Re: Re: Men's Health Network and Veterans Health Council Oppose Final USPSTF Recommendation Against Prostate Cancer Screening

May 22, 2012

Rich wrote:

>

>T hose men will die of numerous reasons not just prostate cancer

>diagnostic failure if they do not have regular checkups and

>react to bodily warnings of all sorts. The USPSTF statement will

>have no net effect as the data shows.

>

> Prostate over-treatment is a tremendous cash cow, driven by

> fear, and very much based on anecdotal evidence from persons

> who underwent the treatment. Neuroscience has shown that

> people want to " feel " right, not necessarily be right. Once

> treated for confined PCa, that is a big driver of their

> perspective.

>

> Mr Herbert has a very reasoned view of this situation, ah but

> we should all have such a balanced view.

>

> Rich Luxton

Rich,

I agree with you and Terry that there is significant over-

treatment. I agree that over-treatment is a huge cash cow. And

I agree that PSA testing has less of an effect on death rates in

the first 10 or even 15 years after diagnosis than we would like.

The biggest question in my mind is, Why?

Is it because early testing is of little use?

Is it because most treatments don't work and that men who are

treated die of the disease at about the same rate as men who are

not?

Or is it perhaps the case that the studies aren't looking far

enough out and not looking at treatment with best practices?

30,000 American men die every year of PCa. Here is what I would

like to know about them:

1. How many of those men were diagnosed early by a PSA test,

while their PSA was below 10 or so? How many were diagnosed

after it was too late for treatment?

Surely some of those men could have been saved if they had

been treated earlier.

2. How many of the men were treated by real specialists, not

just urologists, but urologists who specialize in PCa, not

just radiation oncologists but radiation oncologists who

specialize in PCa, not just medical oncologists but medical

oncologists who specialize in PCa? How many of them were

treated by doctors who keep up with the latest information

about cancer and cancer treatment?

I was offered surgery by my HMO urologist who I later

learned was a specialist in female incontinence and did very

few prostatectomies each year. He didn't tell me that and I

was too dumb to ask. Fortunately, other people helped steer

me in a different direction and I found someone a lot

better.

Surely some of the men who failed treatment and died could

have been saved if they had been treated by doctors who were

more experienced.

In one of his videos criticizing the USPSTF statement, Dr.

" Snuffy " Myers said that he thought that, if all men were treated

according to " best practices " , only 3,000 or so would die every

year. He's claiming that up to 9 out of 10 men who die of PCa

didn't have to die of it if they had had the best medical treatment.

I don't know if he's right, but his point is that we need to find

out why men are dying and fix that problem, not just say that men

die whether we give them PSA tests or not, so let's not.

If Dr. Myers is right, a LOT more men could be saved by early

detection. Even if he's off by a factor of five, and only half

the men could have been saved, it's still a huge number, and PSA

testing would surely be critical in saving them.

I fear that the USPSTF statement took the view that we can't do

better than we're doing, so we shouldn't try. I fear that it's a

little like saying, " I threw a bucket of water on the fire and it

didn't go out, so I give up. Let the house burn. Water isn't

going to help. "

PSA testing is a valuable tool in prostate cancer screening and

treatment. But it's not the whole story. If it's not helping

enough, let's find out why and fix the real underlying problems,

not just throw out PSA testing.

And finally, of course, I think there is good reason to believe

that a signficant percentage of men who eat right, exercise, and

get medical care will live into their late 80's and some even

into their 90's. Telling a 70 year old man, or a 65 year old

man, or as I was, a 57 year old man when I was diagnosed, that

you won't die in 10 years and probably not in 15 (though you will

need to take drugs and maybe put up with pain), so don't bother,

would be condemning him or me to a fate that I hope to avoid.

