AS 2023 in Review: Dr. Epstein's mysterious disappearance, breakthrough grant for AS, celebs out of AS closet, emotional distress

By Howard Wolinsky

Fellow Surveillors, partners, advocates, and friends: Happy 2024. Here’s hoping for a healthy and productive year for all of us.

At TheActiveSurveillor.com, year’s end means a round-up of articles that appeared in TheActiveSurveillor.com. I did hundreds of stories like this in my 50-year career as a print and online journalist. It comes with the calendar, I’m afraid.

These are my top picks as editor-in-chief, publisher, and principal bottlewasher.

Here are my picks for 2023:

(Dr. Jonathan Epstein at his microscope at Hopkins.)

--The mysterious disappearance Dr. Epstein. Dr. Jonathan Epstein is probably the top uropathologist in the world—and then, poof, he was gone. TheActiveSurveillor.com broke the news in May on how he no longer was rendering second opinions and was on a leave of absence at Johns Hopkins. It took a Washington Post expose to reveal that Epstein allegedly had been charged with bullying his staff to support opinions by his pathologist wife. Epstein has denied all wrongdoing. Here’s hoping he returns to the scene in 2024. Check out “The Epstein affair: 'The elephant in the room'” https://open.substack.com/pub/howardwolinsky/p/the-epstein-affair-the-elephant-in?r=4ah4&utm_campaign=post&utm_medium=web

—The federal Centers for Disease Control, which considers prostate cancer a public health issue,  made a breakthrough in earmarking just over $1 million for a five-year study on attitudes of patients toward renaming Gleason 6 as a noncancer and other issues, “oversampling” too often ignored Black and Hispanic men.

CDC is refielding a survey I co-led that was presented at the American Society of Clinical Oncology Urinogental Congress meeting and published in the Journal of the National Cancer Institute. I was honored to help CDC leaders, including Ingrid Hall, PhD. prepare the proposal that required Congressional approval.

This is big because Congressional funding of prostate cancerr esearch is usually limited to a Department of Defense program focused on vets with advanced prostate cancer.

Stacy Loeb, MD, a urology and lifestyle medicine expert at NYU, and a columnist for this publication, said: “It is so rare to see funding opportunities related to active surveillance, so you should be very proud of making that happen! Congratulations on another victory of your advocacy to push forward the research on active surveillance!”

https://open.substack.com/pub/howardwolinsky/p/breaking-news-the-xmas-miracle-how?r=4ah4&utm_campaign=post&utm_medium=web

--Should Gleason 6 be redefined as a noncancer? Patients, urologists, and pathologists are divided. The debate continues. I’m on the side of redefining Gleason 6 as a noncancer to reduce anxiety levels and prevent financial toxicity, such as insurance and job discrimination. Many opponents worry that patients would abandon surveillance if Gleason 6 suddenly became a noncancer. In a patient-led survey, respondents in large numbers said if Gleason 6 suddenly were declared a noncancer, they would stick with AS. I was the lead author of the study, which was presented at the American Society of Clinical Oncology meeting. n

See: “If Gleason 6 were redefined as noncancer, only 5% of patients say they would quit surveillance; 82% would stick with program”

--Not-so benign neglect of mental distress in prostate cancer patients. TheActiveSurveillor.com has been pedal to the metal on how the American Urological Association has neglected the issue of whether to screen prostate cancer patients for emotional distress. An AUA leader explains why the organization, unlike most other groups, gives no priority and offers no guidelines for screening patients like us. “EXCLUSIVE! Read all about it: 'Deep Prostate' spills the beans on why AUA has no guideline for screening PCa patients for emotional distress” Check out: 

https://open.substack.com/pub/howardwolinsky/p/deep-prostate-spills-the-beans-on?r=4ah4&utm_campaign=post&utm_medium=web

—AS comes out of the closet. For some reason, celebs are very open about being diagnosed with advanced prostate cancer or undergoing radical prostatectomies. But when it comes to AS, they have been secretive. Was it an image issue? Bad PR? Insurance eligibility? The playbook started to change in 2023, and some of the stigma of AS was lifted. Actor Colin McFarlane led the way when he announced he was on AS. Top editor of People Magazine Jeremy Helgar went public, too, saying it was the scariest thing he did all year.

