Tales of Low-Risk Prostate Cancer: 'Louie' avoids an OR rush to unnecessary surgery
Look for a tip regarding the new IsoPSA test
(Editor’s note: I want to share your personal stories and tips about being on Active Surveillance. We can learn from each other.
Here’s a sampling: Allan Greenberg examining whether to continue on AS after 80, Howard Furer’s plant-based diet, Randy Apsel’s method to track low-risk prostate cancer, Joel Axler’s decision to undergo a radical prostatectomy despite low Gleason scores because of a worrisome DNA test, and John McGeown’s tango with a couple of “used-car salesmen” prostate cancer docs who tried to hustle him into unnecessary radiation therapy.
Here, I share the story of “Louie,” who was diagnosed with prostate cancer in his early 50s, successfully avoided a prostatectomy, and still is finding smart ways to remain on AS. Please contact me at howard.wolinsky@gmail.com if you want to share your personal AS story.)
By Howard Wolinsky
In 2018, at age 52, Louie dutifully underwent his annual PSA (prostate-specific antigen) blood test.
For the first time, his PSA rose slightly above the 4.0 mg/mL threshold. His doctor had him retest his PSA a month later. Not good news. He was still above that in the “gray zone” of 4-10.
Louie’s cautious internist sent him to a urologist.
Most of us are pretty vulnerable with a potential biopsy in play. Louie was no different. (Me, too.)
“I didn’t really question the recommendation and selected from one of two urologists my internist suggested. A few weeks later I was in the uro’s office, and not more than 10 minutes into the appointment, he told me I needed a biopsy,” Louie said.
He informed the urologist he (sorta) had a family history of prostate troubles. His dad had had his prostate removed in an operation, “because it was considered ‘pre-cancerous’, whatever that meant. Unfortunately, my father and I never discussed it before he died, so I have no idea of the background.”
Louie now suspects his father had a Gleason 6 cancer, a tumor that is considered indolent, lazy, or slow-growing, and one that a growing number of urologists consider to be a fake or bogus cancer and one some want to remove the “cancer” label. See:
“That’s all the urologist needed to hear, and I was in his office two weeks later, not knowing any better, for a ‘blind’ transrectal biopsy. A week or so later, the doctor called me and said ‘You have cancer, so we need to set up a time for robotic surgery for the removal of your prostate.’”
Louie’s urologist explained that he had a single core out of 12 that was positive with a G 3+3 in less than 5% of the core. That’s the best news, he could have gotten. But he initially didn’t have the knowledge then that he in effect was getting out of jail card.
This was 2018, when active surveillance, which entails close monitoring of prostate cancer, already was gaining momentum as a management strategy. Far different from 2010, when I was diagnosed, and only 6% opted for AS.
Louie had the disadvantage of seeing an old-school urologist who wasn’t well-informed or didn’t trust the research showing a Gleason 6 was a sleeping lion, not the snarling tiger the prostate can become.
Louie paused to ponder his news. He concluded that radical surgery was a radical move.
“The nurse called a few days later telling me that if her boyfriend had been in this situation, and was similar in age to me, she would want the surgery for him,” he recalled.
Louie pulled the plug on surgery or radiation. He was rolling with lucky 3+3=6.
He has became a Happy Surveillor. He’s even been called “The Poster Child for AS,” (But, hey, I was given that nickname almost 12 years ago. But I am happy to share that title with all of you.)
Fast forward to today, Louie’s still on active surveillance, being monitored with various blood tests, urine tests, and an annual ultrasound, with no plans for any future biopsies unless his test results change.
“I have learned so much more about what I should have done, including never agreeing to a biopsy until and unless I had a non-contrast MRI first than indicated concern,” he said. “I have been told that I am/was the poster-boy for Active Surveillance, and that no right thinking, ethical doctor should have ever advised removal of my prostate. As an aside, that urologist has since retired so I feel better that he is no longer doing harm to others.”
Louie also has added some new angles to consider. He underwent the new IsoPSA test, developed at Cleveland Clinic, designed to help patients who have not been biopsied and diagnosed avoid biopsies.
I wrote about this research recently and interviewed Eric Klein, MD, about IsoPSA and how it could spare 50% of patients from getting on the biopsy train.
Klein stressed that anyone can order the test but it has not been validated for patients on active surveillance. So do what you will.
