PLEASE--respond to the AS survey to see where we stand on issues and guide policymakers
We need your input
By Howard Wolinsky
Too often, we patients have been left out of discussions impacting our health. We’re treated like passengers, not drivers or co-drivers.
This is changing with shared decision-making on whether patients like us should go on active surveillance or undergo active treatment, such as surgery and radiation.
Still, major issues are facing us as well as clinicians, researchers, guideline writers, and policymakers.
Will renaming Gleason 6 lesions as noncancerous reduce mental distress and financial toxicity in patients on AS? Should U.S. guideline writers, as their European counterparts did last year. favor safer transperineal biopsies vs. transrectal biopsies that can cause sepsis and other infections?
AnCan Virtual Support Group for Active Surveillance, Active Surveillance Patients International, Prostate Cancer Support Canada, and The Active Surveillor newsletter are asking for you to participate in a survey to obtain patient perspectives on these and other issues.
The results of this survey will be used to inform appropriate bodies about patient views on Active Surveillance.
We define Active Surveillance as a management strategy for patients with initially diagnosed low-risk Gleason 6 prostate cancer to favorable intermediate-risk Gleason 3+4 prostate cancer, but not recurrent disease.
Please answer all questions. All information will be kept confidential. You will receive a summary of the results. If you receive this invitation more than once, please only respond once.
To participate in the survey, click here: https://www.surveymonkey.com/r/W69XXDS
This is the second year the groups have conducted a survey. In 2021, we learned, that nearly 20% of respondents had undergone transperineal biopsies compared with the 5% rate nationally.
Also, we found about 30% of respondents said they felt anxious around the time they visited the urologist and around the time of or are awaiting results from PSA testing, MRIs, or biopsies. Half of these respondents said they were anxious before they were diagnosed with prostate cancer.
Results like these help determine directions for programming and set priorities for advocacy.
So fill in the survey. Answer all questions. Click here: https://www.surveymonkey.com/r/W69XXDS
Moving AS to the next level: Can we help more patients?
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 has lagged behind other wealthy countries in AS acceptance 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 in
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.
The Active Surveillor newsletter started in January with the goal of saving one prostate at a time.
We are now at 499 subscriptions. I will send a copy of the new edition Dr. Mark Scholz and Ralph Bloom’s classic book, “The Invasion of the Prostate Snatchers” to the 500th subscriber.
The newsletter was intended to be free. That doesn’t mean there are no costs. My trusty transcriptionist Nancy is great but she doesn’t work for free. I just upgraded my not-so-trusty internet service so I don’t lose connections at meetings I cover. So if you can manage a paid subscription, Nancy (and I) would appreciate it. But no pressure/