Celebrating 13 years of prostate cancer monitoring: My pros-mitzvah--'Today, I am a Gleason 6'

My adventure in Cancer-land started on Pearl Harbor Rememberance Day 2010

By Howard Wolinsky

Sixty-three years ago last September, I celebrated my bar mitzvah, the transition from boyhood to adulthood in the Jewish tradition. The words “bar mitzvah” are in Aramaic—the holy dialect of Hebrew— and mean “son of the commandment.”

I had all the rights and obligations of a Jewish adult, including the commandments of the Torah. How I managed that responsibility—or didn’t— is a story for another day.

The joke back then was: “Today, I am a fountain pen.”— a tangled version of “Today, I am a man”—when you were showered with gifts, including, I suppose, loads of fountain pens.

Flash forward to December 2010. I was 63, a half-century past my bar mitzvah. I reached another mark of manhood—a diagnosis of prostate cancer.

On Pearl Harbor Remembrance Day, I was presented with the diagnosis of prostate cancer, escaped the clutches of a urologic surgeon deadset on “curing” my so-called cancer—one I didn’t need—with a radical prostatectomy. Afterward, a UChicago urologic oncologist rescued me and enrolled me in his Active Surveillance (AS) program. The rest is AS history.

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On Friday, December 3, 2010,  I had my hands full. I was coping with the aftermath of firing a general contractor on an extensive home remodeling project. I had never terminated anyone and was trying to figure out my next steps.

I was lost in worry and anxiety that evening when suddenly things got worse.

My caller ID lit up with the name and phone number of a local urologist.

I was caught off guard but should’ve been. Two days earlier, I had a prostate biopsy in the urologist’s office, a follow-up to an inconclusive biopsy on June 15 that suggested I had a precursor to prostate cancer (It was a high-grade PIN that today pathologists don’t take seriously. It had led to Dr. Jonathan Epstein, the famed uropathologist, suggesting in a second opinion that I undergo a follow-up biopsy in December. Ever compliant, I followed Epstein’s orders.

My PSA still was below 4, but my internist had a hair-trigger and sent me into the maw of the prostate cancer machine. I think it was just a matter of bad luck about what happened next.

The somber urologist, the voice of gloom and doom, told me over the phone: “You have prostate cancer.” He didn’t say I had microscopic low-risk Gleason 6 prostate cancer in a single core. I know now that at worst I had prostate cancer lite but, probably like most of you I heard a single word: “CANCER.”

(Left: My 2010 biopsy results. I must have been having a bad prostate day. This was the first and only time in 13 years that a Gleason 6 cancer was diagnosed. Right: My bar mitzvah photo in 1960. Bottom: My pros-mitzvah photo in 2010 as a Chicago journo and adjunct professor at Medill School of Journalism at Northwestern U. Go Cats. (Rich Chapman)

“Can you meet me in my office next Tuesday?” said the urologist.

I had done my homework. On the following Monday, December 6, I set into motion a second opinion from Dr. Scott Eggener, a pioneering urologist who advocated the then little-used Active Surveillance.

This management strategy at UChicago then entailed careful monitoring of the cancer with prostate-specific antigen (PSA) blood levels every three months or so and annual transrectal biopsies as an alternative to aggressive radical prostatectomies or radiation therapy. This approach helped patients avoid unnecessary treatment and saved us from risks of such side effects as urinary incontinence and erectile dysfunction.

Eggener advised I see Dr. R.P. first and hear him out.

So my wife Judi, my constant companion and rock throughout this process, and I visited Dr. R.P. on December 7, Pearl Harbor Remembrance Day, commemorating the day in 1944 when Imperial Japan caught America off guard and bombed the U.S. Pacific Fleet and prompted the entry of the U.S. into World War II.

I’m not drawing any parallels to Pearl Harbor in my encounter with Dr. R.P., just noting this date for the record.

Dr. R.P. showed us a video that outlined a half dozen or so options, including radical prostatectomy (RP), cryotherapy, and various flavors of radiation. He had done the voiceover on the recording and was very proud of his production.

He brought us into his windowless consultation room.

