Breaking news: American Urological Association gives Active Surveillance strongest endorsement to date

AS patients finding a new role in advocacy. Hear us roar.

By Howard Wolinsky

The American Urological Association (AUA) and the American Society for Radiation Oncology (ASTRO) today (May 10) issued their “Clinically Localized Prostate Cancer: AUA/ASTRO Guideline.” They’re catching up to five years of change with their first new guideline since 2017.

(Read the guideline: https://www.auanet.org/guidelines/guidelines/clinically-localized-prostate-cancer-aua/astro-guideline-2022 My news coverage in Medscape: https://www.medscape.com/viewarticle/973714)

A lot has happened over the past five years that has impacted active surveillance (AS) as a management approach for low-risk to favorable intermediate-risk prostate cancer.

AUA researchers will report on Sunday at their annual meeting in New Orleans that as of 2021, nearly 60% of U.S. patients with low-risk prostate cancer opted for AS. This represented a new high in acceptance of the 30-year-old strategy, a far cry from late 2010 when I was diagnosed and only 6% or so of us went on the close monitoring plan with PSAs, MRIs, biopsies, and digital rectal exams.

That’s an improvement, but it still means that about 40% of these patients are still choosing unnecessary surgery and radiation and risking the dreaded “I-words,” impotence, and incontinence. That’s unacceptably high, especially compared with acceptance rates of 90%+ in Holland and Sweden.

Patient advocacy and support groups aimed specifically at AS have emerged for the first time over the past five years, including Active Surveillance Patients International (ASPI) and the Virtual AS Support Group with weekly sessions on the AnCan Foundation’s platform. Previously, these AS patients were misfits in general prostate cancer support groups that covered the full gamut of patients from the lowest risk to the highest risk.

(I am proud to say that I played a role in the creation of the AS groups.)

New technologies and strategies have emerged, including targeted biopsies with mpMRIs, micro-ultrasound, genetic testing revealing how low-risk diagnoses are complicated by the presence of markers such as BRCA 1/2, and increased use of molecular testing to sort out aggressive cancers requiring treatment from the “wimpy”/”lazy” ones that will never be a threat to a patient’s life.

Here are some of the headlines from the new guideline:

—The AUA/ASTRO guideline is the strongest endorsement to date of AS as the preferred management strategy for patients with low-risk prostate cancer.

—The new guideline for the first time recognizes AS as the preferred approach for select patients with favorable Gleason 3+4 cancers.

—The guideline also for the first time merges the “low-risk” and “very low-risk” patients into a single group since the management for both is the same, panel chair Dr. James Eastham, chief of urology at Memorial Sloan Kettering Cancer Center, told TheActiveSurveillor.

This is a vote of confidence in AS, which should reassure many fence-walking urologists and radiologists along with anxious patients and their spouses.

There’s some irony in this merger of the low- and very low-risk groups.

The other major guideline writer in this area, the National Comprehensive Cancer Network, last September triggered howls of protest from urologists and patients when it reduced the status of AS for low-risk patients.

The panel put AS on par with radical surgery and radiation therapy for patients with low-risk prostate cancer. This was a big—albeit temporary—blow to AS. (Its recommendations in favor of AS for patients with very low-risk prostate cancer remained unchanged.)

Leading urologists along with patient advocates, ASPI, AnCan and ZERO/Us TOO, protested loudly with tweets and formal statements. This led NCCN to reverse itself and again make AS the preferred approach for patients with low-risk cancer, as had been the case since 2019.

(I broke the original story on the NCCN guideline in MedpageToday.com. Here’s the follow-up: https://www.medpagetoday.com/urology/prostatecancer/95949)

The movement on behalf of patients on AS has become a model that advocates for women with low-risk breast cancer are trying to emulate. I know about this as I serve on a committee at the University of California, San Francisco that is trying to promote active surveillance for these women. I find this amazing since women usually lead the way on health issues.

