'Eggener 6' tilting at removing the 'cancer' diagnosis from Gleason 6 diagnosis

'Dreaming the Impossible Dream' with me

By Howard Wolinsky

In late 2010, Scott Eggener, MD, a University of Chicago urologist, saved me from a radical prostatectomy recommended by a community-based urologist and declared that I was the “poster boy for active surveillance” for low-risk prostate “cancer.” 

So far, so good.

Eggener put me on active surveillance, a close monitoring program with PSAs, MRIs, digital rectal exams and biopsies. There I have remained for 12 years as of  2022. I will celebrate my “pros mitzvah” in 2023.

A pathologist said I had a Gleason 6 “cancer” in a single core of 14 in a transrectal biopsy. The tiny tissue amount scored the lowest on the cancer scale, a Gleason 6, on the ground floor, the entry point into prostate cancerdom.

I use the word “cancer” in quotes quite deliberately. Back then, Eggener told me some doctors like him thought Gleason 6 was not even cancer or possibly precancerous at most/

I bought the argument and have had no worries about cancer at all. “Anxious surveillance” is in my vocabulary, but I don’t self-apply it.

However, I have experienced financial toxicity from the diagnosis. In 2013, my $500,000 term life policy expired. I always had the lowest rates. Suddenly, I had the C-word attached to my name, and my insurer wanted nothing to do with me after collecting $200 monthly premiums for more than a decade. My insurance agent tried seven other companies. All declined coverage. My indolent cancer was too hot to handle.

Insurance practice is not the same to medical practice.

Eggener tried to persuade my original company that I would never die from this so-called cancer. Of course, these arguments fell on deaf ears. But in the end, the company relented a little and gave me a policy with the same premium but coverage reduced by $400,000.

Not a good or even a fair deal from an unformed company wearing blinders. I took what I could. What would you do?

(I recently filed a complaint with the Illinois Department of Insurance and lost. I got diagnosed with a non-cancer and ended up with inflated insurance rates and declined coverage.)

My single core of “cancer” was never seen again in the intervening years. But I am stuck with the cancer diagnosis.

Some patients told me they, too, had felt the very personal impact of Gleason 6 discrimination. In this newsletter, I reported on this sad state in an article entitled “Lies, Dirty Lies, and Insurance Discimination.”

Another patient told me he got tossed into a more expensive, higher-risk group for his health insurance. Many others told me they keep their diagnosis of Gleason 6 cancer secret for fear of discrimination on the job or from clients. One is a high-ranking officer in a financial concern and feared the news could trigger a succession plan.

A Gleason 6 diagnosis is good news, but it has a dark underside due to the cancer diagnosis. This is a scandal to which no one is paying attention.

I wish the pathology community, amongst the smartest of the smart doctors, could walk a mile with a Gleason 6  “cancer diagnosis” diagnosis and experience the real-world impact of “cancer” discrimination.

(Scott Eggener, MD)

A year ago, I called Eggener on the 10th anniversary of my diagnosis. He congratulated me and said: “I saved you from radical surgery, but I wish I could have saved you from all the biopsies.” Me, too.

He told me he was planning to launch a campaign to remove the Big C classification from Gleason 6. I wrote about this in MedPageToday.

I asked Eggener, who has been in practice for 13 years and was probably the first in Chicago routinely put patients on AS, why he took on this campaign in the face of likely overwhelming opposition from throughout the cancer world.

He said he is following his medical oath “to do no harm.” Also, he felt it was the right thing to do, as actor Wilford Brimley used to say in TV commercials for oatmeal.

"It wasn’t really an AHA moment. It was just kind of a resolving progressive thought process I had based on seeing thousands of patients and the data that‘s been released over the years or decades and thinking it through from a 10,000-foot level. It just started to become obvious to me that in my opinion, Gleason 6 doesn’t meet the criteria of clinical cancer,” Eggener said. 

“And I used to tell my friends about it privately: If you don’t agree with me – I’m going to start saying it in public a few times. Now I’m ready to shout it from the rooftops because I think the data is overwhelming and very sensible and logical. But I also understand there are a lot of people who disagree. A lot of smart people disagree. Just because we’ve always done it this way, it doesn’t mean it should continue. But I think it’s a really patient-centered, evidence-based conversation that we should be having.”

 Eggener told me a “shitstorm” is coming. I can feel it already as I ask doctors about this idea. (I will print some comments soon.)

He recruited some other top guns in the AS space: urologist Matt Cooperberg, MD, of UCSF, radiation oncologist Alejandro Berlin, MD, of Princess Margaret Cancer Centre in Toronto, biostatistician Andrew Vickers, PhD, of Memorial Sloan Kettering Center, and pathologist Gladell P. Paner, MD, of UChicago.

Eggener also invited me to be a co-author. He joked I was beginning my academic career in my mid-70s.

But I have written for medical journals previously. I was the U.S. correspondent for the Lancet and wrote for the Annals of Internal Medicine. These were mainly articles about the politics and economics of medicine, which I studied as a journalism fellow at the University of Michigan. (Go Blue.)

This is the first time I teamed up with doctors on a scientific report.

It was fun seeing the paper take shape as the doctors challenged each other and discussed and debated the documentation for Gleason 6 to be a noncancer or a precancer. How far could they/we go?

I mainly offered the patient perspective. I recently did this on another huge study. The researchers ignored AS in the first data analysis. I asked if they had data for AS. They did. My question helped refocus a poster for a major medical meeting.

Are the Eggener 6 the Don Quixotes of urology, challenging the conventional wisdom on Gleason 6 and possibly tilting at windmills? Our merry crew is about to go through the inquisition by experts throughout cancerdom.

I called Dr. Jonathan Epstein of Johns Hopkins, the world’s leading authority on reading biopsies slides. 

(He’s read mine and very likely yours. He reads slides for well over 10,000 patients per year.)

He declined to comment because he was invited to write a rebuttal for JCO.

But I interviewed him about this topic last year for MedPageToday.

Epstein told me he is sticking with the cancer designation for Grade Group 1/Gleason 6: "Morphologically and genetically, Gleason score 6 is cancer with the ability to invade tissues. If one could have a crystal ball and say that when Gleason score 6 is seen on biopsy, there is only Gleason 6 in the prostate, then I would feel that one could reclassify Gleason score 6 cancer as 'noncancer.'

"However, biopsy Gleason score underestimates disease grade and extent in a significant percentage of cases. Although multiparametric MRI leads to decreased undergrading, it still exists even with improved imaging. If Gleason 6 on biopsy were not labeled as cancer, the potential for higher-grade or more extensive disease might be ignored, and physician recommendations (or compliance with recommendations) for immediate treatment or careful monitoring when appropriate might not occur."

So, I am poised for an academic-style gunfight in the O.K. Corral. Dignified and classy? Or down in the dirt?

I can say I already see some name-calling. And several docs made me feel a bit uncomfortable by describing the report as “your paper.” I didn’t do it on my own. A prominent pathologist told me Epstein would clean our clocks.

(By the way, I am not speaking for any organization, just speaking for myself when I call for a change in the cancer designation. This has been done previously with other non-aggressive prostate cancers.)

It’s a good time to air these issues as increasing numbers of patients are going on AS. 

The paper will be released at 4 p.m. Eastern on Monday. We’re not ducking for cover.

Let’s hope patients will be helped in the end.

Meanwhile, tell me in this survey whether you have had insurance issues. Or send me a note: howard.wolinsky@gmail.com

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