Please complete survey on issues confronting Active Surveillance patients
It'll take five minutes... Help us out ... And more ,,,
By Howard Wolinsky
Have you responded to the survey on AS issues?
About 200 of you have. Thanks. But we need more responses to reach statistical significance. Help us be significant.
To complete the survey, click here: https://www.surveymonkey.com/r/W69XXDS
The survey is aimed at patients currently on active surveillance and those who were but have moved on.
Several issues are facing men on Active Surveillance for low-risk to favorable intermediate-risk prostate cancer.
Support groups for such men are conducting a survey to get a reading of patient views on these topics to be heard by clinicians, researchers, guideline writers, and policymakers.
AnCan Virtual Support Group for Active Surveillance, Active Surveillance Patients International, Prostate Cancer Support Canada, and TheActiveSurveillor.com newsletter are asking for you to participate.
Transperineal biopsies becoming mainstream issues
By Howard Wolinsky
For the past two years, I have been beating the drum for migration to safer transperineal biopsies that avoid sepsis by bypassing the germy rectum.
This happened in Norway when something unlikely happened—biopsies became front-page news after a patient died from sepsis from a transrectal prostate biopsy. Men voted with their feet and prostates to make safer transperineal biopsies the preferred biopsy in Europe,
There is growing interest in this topic by U.S. patients, (We cover the topic on the survey mentioned above: https://www.surveymonkey.com/r/W69XXDS
I ran stories on this topic in Undark and in Medpage. At AnCan we ran a debate on it. ASPI has run programs on it such as this one in August 2021: https://aspatients.org/meeting-videos/
The European Association of Urology in January 2021 declared transperineal as the No. 1 for biopsies because of its safety record. Dr. Hein Van Poppel, policy chief of EAU, told me that in Europe. that transrectal biopsies now are considered “medical malpractice.”
But transrectal biopsies still are No. 1 in the United States. It’s a tough issue for the American Urological Association which may be reconsidering its stand as it writes new guidelines. If Big Uro goes with the evidence, Big Change could be coming to biopsies in the U.S.
Last year, I pitched AARP The Magazine to do an article on the debate. I never heard back from them.
Part of my note last November:
“Dear Editor,
I have an idea for an article for your Health and Fitness section that could help prevent some of your male readers from contracting potentially disabling and deadly sepsis. The story relates to prostate cancer, the No. 2 cancer killer in men.
“As part of routine diagnosis and staging, men undergo transrectal biopsies. Many on close monitoring programs, known as active surveillance, like me, undergo serial transrectal biopsies--at least in the U.S. Of the 2 million such biopsies performed annually in the U.S., 95% are transrectal--when a dozen or more needles are plunged into the rectum to obtain tissue samples from the prostate for biopsies to confirm, the presence of cancer or to determine the disease stage. It's a dirty business that can cause sepsis and other infections.
“But there is a safer alternative--the transperineal biopsy, which safely passes through the disinfected perineum, a patch of skin between the anus and testicles. The European Association of Urology this year declared transperineal biopsies being the preferred approach. And there have been bans on transrectal biopsies in some countries such as Norway and the U.K. and financial disincentives are in effect in Australia which doubles the fees paid to doctors for performing transperineal biopsies in place of transrectal procedures.”
I didn’t get an answer. That happens to freelancers like me all the time. MS Magazine once did an outright steal of my pitch and then had the nerve to put their reporter in touch with me for contacts,
I don’t care if I am the victim of “the steal.” The important thing: The Magazine just ran an article on transperineal.
I can’t overstate the importance of this.
AARP The Magazine, AARP's monthly magazine and flagship publication, continues to serve as a primary source of information and entertainment for people age 50-plus – with a readership of 38.3 million – the largest of any magazine in the U.S., according to data from market research firm GfK MRI.
American Legion Magazine also ran an article.
Change is coming. Sooner or later. Let’s hope sooner.
Meanwhile, please sign my petition on phasing out transrectal: https://chng.it/7bQsWSfK
More help: Please come to these meetings on AS
By Howard Wolinsky
The Active Surveillance Coalition, a collaboration of leading support groups for active surveillance (AS) for prostate cancer, is sponsoring a webinar at 9 a.m. Vancouver/12 p.m. New York/5 p.m. London/6 p.m. Amsterdam on Thursday, Nov. 17 to discuss how we can move the needle on AS, close monitoring of prostate cancer.
AS leaders from Sweden, Holland, the United Kingdom, and the state of Michigan’s will share their “secret sauce” for reaching AS rates of near 90% and above.
The free webinar is entitled “Moving AS to the next level: Can we help more patients?”
Register here: https://bit.ly/ASnextlevel
The United States is behind other wealthy countries in acceptance of AS though the approach started here and in Canada in the late 1990s. AS uptake with AS finally reached a majority of 60% in 2021. The American Urological Association in 2022 set a new goal of 80% .In 2010, only 6% of patients qualified for AS opted for this approach.
Several European countries and the state of Michigan’s MUSIC (Michigan Urological Surgery Improvement Collaborative) program have reached AS uptakes of around 90% or higher.
Panel members will present their stories followed by a discussion and a Q&A involving the audience.
AS 101 is a series of videos in which real patients and their partners ask experts about AS
Active Surveillance 101 - Part 2 featuring Nancy and Larry White and Dr. Laurence Klotz at ASPI on Oct 29, 2022 12:00 PM Eastern.
Register at https://bit.ly/3SENBAd
To view session 1 go to https://bit.ly/3BUCxIE featuring Nancy and Larry White and Steve Spann, MD, family physician and dean of the University of Houston College of Medicine.