we decided to work on reforming things. We plus Mark Lichty and Gene Slattery started ASPI in 2017.
Following the Active Surveillance Patients International ceremony, they will open the floor for discussion from the audience.
ASPI’s prior award programs have included The Gerald Chodak Award, named for ASPI’s first medical advisor and AS pioneer, the late Dr. Gerald Chodak, honoring Dr. Laurence Klotz, the father of AS in 2022 and Dr. Peter Albertson, who led some of the earliest research on AS, in 2023. The ASPI AS Advocacy Award went to the MUSIC (Michigan Urological Surgery Improvement Collaborative this year.