I am not a doctor. So maybe one of the docs can answer. But Gleason 6 is what pathologists call a cancer though that's in dispute. Prostatitis is an infection of the gland.
Exactly. Thus, what do pathologists say prostatitis cells look like. Is it that we don't know, because a diagnosis of prostatitis doesn't lead to biopsies. Are there any definitive studies of this. Where I'm headed with this is: Should Gleason 6 be called prostatitis instead of cancer; and be treated as such? Does untreated prostatitis allow cells to run amuck and turn into cancerous cells? To me, interesting questions that there don't seem to be any clear answers to. (But disclaimer: I'm just a layman, not a medical professional.)
Dr. Epstein, Respectfully; I fault you for falling into a trap that many medical professionals are in. That being; in the admirable effort to be technically correct, medical professionals fail to treat their patients holistically. I.E. what effects do your words and information have on the 75%-90% of the rest of the patient's life. The part of the patient's life outside your particular medical diagnosis. (E.G. once the word cancer is mentioned, you typically are longer able to actually get life insurance. Or your auto insurance is more expensive, or you don't qualify for the best interest rate on something because you are now in "a different risk category". That category being that "YOU MIGHT ACTUALLY DIE." during the life of the loan.) Yes, those practitioners of financial risk, will grasp at any piece of data, however remote, to enhance their financial bargaining position. And often the medical professional is used, unwittingly, to assist that effort.
A side bar: Howard, don't feel too bad about your life insurance experience; One time my life insurance became more expensive because my cholesterol was border line high. The underwriter encouraged the agent to not even write the policy because I would (in his words) probably die young. --well now I'm 67 and still going with my cholesterol under control--
And my experience with the 3 urologists I fired in during the journey was that their technical recommendations were so blatantly financially self serving as to be laughable at the time, if it wasn't for the fact that I was receiving and processing medical information that affected "ME". Now in hindsight, their recommendations are laughable, as I am an active patient rather than a passive patient. Researching, exploring, and testing all information and options.
I have used Jonathan Epstein MD many times for second opinions concerning prostate biopsy diagnoses. However, with respect, some of his viewpoints require challenges.
The Gleason grade 3 in the 3+3 = 6 was labeled as a low-grade cancer purely on the basis of its low power microscopic appearances - not its clinical behavior or molecular biology attributes.
The paper below includes a table comparing the grade 3 and the grade 4 for invasion and spread potential. Clearly, the grade 3 cell lacks the genetic mechanisms for invasion and spread. Therefore, the grade 3 lacks the hallmarks of a cancer.
Concerns about the potential for a higher grade on a subsequent biopsy simply underscores the fact that the ultrasound-guided needle biopsy of the prostate is grossly unscientific. The test is risky and samples blindly and randomly only about .1% of the prostate. Little wonder there is such an outrageous sampling error. And, let's not forget the rate of errors of interpretation amongst pathologists - see “The Rise and Fall of the Prostate Cancer Scam” by urologist Anthony Horan MD.
There were also concerns expressed about the possibility of a BRCA2 mutation, patients abandoning followup and perineurial invasion. I have yet to see hard data that shows any of these issues being responsible for significant morbidity and mortality.
The value of a well-done non-contrast MRI of the prostate interpreted by an expert is accepted currently, as the best screening tool for the 10-15 percent potentially lethal high-grade prostate cancers - signified by Pirads 4 and 5 areas. The MRI can also give us a handle as to tumor volume and whether or not there's any local invasion. The beauty of these MRIs is that they have the ability to ignore bogus disease. Sadly many urologists are combining all sorts of MRI studies with surveillance biopsies - risky drills that simply broadcast the fact that their MRI studies and interpretations are subpar.
Not only is PSA testing associated with an embarrassing 78 percent false positive rate - see “The Great Prostate Hoax” by R. Ablin PhD and Piana - but, urologists’ own clinical studies have shown that both PSA testing and prostate cancer surgery fail to save significant numbers of lives.
