
Discover more from The Active Surveillor
I started this newsletter on the very hot Substack publishing platform on a lark in January 2022. I was playing with popular Substack software and had instantly created TheActiveSurveillor.com.
I had never expected to take it this far. Substack just named it a “bestseller.”
My niche is relatively small—patients on AS—close monitoring of low-risk and favorable intermediate-risk prostate cancer—their partners, and health professionals in the field.
From the beginning, I promised never to require paid subscriptions. I never will.
Friends suggested that I make the newsletter subscription-only. I couldn’t do that.
Some of the information I publish here is not widely known or available for fellow patients, such the new standards for PSA testing from the World Health Organization, the advantages of transperineal biopsies, controversies over whether Gleason 6 is cancer or not, overuse of PSA, commentary from fellow patients, interviews with the top docs, such as Laurence Klotz, MD, Jonathan Epstein, MD, etc.
Talk about inside baseball. This is inside urology.
The subject is serious. But some readers have accused me—I do hope they feel that way—of being “feisty” and “humorous.” I try to bring both to the table along with commonsense, bleeding-edge information and some ‘tude.
I am a career medical journalist (50+ years in the trenches) and now a patient navigating (for almost 13 years) this swamp with you.
I got my 2023 PSA. Looks good, and I’ll remain on my version of AS for at least another year.
The newsletter, on a small scale, has taken off.
I am approaching 1,000 subscribers—a significant milestone in an enterprise like this, orc so my sons tell me. I expect to get there this summer.
I get as many as 2,000 readers per issue. (Who are you, new people?)
I have a 60%-70% “open rate,” where 40% is considered high. The newsletter is reaching the right people.
And as of today, I have 101 paid subscriptions. Sounds small. But this is big in Substack-land. Substack says most newsletters don’t have that many subscribers and that it takes longer in most cases than it took The Active Surveillor to reach that level.
I charge $50 per year or $5 per month, but some of you have kicked in as much as $250. (Thanks to all—including those with free subscriptions. I’m grateful to all.)
When I realized a year ago I would lose money doing this newsletter, I offered readers an option of paid subscriptions to defray costs. I lost $2k in 2022 based on costs for transcribing tapes, software fees from Substack and bank fees, taxes, etc.
My 2023 goal is to break even. I figure I need 50 or 60 more paid subscribers.
The potential market for TheActiveSurvellor.com is huge, but many on AS are closeted and isolated. I went for seven years before I met another AS patient in person.
There will be an estimated 1.4 million new cases of prostate cancer worldwide in 2023, including 288,000 in the U.S. Figure that one-third of them would be AS candidates.
Sign up here—paid, unpaid, or just curious, unsubscribe if it isn’t for you:
Reader testimonial (no one was paid)
Here’s what some readers (and friends) have to say about TheActiveSurveillor.com:
Mark Lichty, chairman of Active Surveillance Patients International, who has been on AS for 18 years. ASPI has served patients in more than 30 countries, from Brazil to Russia, Iceland to Lebanon, Australia and China. He has been on AS for 18 years. I call Mark the “Methuselah of AS.”
“Howard and his The Active Surveillor newsletter may be the most important voice on the planet for moving AS ahead. I am proud to call Howard a friend, and he also was one of the co-founders of Active Surveillance Patients International. He moved on to do his newsletter as he needed the flexibility that his newsletter provides.
“Every man diagnosed with low- to favorable intermediate-risk PC should subscribe to his newsletter. I get frustrated with I’m as he is reluctant to ask for donations for his work. Let me ask on his behalf. Please donate to keep Howard writing.”
Phil Segal, Facilitator, Prostate Cancer Support Canada—Nationwide AS Support Group. A Toronto resident, Phil has been on AS for 15 years.
“If you want to keep up with the latest in active surveillance news, one of the best blogs going is “The Active Surveillor.” Always current interesting articles by Howard Wolinsky as well as other contributors. Well worth following.
Anne Katz, PhD, RN, FAAN, is a certified sexuality counselor and clinical nurse specialist at Cancer Care Manitoba, Winnipeg, Canada. She is author of “Prostate Cancer and the Man You Love: Supporting and Caring for Your Loved One.”
“TheActiveSurveillor.com is an invaluable resource for men on active surveillance, those considering this treatment option, as well as family members who support them. Containing up-to-date information, this newsletter is an essential part of keeping abreast of the latest news about prostate cancer and active surveillance. Howard Wolinsky is in a unique place to write about this - he walks the walk, and talks the talk!
Alex Scholz, CEO, Prostate Cancer Research Institute.
Howard Wolinsky is a legend. He brings the active surveillance experience to life through his unique and entertaining voice. Every active surveillance patient should read the Active Surveillor to help further their research and improve their quality of life.
Paul Schellhammer, MD. a prostate cancer patient, expert in managing prostate cancer, and past president of the American Urological Association.
“ In this newsletter, TheActive Surveillor, Howard Wolinsky, a well-informed and respected journalist, shares observations about active surveillance for prostate cancer, a strategy he has pursued. The newsletter provides updates and insights for prostate cancer patients , especially newly diagnosed.”
Matthew Cooperberg, MD, MPH, anAS advocate from UCSF, did a presentation at the Irish Genitourinary Conference today. He also took the photo below of a study presented by n Australian health psychologist Suzanne Chambers, recommending screening of prostate cancer patients.
Such screening is routine at UCSF. But Cooperberg added it is often overlooked.
No kidding.
The American Urological Association doesn’t recommend routine screening of prostate cancer patients for mental distress. It does support screening of men with testicular cancer.
Other major groups, such as the National Comprehensive Cancer Network, the American Society for Clinical Oncology and the American Cancer Society recommend screening all cancer patients.
AUA doesn’t feel there is adequate research documenting benefits from screening.
See what the Aussies found:
I started this newsletter on a whim in January 2021 with no big goal other than a modest plan to “Save Prostates Daily.”
I said the newsletter would be free. It still is.
A year ago, I realized I was losing several thousand of dollars a year. I had fees for software and paid to have yranscripionosys with the who's who in AS.
The Active Surveillor makes Substack's 'Bestseller' list
Thanks, Jim.
I appreciate the support.
My little public-TV-like effort to get out of the red had an impact.
I am 25% out of the red.
Howard
Howard is true believer in Active Surveillance. Being on Active Surveillance he knows what questions to ask. He does his homework before he sends out his newsletter. Most of us don't have the time to research a topic but with Howard's many years of Medical Journalism he will help us cut through all the Medical Jargon and understand the topic he is explaining. Hope you will join me in giving a donation to defer his cost in running his newsletter.