Over the past five years, patients on AS and their advocates began exercising our newfound muscles and solidarity. The AnCan group, for example, has had its research presented on posters at the AUA and other groups on the need for peer support.

I recently co-authored a paper with leading prostate doctors on removing the cancer label from Gleason 6, which shook the prostate cancer world. Drs. Scott Eggener, Alejandro Berlin, Matthew Cooperberg, Andrew Vickers, and I published the article in the Journal of Clinical Oncology on renaming Gleason 6 as a noncancer.

The development of the AUA guideline for low-grade prostate cancer is an example. Since the mid-2010s, patients and advocates have had a seat with physicians on the panels that develop the prostate care guidelines.

But this year, the AUA’s Advocacy group went out of its way to encourage patient and advocate participation. We took up the challenge.

The new AUA guideline for the first time endorses virtual support and advocacy from ASPI and AnCan Foundation as well as virtual and in-person support from ZERO/Us Too, the Prostate Cancer Research Institute and others.

Patients on AS and their advocates in groups such as AnCan and ASPI played a role in writing the new AUA/ASTRO guidelines. I joined other patients and advocates who read the panel’s proposals and submitted our comments.

Rick Davis, founder of the AnCan Foundation, which runs support for patients on AS and low-risk cancer, said: “I am pleased to say the panel DID note a number of our suggestions.”

Erin Kirkby, Guidelines Director, American Urological Association, Linthicum, Maryland, said, “Since the mid-2010’s we have included a patient or patient advocate on our panels and made efforts to promote guidelines for peer review with relevant advocacy organizations. We worked very closely this year with our colleagues in Advocacy to promote this opportunity, so our patient engagement for this particular guideline was likely our highest yet.”

At ASPI, AS patients Martin Gewirtz and David Keller submitted comments. The AnCan team, including Davis; Peter Kafka, moderator of the Low-Intermediate-Risk and other groups; and James Schraidt, Joe Gallo, and me, moderators of the AS virtual support group, submitted our own comments as a group to AUA.

Many, though of course not all, of our suggestions were accepted.

I, for example, urged the panel to recommend safer transperineal biopsies to avoid the risks of sepsis and even death from transrectal (also known as transfecal) biopsies. (Sign my petition to phase out transrectal biopsies: https://bit.ly/38U9LNo)

This issue wasn’t on the panel’s agenda. But a separate panel will make its recommendations on that issue in 2023. I expect patients and advocates will go along for the ride, and the AUA may yet find itself on the right side of history.

Here’s some perspective from Davis and Schraidt on the new guideline. (I hope to get some analysis in the new few days from the ASPI group.)

Davis noted among the changes in the guidelines were:

1. The words 'cribriform' and 'intraductal' now appear in the report and are noted as risk factors. They require calling out when healthcare providers counsel patients. (Note: Pathologists observe these patterns as signs of more aggressive cancers.)

2. The guideline specifically acknowledges peer-support and virtual-support groups.

3. References to anecdotal healthcare provider (HCP) experience as a dictate in the guideline were dropped.

4. The section on the use of ultrasensitive PSA in Future Directions was dropped altogether. AnCan pointed out that ultrasensitive testing can unnecessarily raise anxiety in post-treatment patients.

Other areas I noted where we clearly made a contribution were in the recommended use of PSMA (prostate-specific membrane antigen) scanning. (Note: A new diagnostic tool for more advanced prostate cancers.)

I am, like all of us, very pleased that AS is incorporated as recommended treatment protocol for low-risk disease and that it should be discussed with favorable intermediate-risk patients.

And I am disappointed that urologists and radiation oncologists are not required to spend more time counseling men before placing them on hormone therapy.  

Schraidt said: “On balance, I thought the new guideline was an improvement and will benefit patients.”

He added: “I want to express my appreciation to AUA for allowing patient advocate input in the guideline process.  I hope that this will be repeated for future guidelines.

