When is a cancer not a cancer? Wall Street Journal asks as the Gleason 6 debate goes mainstream

What do patients have to say?

Jan 25, 2024

By Howard Wolinsky

The idea of renaming Gleason 6 as a noncancer has been knocking around for more than a decade. I first explored it in 2013 in Chicago Medicine Magazine as part of a broader discussion of renaming what one of my doctors calls “lame cancers” that don’t act like cancers. The idea wasn’t brand-new then.

In the past three years, the debate has been bubbling up in online medical publications, such as MedPage Today in 2021 along with medical journals and at scientific meetings.

Now the Gleason 6 (Grade Group 1) debate has gone from an obscure academic dustup to the mainstream: The Wall Street Journal. (Subscription required.)

I can’t wait for Rolling Stone to take it on. With so many aging rockers being diagnosed with prostate cancer. including Frank Zappa, Rod Stewart, Elton John, Tim Commerford of Rage Against the Machine, and Duran Duran’s Andy Taylor, Rolling Stone could well create a full-time prostate cancer beat. Still waiting for a rock star to speak out for active surveillance.

On Jan. 25, WSJ writer Sumathi Reddy posed the question “When is cancer not cancer?” I should note that Reddy spoke to many experts on both sides of this issue, but sadly she quoted no patients.

Patients actually like urologists and pathologists are divided on the name change issue.

Reddy’s article focuses on pure Gleason 6/GG1, which some experts such as Dr. Scott Eggener, of the University of Chicago, champion for the name change to a noncancer because it virtually never spreads and never kills. (Eggener put me on AS 13 years ago.)

Some GG1 prostate cancers do develop into more aggressive types of cancer, so it's important to monitor the condition if you don't initially opt for surgery or radiation, Dr. Matthew Cooperberg, a professor of urology at the University of California, San Francisco, told Reddy. Cooperberg is part of the group pushing for the name change, which includes me. I call us the Eggener 6.

But I can tell you, as a patient and a moderator of support groups for lower-risk patients on Active Surveillance, once you are diagnosed your life changes. You can experience emotional distress, especially PSA Anxiety and ScANXIETY, and financial toxicity. Eight companies declined me term-insurance coverage because I opted NOT TO TREAT MY '“CANCER.”

Reddy wrote: “A growing number of doctors are advocating what might seem like an unusual position: That low-grade prostate cancers that grow very slowly or not at all shouldn't be called cancer or carcinoma.”

Surveys show urologists, who care for patients, are split down the middle on this issue. Pathologists oppose the change by a margin of about 9-1.

Many urologists say low-grade cancer looks under the microscope like a real cancer but in their experience doesn’t act like an aggressive cancer. They see Gleason 6 as a Sleepy Lion, as something that happens when we age.

The vast majority of pathologists, who determine how aggressive our cancers might be based on Gleason scores, and many urologists think that if a lesion looks like a cancer, it’s cancer. They see Gleason 6 as a potential Snarling Tiger.

Would you stop surveillance if Gleason 6 were downgraded as a cancer threat?

There is an underlying issue here: Many urologists believe men with Gleason 6 will stop active surveillance, with careful monitoring with PSAs, MRIs and biopsies, and will go on their merry way. and put themselves at risk for undetected aggressive cancers,

Those supporting the status quo bring up medico-legal worries. If patients quit active surveillance and develop advanced cancers, will the urologist be slammed with malpractice suits?

Dr. Adam Kibel, chair of urology at Brigham and Women's Hospital in Boston, has been using this argument to oppose a name change. Patients may be less likely to show up for active surveillance without the "cancer" diagnosis, he said in the Journal.

In other words, in a paternal way, doctors don’t trust us to make the right decisions about surveillance.

About 40% to 60% of men have poor follow-up with active surveillance when you tell them they have a form of cancer that doesn't cause harm, Kibel said. "What's going to happen when we say they don't have prostate cancer?" he says. "I think it's going to go up."

He also worries that insurance providers may stop paying for tests used in active surveillance, like MRI tests.

Kibel and famed uropathologist Jonathan Epstein, of Johns Hopkins, in 2022 presented these arguments in the prestigious Journal of Clinical Oncology. The Eggener 6 presented the case favoring a name change in the medical journal. (FYI: Ours was the best-red article in the journal in 2022.)

What do patients think? Reporter Reddy and Kibel don’t say. The Eggener 6 group asked me about the issue and made some logical assumptions about emotional distress and financial toxicity.

But there were no data.

So I co-led a group of support group members and prostate cancer experts that surveyed 460 current or former AS patients. We found that ONLY 5% of men said they would leave surveillance if doctors stopped calling Gleason 6/GG 1 a cancer. And a whopping 82% said they would stay on surveillance. The remainder were undecided.