Louie followed the beat of a different drummer. He persuaded his internist from a concierge medicine practice to undergo some special training online and order the IsoPSA test for him. The test lists for $400, but Louie negotiated it down to a bargain $110, which he paid out of pocket since his commercial insurer wouldn’t cover it.
Louie said, “I just got my results back and my score was good news: a 5.1 (6.0 is the threshold [where] “90% of patients with such a score do not have high-grade cancer, which is defined as Gleason > = 7). Had this test existed in 2018, I likely would have opted out of the biopsy altogether. I would not have undergone the biopsy until and unless a non-contrast MRI and/or a test like the IsoPSA indicated so.”
Louie is an AS IsoPSA pioneer.
I asked Louie why he preferred anonymity: “I am concerned that clients would treat me differently, and even friends (I have shared with all of my family and a few close friends), due to hearing the word ‘cancer’ but not understanding G6, etc.,” he said.
Louie got some help early advice on AS from Gene Slattery, co-founder with me of Active Surveillance Patients International.
(Louie also is a Founding Subscriber to TheActiveSurveillor. I don’t really charge for subscriptions. But I do appreciate the donations to help pay my transcriptionist, the multi-talented Nancy. Feel free to pay for a subscription or not.)
Attention, all vets.
Veterans Prostate Cancer Awareness and AnCan are launching a new support group focusing on issues affecting veterans.
The group is holding a drop-in organizational meeting at 8 p.m. Eastern Thursday May 26 in the Barniskis Room. Go to https://www.gotomeet.me/AnswerCancer
Contact Joe “Keep the Peace/Attend Support Groups” Gallo for more information: josephcgallo@gmail.com
The group is looking for a name. I suggest the “At Ease, Vets Virtual Support Group.”
Send Joe any ideas you have.
The group will meet regularly on the fourth Thursday of the month at 8 p.m. Eastern.
AnCan is presenting a program on lifestyle choices for patients with all grades of prostate cancer at 8-9:30 p.m. Eastern on May 31. Register at: https://bit.ly/3KkxcfC
We have more than 200 registered. But I am hoping for 300-400 registrants to hear this important program and allow you to ask the experts your questions. You can send questions in advance to Joe Gallo at joeg@ancan.org
The webinar, entitled “Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer," features Dr. Stacy Loeb, professor of Urology and Population Health at the New York University School of Medicine and the Manhattan Veterans Affairs Medical Center, and Dr. Justin Gregg, assistant professor of Urology and Health Disparities Research at UT MD Anderson Cancer Center, of UT MD Anderson Cancer Center in Houston.
Active Surveillance Patients International and the AnCan Virtual Support Group for AS are teaming up for a program on BPH, an enlarged prostate, a not uncommon problem in patients on AS with intact prostates.
It’s a drop-in First Wednesday meeting. No registration is necessary. Attend the free program, featuring BPH guru, Mount Sinai’s Dr. Steven Kaplan: ancan.org/barniskis
Did you miss the best program on the future of AS to date: “Your Voice in the future of Active Surveillance,” on April 22.? Here’s the link: https://aspatients.org/meeting-videos/
A Who’s Who of experts joined the conversation along with patients and advocates, who were not too shabby either.
Tales of Low-Risk Prostate Cancer: 'Louie' avoids an OR rush to unnecessary surgery
Interesting to hear about the ISO PSA test and someone who took it. I (and a lot of others) would like to hear from someone who has taken the newly available Mir Sentinel liquid biopsy. It was rolled out at the annual AUA conference last week in New Orleans. Among the unique and attractive qualities of this test is the fact psa IS NOT part of the measurement. From Dr. Klotz, "This is a new assay that's based on analysis of 442 individual microRNA sequences derived from urinary exosomes." Someone contacted company for price and reported it is around $1200. A bargain if it prevents you from needing a biopsy. From company website: "The miR Sentinel™ Prostate Cancer Test is a standalone, non-invasive liquid biopsy urine test that accurately detects, classifies and can monitor prostate cancer at the molecular level."
Link to test ordering info: https://www.mirscientific.com/
As someone on AS since November 2006 I am somewhat concerned about the plethora of Active Surveillance Pioneers and Poster Child(ren) being featured by the Active Surveyor