Appears Substack needs to hear from those you serve, each and every one of the 250! Substack's requirement you charge in the long run will fail those with PCa your newsletter is designed principally to serve. Seen this before for decades; charge with option for waiver. Yes, money saved giving up one's vices; simply not human nature. Again, a waiver removes concern allowing overworked, underpaid, under-appreciated assistant to plan vacation.
> first - sampling errors - the embarrassing and grossly unscientific, blind, random 12-core prostate needle biopsy sampled only 0.1% of the prostate - urologists were basing their prostate "cancer" management without any knowledge of what was happening in 99.9% of the prostate.
> second - prostatic tissue - especially in some men - can exhibit field change effects (similar to bladder cancer) with a more significant Gleason grade originating in an area adjacent or, some other area of the prostate (rather than evolve from an existing lesion). Joe Busch MD has the impression (after undertaking 1000s of non-contrast MRIs) that this may be possible in someone who has been diagnosed initially with several lesions on a well conducted and interpreted MRI.
> third - the G6 lacks the hallmarks of a cancer on both clinical and molecular biology grounds.
Thanks, Bert. Can you tell me the error rate for biopsies? Do you have a link? Likewise, the error rate with MRIs? I think I read they are wrong--or the doctors are--at least 10% of the time.
Thats a tough one Howard - i suspect the bigger the prostate volume, the bigger the error - sorry no link. Also, the Pirads classification (like the Gleason grading and scoring system) is complex and subject to interpretation errors - personal observation as relayed by Joe Busch MD - no links sorry. A lot of room for AI in radiology and pathology.
Bert. The robots are coming. They'll have to separate human error for human error. WE did a program in this last year. First they'll take our jobs. And then they'll take our prostates. Howard TheActiveSurveillor.com
"Spot on", Howard, and reason universal financial support of your newsletter so important. Even with best of intentions, variety of contemporaneous forums on AS no match for, "The Active Surveillor." To those PCa brothers who complain your newsletter has "too much info", difficult to follow, use my name and heartily suggest each beat retreat home; they need a "mother." Thank God you never settled for compromise; what you are doing in the newsletter is what I expect but sorrily find lacking in every-repeat, every-forum on the subject. Allow me if first to appear in the hereafter, to announce your appearance.
Steve, Thanks. A few dropped the newsletter because they felt I was sending too much information. No one else is covering AS as a newsletter. People have to do what they do. I hope they realize they can read the headline and decide. One person said he didn't want to think about his cancer but once a month. I am not forcing anyone to do that. The newsletter is growing. I have 250 subscribers in three months. I want to make it available free. But I am going into the red because I hire a transcriptionist to put interviews into text. Substack, the software company, wants me to have paid subscriptions. I haven't really figured out how to just make donations. I have written to Substack and they don't respond.
So I'll "soldier" on. Meanwhile come to the webinar on Friday. "Your Voice in the Future of Active Surveillance," at 11 a.m. Eastern. April 22.
Earth shattering? As I said, it's out Monday. I'll post more on it and a link if it is open to we unwashed types. If not, I'll send it anyone who wants it. Public release at 4 pm Eastern
Howard, you should consider allowing for an answer of 'Other' on some questions. I was denied coverage on long-term care and was forced to stay with my expensive 'GAP' medical coverage because no other company would have me. My current GAP carrier is getting out of the business and will no longer sell new accounts, but is raising rates on existing clients until they all go somewhere else. If they got completely out, other companies would have to cover me, but could charge what they want to charge. I am in a very uncomfortable box due to Gleason 6.
Thanks, Fred I have limited survey form available for the free account. I hope others will respond to me if they have problems. I have no budget to produce this newsletter. Ii am losing money on secretarial services don't think I am allowed other in Surveymonkey.
Appears Substack needs to hear from those you serve, each and every one of the 250! Substack's requirement you charge in the long run will fail those with PCa your newsletter is designed principally to serve. Seen this before for decades; charge with option for waiver. Yes, money saved giving up one's vices; simply not human nature. Again, a waiver removes concern allowing overworked, underpaid, under-appreciated assistant to plan vacation.
