Part I: Fear and loathing on the road to PCa and Active Surveillance

Evolution of AS over the past 15 years--celebrate my AS Quinceañero

(Note: I am reviewing my 15 years on Active Surveillance. A lot has happened as I observe my Quinceañero. The story went on so long. So I divided it into two parts. Here’s a summary: I was lucky to find AS in 2010 when only 6% of men followed it. I had what now seems to be an unbelievable number of six transrectal biopsies—in those days we had annual biopsies. AS saved us from aggressive treatment and risk for life-altering side effects, Now the strategy on diagnosis is changing and many doctors are trying NOT to diagnose low-risk prostate cancer and not put patients on AS because there are burdens with being diagnosed with prostate cancer. The future is bright Gotta wear shades.)

By Howard Wolinsky

In June 2010, I started down the road to diagnosis of prostate cancer and management of my so-called low-risk prostate cancer with Active Surveillance.

My PSA (prostate-specific antigen) test results had reached 3.95 nanograms per milliliter (ng/mL) --thisclose to the dreaded 4, the threshold for prostate cancer risk and fears.

When he read my PSA score, my internist had that deer in the headlights look he sometimes got. And he did what he did when he was scared--he referred me to a specialist, this time to a community-based urologist.

My wife Judi and I went off to an appointment a few days later.

Fear was a prominent factor in this urologist’s playbook. All along the way, he emphasized urgency to act and an overlying CANCER! danger. He never mentioned I had a low-risk Gleason 6 cancer with which I could co-exist. But I am getting ahead of myself.

The unexpected biopsy

Then, he shocked us. He asked me to drop trou and get into a gown with easy access to my “back passage” as the Brit docs so charmingly put it, get on the exam table, and lie on my side.

He gave me a periprostatic nerve block with shots of lidocaine to numb my prostate. He targeted nerve bundles near the junction of the seminal vesicle with the base of the prostate.

These were ancient times., 15 years ago: He didn’t have an ultrasound machine to guide the injections.

Lucky Judi witnessed the spectacle of me undergoing a transrectal biopsy. She has been a rock throughout this “journey.” But that would be our one and only biopsy “date.”

Get this: After the biopsy, I told a personal friend, Dr. Gerald Chodak, one of the world’s top urologists, what happened. Chodak happened to one of my first urologist’s profs at the University of Chicago.

Chodak, who in 1994 had outlined the intellectual framework for more conservative management of low-risk prostate cancer leadingto development of AS, commented: “Good student.”

I know many guys still find biopsies of any kind even with anesthesia painful. But picture this. In earlier days, doctors commonly performed biopsies without anesthesia. (Yipes.) In fact, just last week, a patient told me he had recently undergone a biopsy without anesthetic from a doctor in Green Bay Packer country. Tough guys like the Packers go without anesthesia?

[Chodak died in 2019. I recruited him as the first medical advisor to Active Surveillance Patients International, the first international support and education group for men on AS. I co-founded ASPI eight years ago.]

During the transrectal biopsy, I started to hear pings from the biopsy gun, shots in the dark to retrieve 14 cores. They sounded like rubber bands snapping. Run silent, run deep.

Look mom, no cancer

My first biopsy found no cancer. Whew.

But it did reveal a High-Grade Prostatic Intraepithelial Neoplasia (HGPIN).

That sounded almost as scary as a cancer diagnosis, especially the “high grade” part. [See sidebar below.]

Dr. Jonathan Epstein, the guru of prostate biopsy second opinions, then at Johns Hopkins, confirmed the diagnosis in a second opinion.

In those days, HGPIN was considered a precursor for full-blown prostate cancer. It isn’t any more.

Back then, Epstein said I should get a second biopsy in six months.

I dutifully returned on Nov. 30, 2010 for a follow-up biopsy.

The second time, a single core of Gleason 6 low-risk (now Grade Group 1) cancer was found. Boo.

It was a life-changing event.

