Happy 3rd anniversary to The Active Surveillor community: An annual report
Thanks to you all
By Howard Wolinsky
Happy Third Anniversary to Us, The Active Surveillor Community.
This is the 477th edition of The Active Surveillor newsletter. At the suggestion of my son David, I launched this newsletter on the Substack platform on February 6, 2022.
I started with an article promoting support groups. I helped start two support and education groups for patients with lower-risk prostate cancer who were on Active Surveillance who felt uncomfortable attending support groups that also worked with men with advanced prostate cancer. The low-risk patients feared they would automatically go through the agonies of advanced PCa. Ain’t necessarily so.
The Surveillor has covered the full spectrum of topics relating to lower-risk prostate cancer, from diet to exercise, from profiles on high-profile people with PCa to new treatments for BPH and campaigning to dump transrectal biopsies and to stop calling Gleason 6 a cancer.
I’ve been busy. I could do this as a daily newsletter. But I know that’s too much for you—and me.
David, an oral historian and author, told me I needed 1,000 readers to have my own “AS Army.” He said the newsletter would begin to have impact then. He was right.
I reached that point by September 9. 2023. I smile when I hear the newsletter referred to as “The Surveillor,” which makes me realize, to my surprise, it’s a real thing, not just something I decided to do that no one reads.
Now, I am at nearly 2,000 subscribers, 300 of whom are paid subscribers. The newsletter gets 40,000-50,000 impression per month.
The Surveillor now has about two battalions worth of readers, including patients with the full range of risk groups of prostate cancer—even though I focus on lower-risk PCa— and also a small unit of some of the top prostate cancer experts in the world.
It’s time-consuming to read ongoing research, answer your email and calls, organize webinars, work with researchers, interview KOLs —that’s Key Opinion Leaders such as Drs. Klotz and Carroll—and track public figures who have been diagnosed with prostate cancer.
I know a lot of people think information on the internet is free. But I can tell you a lot of blood, sweat and tears go into this small publication. Sweat anyway.
The Active Surveillor gets about a half million hits per year. It has a 55% open rate—and an 88% retention rate. This tells me the newsletter has found its target audience, and readers are loyal.
Some subscribers do quit for a variety of reasons, such as progression of their disease. But even some of those patients stick with The Surveillor.
I also have launched a companion monthly blog, Prostate Cores, providing abstracts on research on PCa, BPH, and other aspects of that finicky prostate gland.
This is essentially a one-person show. I apologize for typos. I know I am my own worst editor. But I can’t afford that kind of help. I’ve been trying to break even.
I learned this week that after first two years in the red, I finally am in the black. I made a couple thousand dollars above expenses.
Expenses. They’re necessary, but they are the bane of my publishing existence. I pay for transcripts to be done (I don’t trust robotic transcripts), overhead for bandwidth (Comcast/Xfinity charges up the wazoo), technology costs, fees collected by Substack, the publisher, and its financial pal, Stripe, etc.
There also are federal and Illinois taxes. Then, I discovered this week I may owe sales tax in several states and may have to file individual returns.
I suppose that’s the price of success but my accountant warned me that this potentially could be very costly. and would endanger my ability to keep the newsletter going. I might have to pay. a small amount in sales tax but pay a lot for preparing returns in multiple states and countries. Ugh.
I get a minimum of 2,000 hits per issue. The Surveillor even has gone viral on occasion with a couple of issues, including one on King Charles III and his still undisclosed cancer (not prostate) and the possibility of it being bladder cancer. The royal prostate was enlarged and treated and the cancer was found. More than 50,000 readers picked up on this news from this spot.
The newsletter brought you breaking news on all angles of Active Surveillance, including genomics, AI, diet, MRIs and other imaging, biopsies, biomarkers, and the culture of prostate cancer. I try to introduce some prostate humor and sarcasm.
Should I bring back my Gleasons prostate humor contest?
Check out the latest edition of my new Substack newsletter: Prostate Cores, abstracts of research.
The Active Surveillor has helped flush out of the PCa closet some high-profile people who would prefer to take the spotlight off their cancers, but who in my view, are adding to the unnecessary shame and secrecy that can go with even low-risk cancer diagnoses.
Dr. Francis Collins, former head of the National Institutes of Health, and former U.S. Department of Defense Secretary Lloyd Austin III have been among those with prostate cancer who came under The Surveillor’s scrutiny.
Austin has left the public eye, so we may have seen last of him. Collins is promoting his book and music therapy. So he may styill be in the public eye.
I follow an old Chicago journalism maxim: Afflict the comforable; comfot the afflicted.
Read my take on the Austin story.
More on Austin’s ProstateGate as the IG report came out days before the Biden Administration mustered out,
Read about how high-profile patients like Collins, who led the Human Genome Project, handle their PCa diagnoses, frightened low-risk AS patients.
On January 4, The Active Surveillor held its first webinar, “AS 2025: The Year In Review.” I’ve made the recording available now to all-comers at YouTube:
At the suggestion of readers, I also plan to hold “AS 2026: The Year In Review” webinar next year. I have my own franchise.
(If you have a paid subscription, thanks. You are helping keeping the newsletter afloat. If you have a free subscription, thanks, too, but please consider upgrading to a paid subscription C’mon, help me out.)
Is favorable intermediate-risk PCa the future of Active Surveillance? Come to the webinar.
Kevin Ginsburg, MD, urologic oncologist at the Karmanos Cancer Institute/Wayne State University in Detroit, will be presenting a webinar for Active Surveillance Patients International (ASPI) entitled “Is favorable intermediate-risk PCa the future of AS?"
The program will be held from —12-1:30 pm Eastern, Saturday, Feb. 22. Celebrate President George Washington’s birthday with ASPI.
To register, go to: https://aspatients.org/event/is-favorable-intermediate-risk-pca-the-future-of-as/
Ginsburg is J. Edson Pontes, M.D., Distinguished Endowed Chair in Men's Health at Wayne State and co-director of the MUSIC prostate program.
(Dr. Kevin Ginsburg, co-director of the very successful MUSIC program in Michigan.)
MUSIC (Michigan Urological Surgery Improvement Collaborative) has been one of the most successful U.S. programs for Active Surveillance. Over 90% of patients with low-risk prostate cancer in its program go on AS vs. 60% nationally. Likewise, MUSIC has been successful in offering AS to patients with favorable intermediate-risk prostate cancer at a rate of about 45% compared with 20% nationally.
In 2023, ASPI presented MUSIC with its first ASPI AS ADVOCACY AWARD for its advances in researching and promoting Active Surveillance for lower-risk patients in place of aggressive treatments.
Thanks, Steve.
Howard
Thanks, Fred.
That's the goal.
Howard.