Beauty of banter between you two, Harley, Howard, is, we have a recent history in this country of such not occurring between the treating team and majority of men with prostate cancer. Go so far as to say tone of many who participate in this forum appears search for "absolution" from choices made which simply would not have been the case had each more information. While easy to cast aspersions because of the state of the science, onus remains to draw more to this blog to enhance discussion. I commend you both.
This is a soapbox for everyone who is involved with AS.
You may be right about misdiagnosis. My case is unusal.
If I didn't have prostate cancer I may we well as have had it.
I had a uro on 'roids who was trying to rushing me into his OR. That's what happened to to 94% of guys back then.
I saved myself from being treated by doing my homework.
My term-insurance company disowned me as a "cancer patient" and refused to continue my favorable rates. Seven other term providers wouldn't even consider selling me insurance. I was paying $184/month for 10 years for $600k coverage. I finally got a policy with a flat premium for only $100k.
I was tagged a cancer patient and couldn't wipe the label off nio matter that I had a single core seen only once of Gleason 6.
Dr. Freddie Hamdy, co-principal investigator of thge ProtecT trial, suggested that one of my biopsies could have by chance removed that 1 mm. speck of cancer. Dr. Laurence Klotz, one of the pioneers of AS, suggested I might have had a spontaneous remission: https://www.medpagetoday.com/special-reports/apatientsjourney/81775
My second and third urologists insist that I have a tiny cancer still eluding detection.
I soon will have an article in Medscape about another possibie: MRI-invisible lesions.
If I had my druthers, none of this would have ever happenedl
I have ridden the wave, hanging 10. I didn't get upset.
But I woner what happened to me in December 2010. Was it just a bad prostate day.
On the other hand, I was so pissed off about how I almost tripped into unnecessary surgery, well-demonstrated by my lack of treatment the ensuing 14 years.
I never would have met all you guys if I didn't become an activist and helped create two of the first support groups only for patients with AS and inspired creation of others. I found I could stand up for a cause and organize education meetings with the top docs in the field.
Harley, I thank G I took no action like surgery or radiation. But I had too many biopsies for sure.
I think you're going too easy on the transfecal biopsies that kill 3,000 men a year globally, including 2,000 in the US.
Transperineal biopsies had a bap rap in the past. Very painful. A lot of bad press. The technique has changed now. Many US men prefer to be put out for TPs because it can cause pain. But the developer of the new technique expected it to be done in urology offices. But US men steer away from the pain--though different ment have different tolerance levels.
I don't believe you have PCa Howard. Never had it, most likely aren't getting it. You are the poster boy for misdiagnosis, but thank G you took action!
As for DRE, good grief already. I mean, my wife has always said that men are babies and she is 100% correct. All you need do is join one of the FB groups to hear all the whining, etc. over a DRE. Good grief get over it already. Let me add that the DRE is more than just 'feeling for a lump' a la breast or testicular cancer. The DRE should only be performed by a Uro because they can feel more than just the obvious lump that even a GP would miss.
Lastly (BTW, thanks for the soapbox) the TRUS is badly misaligned and I feel it is superior to TP. Many men do not realize all the stuff down there in their perineum that is going to get pin-cushioned. They prefer TP because 1) most go under GA and 2) nothing up the butt. If the TRUS is done by an experienced Uro it is literally a walk in the park (albeit you lose any sense of dignity you may possess, but I'm in my 70's and lucky I don't forget to pull my pants on daily anyway) and the risk of sepsis very low if proper protocols are followed. If given a choice between novocaine at the dentist or two quick jabs of lidocaine to the prostate I'll take the TRUS any day.
So, this is all my NSHO and you know what they say...
Check out this video with Drs. Klotz and Carroll, surveillance pioneers.
I don't klnow about this patient other than what you said. It is possible, but extremely rare. As I noted in my story, 50% of newly diagnosed men who go on AS leave it five years after going on it.
On the Reddit forum for Prostate Cancer today there’s a guy who says that one year ago he was diagnosed with Gleason 6 PCa and began active surveillance.
Late last week he discovered from an annual routine biopsy that he has Gleason 10 (5+5) and an MRI showed it has penetrated the prostate wall. Something definitely went wrong here.
Beauty of banter between you two, Harley, Howard, is, we have a recent history in this country of such not occurring between the treating team and majority of men with prostate cancer. Go so far as to say tone of many who participate in this forum appears search for "absolution" from choices made which simply would not have been the case had each more information. While easy to cast aspersions because of the state of the science, onus remains to draw more to this blog to enhance discussion. I commend you both.
