By Howard Wolinsky
I always advise fellow patients to bring their partner or a friend along when they go to the urologist to witness and take notes.
An extra set of eyes and ears really can help if you are being presented with a lot of potentially life-changing cancer diagnostic information or making a decision about whether to go on active surveillance (AS) or to be treated with radical surgery or radiation.
I also suggest that, if possible, they record the meetings on a tape recorder or a voice memo app on their smartphones. At the least, bring along a friend or partner to take notes/
Personally, I prefer to record these sessions. In most cases, not all, the urologists have gone along with my request.
Taking notes is second nature to me as a career journalist. But so is recording interviews.
In my view, there is nothing like being able to refer to a recording or a verbatim transcript to check your memory or your notes.
Enter my friend Geovanni Espinosa, a naturopathic physician specializing in prostate health at NYU Langone. “Dr. Geo” is a popular author and podcaster.
He recently released a podcast on three questions to ask your urologist regarding prostate cancer . Good program.
(Dr. Geo)
He also included advice on memorializing these doctor visits. Thats what I want to focus on today.
Geo makes the case for NOT recording these doctor visits.
He said in his warm and authoritative voice: “I'm oftentimes asked, should I record the meeting with my doctor? Your doctor's gonna say, yeah, sure. You can record it. I don't recommend that you do. I don't recommend that you record that, but Dr. Geo, what, what is there? Are they hiding something?”
First off, let me say not all doctors will consent to your pushing that record button.
I asked my first AS doctor if I could record our conversation. He declined. Without explanation.
Was he worried about his words being used against him in a court of law? I have no idea.
It was polite to ask. I never expected he’d say no.
Illinois is one of 11 states that require two-party consent to record a conversation. Some states only require one-party consent--yours. Check out the law.
In any case, this recording issue became a thing. Every time, I saw the urologist, he would ask me if I was recording. It became annoying and created a sense of distrust. I never recorded him in my role as a patient.
(I interviewed him as a reporter and obtained his consent.)
I switched urologists for this and other reasons we can discuss another time.
My new urologist said I should feel free to record our visits, which made for some interesting listening for my transcriptionists when I needed a record from which to quote. “I wouldn’t tell you anything different if a recorder was on or not,” the urologist told me.
Geo thinks recording is just a bad idea--because doctors may feel more inhibited and not share information with you.
He said he understands why patients want to record. “I don't know what it is, guys who are diagnosed with prostate cancer … sometimes they struggle with listening to certain details that are important.”
True that.
I have heard it over and over. Guys are told they have low-risk Gleason 6 CANCER. They only hear the C-word. We seem to be wired that way/
My very first urologist didn’t even explain what low-risk and Gleason 6 meant. I fired him, too.
Geo conceded that on the doctor's side, there can be fear of a lawsuit.
He said: “I know that there are times where a doctor, a physician, just wants to tell a patient, ‘look, you're gonna do great. And you are gonna, you know, you're gonna live a long time from this.’”
But that “cheap, little Sony,” as President Nixon called it back in those care-free Watergate days, inhibits sharing such sentiments.
Geo said doctors will feel freer to speak without a recorder: “But if it's being recorded … They may not say something that's encouraging and inspirational. Let's just say. And I think that's important. So don't record it.”
He said a patient will be helped more by a note-taking companion, who can capture the details.
Respectfully, I disagree. Find out for yourself. You decide. Ask your doctor, if it is OK to record.
I made my case to Geo, especially as a journalist who sometimes writes about visits to the urologist.
“Point taken,” he said. “Maybe for the large majority, the no-recording rule applies.”
In his 20-year career, Geo has had two journalists as patients. I suspected they might have asked to record the sessions. Geo confirmed they did. So I asked him whether he consented to an interview and whether he withheld information.
Geo said: “Yes, I always give them permission to record. It is too awkward not to. In my practice and a part of my medical philosophy is to inspire and encourage hope, even in the most dire circumstances. The physician loses nothing, the patient gains plenty. So, I don’t think I hold anything back but perhaps at a subconscious level, I might. Hard to tell.”
You decide: to record or not to record, as Shakespeare’s Hamlet might have said in other circumstances.
Check out my earlier column on Dr. Geo, “When is cancer a 'blessing'? When it's a Gleason 6 'cancer.'“
Payback time—please answer the AS survey
In our first day, more than 100 of you took the survey on AS.
But I’m greedy. I need you all to pitch in. Please.
Think of this as a PBS appeal. I am on my knees, pleading. Take the freakin’ survey—and no one will be hurt.
In fact, your input will help guide policymakers, guideline writers, and programmers for webinars.
Here’s the pitch:
Are you on Active Surveillance for low-risk Gleason 6 prostate cancer to favorable intermediate-risk prostate cancer? Or have you moved on from AS?
We need your help with a survey designed to determine patient views on AS. Data will be used to inform policymakers, guideline writers, and clinicians about where we stand on key issues.
For example: 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.
To participate in the survey, click here: https://www.surveymonkey.com/r/W69XXDS
Moving AS to the next level
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 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.