The American Society of Clinical Oncology last year accepted our survey to presented at the meeting in San Francisco. Also, I presented the findings at an all-day debate on the issue hosted by proponents Eggener and Cooperberg but representing all sides,

Dr. Kibel spoke but apparently somehow missed my presentation. on how patients thought they would react to a name change.

Meanwhile, he is setting up straw men, misrepresenting the opposing position and ignoring the only data we have on what patients say they would do if Gleason 6 were downgraded to a noncancer,

He can brush up on the study in a letter I published in the Journal of the National Cancer Institute: https://academic.oup.com/jnci/article/115/10/1236/7243176?login=false

Also, check out this editorial calling for patient involvement in the debate: https://academic.oup.com/jnci/article/115/11/1249/7226149

Patients with Gleason 6 need to be included in this debate.

A name change wouldn't be unprecedented. Certain other forms of thyroid, cervical and bladder cancers have been reclassified, sometimes partly to avoid scaring people about cancers that are unlikely to spread.

"The word 'cancer' engenders so much anxiety and fear," Dr. Laura Esserman, a professor of surgery and radiology at the University of California, San Francisco and director of its Breast Care Center, told the Journal. She is advocating for a type of lower-risk breast cancer to be renamed. "Patients think if I don't do something tomorrow, this is going to kill me. In fact, that's not true,” she said.

Dr. David Penson, professor and chair of the Vanderbilt University Medical Center, told the Journal that about one in five of his patients with low-grade prostate cancer will insist on surgery or radiation, no matter what he advises.

"They look at me and say, 'I have cancer, it has to be treated.'"

With a different name, such as a premalignant lesion, patients would be alerted that it's not a completely normal or benign condition but they wouldn't be scared by the word "cancer."

"If you make that sort of nomenclature change, people may be more open to the idea of accepting active surveillance," he said.

Let me know what you think: mailto:pros8canswers@gmail.com

Meanwhile, what does the uro-heretic have to say to WSJ?

Dr. Bert Vorstman, the uro-heretic, responded to the Journal:

The business of prostate cancer testing and treatment is a public health disaster for several reasons. 1. PSA testing for prostate cancer is associated with a 78 percent false-positive rate. 2. The common grade 3 “cancer” as in the Gleason, 3+3 = 6 “cancer” was initially thought to be a low-grade, low risk or mild cancer purely on the basis of its low-power microscopic appearances. Years later, however, it was determined by several investigators that the genetic pathways for cancer development and spread for the grade 3 were inactive. Therefore, with inactive genetic pathways for cancer development and spread the grade 3 is not a cancer.

Additionally, there's no there's no evidence that the grade 3 genetic pathways can routinely activate and transform into a higher grade or meaningful cancer. 3. Many prostate cancers have extremely sluggish growth rates with a mean cell doubling time of 479 +/- 56 days. This rate of cell division means that it can take some 40 years or more for the growth to reach 1 cm in diameter from the time of cell mutation.

4. Only the 10 to 15 percent of high-grade prostate cancers are responsible for the 30,000 or so US deaths annually. 5. Urologists’ own studies have shown that whether the whole prostate gland was treated with surgery, radiation or untreated and monitored by active surveillance, the 10 and 15 years survivals were similar for each group. In other words, whether you had surgery, radiation or no treatment, survival was similar at 15 years - except the treated were often harmed.

Watch this Sunday for a piece by Dr. Vorstman, one of TheActiveSurveillor.com’s most popular guest columnists, and Ron Piani, co-author of “The Great Prostate Hoax.”

Still time to join an ASPI webinar on genomics at 12-1:30 p.m. on Saturday January 27.

REGISTER FOR ZOOM

Christina Nakamoto, Medical Science Liaison for Urology at Myriad Genetics, will discuss the benefits of medical-grade, genetic tests and how testing can provide personalized information about a patient's prostate cancer in facilitating an informed shared decision-making process between the patient and his medical team on Active Surveillance and/or other treatment options. Michael Glode, MD, who serves on ASPI's Medical Advisory Committee, will join the discussion and field questions during a Q &A session. Send your questions in advance to contactus@aspatients.org.

Register for ZERO’s March AS webinar

By Howard Wolinsky

For the past three years, colleagues and I have run a special Active Surveillance support group for ZERO. We need your support to stand up for the AS clan.

Be there, or be square.

Please sign up for the program at 11 a.m. Eastern on March 12, 2024.

Register in advance:
https://us02web.zoom.us/meeting/register/tZUsfuqgrjIoG9AWf7voMhzT_UjdqbQQbQPA