By Howard Wolinsky

Nearly 400 people from nearly 20 countries registered for the ASPI-AnCan & Co. webinar today on the future of active surveillance.

As usual, about half showed up. The rest and more will view the video. I give you the link when I have it.

Leading doctors and advocates attended the meeting, and we had excellent questions from the audience and great exchanges between patients, advocates, clinicians, and researchers.

We suspect that this sort of meeting was a first in low-riskprostate cancer patient advocacy.

When we founded Active Surveillance Patients International five years ago, we naively tried to have a meeting like this in Iceland and failed.

We accomplished more on the internet today than we could have in Reykjavík.

This was the fruition of our dream in 2017.

Likewise, Mike Scott, founder of Prostate Cancer International and a longtime booster for AS, was finally able to share the results that he wanted in Reykjavík today through the work of Dr. Minhaj Siddiqui, of the University of Maryland.

As Thrainn Thorvaldsson, an ASPI co-founder from Iceland, said ASPI had achieved a new level today.

I’m a co-founder, too, and I’d go further and say that patient advocacy reached a new level at this unprecedented two-hour session with dialogue between patients and advocates and the world’s leaders in active surveillance, including Drs. Laurence Klotz, Chris Bangma, Ola Bratt, Timothy Wilt, Peter Albertsen, E. David Crawford plus Anthony Westphalen and Carissa Chu.

Too many to thank. You know who you are.

But thanks to researchers and moderators who kept things going: Dr, Minhaj Siddiqui, of UMaryland, and Dr. Caroline Moore, of University College London, principal investor for Movember, an endorser. Plus moderator and super-advocate Tony Crispino, president of Us Too in Vegas.

Panelists: Mark Lichty, co-founder of ASPI; Joe Gallo, repping AnCan and ASPI; Phil Segal, co-founder of Prostate Cancer Canada Support’s AS group; Anthony Henry, first VP of the Walnut Foundation in Toronto; Ira Kaget, facilitator and board member of Prostate Forum of Orange County; and Erik Briers, vice chairman of EUROPA UOMO. Let me know if I forgot you,

Special thanks to Richelle Greene up in Vancouver for trying to help me keep up with listing endorsers of the program.

ZERO promoted but did not formally endorse. Thanks ZEROites.

And the (Advanced) Prostate Cancer Foundation was MIA, as they usually are on AS. Their new CEO was invited but said he had other things to which he had to attend.

They’ll eventually come along. This is my personal comment as TheActiveSurveillor. When we first tried this, I met with PCF. They seemed interested. But basically they were just milking me for info. The research director in effect said: Lotsa luck. He added he’d be fired if he gave us any money.

Hence, my jaundiced view of the Foundation, which has done great things for the minority with advanced prostate cancer. I have asked them repeatedly how much of their budget is devoted to AS. I’m still waiting for an answer. Why do’’t you ask them?

A reporter from Medscape Medical News asked what I thought the take-home messages were. Personally, I was so focused on keeping things running behind the scenes, I missed a lot.

If you attended, please let me know your thoughts in the comments.

But my thoughts are:

—AS is very safe for patients with Gleason 6 though a few patients may have aggressive cancers hiding.

—Better ways are needed to stratify patients to allow them to remain off AS safely rather than just finding patients for AS.

—Ways need to be found, such as MRI and liquid biopsies, to keep patients off the biopsy treadmill and spare them from the mental and financial toxicity that drives patients to abandon AS prematurely.

We’ll have some meetings to mention soon. But I’m taking a break.