Thanks for advocating for me, Steve.
AS has been wanting for a very, very long time.
> first - sampling errors - the embarrassing and grossly unscientific, blind, random 12-core prostate needle biopsy sampled only 0.1% of the prostate - urologists were basing their prostate "cancer" management without any knowledge of what was happening in 99.9% of the prostate.
> second - prostatic tissue - especially in some men - can exhibit field change effects (similar to bladder cancer) with a more significant Gleason grade originating in an area adjacent or, some other area of the prostate (rather than evolve from an existing lesion). Joe Busch MD has the impression (after undertaking 1000s of non-contrast MRIs) that this may be possible in someone who has been diagnosed initially with several lesions on a well conducted and interpreted MRI.
> third - the G6 lacks the hallmarks of a cancer on both clinical and molecular biology grounds.
Table 1 in this link is particularly telling. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4708232/
Patients "treated" for a G6 are survivors of the treatment - not the bogus cancer.
> fourth - the complexity of the Gleason grading and scoring system lends itself to errors of interpretation.
Thanks, Bert. Can you tell me the error rate for biopsies? Do you have a link? Likewise, the error rate with MRIs? I think I read they are wrong--or the doctors are--at least 10% of the time.
Thats a tough one Howard - i suspect the bigger the prostate volume, the bigger the error - sorry no link. Also, the Pirads classification (like the Gleason grading and scoring system) is complex and subject to interpretation errors - personal observation as relayed by Joe Busch MD - no links sorry. A lot of room for AI in radiology and pathology.
Bert. The robots are coming. They'll have to separate human error for human error. WE did a program in this last year. First they'll take our jobs. And then they'll take our prostates. Howard TheActiveSurveillor.com
"Spot on", Howard, and reason universal financial support of your newsletter so important. Even with best of intentions, variety of contemporaneous forums on AS no match for, "The Active Surveillor." To those PCa brothers who complain your newsletter has "too much info", difficult to follow, use my name and heartily suggest each beat retreat home; they need a "mother." Thank God you never settled for compromise; what you are doing in the newsletter is what I expect but sorrily find lacking in every-repeat, every-forum on the subject. Allow me if first to appear in the hereafter, to announce your appearance.
Steve, Thanks. A few dropped the newsletter because they felt I was sending too much information. No one else is covering AS as a newsletter. People have to do what they do. I hope they realize they can read the headline and decide. One person said he didn't want to think about his cancer but once a month. I am not forcing anyone to do that. The newsletter is growing. I have 250 subscribers in three months. I want to make it available free. But I am going into the red because I hire a transcriptionist to put interviews into text. Substack, the software company, wants me to have paid subscriptions. I haven't really figured out how to just make donations. I have written to Substack and they don't respond.
So I'll "soldier" on. Meanwhile come to the webinar on Friday. "Your Voice in the Future of Active Surveillance," at 11 a.m. Eastern. April 22.
Register here: https://bit.ly/3ueT9bc
Hey Howard - will we the great unwashed (though not unbiopsied) be able to read this earth-shattering paper when it comes out this week?
Earth shattering? As I said, it's out Monday. I'll post more on it and a link if it is open to we unwashed types. If not, I'll send it anyone who wants it. Public release at 4 pm Eastern
Howard, you should consider allowing for an answer of 'Other' on some questions. I was denied coverage on long-term care and was forced to stay with my expensive 'GAP' medical coverage because no other company would have me. My current GAP carrier is getting out of the business and will no longer sell new accounts, but is raising rates on existing clients until they all go somewhere else. If they got completely out, other companies would have to cover me, but could charge what they want to charge. I am in a very uncomfortable box due to Gleason 6.
Fred did the insurer say your cancer is the reason. Can you send me any communications on this? Maybe you can write something on this?
No, it just said something like - declined due to medical history. I'm sure I trashed the email.
Thanks. Hope others speak up.
Thanks, Fred I have limited survey form available for the free account. I hope others will respond to me if they have problems. I have no budget to produce this newsletter. Ii am losing money on secretarial services don't think I am allowed other in Surveymonkey.