Bottom line? He gave me the good news, bad news spiel so many of us have heard: “The bad news is you have cancer. The good news is I have a cure. I have an opening in my OR next Tuesday.”

He never mentioned that I had a low-risk Gleason 6 cancer, with which I could co-exist maybe for the rest of my life. He was doing a hard sell for RP, glossing over the potential side effects.

Many Baby Boomers like me, sons of the Greatest Generation, have been diagnosed with low-risk prostate cancer, and shockingly, the vast majority (90-94% in 2010) marched in lockstep to the OR and accepted the risks of surgery, then the preferred treatment. Back in the day, many of us Boomers questioned authority in general along with the Vietnam War and the Nixon Administration. However, we typically didn’t question this surgery from urologists leading us like lambs to the slaughter.

It’s shocking.

We were easy marks for seemingly well-meaning urologists who wanted to “save” our lives. No doubt, some lives were saved. But many other men were overdiagnosed and overtreated. They still are to this day in the United States,

I asked Dr. R.P. his thoughts about Active Surveillance. He looked shocked that I was asking.

“I don’t support that modality,” the urologist said.

I don’t mean to make R.P. out to be a monster, rology’s own Dr. Mengele. Unfortunately, he was a typical practitioner back then. He was like the carpenter who thought his hammer (a radical prostatectomy) solved all problems.

I just interviewed a veteran urologic oncologist, Dr. R.H., on another issue. He spoke in disbelief at his memories of “the carnage” in which he participated a decade ago. “When I look back, that’s what we [urologists] all did back 10, 15,20 years ago, I cringe a little bit. But with that said, that's the way medicine and science evolve, right? We get more sophisticated. We get more understanding. We understand that some of the things -- we evolve.

He seemed haunted like the renegade Special Forces officer in Cambodia, Col. Kurtz (Marlon Brando), in the film classic, “Apocalypse Now” as he expressed his dying words: “The horror. The horror."

(Dr. R.H., apparently experiencing post-prostatectomy stress syndrome, said he would not now perform a radical on patients like me with a single core of Gleason 6. And for the record, Dr. R.P. now offers AS as an option. Times change thanks to patient pressure and the evolution of care with persuasive research that got many urologists off the surgery-cures-all bandwagon.)

On December 14, which I consider my pros-mitzvah anniversary, I saw Eggener, a visionary, who he said he considered me the “poster boy for AS.” He predicted that my cancer would likely not grow in the next decade.

(See: statnews.com/2022/01/11/active-surveillance-for-prostate-cancer-the-gift-that-keeps-on-giving/)

Well, the story turned out even better. Not only did the cancer not grow, but it has never been seen since. My PSA stabilized to about 4.8-5.2, and I have remained on AS. I am even have been toying, at age 76, with the idea of hopping off the AS Express.

My encounter with Eggener changed my life.

When I realized that my generation was being led into unnecessary treatment with potentially serious side effects, I, like the Hulk, was angered and transformed, in my case, from being a medical journalist on a major metropolitan newspaper into a patient advocate and activist for AS. I didn’t want to see men kept in the dark about all their options, including AS, or being pushed into unnecessary aggressive surgery.

How has my pros-mitzvah impacted my life? I could write an AS resume:

—Co-founded support and education groups for men on AS: Active Surveillance Patients International (ASPI) and AnCan’s Virtual Support Group for AS

—Witnessed and encouraged AS uptake with growth to 60% from 6-10% in 2010. BTW, that’s still too low compared with 90%+ in Sweden, the UK, and Michigan).

—Been involved in research with Eggener and other top medical scientists.

—Co-authored articles in major medical journals, including the Journal of Clinical Oncology and European Urology Oncology, written letters in the Journal of the National Cancer Institute and other publications, and co-led patient research presented at the American Society for Clinical Oncology.

— Working on a graduate degree in public health at the University of Illinois Chicago School of Public Health to up my game as a researcher.

—Started TheActiveSurveillor newsletter two years ago. I have almost 1,200 subscriptions. Most are free.

—Since 2016 have written about prostate cancer in“A Patient’s Journey” blog for MedPage Today and more recently news articles for Medscape.

—Won a patient advocacy award this September from the Prostate Cancer Research Institute.

