My 36 minutes, 9 seconds of AS fame--Down Under on GU Cast Urology Podcast

TheActiveSurveillor meets Drs. Murphy & Eapen on their popular urology podcast

By Howard Wolinsky

Drs. Declan Murphy and Renu Eapen are top urologists in Melbourne, Australia. They also do the the popular GU Cast Urology Podcast.

They talk to top urologists on topics close to my, er, prostate and yours—Active Surveillance, transperineal biopsies, redefining Gleason 6, new diagnostic approaches, treatment, etc. They cover the whole nine yards of our favorite (and so often troubled) male gland.

I was honored to be invited to talk about my role as an activist and advocate and my newsletter, TheActiveSurveillor.com.

Check this out: https://www.gucast.org/episodes/we-meet-the-active-surveillor-howard-wolinsky

Renu and Declan, prostate experts at Peter MacCallum Cancer Centre, were gracious hosts. We could have gone on for hours. But they called into surgery and had to head out. And do we really want to talk about this for hours?

So I got my 36 minutes and 9 seconds of fame. Thanks, Declan and Renu.

We covered my “origin story,” transfomation from being a mild-mannered medical journalist on a major Chicago metro daily into a patient activist/advocate angered about how we patients with low-risk prostate cancer were being overdiagnosed and overtreated for something a growing number of experts don’t think should be called a cancer.

I knew about the global campaign tun by Dr. Murphy and other leading urologists to eliminate transrectal biopsies. Their group is called TREXIT (Transrectal Exit, punning on BREXIT), and it calls for an end to germy, transrectal biopsies and their risks of deadly sepsis and other infections and replacing them with transperineal biopsies.

TREXIT made its case in Nature: https://www.nature.com/articles/s41391-020-0204-8 in 2020.

They’ve had great success in Europe and Australia in making transperineal biopsies the #1 choice in urology guidelines.

As a patient, I made common cause with TREXIT. But we’re still waiting for success in the United States, where we have garnered no support from the Americsn Urological Association (AUA), which demands definitive proof of the benefits of transperineal biopsies that avoid the rectum before changing its guidelines. Currently, TP and TR are on equal footing in the U.S based on a policy adopted in 2023. Meanwhile, men are dying from prostate biopsies.

AUA’s European and Aussie cousins, the European Association of Urology, adopted a guideline in 2021 that supported transperineal biopsies over transrectals.

Check out https://ancan.org/transperineal-prostate-biopsies/ and https://www.medscape.com/viewarticle/991496 to learn more about this ongoing debate. Meanwhile, American patients remain at risk for sepsis while doctors argue about P-values, statistical significance and study designs.

Declan and Renu picked up on my story of being invited in 2016 as the first patient to talk to the American Society for Clinical Oncology—only to be forgotten on the stage with all the famous prostate experts.

I had to grab the microphone to chastise the 2,500 or so prostate cancer audience members: What’s wrong with this picture? Doctors often don’t listen! to patients I ranted for seven minutes. Until that moment, I didn’t know I could rant at all.

This led to the formation of Active Surveillance Patients International, the first global education and support group for AS patients. Here’s my story.

(That was in 2017. Seven years later, I came back for a victory lap at ASCO. ASCO accepted a paper on which I was the lead author for AnCan, ASPI and other patient groups on a study of patient views on redefining low-risk prostate cancer as a non-cancer. Check it out.)

Here’s the pitch for my appearance on GU Cast: Jul 16, 2024 GU Cast | Urology Podcast

There are patient advocates and there are patient advocates, and then there is Howard Wolinsky! We chat with the inimitable Howard, medical journalist and very long-time active surveillance patient, about his varied interests in low-risk prostate cancer and prostate cancer diagnostics. He runs a great substack called The Active Surveillor with a regular newsletter which we devour every week! l His current interests are in the abolition of transrectal prostate biopsy and the campaign to re-name grade group 1/Gleason 6 cancer as a non-cancer. We chat about all this and more, including that unforgettable appearance he made at the ASCO GU Plenary session! Also available as an audio podcast - just search GU Cast wherever you get your podcasts.

Thanks again to Renu and Declan for carrying the torch for AS, transperineal biopsies, and truth, justice and for inviting me on the GU Cast. I had a great time.

(Crab nebula.)

A GU Cast fan, Doctornebula comments. (P.S. I think Dr. Nebula is a gift to the universe.)

