By Howard Wolinsky
Last week, several top prostate docs and I co-authored an article in The Journal of Clinical Urology about relabeling Gleason 6 “cancer” as noncancerous to spare men from anxious surveillance and financial toxicity.
(Here’s a Fox News report: https://www.fox13news.com/video/1060027)
Medical oncologist Mark Scholz, co-founder of the Prostate Cancer Research Institute in Marina del Rey, California, thinks the cancer talk on Gleason 6 ought to end.
Scholz, co-author of “The Invasion of the Prostate Snatchers” told me: “The word “cancer” has technical implications in the medical world that are related to its cellular appearance under the microscope and its capacity for unregulated growth. The same word ‘cancer’ has a quite different and very clear meaning to the general public—it means “metastases and death.’”
(Mark Scholz, MD)
“Close to 100,000 men in the US are terrified every year when informed that they have ‘grade 6 prostate cancer,’ a condition that has been proven to have zero metastatic potential. I entreat the powerful medical-industrial complex that makes billions of dollars every year treating prostate cancer to have a heart, to have mercy on the uninformed public, and stop calling this harmless entity ‘cancer.’”
Scott Eggener, MD, of the University of Chicago, lead author of the paper calling for an end to the cancer label for Gleason 6, isn’t ready to make any name recommendations. Not yet.
(Dr. Scott Eggener)
But I have been mulling over this topic and want to share some ideas and hear what you think.
(Dr. Brian Helfand)
Dr. Brian Helfand, my urologist, once said my cancer was lame and that if I had any less, I wouldn't have cancer at all. I suggest calling the lesion a “lameoidenoma.”
Eggener, my former urologist, refers to these Gleason 6s as “wimpy cancers.” So maybe a “wimpoidenoma”?
I wondered where Dr. Laurence Klotz of the University of Toronto, who named active surveillance, stood on the matter.
It turns out he supports the campaign but has taken a low profile.
“To make a long story short, I support the initiative, but I see it as mainly driven by political and practical considerations, not by science. The key problem is that a small proportion (2%) of Gleason 6 cancers have very adverse genomics and can be invasive, and therefore qualify as cancers. For analogous lesions in other sites, i.e. bladder, it is 0%.
“The term I favor is prostatic neoplasm of low-malignant potential. PNLMP.”
The term Active Surveillance, which Klotz coined 30 years ago, was marketing genius.
But pin-lump?
(Dr. George Lundberg)
Dr. George Lundberg, a pathologist and the famed former editor of JAMA, said of the Gleason 6 tumors: "The fear is that a 'real cancer' might pop up later, so calling Gleason 6 cancer probably more reflects sampling error than a change in cancer called Gleason 6."
He favors identifying these lesions as "incidentaloma" or "indolentoma." Incidental or indolent, or lazy.
(https://www.medpagetoday.com/special-reports/apatientsjourney/90601)
(Dr. Paul Schellhammer)
Dr. Paul Schellhammer, a cancer survivor and past president of the American Urological Association, favors dropping the cancer label:
“I personally think that removing the cancer label will, over time, have a very powerful effect. The dreaded phone call ‘I have cancer,’ or “Dad has cancer’ won’t be preemptively setting the stage in a negative direction and very uphill climb towards AS discussion/recommendation.”
He said pathologists, who decide Gleason scores, may be more comfortable using a label with which they are comfortable. “You have a number of them trending towards this movement away from ‘cancer.’ ‘Dysplasia,’ a candidate?”
Dysplasia is the presence of cells of an abnormal type within a tissue, which may signify a stage preceding the development of cancer. Precancer is another possibility.
(Dr. Chris Bangma)
Dr. Chris Bangma, urology chair, Erasmus Medical Center in Rotterdam, Holland, introduced AS in Europe. The Dutch, like the Swedes, have achieved better than 90% participation in AS for qualified candidates vs. 60% in the U.S.
He said “If I have to invent a word other than PIN, or low-risk etc, it would be something like an acronym that fits emotions of people (unlike that in bladder cancer). I would go for something like: ’You have a PEACE lesion’….(Peace being something like: prostatic exception of active care …..), and would go for an intense marketing.”
Marketing indeed will be a key to success here.
As John Lennon said: “All we are saying is give PEACE a chance.”
(Tony Crispino)
I was speaking to Tony Crispino, super-advocate for prostate cancer patients, about relabeling Gleason 6 as noncancerous,
He opposes the idea and will be writing an essay about the reasons why soon in TheActiveSurveillor.com.
We discussed what the newly invented Gleason 6 would be named.
Tony asked me what I’d call the lesion.
I had two answers. The lameoidenma.
And I said I had decided to call my so-called prostate cancer ( a single core of Gleason 6 last seen in fall 2010) “Laurie,” after the grandfather of active surveillance, Klotz.
Tony asked: “Not, little Howard?” I explained that was something else.
When I told Klotz I had named my lesion “Laurie,” he responded: “Howard, I'm flattered.” A real gentleman.
What do you think we should call this lame lesion? Answer the survey here: https://www.surveymonkey.com/r/N2V2KTJ