In this post, I am addressing those of you who have been diagnosed with low-risk PCa (Gleason 3+3 (6) tumors who may have come upon a debate in the PCa medical community around the classification of Gleason 6 [1] as cancer. This debate has been ongoing for more than a decade.
I hadn’t planned to broach this ongoing debate if it were not for AS patients becoming aware, through support groups and surveys, of this discussion among doctors and specialists.
Some History
Know that, for those of you not particularly attuned to PCa in the 1990s and before, it was the norm for urologists to recommend, or patients to request, a radical prostatectomy, even with the lowest Gleason grade – upon hearing the "c" word, they just wanted it out. In the late 1990s, we know that doctors Klotz, Carter, Carroll, and Holloway, among others (please, no letters if I left anyone out!), were instrumental, either on their own or in sync with each other, in introducing the concept of Active Surveillance as an alternative to overtreatment of Gleason 6 diagnoses – mostly, removal of prostates.
Authors Mark Scholz, M.D. and patient Ralph H, Blum illuminated the push to eradicate these over treatments, or surgeries, in the MUST-READ book Invasion of the Prostate Snatchers.
“An indispensable map through the medical minefield of prostate cancer revised and updated with the latest developments in treatment options.” Make it stand out
Every year almost a quarter of a million confused and frightened American men are tossed into a prostate cancer cauldron stirred by salespeople representing a multibillion-dollar industry. Patients are too often rushed into a radical prostatectomy, a major operation that rarely prolongs life and more than half the time leaves them impotent. Invasion of the Prostate Snatchers argues that close monitoring—active surveillance rather than surgery or radiation—should be the initial treatment approach for many men at the low- and intermediate-risk stages.”
Fast forwarding to today, those newly diagnosed with PCa are now in the 60 percentile of choosing AS over treatment (it is purportedly 80% in Sweden and 90% in Michigan). As a patient, advocate, and activist for AS patients, I know that some doctors continue to recommend treatment (when the pathology points to low to favorable intermediate risk), often in the form of surgery – playing upon patients’ fears. We continue to hope that these doctors will become relics of the past.
And as a doctor recently remarked, it's all well and good that Active Surveillance is on the rise. However, he pointed out the stark reality that 40% of those diagnosed either choose not to pursue AS or, by being diagnosed with higher-grade cancer, must choose treatment from the outset. And, again, it’s still a daunting task to prevent some remaining percentage of newly diagnosed men with low-risk grade tumors from opting for or being led to overtreatment.
The American Urological Association made a slight course correction this past May 2022 in recommending to MDs to counsel patients diagnosed with "low to intermediate favorable risk" PCa to consider Active Surveillance as a first option instead of any treatments (Navigate to "Guidelines" in the Menu) A game changer? Perhaps. But, one can argue that doctors don't need to follow those guidelines. Comprende?
So, why, you may be thinking, am I bringing this Gleason 6 reclassification debate up in the first place? Why should you, as a patient who may already have been diagnosed with cancer with the lowest Gleason score possible – indolent and not likely to metastasize – be interested in an argument about re-classifying Gleason 6 to a non-cancer or one of several proposed labels floating out there?
Patients are becoming aware of the debate through support groups and online forums. Many — who may not be in on the history of the Gleason score or paying attention to reasoned arguments for and against reclassification (which I’ve provided below) —- are now being asked for their feelings and opinions on the matter. I, as another patient, don’t understand what my opinion would be used for, or why it would matter. If I had been told in 2018 that I had some pre-cancerous biopsy cores, I wonder how certain procedures in Active Surveillance’s monitoring costs would be covered by my health insurance. Would health insurers cover biomarker tests such as MRIs, or even genomic tests, to name a few?
Frankly, I’d love to hear more from those patients who have their opinions and feelings on various other topics, some of which I talk to men about daily - ranging from confusing and conflicting protocols to “does BPH equal cancer?”; “why should I consult with an oncologist?” to “is this new machine called a MicroUltrasound going to replace the MRI?”; or “should I be getting a biopsy every two years or five years - and is a systematic biopsy the same as a random?”; or, “why isn’t my health insurance covering…?” [this or that].
Again, what do you, the patient, care about the most?
Is it cancer or a non-cancer? [“Is she your sister or your daughter” (visual: Jack Nicholson slapping Faye Dunaway for those old enough to have seen Chinatown.)]
I have spoken with - and continue to ask - those in the Prostate Cancer medical community their thoughts on the matter. I have also read various reporters’ interviews of doctors on both sides - some of whom are PCa “familiar” names - Laurence Klotz, Peter Carroll, and William Catalona, among others. I believe the unanswered question is: how do doctors frame their patients’ diagnoses to them? Do they use the “c” word with the same severity in talking about Gleason 6s as they do with Gleason 8s or 9s? Or, heaven forbid, metastatic disease? How can doctors play a role in managing their patients’ anxieties and fears with ANY diagnoses? A welcome addition to guidelines, in my opinion, would be an addendum that would instruct providers to carefully explain in layman’s language, which patients can easily understand, the nature of their Gleason scores, whether they be Gleason 6, 7, 8, or 9. Grade 1- that it does NOT metastasize and that diligent monitoring on Active Surveillance for such a low-risk diagnosis is considered a preferred management protocol; Grade 4 - that needs attention - more likely than not - soon.