Jason and Cash Dummy accidents got him and, in the end, so did Prostate Cancer

By Howard Wolinsky

Whitney Rydbeck, the actor best known for his role in the 1980 “Friday the 13th Part VI: Jason Lives,” died from complications of prostate cancer at the age of 79 on July 15 while in hospice care in Chatsworth, California.

His close friend, Tommy McLoughlin, who directed the sixth “Friday the 13th” film, confirmed Rydbeck’s death to The Hollywood Reporter. He also shared a tribute to the late actor on Instagram.

Like Jason, Rydbeck and actor Tony Reitano also donned masks, not for a movie but to play the crash test dummies Larry and Vince, respectively. Because they didn’t strap in, they bounced around in car accidents and suffered lots of damage — while supplying researchers with data on how passengers can escape injury.

The slapstick series of ads, which debuted in 1985, closed with the line, “You Could Learn a Lot From a Dummy.”

In the sixth Friday the 13th film, released in 1986, Rydbeck played the nerdy Roy, who while wearing protective goggles over his regular glasses, encounters Jason during a corporate paintball game. He tries to run away, but he’s doomed.

Rydbeck appeared in dozens of TV shows, including The Brady Bunch, Phyllis, M*A*S*H, Cagney & Lacey, Highway to Heaven, Star Trek: The Next Generation, Sisters, Living Single, Party of Five and Scrubs.

Rydbeck joked that he worried that one day a newspaper would carry the headline, “Actor Who Played Crash Dummy Died for Not Buckling Up.”

“I always buckle up, I’ll tell you that,” he said

Please share your opinions on an online survey on AI and urology

Peter Evancho, an attorney and second-year medical student at the University of Maryland, Baltimore, is conducting a policy analysis about AI and urology and is asking for our help.

Can you take a few minutes and answer Evancho’s survey and share your thoughts about AI and urology care?

Here’s what Evancho has to say about himself and his survey:

“My name is Peter Evancho, and I am a second-year medical student at the University of Maryland School of Medicine. In conjunction with the Department of Surgery and the Division of Urology at the University of Maryland Medical Center and Principal Investigator Minhaj Siddiqui, MD, I am conducting a short survey to examine the the integration of artificial intelligence (AI) into urologic practice and understand both its promising advancements and the substantial ethical, legal, and regulatory challenges it poses. Your insights are crucial, and the survey is designed to be completely anonymous. Participation is voluntary.”

Survey Link: https://rs.igs.umaryland.edu/surveys/?s=3R37KJMPERYEWMH9

The survey will remain open until September 1, 2024. The University of Maryland, Baltimore’s Institutional Review Board has approved this study under HP-00109759

Webinar on 2nd opinions. My opinion? I’m going, why not join us?

By Howard Wolinsky

Active Surveillance Patients International (ASPI) is holding a patient webinar at noon EST on Saturday, July 27, called “In our opinion, get a second opinion.” Register here: https://zoom.us/meeting/register/tJUkdOqpqT0iGNHcOP4sfLoiIsdIp-nLwbUS

Four patients will share their experiences with prostate cancer and how second opinions—or their absence—had a huge impact on a patient’s fate.

I will be on the panel along with my Chicago area friends, retired attorney Jim Schraidt, a former ASPI board member and current ZERO board member, who like me was diagnosed in 2010 but went on a different path that transformed him into patient advocate supreme for Active Surveillance, and newly diagnosed PCa patients Charles Brown III and Keith Day, whose second opinions saved them from the robo knife and the raygun.

ZERO—and I—need your help in Congress funding CDC on PCa issues

By Howard Wolinsky

The House Appropriations Committee has made significant cuts for Fiscal Year 2025 to the Centers for Disease Control and Prevention (CDC), nearly a quarter of its funding. 
Among other things, the CDC supports a number of prostate cancer projects, including outreach into high-risk communities and support for state and local prostate cancer programs, all of which are at-risk for large cuts.

I have some skin in the game. I helped win a $1 million grant from CDC—the first of its kind on minorities—to study opinions about Gleason 6 (Grade Group 1) in African American and Hispanic men. Speak up for my project—probably the biggest study on AS in minority funded by the U.S. government. Use your AS superpowers and let your Senators know about this. (I’ve done it already myself.)

Zero said: “Your elected officials need to hear from you - these programs are critical for improving prostate cancer outcomes and saving lives.

”The Senate is next to weigh in on funding for CDC. We can help protect prostate cancer funding by telling Senators that cuts would be devastating for our community.”

Please check in here: https://p2a.co/15HnJhg