I also want to congratulate our little committee for their hard work and their ability to effectively present the patient voice based upon individual and collective experience. This is something that all of the prostate cancer patient organizations must aspire to. In addition, we need to aspire to work better together to mount a stronger and more united patient voice.

I liked:

—Mention of cribiform and intraductal patterns.

—Discussion of genomic tests and particularly the value of biopsy tissue-based prognostic value of Decipher.

—Discussion of the benefits of genetic testing.

—Discussion of the importance of baseline function in an initial assessment, including specific tools for this assessment.

—Affirmative acknowledgment that AS can be offered to select favorable intermediate-risk patients.

—Discussion of focal therapy with a view that it can be offered to select, appropriately informed patients.

—Information on the value of patient peer support and identification of support organizations.

(James Schraidt)

I didn't like:

—A less than fulsome and orderly discussion of the use of MRI.  It is not mentioned as a tool that should be used prior to the initial biopsy, leaving the door wide open to random biopsies.  Recommended role of MRI in AS monitoring was unclear.

—In connection with imaging, no mention was made of micro-ultrasound.  This is an important emerging tool that can be performed in a urologist's office and has the potential to supplement or even replace MRI.  The guideline missed an opportunity to push this technology forward.

—References to intermediate-risk disease in many places should distinguish between favorable risk and unfavorable risk.

—Need guidance on when a patient should be referred to a medical oncologist when ADT is prescribed.  I liked our proposal of referral if more than four months.

—Endorsement of peer support could have gone further and emphasized the value of peer support at the time of initial diagnosis and prior to a treatment decision.

Patients on AS and their advocates are becoming a force to contend within the prostate cancer world. Patients on AS are growing in number, strength, and status, transforming from a group that only five years ago was fragmented and easy to ignore.

One famed doctor told me that patients with low-risk “were not sexy,” compared with patients with more serious issues.

I think that’s changing. The experts are starting to heed us and our thoughts and concerns. To paraphrase, the feminist anthem, “I Am Woman,” “We’re on AS, hear us roar in numbers too big to ignore.”

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More breaking news: The National Comprehensive Cancer Network (NCCN) has recommended the IsoPSA test as means of helping patients and doctors decide whether they need a biopsy. This so far is for those with rising PSAs and not those on AS, but research could change that. https://www.urologytimes.com/view/nccn-recommends-isopsa-test-for-upfront-prostate-cancer-risk-assessment

As a screening tool, IsoPSA can help about half of patients avoid biopsies.

IsoPSA cuts biopsy rate in half for newbies

Don’t miss the free AnCan webinar on how lifestyle can affect prostate cancer?

AnCan is presenting a program on lifestyle choices and all grades of prostate cancer at 8-9:30 p.m. Eastern on May 31.  Register at: https://bit.ly/3KkxcfC

The webinar, entitled “Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer," features Dr. Stacy Loeb, professor of Urology and Population Health at the New York University School of Medicine and the Manhattan Veterans Affairs Medical Center, and Dr. Justin Gregg,  assistant professor of Urology and Health Disparities Research at UT MD Anderson Cancer Center, of UT MD Anderson Cancer Center in Houston.

Did you miss the best program on AS to date: “Your Voice in the future of Active Surveillance,” on April 22.? Here’s the link: https://aspatients.org/meeting-videos/

A Who’s Who of experts joined the conversation along with patients and advocates, who were not too shabby either.

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Dr. Kerry Courneya, a professor and Canada Research Chair in physical activity and cancer and director of the Behavioral Medicine Laboratory and Fitness Center at the University of Alberta in Edmonton, has pioneered research on the importance of exercise for anxiety, fear of cancer progression, and quality of life in active surveillance patients.

He is presenting a program from 4:30-6:30 p.m. PDT/7:30-9:30 p.m. EST on May 12 at the Active Surveillance Nationwide Surveillance Support Group in Canada. Register here: https://bit.ly/AS1year