In January 2021, a movement to redefine low-risk Gleason 6 lesions as noncancers or precancers made its debut in this blog under the headline: "Is This Really Cancer?"
Urologic oncologist Scott Eggener, MD, vice chair of urology at University of Chicago Medicine, threw down the gauntlet, saying Gleason 6 lesions may resemble cancers, but don't act like cancers. In other words, "pure Gleason 6" lesions don't spread and don't kill.
About half of urologists agree with this idea, Eggener has told me. He, along with one other urologic oncologist, one radiation oncologist, one pathologist, one biostatistician, and me (a 13-year veteran patient of active surveillance [AS] for low-grade prostate) published our arguments in the (JCO): "Low-Grade Prostate Cancer: Time to Stop Calling It Cancer."
(I refer to our group as the Eggener Six. Our article was the top-mentioned article in the journal in 2022, according to a from JCO.)
A , "Renaming Gleason Score 6 Prostate to Noncancer: A Flawed Idea Scientifically and for Patient Care," came from urologic pathologist Jonathan Epstein, MD, top-gun second-opinion provider at Johns Hopkins University, and Adam Kibel, MD, chief of urology at Brigham and Women's Hospital -- the Epstein Two, if I may.
Epstein supports the AS strategy, but he told me he can only say there is a "pure Gleason 6 at RP (radical prostatectomy) when you can see the whole tumor," but not when a 3+3 (Gleason 6/Gleason Grade 1) is found on biopsy.
That's a high bar. It's one supported by the vast majority of pathologists (up to 82%, according to ) and about half of urologists, who worry about more advanced cancers being found too late and also about potential lawsuits for potentially overlooking high-grade cancers.
Eggener told me he is playing the long game of changing opinions in the years ahead as "a career goal."
The controversy appeared in mainstream media outlets including the , , network channels around the country, , , and the . So, countless patients have been informed about what would ordinarily remain a rather academic debate.
A civil war has raged over the past year: urologist versus urologist, and pathologist versus urologist. Claims and counter-claims have been exchanged over histology, morphology, molecular biology, and best practices for patient care.
But for so long, the voices of those most impacted by the debate were not heard.
We are hundreds of thousands of patients with low-grade Gleason 6 prostate cancer who go on AS to avoid quality-of-life-altering side effects from surgery and radiation. Instead of accepting the risks of ruining our sex lives and wearing diapers, we opt for potentially anxiety-provoking digital rectal exams, prostate-specific antigen (PSA) testing, multiparametric MRIs, biopsies, and genomic and germline testing required for AS. Some experience AS fatigue and opt to be treated.
But now, the perspectives of more than 450 current and former AS patients will finally be heard. Several advocates with prostate cancer representing major support groups, AnCan Foundation, Active Surveillance Patients International, Prostate Cancer Support Canada, and , conducted a survey last fall on patient opinions on renaming Gleason 6 as well as other controversies facing these men. The survey was patient-run, with input from two academic urologic oncologists and one academic radiation oncologist who helped develop the questionnaire. The results were presented on Thursday as a poster at the American Society of Clinical Oncology (ASCO) Genitourinary Cancers Symposium in San Francisco.
The Eggener Six say: Patients once considered to have cancer could now be told that their low-risk lesions are not cancerous if Gleason 6 was redefined. But of course, urologists are divided on this concept. And so are their patients.
The survey found that 35% of respondents favored renaming Gleason 6 as a noncancer, while another 35% of respondents opposed it. The other 30% were undecided.
The Epstein Two, along with some urologists, warned about low-risk patients abandoning AS if the lesions no longer carried the "cancer" label.
But our survey found the opposite to be the case: Only 5% of survey respondents said they would leave surveillance if they no longer carried a cancer diagnosis. 82% said they would stick with surveillance. The remaining 13% were undecided.
In our JCO paper, the Eggener Six noted, anecdotally, that patients can experience emotional distress from the uncertainty of being observed with surveillance; we also emphasized that patients can be confronted with financial toxicity through job and insurance discrimination.
In my experience, eight insurers refused to insure me because I opted to leave untreated my so-called cancer -- a single core of 1 mm of Gleason 6 that has been seen only once in 2010. I guess I'd had a bad prostate day.
The survey yielded previously unknown information on financial toxicity: 16% of respondents on AS reported they had encountered insurance rate hikes or outright denials because they had been diagnosed with Gleason 6. In most cases, the survey respondents reported that the denials and price increases were most often for applications for term life insurance, as well as hikes in prices for health insurance. Other insurance lines also were affected.
Eggener, my urologist at the time I encountered problems with an insurer, helped me in what proved to be a quixotic attempt to restore my preferred rates. Insurance underwriters seem to be unmovable.
The issue of emotional distress -- anxiety and depression -- gets little attention among the professionals who care for us. Major groups, including ASCO, the National Comprehensive Cancer Network, the American College of Surgeons, and the American Cancer Society, recommend that all cancer patients be screened for emotional distress.
The American Urological Association and the American Society for Radiation Oncology don't explicitly make this recommendation.
Yet, more than 90% of survey respondents did not recall having been screened for emotional distress. And as cofounder of support groups for men on AS, I have witnessed the fear and anxiety 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.
As the debate on Gleason 6 continues, physicians ought to listen to what patients are saying and not only address the Gleason 6 question but also find ways of tackling emotional distress and financial toxicity.
Howard Wolinsky is a Chicago-based medical writer. He has written the blog, "A Patient's Journey," for MedPage Today since 2016. He is the editor of the Substack newsletter, .