A newly published study led by Alejandro Berlin, MD, a UToronto radiation oncologist, has shown that low-risk prostate cancer patients, spouses and undiagnosed men favor renaming Gleason 6 (Grade Group 1) as a noncancer.
Also, the study found that use of a noncancer label boosted the selection of active surveillance (AS), close monitoring of lesions and avoiding aggressive, potentially life-altering treatments. (Life-altering refers to the risks for impotence and incontinence.)
The Berlin 14—of which I am a member—asked healthy patients (194), partners (159), and Grade Group 1 (Gleason 6) patients (159) their thoughts on “labeling” low-risk prostate cancer as a noncancer.
The study, which appears in the Journal of the National Cancer Institute, explores how the “cancer” label impacts perceptions of low-risk Gleason 6 in healthy patients, patients diagnosed with Gleason 6 and spouses of patients.
A “discrete choice experiment,” derived from the marketing world, was conducted in which subjects were presented with existing and proposed paradigms and then asked to choose. In this case, cancer and adenocarcinoma labels were compared to noncancer labels, such as prostatic acinar neoplasm of low malignant potential (PAN-LMP), prostatic acinar neoplasm of uncertain malignant potential prostatic acinar neoplasm of uncertain malignant potential (PAN-UMP), and neoplasm, tumor or growth. (See below.)
Researchers report: “Across cohorts (194 healthy men, 159 partners, and 159 patients), non-cancer labels PAN-LMP or PAN-UMP and neoplasm, tumor or growth were favored over adenocarcinoma and cancer (p < 0.01), respectively. Switching adenocarcinoma and cancer labels to PAN-LMP and growth, respectively, increased AS choice by up to 17%: healthy men (15% [95CI 10-20%], from 76% to 91%, p < 0.001), partners (17% [95CI 12-24%], from 65% to 82%, p < 0.001) and patients (7% [95CI 4-12%], from 75% to 82%, p = 0.063)
The researchers explained: “A disease can be innocuous, but labeling is not. To most people, the word ‘cancer; conveys an aggressive and lethal malady, with subsequent emotional responses that may be amplified and mismatched to its oncological risk.”
I can personally vouch for those reactions to the “C-word” and from conversations with other patients. Even if a urologist says we have been diagnosed with a low-risk Gleason 6 cancer, we tend to focus on the word CANCER.
About one-third of the over million men diagnosed worldwide with prostate cancer fall into the low-risk group. In the U.S., 40% of these men are still treated with surgery or radiation and face potentially life-changing side effects, according to the American Urological Association. Things have improved since I was diagnosed in 2010, when 90% or more of us were treated, but there still is a long way to go.
In Sweden, the United Kingdom, and the state of Michigan, fewer than 10% of these men undergo aggressive treatment.
Berlin et al. note that the study’s “Main limitation is the theoretical nature of questions perhaps leading to less realistic choices.”
“‘Cancer’ labels negatively impact perceptions and decision-making regarding Gleason Grade 1 [AKA Gleason 6]. Relabeling (i.e. avoiding the word ‘cancer’) increases the proclivity for AS and would likely improve public health,” the Berlin group concludes.
Critics of relabeling Gleason, such as famed pathologist Jonathan Epstein, MD, of Johns Hopkins, say these lesions look like a cancer so it should be labeled as a cancer. Proponents of relabeling, led by urological-oncologist Scott Eggener, MD, of UChicago, contend that Gleason 6 may look like a cancer, but it doesn’t act like one because it doesn’t kill and doesn’t spread.
Opponents argue that the cancer label will scare men into staying on active surveillance. Proponents contend that dropping the cancer moniker will reduce emotional distress, including anxiety and stress, and also financial toxicity, such as job and insurance discrimination.
Berlin (like me) also is a member of the Eggener 6, which last year re-opened the debate on renaming Gleason 6 with the article “Low-Grade Prostate Cancer: Time to Stop Calling It Cancer,” in the Journal of Clinical Oncology. The piece was the most-read article in the JCO in 2022.
The Epstein 2 presented the opposing position in “Renaming Gleason Score 6 Prostate to Noncancer: A Flawed Idea Scientifically and for Patient Care” in the Journal of Clinical Oncology.
AnCan Foundation, other patient support groups, and three physicians, including Berlin, ran a survey of more than 450 patients—presented as a poster in February at the American Society of Clinical Oncology Genitourinary Symposium—that found that only 5% of patients would drop surveillance if Gleason 6 were no longer labeled a cancer. 82% said they would stick with their surveillance programs.
(A rose is a rose is a rose. But is a ‘cancer’ is a cancer is a cancer? Maybe not? Photo by Howard Wolinsky)
The Cancer Name Game: PAN-UMP, PAN-LMP vs. ‘precancerous lesion’
By Howard Wolinsky
If the cancer moniker is ever dropped, doctors ought to delve more deeply into what name patients prefer to make the diagnosis more palatable.
The Berlin 14 (see above) said prostatic acinar neoplasm of low malignant potential (PAN-LMP), prostatic acinar neoplasm of uncertain malignant potential prostatic acinar neoplasm of uncertain malignant potential (PAN-UMP), and neoplasm, tumor or growth are the most popular choices among physicians.
A survey of more than 450 patients conducted by AnCan and other patient support groups found that if Gleason 6 were reclassified, most patients (52%) would prefer if it were referred to as a “precancerous lesion” followed by 11% favoring “benign prostatic neoplasia (BPN)” and 9% “age-related prostatic neoplasia (ARPN).”
One of the key concerns of pathologists, urologists and radiation
oncologists is that patients will drop surveillance if Gleason 6 is
downgraded as a noncancer. But the survey showed that an overwhelming
over 80% of these patients say they would continue on active surveillance while
only 5% said they would stop surveillance.
If Gleason 6 were reclassified, most patients (52%) would prefer if it were
referred to as a “precancerous lesion” followed by 11% favoring “benign
prostatic neoplasia (BPN)” and 9% “age-related prostatic neoplasia
(ARPN).”
Genomics guru Dr. Todd Morgan holding AnCan webinar July 31
By Howard Wolinsky
Todd Morgan, MD, Chief of the Division of Urologic Oncology at the University of Michigan, is presenting a webinar for the AnCan Foundation at 8-9:30 p.m. July 31 entitled “How and why PCa genomic tests work … What’s Inside the Black Box?”
To register, go to: https://attendee.gotowebinar.com/register/2818379687157097308
The program is aimed at the full spectrum of patients with prostate cancer, from low-risk to high-risk.
Morgan will cover the difference between inherited and somatic testing, who should undergo genomic testing, and his upcoming randomized trial comparing the leading genomic tests, Decipher, Prolaris, and Oncotype DX.
Please send your questions, comments and feedback to: joeg@ancan.org
(Dr. Todd Morgan, Michigan Medicine. Go Blue!)
Morgan has served on several national guideline committees, including the American Urological Association’s Advanced Prostate Cancer Guidelines, the National Comprehensive Cancer Network’s Prostate Cancer Early Detection Guidelines, the American Society for Clinical Oncology’s Localized Prostate Cancer Guidelines, and the ASCO Molecular Markers for Prostate Cancer Guidelines.