Please give them the science and proven statistics. Why scare them, or say something you know creates fear? Because it’s a great motivator? What, to live? Gimme a break. I’m not positing that MDs need to play shrinks when they don't specifically have that training, but how about learning some plain old-fashioned communication skills which give patients the truth to make informed decisions without projecting what they think on their patients? I sure as hell didn’t appreciate my mom’s doctor over ten tears ago giving her an exact date by which she’d be dead. She ended up living several months past that and enjoyed life one day at a time. Folks, that’s how it goes.
I encourage patients to read as much as possible to be fully informed about this discussion. One size does not fit all - meaning that one person’s diagnosis at, let’s say, a young age may not equal that of someone older. Or other factors may come into play, such as family history, genetic testing (if recommended), race (percentages of African American men who might be at higher risk for PCa than others), and so on. Stay informed, and ask questions. Because I still do!
Here are some resources which may enlighten you on this debate. I selected them from a variety of articles and studies - feel free to seek others. I hope, though, that these will begin to adequately represent both sides of the issue.
Click on this link to read a 2012 study with former Johns Hopkins MD Ballantine Carter weighing in as an author. Laurence Klotz and Jonathan Epstein also opined on opposite sides of the aisle in 2013:
More recently, in this past year, arguments for and against reclassification:
Low-Grade Prostate Cancer: Time to Stop Calling It Cancer
v.
Renaming Gleason Score 6 Prostate to Noncancer: A Flawed Idea Scientifically and for Patient Care
Last month, I communicated with a pathologist about some verbiage put out to some AS patients: “those who say it should be called cancer reference that Gleason 6 cancer can become Gleason 7 or higher in some cases….” This statement struck me as a bit misleading - we’ve known for a while that if you have a Gleason 6 tumor, that tumor will not grow nor metastasize. AS has always been about monitoring for more aggressive cancers if suspicious lesions appear in a regularly scheduled MRI and cancer is ultimately found in subsequent biopsies. Gleason 6s don’t suddenly morph into 7s or higher; yes, there is a small percentage of Gleason 6 scores misclassified. But that’s why you get second, even third opinions.
The pathologist who I referenced above sent me the following note:
“That statement [Gleason 6 cancer can become Gleason 7} is poorly phrased from the pathology point of view. When you biopsy a lesion, only [a] small proportion of it is sampled; it may or may not represent the entire grade. After prostatectomy, when the entire tumor is out, we see everything, and that’s why we may see higher grade tumor that was not sampled on biopsy.”
I think Dan Sperling in Florida puts it best on his website. Citing various studies, he writes: “….. it becomes obvious that conclusive evidence as to whether Gleason 3+3 cancer behaves like cancer is not yet to be had.”
Even though AUA guidelines call for Active Surveillance to be preferred for low and intermediately favorable cancer, as I discussed above, there remain urologists - many, though not all, in small practices in rural communities who convey ambivalence or straight out advise patients that if they don’t want to think about it, they can have their prostate removed. Again, as I said above, much of the debate lies in how the diagnosis is currently communicated to the patient and how even the mention of the “c” word can cause instant anxiety when one is facing a low-risk, Grade 1 diagnosis, which is easily monitored with AS and a change in nutritional and exercise lifestyle.
One of the concerns voiced by those who maintain that Gleason 6 has all the hallmarks of cancer (for the reasons you can listen to and read about) is that men will tend not to monitor themselves, perhaps risking aggressive cancers later on, which would have been identified if some surveillance were in place. This is a question that indeed needs to be discussed.
Please watch for any developments on this matter.
In the end, my goal always is to be on the patient's side and to give you the data to make informed decisions. So now you have links to the debate arguments if you want to ponder the question if faced with it. “In case of dissension, never dare to judge till you've heard the other side.”
― Euripides.
Until next time,
Stay well, eat healthily, and don't forget to exercise!
Glossary:
[1] Gleason 6 “The definition and clinical relevance of Gleason 6 prostate cancer have changed substantially since its introduction nearly 50 years ago. A high proportion of screen-detected cancers are Gleason 6, and the metastatic potential is negligible. Dramatically reducing the diagnosis and treatment of Gleason 6 disease is likely to have a favorable impact on the net benefit of prostate cancer screening.”
https://www.auajournals.org/doi/10.1016/j.juro.2015.01.126
Coming soon: the latest on transperineal biopsies!
