MUSIC addresses Anxious Surveillance

(Part 1 in a series on AS and emotional distress. Some good news from Michigan.)

By Howard Wolinsky

Anxiety is so common in men on Active Surveillance (AS) for lower-risk prostate cancer that we have a name for it: Anxious Surveillance.

It’s common: 55% of us experience it. 10% experience severe anxiety that can drive us to seek aggressive treatment, according to a survey of 450 men who are on or were on AS.

And unfortunately, organized urology generally pays anxiety lip service.

But the stand-out MUSIC group (Michigan Urological Surgery Improvement Collaborative) is tackling anxiety and AS issues head-on with a brochure on its website. MUSIC even endorses support groups, such as AnCan Foundation’s Virtual Support Group for AS and Active Surveillance Patients International (ASPI), as a way of helping men

Lots of urologists apparently are unaware of or feel challenged by support groups led by patients.

One urologist recently told me he doesn’t trust support groups and thinks the leaders often have chips on their shoulders. I don’t see it that way at all. I don’t know how common this communication problem is, but I suspect it is common.

But MUSIC is a trailblazer. MUSIC has a 90%+ uptake of AS in low-risk men and 45% in favorable intermediate-risk prostate cancer, compared with 60% and 45%, respectively. So maybe MUSIC will help open the door on this issue,

I asked Dr. Kevin Ginsburg, co-director, of MUSIC prostate program and assistant professor of urology at Wayne State University in Detroit, why MUSIC took this position when other leading urology organizations, including the American Urological Association, don’t recognize anxious surveillance as a major problem.

I was stunned when Ginsburg said the idea for the brochure came out some questions I asked him a year or so ago.

Here’s a recent Q&A I did with Ginsburg:

The Active Surveillor (TAS): Why did you decide to do a brochure on anxiety?

Dr. Kevin Ginsburg (KG): You deserve a lot of credit here. This came from a series of questions you initially posed to me regarding men leaving AS without disease reclassification (i.e. anxiety) about a year or so ago. Recognizing that men leaving AS with low-risk disease due to non-cancer causes (such as anxiety) represented an opportunity to decrease the over-treatment of low-risk prostate cancer and quality improvement. The anxiety document was generated in that background and context. 

TAS: How big of a problem is mental distress in men on AS?

KG: Larger than we recognize. I've seen a lot of work looking at emotional distress and depression for men with prostate cancer, but less looking specifically for men on AS. This certainly is an issue and something I tackle not infrequently in my practice, helping men get comfortable with the idea of AS. Some men are very comfortable from the start. Our conversation about their disease resonates with them.

They understand that low-risk prostate cancer is very different from other types of cancer, very slow growing, biologically does not behave like a "cancer", understand the risks of treatment, and that there is not much to nothing lost in terms of cancer control with AS. Other men have more distress and anxiety around AS. They fear the unknown and uncertainty around what will happen in the future. Despite discussing the safety and evidence to support the use of AS, it takes them a while to get comfortable with being on AS.

TAS: AUA and ASTRO [American Society for Radiation Oncology] don't support guidelines recommending screening of all men with prostate cancer for emotional distress (anxiety, depression and stress) but other groups do such as NCCN (National Comprehensive Cancer Network), ASCO (American Society for Clinical Oncology), American College of Surgeons and American Cancer Society.  Do you know why AUA and ASTRO don't? My understanding is they don't think there a proof of a benefit--although there is evidence some men with prostate cancer commit suicide. AUA does support screening of men with testicular cancer.

KG: As you know, I work at an NCI-designated comprehensive cancer center. It's part of my "rooming" process that my nurse screens all patients for emotional distress. If they score above a certain threshold, they meet with a social worker that day.

But my practice is very different from most urology practices, and we have resources that others don't. One thing to consider is if some version of this process is scalable and practical to do in all urology practices. Healthcare providers, especially urologists, are being asked to do more and more and more and more.

If frontline urologists are trying to care for patients in their community with a variety of urologic issues (pain from kidney stones, inability to urine, incontinence, erectile dysfunction, prostate cancer, kidney cancer, bladder cancer, testicular cancer, etc.), this could take away from their ability, time, and effort to provide urologic care, which may then influence wait-times and clinic capacity (which are already...stretched thin). 

Long story short: treating emotional distress and mental health are essential to cancer care and providing holistic care to the whole patient. Yes, I support it. Yes, I think it's important. Yes, I think there is nuance as to how this should be done properly, likely in a multidisciplinary setting between the patient, their urologist, primary care provider, and other healthcare professionals who have the expertise and resources to manage emotional distress, depression, and anxiety. 