Seattle Mariners announcer Rick Rizzs announced he was on AS: https://mynorthwest.com/3909967/rick-rizzs-on-dangerous-atv-fall-cancer-diagnosis-its-been-a-heck-of-a-year/

So AS is getting there in terms of celebs being willing to speak out on their low-risk cancers. Maybe in 2024, some politician will have the cojones to announce loud and proud that he’s on AS. Not that I’m wishing a prostate cancer diagnosis on anyone. Just asking for politicians—many of whom are diagnosed with PCa— to tell the truth. I may be asking for too much.

-- U.S. biopsies lag. As of its annual meeting in Sweet Home Chicago in 2023, the American Urological Association now recognizes transperineal biopsies, which prevent the risk of deadly sepsis, as being on par with germy transrectal biopsies. But AUA still lags behind European urology’s pro-transperineal position. “Developing story: AUA put TR and TP biopsies on a par-- as Euro uros say no to TRectals.” AUA waits for definitive research to show the way while most men still face the risk of sepsis and other infections from transrectal biopsies.

https://open.substack.com/pub/howardwolinsky/p/aua-sticks-with-transrectal-biopsies?r=4ah4&utm_campaign=post&utm_medium=web

—In the ongoing Gleason 6 cancer vs. noncancer debate, the ever-puzzling (Advanced) Prostate Cancer Foundation doesn’t have a dog. I was stunned when I heard the leaders of PCF, which gives low priority to low-risk prostate cancer, broadcast at a major meeting that if Gleason 6 were redefined as a noncancer, its fund-raising efforts wouldn’t be hurt. Tone deaf again, Read it, and weep: “No worries, Jack. Renaming Gleason 6 as a noncancer won't hurt Big Cancer's pocketbook. Say what?”

--Lack of guidelines on whether patients 75 and above should stay on the AS Express. I outline my confusion about whether I—now 76 and healthy—should stay on AS after 13 years of all quiet on the prostate front. Experts and patients offered their views, with most suggesting that men like me stay the course and continue PSAs etc. A few doctors and patients suggested hopping off the AS train and walking into the sunset.

I’ll make up my mind sometime in 2024.

https://open.substack.com/pub/howardwolinsky/p/active-surveillor-readers-advise?r=4ah4&utm_campaign=post&utm_medium=web

--ASPI, AnCan, Prostate Cancer Support Canada, the Prostate Cancer Research Institute, The Walnut Foundation, and TheActiveSurveillor.com  launched a video series on the basics of AS, called Active Surveillance 101, featuring interviews with top AS experts by a patient with prostate cancer and his savvy spouse. Check it out: https://aspatients.org/a-s-101/

--Active Surveillance Patients International (ASPI) gave its Chodak Pioneer award to the University of Connecticut’s Dr. Peter Albertsen, who suffered slings and arrows for his pioneering research on AS. ASPI honored The MUSIC group in Michigan for its success in reaching a 90%-plus uptake of AS in the Mitten State compared with a 60% uptake in the U.S. overall. ASPI also recognized Thrainn Thorvalsson, co-founder (with me) of the organization. See: “Dr. UConn's Albertsen selected for Chodak Award for trailblazing AS research” The late Dr. Gerald Chodak is considered the “grandfather” of AS and was a personal friend of mine and ASPI’s first medical advisor.

https://open.substack.com/pub/howardwolinsky/p/uconns-albertsen-selected-for-chodak?r=4ah4&utm_campaign=post&utm_medium=web

The Prostate Cancer Research Institute honored me with its advocacy award.

--TheActiveSurveillor.com kicked off a series of Q&A columns by leading experts on surveillance and urology, radiology, pathology, lifestyle, sexual health, and DNA. Here’s a sample from Dr. Anne Katz: “Age is not a friend to the penis”

https://open.substack.com/pub/howardwolinsky/p/age-is-not-a-friend-to-the-penis?r=4ah4&utm_campaign=post&utm_medium=web

—My friend Phil The Surveillor kudos for this column: “The Big C: Why me? Why you? Why not? Existential questions in Prostate Cancer-land—My friend Phil gave me kudos on this column”:

If you have any favorite or meaningful columns, let me know at mailto:pros8canswers@gmail.com I’d like to hear from you.

—One of the most read columns in TheActiveSurveillor was a photo essay about my daily walks in the woods: “Prostate cancer patients and other wildlife along the road less traveled”

Sign up early: ZERO support group on AS in March

By Howard Wolinsky

Help me out, would you? Show some solidarity with me and other Active Surveillance patients.

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. By far, it was the biggest session of any at the annual ZERO Summit.

I’m hoping we can beat that record at 11 a.m. Eastern on March 12, 2024.

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