Alan

May 22, 2012

You get another “AMEN” from me, Alan. Chuck Always as close as the other end of your computer to help address any prostate cancer concerns. " What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others. " (Chuck) Maack - Rmd, PCaA, PCaM Email: maack1@... PCa Help: " Observations " http://www.theprostateadvocate.com From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan MeyerSent: Tuesday, May 22, 2012 4:33 PMTo: ProstateCancerSupport Subject: Re: Re: Men's Health Network and Veterans Health Council Oppose Final USPSTF Recommendation Against Prostate Cancer Screening Rich wrote:>>T hose men will die of numerous reasons not just prostate cancer>diagnostic failure if they do not have regular checkups and>react to bodily warnings of all sorts. The USPSTF statement will>have no net effect as the data shows.>> Prostate over-treatment is a tremendous cash cow, driven by> fear, and very much based on anecdotal evidence from persons> who underwent the treatment. Neuroscience has shown that> people want to " feel " right, not necessarily be right. Once> treated for confined PCa, that is a big driver of their> perspective.>> Mr Herbert has a very reasoned view of this situation, ah but> we should all have such a balanced view.>> Rich LuxtonRich,I agree with you and Terry that there is significant over-treatment. I agree that over-treatment is a huge cash cow. AndI agree that PSA testing has less of an effect on death rates inthe first 10 or even 15 years after diagnosis than we would like.The biggest question in my mind is, Why?Is it because early testing is of little use?Is it because most treatments don't work and that men who aretreated die of the disease at about the same rate as men who arenot?Or is it perhaps the case that the studies aren't looking farenough out and not looking at treatment with best practices?30,000 American men die every year of PCa. Here is what I wouldlike to know about them: 1. How many of those men were diagnosed early by a PSA test, while their PSA was below 10 or so? How many were diagnosed after it was too late for treatment? Surely some of those men could have been saved if they had been treated earlier. 2. How many of the men were treated by real specialists, not just urologists, but urologists who specialize in PCa, not just radiation oncologists but radiation oncologists who specialize in PCa, not just medical oncologists but medical oncologists who specialize in PCa? How many of them were treated by doctors who keep up with the latest information about cancer and cancer treatment? I was offered surgery by my HMO urologist who I later learned was a specialist in female incontinence and did very few prostatectomies each year. He didn't tell me that and I was too dumb to ask. Fortunately, other people helped steer me in a different direction and I found someone a lot better. Surely some of the men who failed treatment and died could have been saved if they had been treated by doctors who were more experienced.In one of his videos criticizing the USPSTF statement, Dr. " Snuffy " Myers said that he thought that, if all men were treatedaccording to " best practices " , only 3,000 or so would die everyyear. He's claiming that up to 9 out of 10 men who die of PCadidn't have to die of it if they had had the best medical treatment.I don't know if he's right, but his point is that we need to findout why men are dying and fix that problem, not just say that mendie whether we give them PSA tests or not, so let's not.If Dr. Myers is right, a LOT more men could be saved by earlydetection. Even if he's off by a factor of five, and only halfthe men could have been saved, it's still a huge number, and PSAtesting would surely be critical in saving them.I fear that the USPSTF statement took the view that we can't dobetter than we're doing, so we shouldn't try. I fear that it's alittle like saying, " I threw a bucket of water on the fire and itdidn't go out, so I give up. Let the house burn. Water isn't going to help. " PSA testing is a valuable tool in prostate cancer screening andtreatment. But it's not the whole story. If it's not helpingenough, let's find out why and fix the real underlying problems,not just throw out PSA testing.And finally, of course, I think there is good reason to believethat a signficant percentage of men who eat right, exercise, andget medical care will live into their late 80's and some eveninto their 90's. Telling a 70 year old man, or a 65 year oldman, or as I was, a 57 year old man when I was diagnosed, thatyou won't die in 10 years and probably not in 15 (though you willneed to take drugs and maybe put up with pain), so don't bother,would be condemning him or me to a fate that I hope to avoid. AlanNo virus found in this message.Checked by AVG - www.avg.comVersion: 2012.0.2176 / Virus Database: 2425/5015 - Release Date: 05/22/12

May 23, 2012

Chuck, Alan, Terry et al

The holy grail would be a better test to sort out the ones that need treating from the ones that don't.