TAS: “Rooming’? What’s that?

KG: By rooming, I mean when the office staff/nurses take the patient from the waiting room to their exam room. They take vital signs, ask about their medical history, medications, what are you here to see the doc about today, etc. In that process, they have a distress scale that they use to screen for emotional distress.

C’mon help me decide if I should stay on AS

By Howard Wolinsky

I need your help.

I am weighing whether I should stop my Active Surveillance program and would like your opinion. I am 76 and nothing is going on—my PSA is stable and this freakin’ cancer was only seen once back in 2010.

I’d value your opinion. Go to https://forms.gle/oFvfH3rPdgJmEbiQ7

BTW, even if I hop off the AS Express, I’ll keep doing this newsletter.

MUSIC in spotlight at ASPI for pioneering its very AS program

By Howard Wolinsky

In 2001, Ann Arbor-based Michigan Urological Surgical Improvement Collaborative (MUSIC) demonstrated that more than 90 percent of patients with low-risk (Gleason 6) prostate cancer could go on Active Surveillance, close monitoring.

It was the first time this had been achieved within a state within the U.S. and matched AS success stories in the United Kingdom and Sweden. Many experts thought those countries succeeded with AS because they have national health systems.

But MUSIC proved them wrong. MUSIC accomplished similar success in the capitalistic U.S. with backing from Blue Cross/Blue Shield of Michigan.

In the U.S., per the American Urological Association figures from 2021, there is only a 60% uptake of AS, close monitoring. Their goal is 80% at some indefinite time.

MUSIC also has had 45% uptake of AS in patients with favorable intermediate-risk (Gleason 3+4) prostate cancer compared with 20% nationally.

ASPI’s Awards Committee, of which I am a member, took note and made a special award to MUSIC.

I presented the award in person in June in Grand Rapids, Michigan, to Kevin Ginsburg, MD, co-director of MUSIC’s prostate program, and a professor at Wayne State University in Detroit.

ASPI ran its own program online featuring Dr. Ginsburg, Mark and me. To view: https://aspatients.org/meeting/a-s-p-i-2023-music-award/

Mark designed the ASPI award for MUSIC. He explained, “It's about what they do so well, listening. And I think that is critical in the patient-doctor relationship. I heard Dr. Ginsburg's story about MUSIC, and it is one of listening. And so, you'll see on the hand a patient and doctor listening to one another. And I think that goes to all of our medical issues. If we could listen better, we would have a much improved medical system. So MUSIC has really been a beacon of light for us all in terms of how to do that best.”

I presented some history on how aggressive treatment of prostate cancer started in the mid-1990s, exposing patients to unnecessary surgery and radiation and exposing them to side effects such as impotence and incontinence.

The 1990s were a time of radical change in technology and economics for urologists and their patients. Note the word radical.

PSA screening, biopsy guns, and ultrasound transformed radical prostatectomies into the bread-and-butter procedure for urologists.

No doubt the lives of some men with advanced prostate cancer were saved.

But those of us with low-risk prostate cancer paid a price with overdiagnosis and overtreatment of cancer that we, in many if not most cases, we could have lived with or even ignored. The evidence for this has increased over and over again.

Some visionaries began promoting a radical idea—Active Surveillance to try to put the brakes on the runaway train of low-risk prostate cancer.

Skeptics said AS would never catch on in the American healthcare system. They said the incentives of surgical fees would be a barrier to acceptance of AS amongst urologists and that lower-risk patients would not accept AS as a safe alternative to active treatment.

But some other visionaries, including Drs. David Miller and Jim Montie, of the University of Michigan (Go Blue!), with funding from Blue Cross/Blue Shield of Michigan, said there could be another way. In 2010, they started MUSIC, the Michigan Urological Surgery Improvement Coalition.

(Compare Michigan’s success with AS for low-risk patients above vs. U.S. below.)

MUSIC has been a pioneer in private and academic practices working together to share data and best practices. MUSIC has been a strong supporter of transperineal biopsies, which prevent potrentially deadly sepsis.

Read more on MUSIC in my MedPage Today blog: https://www.medpagetoday.com/special-reports/apatientsjourney/100530

In my talk, I challenged MUSIC to do more. I think MUSIC has an opportunity to work with patients to help reverse the high dropout rate from AS. Within five years of diagnosis, more than 20%-30% of patients leave AS without an upgrade to their Gleason score/aggressiveness of their cancers.