Finally, every step of the current prostate cancer patient journey should be challenged with the question, where is the irrefutable and reproducible scientific evidence for that recommendation? Especially, since John Ioannidis MD determined after his review of multiple healthcare studies that “most published research findings are false.” Its high time urologists dropped the false cancer label for the Gleason 6.
With Rob Wood's permission, I share his comment on renaming Gleason 6.
Yo Howard,
Those of us "lucky" ones with Gleason 6, Pirads scores up to 3, and non rising PSA (as well as those who are just outside these parameters) need to hope for advances and FDA approval of liquid biopsy testing performance in order to eliminate or significantly reduce the need for recurrent biopsies (as called for above by Epstein)......in my opinion.
Thanks, Rob. The force is with me. So far. Thanks for weighing in.
Giving patients like us a cancer label is not insignificant. It can have psychological and economic impacts as I have written. Some patients can up undergoing surgery or radiation and their side effects when they otherwise could have spent the rest of their lives on AS. Yes, we need better ways to find out who can just walk away from this and those who need to be followed. Yes, AS is not ideal. I was speaking to a guy yesterday who has been treated for prostate cancer for the past 25 years. He wondered how I managed to be on AS for 12 years so far. I explained that I manage by trying to help other guys in this dilemma and, for myself, compartmentalizing the diagnosis and not thinking about having been diagnosed with "cancer."
A prostatectomy or radiation don't cure anxiety. Howard
Many patients on AS don't use their real names in communications. They fear they will experience discrimination on the job if their bosses knew that they had so-called Gleason 6 "cancer." Steve is one of them.
He offers this analysis of Dr. Epstein's position on re-labeling Gleason 6 as a noncancer:
From the perspective of a patient who was diagnosed with low volume Gleason 6 prostate cancer, I would respectfully but vehemently disagree with Dr. Epstein’s position cited in this article. I would also posit that his contention about men being potentially less vigilant with monitoring and follow up if terminology was changed is also incorrect, many times over incorrect, in fact, if a patient agrees to regimented Active Survelliance protocols. While we all have admitted biases in our respective positions, could his be rooted in the principles of “CYA” where, rightfully so, doctors in all fields have to be ever-mindful of the risk for medical liability? If so, draft some sort of legal waiver for patients to sign.
Speaking from experience, not renaming low volume Gleason 6 something other than cancer, one might say, even violates a core tenant of the “Hippocratic oath“ which includes that a medical professional “First do no harm.” In this context, harm to patients could include potential psychological harm given the human instinct to allow the term “cancer” to override logic, reason, science and emotions. So long as Dr. Epstein maintains his position on this particular subject, he would be prudent to simultaneously consider the “law of unintended consequences,” albeit a hidden cost of sorts not easily detectable to a doctor working in the physical realm and basing recommendations on data points such as PSA readings, MRI’s, prostate volume calculations, needle biopsy results, and so on.
No one ever in the history of mankind has died from low volume Gleason 6 prostate cancer, correct? If so, perhaps the better question is why urologists in the United States have historically fared so poorly when compared to their peers in other countries on educating and convincing patients on the efficacy of Active Survelliance as a modality of treatment? 60% of patients in the United States opt for Active Survelliance verses some 94% in Sweden? Why the statistically significant variance?
The potential downside of the status quo being maintained, as he is promoting, has potential for *both* physical & mental consequences.
In terms of physical, this could include patients having unnecessary or premature surgery, or being subjected to radiation. (Note that I intentionally did not use the commonly used term by urologists of “treatment.” In my view, this vernacular softens the hard reality and potential negative side effects related to serious vascular surgery such as a radical prostatectomy and/or having one’s body bombarded with radiation.) In terms of mental variables, anxiety tied to the c-word can negatively and unnecessarily effect quality of life, manifest physically in other ways such as increasing production of cortisol (the stress hormone) inside men’s bodies, and so on. To the extreme, such anxiety associated with the word “cancer” have the potential to be a catalyst for outcomes that revert back to the aforementioned negative physical outcomes. (I.e. “I can’t take the thought of living with cancer inside my body anymore; I just want it out” line of reasoning).