We know now that there are many different prostate cancers, it might be that gene analysis brings info on which ones are or are likely to be agressive.

I don't think any sensible person does nothing on diagnosis, we may change what we eat, take the trip we always planned.........

We now have a better understanding of options in the UK and hear fewer reports of specialists directing patients to radical treatment when active surveilance is the top option.

Best wishes

16 years since diagnosis just had second Taxotere chemo

RE: Re: Men's Health Network and Veterans Health Council Oppose Final USPSTF Recommendation Against Prostate Cancer Screening

You get another “AMEN” from me, Alan.

Chuck

Always as close as the other end of your computer to help address any prostate cancer concerns.

"What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others."

(Chuck) Maack - Rmd, PCaA, PCaM

Email: maack1@...

PCa Help: "Observations" http://www.theprostateadvocate.com

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan MeyerSent: Tuesday, May 22, 2012 4:33 PMTo: ProstateCancerSupport Subject: Re: Re: Men's Health Network and Veterans Health Council Oppose Final USPSTF Recommendation Against Prostate Cancer Screening

Rich wrote:>>T hose men will die of numerous reasons not just prostate cancer>diagnostic failure if they do not have regular checkups and>react to bodily warnings of all sorts. The USPSTF statement will>have no net effect as the data shows.>> Prostate over-treatment is a tremendous cash cow, driven by> fear, and very much based on anecdotal evidence from persons> who underwent the treatment. Neuroscience has shown that> people want to "feel" right, not necessarily be right. Once> treated for confined PCa, that is a big driver of their> perspective.>> Mr Herbert has a very reasoned view of this situation, ah but> we should all have such a balanced view.>> Rich LuxtonRich,I agree with you and Terry that there is significant over-treatment. I agree that over-treatment is a huge cash cow. AndI agree that PSA testing has less of an effect on death rates inthe first 10 or even 15 years after diagnosis than we would like.The biggest question in my mind is, Why?Is it because early testing is of little use?Is it because most treatments don't work and that men who aretreated die of the disease at about the same rate as men who arenot?Or is it perhaps the case that the studies aren't looking farenough out and not looking at treatment with best practices?30,000 American men die every year of PCa. Here is what I wouldlike to know about them: 1. How many of those men were diagnosed early by a PSA test, while their PSA was below 10 or so? How many were diagnosed after it was too late for treatment? Surely some of those men could have been saved if they had been treated earlier. 2. How many of the men were treated by real specialists, not just urologists, but urologists who specialize in PCa, not just radiation oncologists but radiation oncologists who specialize in PCa, not just medical oncologists but medical oncologists who specialize in PCa? How many of them were treated by doctors who keep up with the latest information about cancer and cancer treatment? I was offered surgery by my HMO urologist who I later learned was a specialist in female incontinence and did very few prostatectomies each year. He didn't tell me that and I was too dumb to ask. Fortunately, other people helped steer me in a different direction and I found someone a lot better. Surely some of the men who failed treatment and died could have been saved if they had been treated by doctors who were more experienced.In one of his videos criticizing the USPSTF statement, Dr."Snuffy" Myers said that he thought that, if all men were treatedaccording to "best practices", only 3,000 or so would die everyyear. He's claiming that up to 9 out of 10 men who die of PCadidn't have to die of it if they had had the best medical treatment.I don't know if he's right, but his point is that we need to findout why men are dying and fix that problem, not just say that mendie whether we give them PSA tests or not, so let's not.If Dr. Myers is right, a LOT more men could be saved by earlydetection. Even if he's off by a factor of five, and only halfthe men could have been saved, it's still a huge number, and PSAtesting would surely be critical in saving them.I fear that the USPSTF statement took the view that we can't dobetter than we're doing, so we shouldn't try. I fear that it's alittle like saying, "I threw a bucket of water on the fire and itdidn't go out, so I give up. Let the house burn. Water isn't going to help."PSA testing is a valuable tool in prostate cancer screening andtreatment. But it's not the whole story. If it's not helpingenough, let's find out why and fix the real underlying problems,not just throw out PSA testing.And finally, of course, I think there is good reason to believethat a signficant percentage of men who eat right, exercise, andget medical care will live into their late 80's and some eveninto their 90's. Telling a 70 year old man, or a 65 year oldman, or as I was, a 57 year old man when I was diagnosed, thatyou won't die in 10 years and probably not in 15 (though you willneed to take drugs and maybe put up with pain), so don't bother,would be condemning him or me to a fate that I hope to avoid. Alan