In my view, conquering the dropout rate is the next frontier in Michigan.

Then, it was Dr. Ginsburg’s turn.

He said: “To get an award from ASPI, a group of patient advocates really is so much more special than if this award came from the American Urological Association or the Society of Urologic Oncology. So thank you again, ASPI, Howard, Mark, and everyone for again acknowledging what we've done in MUSIC. And hopefully, people can continue to learn from our lessons and see what we've done here.”

Ginsburg said winning the award reinforces MUSIC’s mission statement: “MUSIC is a community that partners to improve patients lives by inspiring high-quality care to data-driven best practices, education and innovation.”

MUSIC involves 95 percent of Michigan urologists— 260 urologists from 46 practices geographically “from the entire state of Michigan from the Upper Peninsula to the Lower Peninsula, east side of the state, west side of the state, everywhere in between, urologists that are part of a private practice groups, small and large groups, hospital-employed groups, academic centers,” Ginsburg said.

“The point being is it's very hard to bump into a urologist in the state of Michigan and not have them be a MUSIC urologist. And importantly, we're a group also that has 15 patient advocates that are very dedicated and really help ensure that what we are doing really resonates and matters to the patients.”

Active Surveillance was MUSIC’s first foray into urology.

Ginsburg said MUSIC’s secret sauce is data: “We see where we are. We identify the problem, then the old adage goes, you can't manage what you can't measure. And so, we have to be able to measure, understand what we're doing to then inform, come up with a plan, develop interventions, and then see where our outcomes are. And then use that to assess for progress, figure out where we're excelling, figure out where maybe we're coming up short. And then, again, develop more plans, more interventions, and continue.”

He said a patient registry is key to collecting data. This involves “the collaboration of the willing” physicians.

“We're extremely lucky to have very steadfast partners in Blue Cross Blue Shield of Michigan. They fund our initiatives. They fund the physical infrastructure of MUSIC, the registry, the data collection mechanisms, and all that is very important, because that makes participation very, very easy for physicians. They don't have to worry about figuring out how are they going to fund data abstraction.”

MUSIC and its playbook are spreading. The program now has sites in four other states. The state of Pennsylvania has a MUSIC clone. I hope the MUSIC spreads.

Ginsburg concluded: “We're very grateful and honored to receive this (award) and are looking forward to partnering with APSPI to help increase, again, improve the quality of care for all men with low-risk disease and hopefully trying to get the United States above 60 percent to 70, 80, and 90 percent in the not too distant future.”

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You’ve got questions? They’ve got answers.

By Howard Wolinsky

Starting in November, a panel of experts will answer your questions about Active Surveillance and lower-risk prostate cancer right here at TheActiveSurveillor.com.

These top docs will respond to your questions about pathology, urology, radiology, and sex and surveillance.

Please send questions via email to mailto:pros8canswers@gmail.com

Keep the questions short and sweet. They should be of general interest. Sign with your real name, initials, where you live, how long you have been on AS. Or sign with a wistful anonymous name, like “Lost in Flossmoor,” or “Stranded on a Desert Island.”

(We cannot offer medical advice. Go to your personal physicians for that.)

Join ASPI in celebrating AS support pioneer Thrainn Thorvaldsson

By Howard Wolinsky

Icelandic support group trailblazer Thrainn Thorvaldson, who started the world’s first support group for Active Surveillance, is being honored with ASPI’s for Patient Advocacy Award Saturday, October 28 at 12 pm-1:30 p.m. ET.

Thrainn changed my life when he heard about how I ranted about bad treatment of AS patients at a major medical meeting, and we decided to work on reforming things. We plus Mark Lichty and Gene Slattery started ASPI in 2017.

Following the Active Surveillance Patients International ceremony, they will open the floor for discussion from the audience.

Register here: https://zoom.us/meeting/register/tJMrcuuqrTgiH9WrrznAmLJvh-xOcZT6Fg2q

ASPI’s prior award programs have included The Gerald Chodak Award, named for ASPI’s first medical advisor and AS pioneer, the late Dr. Gerald Chodak, honoring Dr. Laurence Klotz, the father of AS in 2022 and Dr. Peter Albertson, who led some of the earliest research on AS, in 2023. The ASPI AS Advocacy Award went to the MUSIC (Michigan Urological Surgery Improvement Collaborative this year.