Allan, you are low volume Gleason 6? Have you experienced insurance discrimination because of the cancer diagnoses!? Do you keep your diagnosis a secret? Howard
As much as I would like to see Gleason 6 not determined to be cancer, I do agree with Jeff. If there were a way to determine that indications are such that there need not be any follow-up testing to determine progression into a need for treatment (or a recommendation that treatment be considered), as distinct from indication(s) that follow-up testing is highly recommended, one could then distinguish between two different types of Gleason 6--in fact, probably the number should be changed (or the name). Perhaps this means that one should consider the old "watchful waiting" as the alternative to active surveillance: the latter having regular follow-up testing strongly recommended, the former relying stri8ctly on regular, annual PSA testing.
A great article concerning a great debate. I personally agree with Dr. Epstein. I think his most valid point is that if it is not termed cancer, men may not be diligent enough with necessary follow up. Some may think if it is not cancer, why bother? This may prevent them from making some possible lifestyle changes that could potentially help prevent the cancer from progressing.
I do understand some of the points on the other side of the debate, thus making it a debatable topic.
Jeff, Your situation with high-volume Gleason 6 may persuade you lean in one direction. Epstein gave you support on AS with that. My situation--with barely any Gleason 6 in a single core--can explain my opposite position. Plus, I faced economic toxicity as a result of the heavy cancer diagnosis for a wimpy cancer. This again is why we need better testing to separate the sheep from the wolves. Howard
I looked in Google. They look very different. Prostatitis is a mystery in itself.
I am not a doctor. So maybe one of the docs can answer. But Gleason 6 is what pathologists call a cancer though that's in dispute. Prostatitis is an infection of the gland.
And another comment/question regarding renaming Gleason 6: What is the difference between Prostatitis cells and Gleason 6 cells?
Both are associated with rising PSAs.
Exactly. Thus, what do pathologists say prostatitis cells look like. Is it that we don't know, because a diagnosis of prostatitis doesn't lead to biopsies. Are there any definitive studies of this. Where I'm headed with this is: Should Gleason 6 be called prostatitis instead of cancer; and be treated as such? Does untreated prostatitis allow cells to run amuck and turn into cancerous cells? To me, interesting questions that there don't seem to be any clear answers to. (But disclaimer: I'm just a layman, not a medical professional.)
Dr. Epstein, Respectfully; I fault you for falling into a trap that many medical professionals are in. That being; in the admirable effort to be technically correct, medical professionals fail to treat their patients holistically. I.E. what effects do your words and information have on the 75%-90% of the rest of the patient's life. The part of the patient's life outside your particular medical diagnosis. (E.G. once the word cancer is mentioned, you typically are longer able to actually get life insurance. Or your auto insurance is more expensive, or you don't qualify for the best interest rate on something because you are now in "a different risk category". That category being that "YOU MIGHT ACTUALLY DIE." during the life of the loan.) Yes, those practitioners of financial risk, will grasp at any piece of data, however remote, to enhance their financial bargaining position. And often the medical professional is used, unwittingly, to assist that effort.
A side bar: Howard, don't feel too bad about your life insurance experience; One time my life insurance became more expensive because my cholesterol was border line high. The underwriter encouraged the agent to not even write the policy because I would (in his words) probably die young. --well now I'm 67 and still going with my cholesterol under control--
And my experience with the 3 urologists I fired in during the journey was that their technical recommendations were so blatantly financially self serving as to be laughable at the time, if it wasn't for the fact that I was receiving and processing medical information that affected "ME". Now in hindsight, their recommendations are laughable, as I am an active patient rather than a passive patient. Researching, exploring, and testing all information and options.
Thanks, Bert. Dr. Epstein is a reader of TheActiveSurveillor.com. Maybe he'll respond to the Dr. Vorstman challenge?