My urologist again raised the fear factor. I loathed the way he used fear as a marketing tool to promote unnecessary treatment.

He called me on a Friday night. A call from any doctor on a Friday evening at dinner time itself seems fraught with bad news. His voice dripped with an existential threat.

“CANCER!”

He said: “Sir, you have CANCER! Please meet me in my office next Tuesday.”

I had the weekend to stew in anxiety, fear and loathing. Did I need to get my affairs in order? Did I have enough insurance? What will happen to my wife and kids?

The drama continued on Tuesday.

CANCER!

The urologist said: “I have good news and bad news for you.” I’m sure this was a regular shtick he had repeated thousands of times.

A fatalist, I asked for the bad news first. He repeated: “You have CANCER!” No surprise.

But he didn’t say, “You have Gleason 6, low-risk cancer.” Or as Dr. Ola Bratt, a leading Swedish urologist, tells his low-risk patients: “You have a cancer that doesn’t need to be treated.”

What was the good news? The urologist said: “I have an opening in many operating room next Tuesday. I can cure your cancer.”

Why?

Why did he recommend radical surgery with the risks of erectile dysfunction and urinary incontinence?

I will never know his actual motives. But I still have had some thoughts about this.

Maybe this doctor simply was a doctor of his times. The vast majority of patients like me with low-risk prostate cancer (90-96%) in 2010 underwent aggressive therapy, especially radical prostatectomies. Many were attracted to surgery because of claims that the surgery was “nerve sparing” to preserve sexuakl function—that often was more of a promise than a reality,

Did this urologist think I had an existential threat from a Gleason 6?

I know now there was another possibility: He may have been thinking, as many urologists did then, that patients with Gleason 6 were ideal candidates for radical prostatectomy because I had a low-risk cancer.

Not surprising, urologists who operated on patients with low-risk prostate cancer got excellent long-term results just because their patients had low-risk disease.

RP became a gravy train for urologists in the 1990s as PSA screening, the biopsy gun, and ultrasound guidance ushered in a new era in urology.

A patient in a Facebook support group once told me that my doctor was pushing surgery to buy a new red sports car because I had so many biopsies. I found that offensive because he was suggesting my AS doctor was pushing biopsies—the quickest way for urologists to earn a buck—just for the money and painted me and other patients as suckers. But the AS doctor was paid on a salary—he received the same income whether he operated or not—while my first urologist was in private practice, fee-for-service medicine, meaning the more he did, the more he was paid.

At the time, I was the medical writer/editor at one of America’s largest newspapers, the Chicago Sun-Times. I knew how to research medical topics and had a strong network of sources in the city and nationally. I did my homework and found an Active Surveillance program to monitor low-risk PCa at the University of Chicago, headed by Dr. Scott Eggener, now one of the leaders of the AS movement.

‘Poster boy’ for Active Surveillance

I met with Eggener, who said my first doctor was correct. That urologist could “cure” my cancer surgically—though I’d face risks for the usual adverse effects, erectile dysfunction and incontinence.

But Eggener stressed that I was the ”poster boy” for Active Surveillance, then starting to go mainstream. He predicted in 10 years’ time my cancer wouldn’t grow.

He showed me research by Dr. Laurence Klotz, one of the founders of AS starting in the 1990s. Klotz found the mortality from PCa was the same whether a patient had surgery, radiation, or AS. I concluded: “Why treat it?” It was simple as that.

Other research soon would back that up.

Meanwhile, Chodak was reassuring. He assumed most men, if they live long enough, will develop prostate cancer even though it hasn’t caused any symptoms. He said: “When I get my prostate cancer, I want it to be the same as yours.”

Time moves on

Ten years passed in a flash.

Eggener essentially was correct. I had four more transrectal biopsies. The cancer didn’t grow, It has not been seen again.

I had PSAs and DREs (digital rectal exams) every six months and biopsies on an annual basis.

