As someone on AS since 2016 -- and hoping to stay on it as long as possible -- I certainly agree it should logically be chosen by more patients, given the side effects of, basically, unnecessary 'treatment.'
However, I cannot put out of my mind the potential danger of calling something non-cancer without overwhelming agreement from pathologists, presumably the best experts on the subject.
If the UK, Sweden and Michigan have 90% uptake of AS, using Gleason 6's current classification of cancer, then surely calling Gleason 6 cancer is not a real obstacle, if urologists explain the situation properly.
Labeling something non-cancer, while most or so many pathologists say it technically is cancer, seems like lying to the patient but justifying it by saying yes, but 'it's for patients' own good.
Seems wrong in principle, -- and unnecessary, given the 90% stats from Sweden, UK and Michigan -- and creates a dangerous slippery slope for the medical community..
Cancer is cancer, as for over treatment that falls on the medicos shoulders, not the patient. Medicos have a duty of care to fully explain what is need to keep an eye on the G6. And emotional distress must be addressed, and referral to counsellor or support group. As one who did 10 years on A/S and then on having my yearly DRE, the gland was firm. A biopsy followed with G6 and G7s being detected, the G7s were 4+3. So, how would renaming the G6 as not being cancer be helpful in my case. And the PSA was 1.9 and free to total PSA only 10%! Every man is different, as for genetic testing how much will that cost?
Mark Scholz, MD, author of "The invasion of the prostate snatchers," commented:
"Over-treatment of prostate cancer negatively impacts male self-esteem, sexual identity and quality of life. Patients and doctors draw wrong conclusions about the risk of metastases when Gleason 6 is called 'cancer.' This inaccurate and inflammatory nomenclature needs to be changed."
Thanks for the insights Howard. I too lean toward GL 6 being reduced, but am concerned that not all biopsies procedures and slides, all oncologists, all clinicians that may interpret and rate the biopsy slides, will be consistent.
Thanks, Steve. There's a lot debate about this. But up until now, the doctors were only guessing what the patients thought. Now we know. I think you're position is shared by the vast majority--if Gleason 6 were renamed a noncancer, most would stay on surveillance.
Great article Howard! You have stated the facts on both sides of this debate. Interesting to see where it ends up. Time will tell.
As an AS patient, I will definingly continue on AS protocol no matter what Gleason 6 is called. It should be noted that once someone get a cancer diagnosis your health and life insurance policies are subject to unfavorable changes.
Chris, I know things are different in Holland and the rest of Europe. But I think it would be worth knowing especially because of the high dropout rate for AS. Maybe if it weren't called cancer, men would reduce stress and would stick with AS. The survey indicates the vast majority of patients (82%) would stay on surveillance if the C-word were dropped. If you need help, let me know. Howard
Breaking update: Dr. Jonathan Epstein, the renowned uropathologist, who has led the charge against renaming Gleason 6, could not be reached before deadline. However, he just sent some comments. I included those pertinent to the patient survey in the story body.
Here are his full comments:
"There are multiple reasons why renaming Gleason score 6 to noncancer is flawed scientifically and for patient care as Dr. Adam Kibel and I wrote recently in the Journal of Clinical Oncology September 2022 issue. One of the major arguments against relabeling GG1 as not cancer is that approximately 20%-35% of these tumors on prostate biopsy are upgraded at radical prostatectomy.
"Removing the label of cancer in men with GG1 cancer on biopsy could make it challenging to ensure that they are carefully followed and biopsied sequentially during years of follow-up on AS. Some experts have argued that a recent survey finding that 82% of all respondents say they would continue AS even if the cancer label was dropped.
"The survey was answered by men who have been diagnosed with cancer, consider themselves to have cancer, and are consequently undergoing close follow-up on AS. Telling these men if we were now to change the name of their cancer to noncancer is not the same as telling a man on their first biopsy with Gleason 6: “You don’t have cancer, but we want you to be followed closely for many years with repeat biopsies, imaging, serum tests, etc.”
This is a little like the debate over whether Pluto should be designated a planet. What we call it doesn't change it. The difference being that calling Gleason 6 a non-cancerous lesion may have real world consequences in terms of treatment decisions. It may make it harder for aggressive urologists to convince anxious patients to overtreat. That would be a good thing.
As someone on AS since 2016 -- and hoping to stay on it as long as possible -- I certainly agree it should logically be chosen by more patients, given the side effects of, basically, unnecessary 'treatment.'