I have used Jonathan Epstein MD many times for second opinions concerning prostate biopsy diagnoses. However, with respect, some of his viewpoints require challenges.
The Gleason grade 3 in the 3+3 = 6 was labeled as a low-grade cancer purely on the basis of its low power microscopic appearances - not its clinical behavior or molecular biology attributes.
The paper below includes a table comparing the grade 3 and the grade 4 for invasion and spread potential. Clearly, the grade 3 cell lacks the genetic mechanisms for invasion and spread. Therefore, the grade 3 lacks the hallmarks of a cancer.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4708232/
Concerns about the potential for a higher grade on a subsequent biopsy simply underscores the fact that the ultrasound-guided needle biopsy of the prostate is grossly unscientific. The test is risky and samples blindly and randomly only about .1% of the prostate. Little wonder there is such an outrageous sampling error. And, let's not forget the rate of errors of interpretation amongst pathologists - see “The Rise and Fall of the Prostate Cancer Scam” by urologist Anthony Horan MD.
There were also concerns expressed about the possibility of a BRCA2 mutation, patients abandoning followup and perineurial invasion. I have yet to see hard data that shows any of these issues being responsible for significant morbidity and mortality.
The value of a well-done non-contrast MRI of the prostate interpreted by an expert is accepted currently, as the best screening tool for the 10-15 percent potentially lethal high-grade prostate cancers - signified by Pirads 4 and 5 areas. The MRI can also give us a handle as to tumor volume and whether or not there's any local invasion. The beauty of these MRIs is that they have the ability to ignore bogus disease. Sadly many urologists are combining all sorts of MRI studies with surveillance biopsies - risky drills that simply broadcast the fact that their MRI studies and interpretations are subpar.
Not only is PSA testing associated with an embarrassing 78 percent false positive rate - see “The Great Prostate Hoax” by R. Ablin PhD and Piana - but, urologists’ own clinical studies have shown that both PSA testing and prostate cancer surgery fail to save significant numbers of lives.
https://www.nejm.org/doi/full/10.1056/nejmoa0810696
https://www.nejm.org/doi/full/10.1056/nejmoa1113162
Finally, every step of the current prostate cancer patient journey should be challenged with the question, where is the irrefutable and reproducible scientific evidence for that recommendation? Especially, since John Ioannidis MD determined after his review of multiple healthcare studies that “most published research findings are false.” Its high time urologists dropped the false cancer label for the Gleason 6.
With Rob Wood's permission, I share his comment on renaming Gleason 6.
Yo Howard,
Those of us "lucky" ones with Gleason 6, Pirads scores up to 3, and non rising PSA (as well as those who are just outside these parameters) need to hope for advances and FDA approval of liquid biopsy testing performance in order to eliminate or significantly reduce the need for recurrent biopsies (as called for above by Epstein)......in my opinion.
Cheers and MAY THE FORCE BE WITH YOU,
Rob Wood 👍
Thanks, Rob. The force is with me. So far. Thanks for weighing in.
Giving patients like us a cancer label is not insignificant. It can have psychological and economic impacts as I have written. Some patients can up undergoing surgery or radiation and their side effects when they otherwise could have spent the rest of their lives on AS. Yes, we need better ways to find out who can just walk away from this and those who need to be followed. Yes, AS is not ideal. I was speaking to a guy yesterday who has been treated for prostate cancer for the past 25 years. He wondered how I managed to be on AS for 12 years so far. I explained that I manage by trying to help other guys in this dilemma and, for myself, compartmentalizing the diagnosis and not thinking about having been diagnosed with "cancer."
A prostatectomy or radiation don't cure anxiety. Howard
Many patients on AS don't use their real names in communications. They fear they will experience discrimination on the job if their bosses knew that they had so-called Gleason 6 "cancer." Steve is one of them.