Eggener then started to space out biopsies—one of the signs of confidence as Active Surveillance began to mature as an approach. And then he put me on a “biopsy vacation.” It was nice to get off that annual biopsy train, which had risks of its own, including deadly and disabling sepsis.

Eggener recently told me: “often, if [a patient is] stable for a long time, I look for reasons not to do further MRI/biopsies and often get PSA annually….though [it’s] highly individualized,”

In 2016, for a variety of reasons but mainly because he’s a genetics expert, I switched to Dr. Brian Helfand, of NorthShore University HealthSystem [now Endeavor Health], who ordered a baseline biopsy and multi-parametric magnetic resonance imaging scan.

Again, no cancer was found.

My long history of biopsies finding no cancer offered reassurance that AS was a good path for me.

Helfand “de-intensified” my personal AS program. I am followed with an annual PHI (Prostate Health Index) test, which includes PSA and two other markers. I haven’t had an MRI or biopsy since 2016.

[BTW, Eggener, Helfand and probably most urologists think the stealthy cancer is still present in my prostate, but in hiding. Klotz suggests the cancer could be in remission. See “Mystery! The Vanishing Prostate Tumor— Do cancers really disappear spontaneously? Or are they just eluding us?” ]

Active Surveillance in 2010 was mainly an academic exercise but was starting to gain some mainstream traction. Other than a cousin of mine, I wouldn’t meet any other patients on AS for seven years.

I asked my first urologist about AS as an option. He sniffed like he detected a bad odor and snipped: “I don’t support that modality.” He does now, BTW. Things change with the “tincture of time.”

And today 60% of American men with low-risk PCa are on AS--a major advance but still lagging behind the rates of 95%-plus in Sweden and the United Kingdom and 91% in the state of Michigan, thanks to the pioneering MUSIC program.

Still, I think the national treatment rate of 40% of low-risk men undergoing aggressive treatment is shameful. Some men, their spouses and families want that cancer out ASAP. And compliant doctors treat the prostate aggressively, increasingly now with radiation.

New ideas like AS have a steep path to acceptance in a conservative fields like medicine and science. Scientists do not always follow a path of pure logic, as the German physicist Max Planck (1858–1947) once observed, “[a] new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.”

Bout changes ‘n things

There have been many changes in AS in the past 15 years. As I celebrate my AS-Quinceañero—Did you help me observe my pros-mitzvah celebration two years ago?—I’d like to mention a few.

When I started on AS, I had annual transrectal biopsies based on the Johns Hopkins protocol. It provided a measure of extra caution for even a usually slow-growing cancer.

Spacing out biopsies

Over the years, the interval between biopsies typically has been spaced out from one year to two, three, even five years. I haven’t had a biopsy in seven years.

Helfand has confidence that the annual PHI is enough to monitor my cancer—which he often has described as “lazy.” Dr. Eggener, my first AS doctor, said my cancer was “wimpy.”

Sticks and stones … I’m not offended. It’s a good thing.

I’m also not bothered by indolent, lethargic, sluggish, shiftless, good-for-nothing, or any other synonyms. I know that I won the PCa Powerball lotto

The intent in my case is surveillance, but some sticklers don’t consider my current approach active enough and refer to it as “watchful waiting.” Whatever.

Transperineal time?

Transperineal biopsies—passing biopsy needle through the sterile ‘taint as opposed to transrectal biopsies through the germy rectum—are another area on which I have campaigned and seen the needle move.

Patients increasingly are choosing transperineal biopsies, which do a better job of finding cancers and may--experts in the U.S. but not Europe debate this--help us avoid sepsis and other infections and help better manage antibiotics and reduce antibiotic resistance.

A sure sign of change: Many of the urology residents I have spoken with have only performed transperineal biopsies. Change is coming.