However, I cannot put out of my mind the potential danger of calling something non-cancer without overwhelming agreement from pathologists, presumably the best experts on the subject.
If the UK, Sweden and Michigan have 90% uptake of AS, using Gleason 6's current classification of cancer, then surely calling Gleason 6 cancer is not a real obstacle, if urologists explain the situation properly.
Labeling something non-cancer, while most or so many pathologists say it technically is cancer, seems like lying to the patient but justifying it by saying yes, but 'it's for patients' own good.
Seems wrong in principle, -- and unnecessary, given the 90% stats from Sweden, UK and Michigan -- and creates a dangerous slippery slope for the medical community..
Cancer is cancer, as for over treatment that falls on the medicos shoulders, not the patient. Medicos have a duty of care to fully explain what is need to keep an eye on the G6. And emotional distress must be addressed, and referral to counsellor or support group. As one who did 10 years on A/S and then on having my yearly DRE, the gland was firm. A biopsy followed with G6 and G7s being detected, the G7s were 4+3. So, how would renaming the G6 as not being cancer be helpful in my case. And the PSA was 1.9 and free to total PSA only 10%! Every man is different, as for genetic testing how much will that cost?
Mark Scholz, MD, author of "The invasion of the prostate snatchers," commented:
"Over-treatment of prostate cancer negatively impacts male self-esteem, sexual identity and quality of life. Patients and doctors draw wrong conclusions about the risk of metastases when Gleason 6 is called 'cancer.' This inaccurate and inflammatory nomenclature needs to be changed."
Thanks for the insights Howard. I too lean toward GL 6 being reduced, but am concerned that not all biopsies procedures and slides, all oncologists, all clinicians that may interpret and rate the biopsy slides, will be consistent.
This just in. MedPage Today ran my account on the patient survey and how Gleason 6 impacts patients emotionally and financially: https://www.medpagetoday.com/special-reports/apatientsjourney/103135
Thanks, Steve. There's a lot debate about this. But up until now, the doctors were only guessing what the patients thought. Now we know. I think you're position is shared by the vast majority--if Gleason 6 were renamed a noncancer, most would stay on surveillance.
Great article Howard! You have stated the facts on both sides of this debate. Interesting to see where it ends up. Time will tell.
As an AS patient, I will definingly continue on AS protocol no matter what Gleason 6 is called. It should be noted that once someone get a cancer diagnosis your health and life insurance policies are subject to unfavorable changes.
Thank you Howard, very interesting survey, and I wonder how this question would be experienced in other parts of the world. Is it worth pursuing that?
Sincerely yours,
Prof C.H. Bangma MD, PhD (he/him)
Professor in Urology
Director Anser prostate network
Chris, I know things are different in Holland and the rest of Europe. But I think it would be worth knowing especially because of the high dropout rate for AS. Maybe if it weren't called cancer, men would reduce stress and would stick with AS. The survey indicates the vast majority of patients (82%) would stay on surveillance if the C-word were dropped. If you need help, let me know. Howard
Breaking update: Dr. Jonathan Epstein, the renowned uropathologist, who has led the charge against renaming Gleason 6, could not be reached before deadline. However, he just sent some comments. I included those pertinent to the patient survey in the story body.
Here are his full comments:
"There are multiple reasons why renaming Gleason score 6 to noncancer is flawed scientifically and for patient care as Dr. Adam Kibel and I wrote recently in the Journal of Clinical Oncology September 2022 issue. One of the major arguments against relabeling GG1 as not cancer is that approximately 20%-35% of these tumors on prostate biopsy are upgraded at radical prostatectomy.
"Removing the label of cancer in men with GG1 cancer on biopsy could make it challenging to ensure that they are carefully followed and biopsied sequentially during years of follow-up on AS. Some experts have argued that a recent survey finding that 82% of all respondents say they would continue AS even if the cancer label was dropped.
"The survey was answered by men who have been diagnosed with cancer, consider themselves to have cancer, and are consequently undergoing close follow-up on AS. Telling these men if we were now to change the name of their cancer to noncancer is not the same as telling a man on their first biopsy with Gleason 6: “You don’t have cancer, but we want you to be followed closely for many years with repeat biopsies, imaging, serum tests, etc.”
This is a little like the debate over whether Pluto should be designated a planet. What we call it doesn't change it. The difference being that calling Gleason 6 a non-cancerous lesion may have real world consequences in terms of treatment decisions. It may make it harder for aggressive urologists to convince anxious patients to overtreat. That would be a good thing.