By Howard Wolinsky
I got an immediate response to my story Sunday about how a young urologist, who I dubbed The Notorious Dr. R.P., in 2010 tried to talk me into a radical prostatectomy—even though I had a very, very low-risk Gleason 6 prostate “cancer.”
I got a second opinion—as we all should--and went on AS (active surveillance) almost 13 years ago and never looked back. I was glad to learn Dr. R.P. now offers AS now though he dismissed it in 2010. Glad he evolved and is helping his patients.
I will share some follow-ups to the column below.
But first, I want to make a request.
Please register for two free webinars I organized and am co-moderating. I don’t want to be there all by my lonesome:
—The first program is at noon Eastern on Saturday, January 28. It is the third in the series we call AS 101—co-sponsored by The Active Surveillor, Active Surveillance Patients International, the AnCan Virtual Support Group for AS, Prostate Cancer Support Canada, and Prostate Cancer Research Institute (PCRI). Register here: https://zoom.us/meeting/register/tJYtcOygrD0sHd2YDnOxcUnEg3X7qume6VWe
In this segment, “The Diagnosis,” real patient Larry White and wife Nancy visit with Dr. Laurence Klotz, father of AS, to discuss Larry’s new PCa diagnosis.
In two previous segments, Larry and Nancy met with family doctor, Dr. Steve Spann, of the University of Houston, an expert on rising PSAs (segment 1), and then there was a first patient/spouse meeting with a urologist, featuring Dr. Klotz, of the University of Toronto (segment 2).
The series aims to school patients in the "gray zone" with rising PSAs and before positive biopsies, the newly diagnosed and even old hands, spouses, and families on the basics of active surveillance.
Three more programs are in the can, and another is planned. Each is in a PowerPoint-free zone. Just a frank discussion between a well-informed patient and spouse and an expert.
I am moderating the premiere of video segment three on AS with Klotz followed by a discussion, Q&A, and a support group. Dr. Klotz will not attend in person. But you’ll hear his latest voice on a recorded Zoom session.
Questions in advance? Write me at howard.wolinsky@gmail.com
For earlier programs, go here: https://aspatients.org/a-s-101/
—I am co-moderating a program hosted by AnCan with medical oncologist Dr. Mark Scholz, co-founder of PCRI, which runs excellent programs on prostate cancer online and in-person. He is co-author of the ground-breaking 2010 expose on the urological-industrial complex, “The Invasion of the Prostate Snatchers.”
Scholz is my hero. His book, which came out while I was in the “gray zone,” helped give me the courage to buck the system and go on AS. It’s worked for me as I avoided aggressive treatment and the snatchers that he and his patient, the late Ralph Blum. warned about. (Ralph died but not from prostate cancer.)
The book was recently released in a new edition. Here’s my review:
The webinar is for those of us on AS, those considering AS, those with more advanced prostate cancer, and everyone in between.
My co-moderator will be Peter Kafka, an advanced prostate cancer patient who moderates the AnCan program for those with low-risk to favorable intermediate-risk prostate cancer. Scholz and his partners have been Peter’s oncologists for almost nine years.
If you have questions for Scholz, please send them to me at howard.wolinsky@gmail.com.
Whatever happened to Dr. R.P.?
By Howard Wolinsky
I got an immediate response to my Sunday column on Dr. R.P., whose real-life initials matched his surgical recommendations for me almost 13 years ago.
I was pleased to learn that R.P. now advises at least some patients to go on active surveillance. He has evolved, like many urologists have, from 2010 when he saw my other path was radical surgery.
I had other things in mind.
Here’s what people are saying:
My friend Anthony Henry, VP of the Walnut Foundation in Toronto, wrote: “I read you story "The Notorious Dr. R.P.” with interest. Good on you for taking the time to review the evidence. So many men are defaulting to surgery for low-risk prostate cancer without being offered the menu of treatment options.”
Anthony, as a Black Canadian, has fought this battle himself. He has found little support in the Black community for AS. He’s often been told: “AS is not for us.” Anthony, whose dad died from prostate cancer, has proven them wrong.
Then I heard from a new reader, John:
“Hi Howard
”I recently upgraded today to a paid subscription. I read your post with great interest today about how you have been able to avoid biopsies for the last seven years by using a specific type of PSA test. I would appreciate knowing the name of the test so I too might be able to avoid unnecessary biopsies as well. Thank you.”
Thank you, John.
I thought twice about plugging “the test.” There’s no magic there. You need multiple bits of data to work with your urologist in deciding what to do. This test or others add some info.
The test is the Prostate Health Index (PHI), the FDA-approved blood test, which looks at three variants of prostate-specific antigens (PSA), and extra data is added for a forecast on where your cancer may go.
Researchers Dr. Stacy Loeb and PSA pioneer Dr. William Catalona, reported in 2014: “PHI outperforms its individual components for the prediction of overall and high-grade prostate cancer on biopsy. PHI also predicts the likelihood of progression during active surveillance, providing another noninvasive modality to potentially select and monitor this patient population.”