Last week, I thanked Eggener for supporting me and others like me over the years in his practice and research and congratulated him for winning a mid-career award from the American Urological Association. He responded: “Thanks, Howard, kind of you … So happy for you; it’s worked out so well for so long .. and so many people have benefited from your advocacy and passion.”

I have observed an evolution in urologists’ attitudes over the past 13 years, including the grey eminence William Catalona, MD, the Northwestern researcher and urology lion, who led the charge against AS.

In 2013, Catalona told me I had made a huge mistake in going on AS and that I needed to get surgery like yesterday. He has modified his views since then, and, in his own fashion, is an AS supporter and researcher.

On my 10th anniversary since embarking on AS, Catalona told me his original analysis of my case was “the only mistake I ever made.” (I think he was kidding.)

Recently, I interviewed him on an unrelated topic. He bluntly informed me that he thinks my experience with very a low-risk case of Gleason 6 has colored my views on prostate cancer issues.

“One of the difficulties, I always have in dealing with you, Howard, is that you are one of the lucky ones. So your perspective is you're somebody who has been a success of active surveillance. So you are biased in the way you look at this.”

I don’t disagree about my being lucky. But I don’t think I am biased.

I support patients being presented with all their choices—which they may not be, even now—and don’t oppose patients undergoing treatment if that’s what they need. I have supported many men who ultimately were treated.

I reminded Catalona that I am careful to be balanced and that I mention in my writing that my experience may not apply to anyone else’s. I have been lucky in many ways, but also think that if I had a rising PSA today, I would never have been diagnosed and put on AS.

Over these past 13 years, I have been privileged to meet many of my fellow lower-risk patients and also many of the top researchers and clinicians in the prostate cancer world, who are patient advocates.

At this point, I am still debating whether I will stay on AS since all has been quiet on the prostate front for years. My chances of developing advanced prostate cancer are between one and zero percent.

I will decide sometime in 2024 whether I want to get off the AS train.

Or maybe. I’ll stay on board and set my sights two years from now, at age 78, to celebrate my quince-prosteañero?

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Meanwhile, what gift do you get for a pros-mitzvah “boy”? A fountain pen? I’d suggest a paid subscription to TheActiveSurveillor.com

Breaking news: New column coming on genomics and Active Surveillance

TheActiveSurveillor.com is proud to announce that Udit Singhal, MD, will be writing a new column on active surveillance and genomics.

Singhal is one of the up-and-comers in this field: He’s a postdoctoral fellow in urologic oncology at the Mayo Clinic and soon will join the faculty at the University of Michigan. (Go Blue!) He has a young investigator grant to leverage artificial intelligence to optimize active surveillance and genetic testing with localized prostate cancer. 

He says: “My goal is to improve the integration of genomics into randomized clinical trials in oncology and to rigorously assess the generalizability of randomized evidence at large.”  

Dr. Singhal’s column is the sixth in TheActiveSurveillor.com line-up. The sixth batter in baseball usually is someone who makes good contact at the plate. But since I have an all-star team, I think Dr. S. holds his own as a power hitter.

Send your questions about AS and urology, radiology, pathology, sexual health, lifestyle, and now genomics via email to mailto:pros8canswers@gmail.com

Keep the questions short and sweet. They should be of general interest. Sign with your real name, or just initials, tell me where you live, how long you‘ve been on AS, how it’s going for you. Share a whimsical signature if you’re so inclined.

Note from a reader

“Howard, Thank you so much for shining light into the dark corners of PCa diagnosis and treatment.”—Gary Chirlin, Rockville, Maryland.

Sign up NOW for myZERO AS support group in March 2024

By Howard Wolinsky

For the past three years, I have run a special Active Surveillance support group for ZERO. Last year, our virtual support meeting drew 60 patients to talk about AS. It was by far the biggest session of any at the annual ZERO Summit.

Why not plan ahead and sign up for the program at 11 a.m. Eastern on March 12, 2024?

Register in advance for this meeting:
https://us02web.zoom.us/meeting/register/tZUsfuqgrjIoG9AWf7voMhzT_UjdqbQQbQPA