No virus found in this message.Checked by AVG - www.avg.comVersion: 2012.0.2176 / Virus Database: 2425/5015 - Release Date: 05/22/12

May 24, 2012

Rich,

I wish it weren't so, but I agree that you're right. My

proposals are probably infeasible in the current environment. We

can't get top quality physicians or best known practices to treat

every patient. After all, half the physicians in the country are

at or below average and half the patients get those physicians.

However I believe that we have actually made considerable

progress and can make more, both in getting patients to real

specialists, and in raising awareness among doctors of what best

practices are. Some significant steps have been taken, for

example:

I think a much higher percentage of patients are referred to

specialists than was the case 50 years ago.

There are more programs in place now to monitor hospital

outcomes and promote best practices in the U.S., for example

in preventing infections contracted in hospitals. We still

have a LONG way to go with this, but there has been progress.

The National Cancer Institute has developed new standards for

qualitatively defining the " levels of evidence " for all

treatments, and (I hope) more doctors are paying attention.

They are also evaluating cancer centers nationwide, and

publishing guidelines for the treatment of all cancers.

One thing that is practical I think, is to define specialties a

little more narrowly than at present. For example, some

urologists do a lot of prostate surgery and some do very little.

If we could somehow certify specialists for subspecialties or

require that they make more information available about

themselves, maybe that would help patients to find out which

doctors are doing 200 prostatectomies a year and which ones are

doing 5.

I know the problems are difficult. Progress is slow. But I'm

hoping that we can raise consciousness around the issues and

continue to make more and more progress.

Alan

Re: Men's Health Network and

> Veterans Health Council Oppose Final USPSTF Recommendation

> Against Prostate Cancer Screening

>

> Alan, You are absolutely correct in your perspective.

> Unfortunately, it is not feasible, at least today, to find

> " best practices " of treatment throughout the country. Matter of

> fact, many are met with a gloom and doom prognostication that

> may or may not be warranted. That latter happened to my

> neighbor. As with any activity where there is little

> consistency, many egos, and numerous other causes, treatments

> vary widely based upon even wider abilities to either provide

> or assess those treatments.

>

> Under the current scenario of medical practice in the USA, the

> recommended approach is valid. Furthermore, there aren't enough

> Dr Myers to treat everyone. The underlying issue is far larger

> than the panel's recommended approach.

>

> The next generation proton radiation therapy machines are

> being, or were being, developed upon the economic model derived

> from prostate cancer treatment. PCa treatment is considered the

> based load revenue source.

>

> I wish it were different but it is not.

May 25, 2012

Gee, gents. C’mon, cheer up. Things

change slowly, especially in very conservative parts of our society –

like medicine. Here I go with a bit of anecdotal evidence.

When I was diagnosed in 1996 t was

virtually impossible to even DISCUSS Watchful Waiting as AS (Active

Surveillance) was called back then. You cannot believe some of the accusations

thrown at me when I tried to discuss the pros and cans of what was seen

as such a weird concept. The polite people were really worried about me because

they knew I was in denial, that I did not understand the issues. There was an escalation

from there from people implying or even saying outright that because I was not

properly educated I couldn’t grasp the truth revealed by science. Next

stop up from that was the posts doubting my sanity. From there I was told I should not post anything which

contradicted the standard advice of medical advisers.. And on and on the insults

and accusations went. The one accusation that still stands out in my mind was

that I was as guilty as Hitler in that I was trying to start a program of

geriatricide – the killing of old men.