There are other tests, not all are approved for AS (such as IsoPSA from the Cleveland Clinic). My orologist mentioned another option, 4K score from Memorial Sloan Kettering Cancer Center,
I wrote about PHI vs. 4K score in my newsletter. PHI and 4K scores fare about the same.
There's controversy about the use of these tests--as always.
My current urologist, Dr. Brian Helfand, recommends PHI once a year to follow my so-called cancer. Not every urologist agrees.
Another urologist (Dr. R.P.’s partner) suggested PHI testing twice a year for me, but deferred to Helfand’s judgment. Helfand, a urologist and doctorate-level molecular biologist, has an international rep in this field.
Helfand’s recommendation on a course to take isn’t just based on PHI but also on my overall health, age, medical history, and his clinical judgment.
Helfand says I have the lamest cancer he's ever seen. Maybe he’s exaggerating. But this cancer showed its head—all one millimeter of it—in a single biopsy in late 2010. Five other biopsies couldn’t find it.
An MRI in 2016 came up empty. It was supposed to guide a biopsy. So I agreed to baseline biopsy, which found nothing when I joined Helfand’s practice.
Year after year, my PHI test comes in low.
Helfand said if I had any less cancer, I wouldn't have it all. See: "Me and my lame cancer" in my MedPage Today column: https://howardwolinsky.substack.com/p/phi-and-4kscores-equals-in-predicting
Then, Dr. Scott Eggener, my former urologist, doesn't think my so-called (Gleason 6) is a cancer at all, but he disagrees with monitoring with PHI.
I told John his case may be different, of course, that his overall situation matters more than a single test.
BTW, Helfand used to be a hard-ass about biopsies every two years. I told him about five years ago that his stance and similar ones by his colleagues will result in a patient rebellion.
I suggested more MRI scans before biopsies, especially transrectal biopsies with the risk of potentially disabling and deadly sepsis and other infections.
Too many freakin' biopsies.
His response then? “Tough.”
Brian was always a mellow guy. But I have observed that his opinion about biopsies has softened—at least my case.
I expected he would have told me last year that he wanted me to least have an MRI. If he did, I was ready to pack my bags and undergo a micro-ultrasound in St. Louis or Cleveland.
I was shocked when instead, he moved me last year into what I call a sort of more passive-aggressive surveillance. He recommended no MRIs or biopsies unless my PHI rises. It's sort of like Watchful Waiting, with more watching and annual PHIs/less waiting. than the benign neglect of WW.
I heard from a retired pathologist John Oppenheimer, MD, who said:
“Hi Howard,
I was a prostate pathologist for 20 years (first external urologic fellow at Johns Hopkins with Jonathan Epstein and it was obvious that we were diagnosing way too many prostate cancers in men who were harmed by their diagnosis and subsequent treatments. PSAchosis is a real thing. I wrote a long detailed letter to the editors of Urology and Urological Oncology offering “prostatic tubular neoplasia” as a more appropriate diagnosis than “cancer” for Gleason score 3+3 lesions but they wouldn’t publish.
“Screening programs for PSA, those very same one promoted by pharm companies, were a veritable public health disaster, but the fee-for-procedure medical-industrial complex weren’t quite aligned. Urologists are surgeons and surgeon like to surge. It’s a certain orientation towards life. Go with old soles to a cobbler and they will offer new soles; go to a shoe store and they will offer new shoes; go to a minister and offer salvation.”
“Oh, the stories I could tell . . .”
I asked him to share.
Jim Doilney has a Gleason 9 and was given a fatal diagnosis. Twenty years ago, he rejected radical surgery, chemo, or radiation, “along with the brutal life-changing after-effects.”
As he puts it, he declined the approaches of “butcher me, bake me, or burn me," and vowed to find an alternate path. His book “Riding The Scalpel” , co-authored with his pal Rick Barrow, is a diary of his globe-trotting ways along with his adventures in Cancerland.
I am a sucker for travelogues, adventure stories and cancer memoirs where patients take on the system and win. Go, Jim.
The book is coming out soon in a second edition.
Jim said, “You are such a prolific poster I often skip your stuff due to the e-mail storms I face daily. BUT I did catch today’s piece. Thank you!
”My oncologist recently told me AS is so widely understood today that men who’d be herded, like Dr. RP did you , should be subject to malpractice suits.”
Thanks, Jim.
Yeah, I feel bad sometimes about being prolific. I do fear losing readers in a torrent of stories. My advice? Read them selectively.
I’m on a mission with The Active Surveillor. Our motto here? “Saving Prostates Daily.”
Plus I have been a newspaper journalist for more than 50 years. We newspapermen (and women) have a saying: “Reporters do it daily.” I’ll add: sometimes twice daily.
I told Jim if you miss a post, you miss a lot.
So Jim Doilney, stop bitching (wink) about my prolificity. And yes, that’s a word.