'Cave Men' small groups on Active Surveillance growing: Why not join us?

Don't miss the ASPI webinar on biomarkers on Saturday. See below.

By Howard Wolinsky

My friend Thrainn Thorvaldsson, a retired businessman and a recent widower, is a visionary and a natural-born organizer.

Back in February 2017, he read about how I took on the urologic establishment at a major medical meeting, criticizing prostate experts for not listening to their patients. It was supposed to be an honor to attend as the first patient to speak to about 2,000 experts at the American Society of Clinical Oncology’s Genitourinary Congress.

Instead, it was a bit of a disaster—one that changed my life.

I was on the stage on Orlando with some of the most famous researchers in the Active Surveillance world, among them Drs. Laurence Klotz, of the University of Toronto, a pioneer who named AS, and Freddie Hamdie, who co-led the ProtecT trial that proved the safety of AS.

But the moderator blew it and didn’t call on me as we had planned. It dawned on me as I sowly realized I was being forgotten. Time was running out and I could be squandering a major opportunity to speak directly to thusands of doctors and nurses involved in prostate cancer care, I was going to be the first prostate cancer patient to address them, and I was on Active Surveillance, which moving into mainstream urology rather than being just an academic exercise.

I needed to take action as the meeting was winding down. I finally grabbed the mic.

I threw away my speech and went on a seven-minute impromptu rant on what was wrong with this picture, how they had invited me to make a bit of history and then forgot me.

I wrote about it in an article in my blog in MedPage: “A Patient's Journey: The First That Was Almost Forgotten— Invited to tell his story to a gathering of prostate cancer specialists, Howard Wolinsky had to elbow his way to the mic.”

The experience led to my switching identities from being a journalist with PC covering low-risk prostate cancer to a journalist-advocate for AS.

Thrainn heard about my speech in farway Iceland. He was on AS and had started started the first known support group for men on AS anywhere in the world.

I was teaching medical journalism at the time at the storied grad school of Northwestern University’s Medill School of Journalism after a nearly 30-year career as medical writer/editor for the Chicago Sun-Times.

Thrainn tracked me down and wrote me an email and the next thing you know we were talking about forming the first international support group for AS and holding a meeting in Iceland. (I always wanted to go there anyway.) The in-person meeting never happened, and thanks to the emergence of apps like Zoom, it may never happen.

But with the help of Mark Lichty and Gene Slattery and Bill Manning, we launched Active Surveillance Patients International. Our contribution was support and education of men with low-risk prostate cancer, the largest subgroup of men diagnosed with prostate cancer, one that largely had been ignored up until that point.

Most attendees of our meetings (see below) hail from North America. But we’ve had participants in our large meeetings—typically featuring top researchers—from nearly 70 countries. They come from Russia, Cuba, Pakistan, India, U.K., Honduras, Panama, Brazil, Singapore, Australia, Morocco, Lebannon, Italy, Germany, Belgium.

Typically, 400 or more AS patients and AS-curious patients register for meetings--with about 200 showing up on Zoom.

Thrainn observed that these large groups help patients but do not foster personal connections.

(Thrainn Thorvaldsson, our fearless leader and AS visionary.)

So not long ago, he started a group he calls Cave Men. I have participated from the beginning. Maybe 9 or 10 of us are involved. Seems to be the ideal size for a 1 1/2-hour meeting,

We’re not Neanderthals—though my testing with 23andme shows I have some (2%) Neanderthal genes. We don’t sit around and burp and scratch ourselves. Well, not a lot anyway.

But we share our cancer journeys and get to know each other. We have no speakers though Thrainn has roped me into giving short presentations from breaking news.

The groups have been successful with an international gathering of Cave Men from U.S., Canada, Iceland, Ireland, U.K., and Russia.

English is our lingua franca. But as we grow and organize new groups, that can change.

Thrainn is now expanding Cave Men by creating other groups of 8-10 members. If you’re interested, contact him directly: tthorvaldsson@aspatients.org. We’re holding organizing meetings soon and may create groups based on whether they are Gleason 6 or 3+4, age, geography. We’re finding our way—with your help.

I should let you know, too, that I am working with Charles Brown III and his best friend Keith Day (AKA “Snoopy”) to launch a group I call Chicago Area Active Surveillors.

We just held our first in-person organizing meeting in a vegan restaurant in a swank burb. Ten showed up. We have 20 men on our list. Alex Scholz, the CEO of Prostate Cancer Patients International, showed up on Zoom and gave a short spiel.

It was a hit. There was great camarade as we chowed down on mushroom broth or maybe vegetable terriyaki as men told their stories and swapped tips about local physicians, nutritionists, trainers, and more.

We’re already making plans for our next meeting this summer.

If you’re interested, contact me at howard.wolinsky@gmail.com We plan to meet quarterly.

Thrainn’s announcement on Cave Men:

CAVE MEN

Dear ASPI Member,

Over the years, ASPI has brought you well-prepared, insightful, and highly informative presentations. These monthly lectures have attracted up to 200 attendees, including a growing international audience. While these lectures provide invaluable education, they have one limitation – they do not foster personal connections or allow everyone the opportunity to express themselves.

To address this, we introduced Cave Men, an initiative designed to create small, supportive discussion groups for men dealing with the challenges of PC and AS. In my nearly 20 years of working with PC men in Iceland, I have witnessed a deep need for a space where men can talk openly, share experiences, and support one another. Cave Men groups—each consisting of 10 to 15 members—offer a unique opportunity for meaningful conversations in a confidential setting.

Our vision for Cave Men remains strong:

• A safe and supportive environment where men can discuss difficult issues such as PC and AS.

• A place to share news, articles, and personal stories that matter to our members.

• An international network that connects members across different countries, forming lasting friendships.

Although our Cave Men group has seen fluctuations in size, we believe there are many men within ASPI who would greatly benefit from and appreciate being part of a discussion group like this. We just need to find them! More importantly, we need torchbearers—leaders who are willing to take initiative and help build these groups into a thriving support network.

How You Can Get Involved

We are currently seeking:

Participants – If you are interested in joining a Cave Men group, we welcome you!

Leaders – If you are willing to take the lead and organize meetings, we need your leadership to bring these groups to life.

Cave Men groups meet four times a year (September, November, February, and April), providing a structured yet flexible format for members to engage in meaningful discussions. The meetings last one and a half hour.

If you are interested in joining or leading a Cave Men group, please reach out to me directly at tthorvaldsson@aspatients.org.

Being over 80 years old, I recognize the importance of passing the torch to the next generation of ASPI members who can carry this initiative forward. Your participation and leadership will shape the future of Cave Men and make a lasting impact in the lives of many.

I look forward to hearing from you and working together to build a strong, supportive community.

Best ASPI wishes and greetings,

Thrainn Thorvaldsson
ASPI Board Member
Iceland
tthorvaldsson@aspatients.org

Reach out about the Cave Men

Still time to register for ASPI’s program on biomarkers tomorrow

More than 400 of you have signed up for the next webinar this Saturday by Active Surveillance Patients International.

We have room for more.

Here’s the deets:

Hosted by Active Surveillance Patients International (ASPI)

—Saturday, March 29, 2025 | 12:00–1:30 PM ET

—Featuring Dr. Jonathan Tward (University of Utah), a global biomarker expert

—Register here: https://zoom.us/meeting/register/wsESZAXeR8Shp7FU60FHvg

—Submit questions: contactus@aspatients.org

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