By Howard Wolinsky
In January 2021, my son David, a fellow journalist, suggested that I check out a hot new newsletter publishing technology: Substack. (This article is on Substack.)
He said it was a fast and easy way to share the Active Surveillance story—or anything else.
He was right. I played with the software for about an hour and was ready to publish the first edition of TheActiveSurveillor.com.
Then, earlier this summer, while we walked in the woods, he informed me I needed to have 1,000 subscribers to move the needle for The Active Surveillor newsletter and AS. “You’ll have your own (AS) Army then,” he told me.
(You’ll never get rich by digging a ditch or having an MRI in the AS Army.)
I am more of a pacifist. I consider myself a conscientious objector in the War on Cancer. But for this purpose, I can live with the AS Army analogy.
David said that at 1,000 subscribers, the audience reaches a critical mass, and readership starts snowballing.
So, attention AS soldiers: I just discovered we’re just 10 subscribers short of the 1,000 mark. Not sure what magic will happen when we reach and pass that level. But, based on the trade winds and tea leaves, I expect it to happen this September, Prostate Cancer Awareness Month, or no later than next month.
I never expected to take it this far. Substack just named this site a “bestseller.” We must doing better than a lot of other substacks, but not as well as those with hundreds of thousands or even millions of readers. N
By definition, our niche is small—patients on AS—close monitoring of low-risk and favorable intermediate-risk prostate cancer—our partners, health professionals and maybe some people who are just curious.
But the potential market is huge. Something like 50,000 U.S. patients each year are diagnosed with low-risk prostate cancer and are potential candidates for AS, and, therefore, are potential readers of The Active Surveillor.
I need to build the audience.
But I also need to build the paid readership. I’m afraid that people—including major online companies—think the written word is free. No wonder so many newspapers have gone under or have shrunk their staff and what we journos call the “news hole,” the amount of space in a newspaper or broadcast news show that remains for journalism after advertising has been purchased
My goal here is to share news you can use on AS and prostate cancer without red ink. I just want to break even. About 125 of you pay at least $50/year to subscribe.
I appreciate it. It helps me cover my transcriptionists, software purchases, and other odd expenses, like 15%-plus going to Substack, the cost of tofu, mung bean and alfalfa sprouts, and seitan, humus, broccoli, to keep me fed, plus federal and state income taxes.
But I am still a couple thou from breaking even.
Meanwhile, I have new expenses for grad school. I just started work on a Master’s in Public Health at the University of Illinois at Chicago (Go Flames!) School of Public Health. I hope to learn more in the program to advance la causa. Viva la causa.
From the beginning, I promised never to require paid subscriptions. Friends suggested that I make the newsletter subscription-only. I won’t do that.
Some of the information I publish here is not widely known or available for fellow patients, such as new standards for PSA testing from the World Health Organization, the advantages of transperineal over germy rectal biopsies, controversies over whether Gleason 6 is cancer or not, overuse of PSA, commentary from fellow patients, interviews with the top docs in the field, such as Laurence Klotz, Kevin Ginsburg Michael Leapman, Todd Morgan, Peter Carroll, and Jonathan Epstein, etc.
Pay if you can. No pressure. But either way, sign up if you haven’t to help us reach that 1,000 subscriber level. Stay tuned.
Ripped from the headlines
By Howard Wolinsky
While attending grad school, webinars and support meeetings, I also write freelance articles for MedPage Today and Medscape Medical News.
Catch up on some of my stories:
—Polygenic risk scores—a new way to look at genetics—may join germline testing, somatic testing, MRI, PSAs, and biopsies and determining how to manage lower-risk prostate cancer. In fact, William Catalona, MD, the father of PSA screening in the mid-1990s, said he thinks PRS potentially may help men to not only avoid PSAs, but also Active Surveillance. He said, "A polygenic risk score estimates your risk by adding together the number of bad cards you were dealt by the impact of each card, such as an ace vs a deuce.” Critics say PRS is not ready for prime time, though Catalona thinks it is.
Read more: https://www.medscape.com/viewarticle/996114
I will have more on PRS soon.
—Multiparametric MRIs. Top U.S. guidelines say, if possible, men with rising PSAs ought to have an MRI before a biopsy, which has risks, such as infections with transrectals. But only 50% of American men undergo MRIs-first; the others do biopsies first, which is ass-backward.
New studies from Sweden and UK bolster the view that MRIs should come before any biopsy. But U.S. urologists are skeptical about the potential of using MRIs as a primary screening tool, replacing PSAs.
Read more in Medscape Medical News: https://www.medscape.com/viewarticle/996212
(Gabe Canales, BlueCures.org)
—Prostate cancer, not just an “old man’s disease.” Read my blog in MedPage Today about Gabe Canales, who was diagnosed with prostate cancer at age 35. He ended up starting a foundation. BlueCures.org, to try to persuade young men to take their health seriously. Read about Canales here: https://www.medpagetoday.com/special-reports/apatientsjourney/106156
Laughing your prostate off in the Gleason awards—deadline extended
By Howard Wolinsky
Submit your prostate jokes, cartoons, limericks, whatever—on DREs, PSAs, BPH, and prostatitis—to The Gleasons—Putting The Glee In Gleason Scores, the first prostate humor contest.
The contest, started by Jim-Bob Williams, a therapeutic humorist and Gleason 6 patient, and me, is open to doctors and patients alike. The deadline has been extended to Sept. 15 to help out some stragglers.
Share your prostate humor at howard.wolinsky@gmail.com. Shaggy dogs, one-liners, limericks, poems, cartoons, whatever floats your boat. We do play blue, so ED and Viagra jokes are fair play.
A “distinguished” panel will announce the winners later in September, Prostate Cancer Awareness Month.
(Sir Billy.)
In the professional division, AnCan Foundation has nominated Sir Billy Connolly’s over-the-top prostate exam bit: https://ancan.org/billy-connolly-prostate-examination/
Guaranteed that you’ll laugh your prostate—and ass—off.
It’s Pca Awareness Month. Why not catch some free webinars?
—PHEN (Prostate Health Education Network) will address issues relating to AS and Black men in a webinar, the 19th Annual “African American Prostate Cancer Disparity Summit.” Register here: https://tinyurl.com/mu7ebh4d
—Active Surveillance Patients International (ASPI) is sponsoring a free webinar on lifestyle research and low-risk prostate cancer from 12-1:30 p.m. Eastern, Saturday Sept. 30. Register here for “Applied Research and Lifestyles and Low-Risk Prostate Cancer: https://zoom.us/meeting/register/tJwvdOGoqjwuE9CC8AI45nYdsj63e-iUnop6
The program features Drs. June Chan and Stacey Kenfield from UCSF.
(Stacey Kenfield, ScD.)
—Want to learn about focal therapy? Listen to AS pioneer Dr. Laurence Klotz: https://ancan.org/webinar-is-focal-therapy-right-for-your-prostate-cancer/
—Lifestyle? Catch ASPI’s webinar with Dr. Stacy Loeb, of NYU, on lifestyle factors, such as diet. Great talk on a plant-based diet: https://aspatients.org/meeting/as-101-program-on-diet-and-nutritional-lifestyle/
Jim, I read you loud and clear. Don't know what Substack is sending. Acknowledge, pls. Howard
Well, I'll try a comment even though it doesn't look like any of my last four or five have gone anywhere.
I appreciate your efforts, but so far Substack has been only a dead end for me except for daily offers of things I don't want.
Howard, if you would answer just one of my comments or emails, I would feel better.
Jim