He offers this analysis of Dr. Epstein's position on re-labeling Gleason 6 as a noncancer:
From the perspective of a patient who was diagnosed with low volume Gleason 6 prostate cancer, I would respectfully but vehemently disagree with Dr. Epstein’s position cited in this article. I would also posit that his contention about men being potentially less vigilant with monitoring and follow up if terminology was changed is also incorrect, many times over incorrect, in fact, if a patient agrees to regimented Active Survelliance protocols. While we all have admitted biases in our respective positions, could his be rooted in the principles of “CYA” where, rightfully so, doctors in all fields have to be ever-mindful of the risk for medical liability? If so, draft some sort of legal waiver for patients to sign.
Speaking from experience, not renaming low volume Gleason 6 something other than cancer, one might say, even violates a core tenant of the “Hippocratic oath“ which includes that a medical professional “First do no harm.” In this context, harm to patients could include potential psychological harm given the human instinct to allow the term “cancer” to override logic, reason, science and emotions. So long as Dr. Epstein maintains his position on this particular subject, he would be prudent to simultaneously consider the “law of unintended consequences,” albeit a hidden cost of sorts not easily detectable to a doctor working in the physical realm and basing recommendations on data points such as PSA readings, MRI’s, prostate volume calculations, needle biopsy results, and so on.
No one ever in the history of mankind has died from low volume Gleason 6 prostate cancer, correct? If so, perhaps the better question is why urologists in the United States have historically fared so poorly when compared to their peers in other countries on educating and convincing patients on the efficacy of Active Survelliance as a modality of treatment? 60% of patients in the United States opt for Active Survelliance verses some 94% in Sweden? Why the statistically significant variance?
The potential downside of the status quo being maintained, as he is promoting, has potential for *both* physical & mental consequences.
In terms of physical, this could include patients having unnecessary or premature surgery, or being subjected to radiation. (Note that I intentionally did not use the commonly used term by urologists of “treatment.” In my view, this vernacular softens the hard reality and potential negative side effects related to serious vascular surgery such as a radical prostatectomy and/or having one’s body bombarded with radiation.) In terms of mental variables, anxiety tied to the c-word can negatively and unnecessarily effect quality of life, manifest physically in other ways such as increasing production of cortisol (the stress hormone) inside men’s bodies, and so on. To the extreme, such anxiety associated with the word “cancer” have the potential to be a catalyst for outcomes that revert back to the aforementioned negative physical outcomes. (I.e. “I can’t take the thought of living with cancer inside my body anymore; I just want it out” line of reasoning).
Allan, you are low volume Gleason 6? Have you experienced insurance discrimination because of the cancer diagnoses!? Do you keep your diagnosis a secret? Howard
As much as I would like to see Gleason 6 not determined to be cancer, I do agree with Jeff. If there were a way to determine that indications are such that there need not be any follow-up testing to determine progression into a need for treatment (or a recommendation that treatment be considered), as distinct from indication(s) that follow-up testing is highly recommended, one could then distinguish between two different types of Gleason 6--in fact, probably the number should be changed (or the name). Perhaps this means that one should consider the old "watchful waiting" as the alternative to active surveillance: the latter having regular follow-up testing strongly recommended, the former relying stri8ctly on regular, annual PSA testing.
I'm on Team Eggener in his call to rename Gleason 6 as a noncancer. Let the docs know where YOU stand--either way--at https://twitter.com/uroegg/status/1542559740605120513
Thanks for sounding off, Jeff. We can agree to disagree.
A great article concerning a great debate. I personally agree with Dr. Epstein. I think his most valid point is that if it is not termed cancer, men may not be diligent enough with necessary follow up. Some may think if it is not cancer, why bother? This may prevent them from making some possible lifestyle changes that could potentially help prevent the cancer from progressing.
I do understand some of the points on the other side of the debate, thus making it a debatable topic.
Jeff, Your situation with high-volume Gleason 6 may persuade you lean in one direction. Epstein gave you support on AS with that. My situation--with barely any Gleason 6 in a single core--can explain my opposite position. Plus, I faced economic toxicity as a result of the heavy cancer diagnosis for a wimpy cancer. This again is why we need better testing to separate the sheep from the wolves. Howard