(Yet another debate: A Norwegian infection expert estimates that 2,000 American men die from sepsis caused by prostate biopsies. See “Death by prostate biopsy.” One is too many. I’ll be writing more about this soon. )

Avoiding biopsies

Prebiopsy MRIs and biomarkers, including AI technology, such as Artera AI, are helping men avoid unnecessary biopsies. See “Prebiopsy MRI study offers strong reassurance that patients can safely skip risky biopsies, German researchers report.”

The way I look at it is there was a public health emergency with prostate cancer diagnosis dating back to the introduction of PSA testing for prostate cancer screening in the 1990s. As a result, too many men underwent unnecessary, aggressive treatment with the potential for adverse effects. Those of us with insignificant low-risk prostate cancer were being overdiagnosed and overtreated. (Also, ironically, many aggressive cancers were undertreated due to inaccurate risk profiling.)

AS helped pull me back from the abyss of treatment. Now some critics wonder whether too many of us low-risk patients are being put on AS unnecessarily. (Check out “Down the rabbit hole with AS.”)

Today, the goal should be not unnecessarily diagnosing low-risk prostate cancer, which carries risks for emotional distress--Anxious Surveillance and SCANxiety--and financial toxicity, including insurance and job discrimination.

There is a movement among prostate cancer experts, led by Eggener and Dr. Matt Cooperberg, of UCSF, among others, to rename Gleason 6 (Grade Group 1) as a noncancer. Check out our article, “Low-Grade Prostate Cancer: Time to Stop Calling It Cancer.”

But even better would be able to separate the sheep from the wolves and not diagnose Gleason 6 to begin with.

(Note: This post is dedicated to the late Hunter S. Thompson, father of ‘gonzo journalism,’ a style of journalism without claims of objectivity, often including the reporter as part of the story using a first-person narrative. Thompson wrote “Fear and Loathing in America” and “Fear Loathing in Las Vegas.” This article fits the subjective gonzo brand. HW.)

Please answer a survey on genetic testing and PCa

At the end of July, I will be moderating a program for ASPI on the importance of genetic testing for prostate cancer patients. Can you respond to this survey: https://forms.gle/Uv9d5gaZYHadZ5Qh9—Howard Wolinsky

Read my article in Prostate Cores on the folly of robotic surgery & global health inequities

By Howard Wolinsky

I’ve been getting good reviews on my article on the first remote, transcontinental robotic surgery: Record set on remote robotic prostatectomy—Florida to Angola, Africa. 'Health equity breakthrough?' Or just another notch for tech? Let's get real.”

A famed Florida-based urologist set a new world record on performing remote robotic removal of the prostate on a patient 7,000 miles away.

Dr. Vip Patel and his hospital claimed humanitarian motives for performing the surgery. Yeah, like robotic surgery costing tens of thousands of dollars is going to solve health equity issues in Angola, where average annual income is about $2,000, or anywhere else in the Third World.

Early reviews are boffo in the BO as Variety used to say.

Ben Nathanson, of the Substack Progessions A deep look at prostate cancer, said: “Howard, I loved your no-bullshit take on the supposed potential of telesurgery to transform the world.”

Barry Siegel, ND, a fellow patient and a retired Florida physician, said: “This was a brilliant editorial piece expressing the broader problem of real inequities that exist in the health care system where health care dollars are being stripped from the weakest of us (eg: defunding of USAID, defunding of global HIV programs, loss of rural Hospitals, decreased in care for veterans, change in childhood immunizations schedules etc.) in favor of the “Industrial” Medical Complex. Appreciate your dedicated pursuit of “Active Surveillance” but more broadly your views on inequities that exist in our society.”

Let me know what you think.

Still time register for Saturday webinar to learn how to read a pathology slide and report

By Howard Wolinsky

The next webinar from Active Surveillance Patients International will cover the problems with patients understanding pathology reports and even Gleason scores—and what can be done about it.

Cathryn J. Lapedis, MD, MPH, a Clinical Assistant Professor of Pathology at Michigan Medicine in Ann Arbor, will be the featured speaker at the ASPI webinar from noon to 1:30 p.m. on Saturday, June 28.

