'Cancer' Label for Low-Risk Prostate Lesions? Patients Split

Jake Remaly

February 21, 2023

For more than a decade, physicians have debated whether a type of low-risk prostate cancer ought to be called something other than "cancer."

Prostate cancer with a Gleason score of 6 does not act like many other malignancies. Such tumors are not likely to spread or harm patients, for starters. Labeling them "cancer" may provoke anxiety, lead to unnecessary treatment and side effects, and jeopardize life insurance coverage, proponents of changing the name say.

Patients and clinicians are increasingly forgoing treatment of these low-risk lesions and are opting for active surveillance instead.

New research presented February 16 at the Genitourinary Cancers Symposium (GUCS) 2023 sheds light ― a little, at least ― on patients' perspectives on the renaming question.

In short, they are split: 35% of patients favored renaming Gleason 6 as a noncancer, whereas 35% were opposed. Another 30% were undecided, according to a news release from the researchers about their findings.

A separate survey of pathologists shows that they generally think the cancer label should stay. Among members of the Genitourinary Pathology Society who answered a similar question, nearly 82% opposed removing the cancer label, while about 14% said they would support a change, according to results published in the February issue of Urologic Oncology: Seminars and Original Investigations.

What Patients Think

For the patient survey, several patient organizations invited recipients of their email lists to answer 40 questions related to Gleason 6 cancer. They received responses from 462 men who were undergoing active surveillance for prostate cancer or had been in the past.

If the condition were to be renamed, 83% said they would still follow an active surveillance protocol, while 5% said they would abandon the approach. Another 12% said they were undecided.

The survey also touched on the financial and mental health ramifications of the cancer diagnosis: 16% of men said they had encountered insurance rate hikes or had been denied renewal of policies, mostly for term life insurance; and more than 90% had not been screened for mental health problems.

"I have seen and heard routinely the fear and mental distress in the eyes and voices of men who have difficulty accepting the idea that they can live with their 'cancers' and won't die from them," study co-author Howard Wolinsky said in the news release. Wolinsky is a patient advocate in Chicago who moderates support groups and edits the Substack newsletter, The Active Surveillor.

The patient questionnaire was distributed by AnCan Foundation's Active Surveillance Virtual Support Group, Active Surveillance Patients International, Prostate Cancer Support Canada, and The Active Surveillor.

"A Flawed Idea"

The surveys highlight patient and pathologist perspectives on the cancer-label debate, which flared up last year with the publication of dueling perspectives in the Journal of Clinical Oncology.

In April, Scott Eggener, MD, vice chair of urology at UChicago Medicine, Wolinsky, and their co-authors made their case for no longer considering disease of Gleason score 6 to be cancer.

In June, Jonathan I. Epstein, MD, professor of pathology, oncology, and urology at the Johns Hopkins School of Medicine in Baltimore, and Adam S. Kibel, MD, chief of urologic surgery at Brigham and Women's Hospital in Boston, wrote a response, arguing that calling the condition noncancer was "a flawed idea scientifically and for patient care."

Epstein and Eggener continued the discussion on a recent episode of the Healthcare Unfiltered podcast.

The host, Chadi Nabhan, MD, MBA, noted that when treating patients with other types of cancer ― such as certain low-grade lymphomas― he might observe patients initially, rather than treat.

"I can understand that just because you don't do anything right away, you don't abandon the name 'cancer' immediately," Nabhan said.

Some patients with Gleason score 6 cancer ultimately are found to have a higher-risk form of prostate cancer when they seek a second opinion or when subsequent biopsies sample more concerning areas of the prostate, Epstein noted.

Epstein acknowledged that patients with low-risk cancer should understand that the lesions are low risk. To that end, he has started using a Grade Group system in which a Gleason score of 6 is in Grade Group 1, so patients more intuitively understand that they have the lowest possible grade of cancer, he said on the podcast.

At the same time, patients increasingly are adopting active surveillance, and advances in MRI have dramatically improved physicians' ability to detect higher-risk disease. "I think this conversation would have had even more impact 10 years ago when active surveillance was not being adopted," Epstein said.

Eggener and Epstein agreed that more patients in the United States who are candidates for active surveillance should adopt this approach. But patients would embrace active surveillance even without the "cancer" label, according to Eggener.

"Basically, every prostate cancer expert over the last 5 to 10 years would say we are looking for ways and reasons not to diagnose men with Gleason 6 prostate cancer," he said on the podcast. "I tell guys fairly regularly I wish I could undiagnose their Gleason 6 because now they're tortured with the label of a cancer."

The patient survey was funded by the AnCan Foundation. Wolinsky is a frequent contributor to Medscape Medical News.

Genitourinary Cancers Symposium (GUCS) 2023.

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