Keep watching this space. I'm going run Harley's story soon.
Harley,
This is a soapbox for everyone who is involved with AS.
You may be right about misdiagnosis. My case is unusal.
If I didn't have prostate cancer I may we well as have had it.
I had a uro on 'roids who was trying to rushing me into his OR. That's what happened to to 94% of guys back then.
I saved myself from being treated by doing my homework.
My term-insurance company disowned me as a "cancer patient" and refused to continue my favorable rates. Seven other term providers wouldn't even consider selling me insurance. I was paying $184/month for 10 years for $600k coverage. I finally got a policy with a flat premium for only $100k.
I was tagged a cancer patient and couldn't wipe the label off nio matter that I had a single core seen only once of Gleason 6.
Dr. Freddie Hamdy, co-principal investigator of thge ProtecT trial, suggested that one of my biopsies could have by chance removed that 1 mm. speck of cancer. Dr. Laurence Klotz, one of the pioneers of AS, suggested I might have had a spontaneous remission: https://www.medpagetoday.com/special-reports/apatientsjourney/81775
My second and third urologists insist that I have a tiny cancer still eluding detection.
I soon will have an article in Medscape about another possibie: MRI-invisible lesions.
If I had my druthers, none of this would have ever happenedl
I have ridden the wave, hanging 10. I didn't get upset.
But I woner what happened to me in December 2010. Was it just a bad prostate day.
On the other hand, I was so pissed off about how I almost tripped into unnecessary surgery, well-demonstrated by my lack of treatment the ensuing 14 years.
I never would have met all you guys if I didn't become an activist and helped create two of the first support groups only for patients with AS and inspired creation of others. I found I could stand up for a cause and organize education meetings with the top docs in the field.
Harley, I thank G I took no action like surgery or radiation. But I had too many biopsies for sure.
I think you're going too easy on the transfecal biopsies that kill 3,000 men a year globally, including 2,000 in the US.
Transperineal biopsies had a bap rap in the past. Very painful. A lot of bad press. The technique has changed now. Many US men prefer to be put out for TPs because it can cause pain. But the developer of the new technique expected it to be done in urology offices. But US men steer away from the pain--though different ment have different tolerance levels.
FYI: https://howardwolinsky.substack.com/p/new-debate-for-transperineal-biopsies?utm_source=publication-search
I don't believe you have PCa Howard. Never had it, most likely aren't getting it. You are the poster boy for misdiagnosis, but thank G you took action!
As for DRE, good grief already. I mean, my wife has always said that men are babies and she is 100% correct. All you need do is join one of the FB groups to hear all the whining, etc. over a DRE. Good grief get over it already. Let me add that the DRE is more than just 'feeling for a lump' a la breast or testicular cancer. The DRE should only be performed by a Uro because they can feel more than just the obvious lump that even a GP would miss.
Lastly (BTW, thanks for the soapbox) the TRUS is badly misaligned and I feel it is superior to TP. Many men do not realize all the stuff down there in their perineum that is going to get pin-cushioned. They prefer TP because 1) most go under GA and 2) nothing up the butt. If the TRUS is done by an experienced Uro it is literally a walk in the park (albeit you lose any sense of dignity you may possess, but I'm in my 70's and lucky I don't forget to pull my pants on daily anyway) and the risk of sepsis very low if proper protocols are followed. If given a choice between novocaine at the dentist or two quick jabs of lidocaine to the prostate I'll take the TRUS any day.
So, this is all my NSHO and you know what they say...
Numero. We know that in very rare cases there can be a dramatic rise in PSA. That's what happened with the former director of the NIH.
Check these out:
https://www.medpagetoday.com/special-reports/apatientsjourney/109711
Check out this video with Drs. Klotz and Carroll, surveillance pioneers.
I don't klnow about this patient other than what you said. It is possible, but extremely rare. As I noted in my story, 50% of newly diagnosed men who go on AS leave it five years after going on it.
My situation is rare. Please share the link.
On the Reddit forum for Prostate Cancer today there’s a guy who says that one year ago he was diagnosed with Gleason 6 PCa and began active surveillance.
Late last week he discovered from an annual routine biopsy that he has Gleason 10 (5+5) and an MRI showed it has penetrated the prostate wall. Something definitely went wrong here.
"Something went wrong" is an understatement. I'd call an attorney.
I wonder if they were caught up in the whole AS thing and afraid of a false positive rather than the significantly worse false negative.
https://www.reddit.com/r/ProstateCancer/s/lUB0Tadnsx