Please register for the meeting here.

Me and My High Grade PIN

By Howard Wolinsky

Cancer was not even mentioned after my first transrectal biopsy in 2010 as my PSA was rising. But the Big C was on the mind of the pathologists and urologists involved in my care.

Second opinion guru Jonathan Epstein, then of Johns Hopkins, put me on track to Active Surveillance in 2010 after examining my first biopsy under the microscope.

He didn’t find any cancer, Gleason 6 or otherwise, when he reviewed my case then.

Instead, he found a High Grade PIN.

Microscopically, HGPIN “shows enlarged, crowded cells with prominent nucleoli.”

High Grade PIN was considered at the time a precursor to prostate cancer.

.Epstein and other pathologists no longer consider HGPIBN threatening. It’s just part of the cellular landscape, a feature to be noted on the record.

I asked Dr. Epstein about his view now. See his response below. He told me he thinks the words “High Grade,” suggesting a serious problem, should be dropped.

Epstein to pathologists: Let’s stop fussing about High Grade PINS—and drop the words ‘High Grade’

By Jonathan Epstein, MD

HGPIN (High-Grade Prostatic Intraepithelial Neoplasia ) has fallen out of favor as a result of two factors.

Prior to extended (12-core) biopsies, a 6-core biopsy showing HGPIN often undersampled adjacent cancer so there was a 50% chance of cancer being found on repeat biopsy following a dx of HGPIN.

Now with better sampling, if there is cancer next to HGPIN, the cancer will typically be found on the initial biopsy.

The second reason is due to AS. If there is HGPIN only on extended biopsy there is a lower risk of cancer being present for the reasons above, but also if cancer is found it is typically Grade Group 1 and will be treated by AS so not a much an impetus to try to find the cancer with repeat biopsy.

If there is multifocal HGPN the risk of cancer on repeat biopsy is about the same as that following an ASAP diagnosis, and whether to rebiopsy is a judgement call.

I think we should also change the name of HGPIN to just PIN. The "high grade" before PIN can confuse some patients that this is a high grade worrisome lesion, as typically "high grade" is used to describe high grade invasive prostate cancer. Also, as we no longer diagnose "low grade PIN" if we just used the term PIN, it would be understood that we are referring to what we currently call HGPIN.

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NCCN offers help with newly digitized guidelines for PCa

The National Cancer Comprehensive Network has launched its new NCCN Guidelines Navigator, digitized version of its widely used guidelines. The first draft focuses on prostate cancer, the most common cancer in AMerican men. Other digitized guidelines will follow soon for colon and rectal cancers.

The idea is to simplify searches and navigation of NCCN guidelines, which are used by 90% of cancer experts.

You can access the Navigator by creating a free NCCN account or logging into your existing account: NCCN.org/login

NCCN says the new Navigator helps users:

• Move seamlessly through the Guideline using the table of contents or search features

• Select answers in nodes to highlight relevant Guidelines pathways

• Improve navigation. Sections of the Guidelines are color-coded and linked, allowing users to directly navigate to that section

• Select the Clear button to reset and clear any selected answers

• Easily view related footnotes

• Type prompts which the search function will auto-complete and select filters to highlight content of interest

• Access the related NCCN Chemotherapy Order Templates (NCCN Templates^®) via the ID number. NCCN Templates^® can only be accessed by subscribed users.

• Zoom out to see the whole algorithm

• View a tutorial and FAQ when needed

Here’s a direct link to all of the versions of the clinical guidelines for prostate cancer, including the new NCCN Guidelines Navigator version: https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1459.

Separately, there are also the NCCN Guidelines for Patients – which put the same information into more lay friendly terms. The prostate cancer guidelines are separated into two books: Prostate Cancer: Early Stage and Prostate Cancer: Advanced Stage.

These are also free – and no registration required to access.