Now I had a fairly thick

hide and developed ways to avoid direct conflict while showing some of these

men what fools they were. The easiest ones to deal with were those who

proclaimed tat the ONLY TRUTH COULD BE FOUND IN SCIENCE: SCIENCE HAD ALL THE

ANSWERS. To them I put one question – “Please tell me what action I

should take – here are the details of my diagnosis. When responding

please lead me to the science that supports the light which you will shine on

me.” Of course, as we all know science has been remarkably unable to give

us any clear direction.

What really got me into

trouble though was when I suggested that if, perhaps I posted all my errant and

misleading thoughts with a suitable warning, people could delete them without

reading them and therefore not be mislead. This was my suggested wording:

HEALTH WARNING: This post may contain information or views which may

jar your current paradigm. Should you wish to stay in the tranquillity of your

comfort zone hit the Delete button NOW. Proceeding to read this post implies

acceptance of the fact that you are prepared to possibly learn something new or

see existing information from a different viewpoint.

OMG, the solids really

got into the air-conditioning in response to that. I received some really hot

hate mail, much of which suggested in that endearing USA term that I had intercourse with

my mother.

Contrast that situation

with the situation today. There is no longer the ukase that AS cannot be

discussed or considered. There are now actually some doctors who will put that

option on the table for discussion along with the options that are chosen more

often. There are still arguments and discussions about AS – there will be

for many years yet in trying to establish what the safe parameters of a diagnosis

point to AS as a good potential choice. But thse discussions are rarely carried

out with rancour and insults, but rather with logical argument with the ai of

people gaining a better understanding.

Of course I would have

liked to see everything move a bit quicker, to see more doctors understanding

the issues better, but it has only been sixteen years since I was diagnosed and

the change is measurable. Maybe in another fifteen years, there will be a

standard approach, based on sound s cience – possibly genetics –

that will give more comfort to men with a diagnosis of insignificant indolent

disease.

All the best

Prostate men need enlightening, not

frightening

Terry Herbert - diagnosed in 1996 and

still going strong

Read A Strange Place for unbiased information at http://www.yananow.org/StrangePlace/index.html

From:

ProstateCancerSupport [mailto:ProstateCancerSupport ]

On Behalf Of Alan Meyer

Sent: Friday, 25 May 2012 2:28 PM

To:

ProstateCancerSupport

Subject: Re:

Re: Men's Health Network and Veterans Health Council

Oppose Final USPSTF Recommendation Against Prostate Cancer Screening

Rich,

I wish it weren't so, but I agree that you're right. My

proposals are probably infeasible in the current environment. We

can't get top quality physicians or best known practices to treat

every patient. After all, half the physicians in the country are

at or below average and half the patients get those physicians.

However I believe that we have actually made considerable

progress and can make more, both in getting patients to real

specialists, and in raising awareness among doctors of what best

practices are. Some significant steps have been taken, for

example:

I think a much higher percentage of patients are referred to

specialists than was the case 50 years ago.

There are more programs in place now to monitor hospital

outcomes and promote best practices in the U.S., for

example

in preventing infections contracted in hospitals. We

still

have a LONG way to go with this, but there has been

progress.

The National Cancer Institute has developed new standards

for

qualitatively defining the " levels of evidence "

for all

treatments, and (I hope) more doctors are paying attention.

They are also evaluating cancer centers nationwide, and

publishing guidelines for the treatment of all cancers.

One thing that is practical I think, is to define specialties a

little more narrowly than at present. For example, some

urologists do a lot of prostate surgery and some do very little.

If we could somehow certify specialists for subspecialties or

require that they make more information available about

themselves, maybe that would help patients to find out which

doctors are doing 200 prostatectomies a year and which ones are

doing 5.

I know the problems are difficult. Progress is slow. But I'm

hoping that we can raise consciousness around the issues and

continue to make more and more progress.

Alan

Re: Men's Health Network and

> Veterans Health Council Oppose Final USPSTF Recommendation

> Against Prostate Cancer Screening

>

> Alan, You are absolutely correct in your perspective.

> Unfortunately, it is not feasible, at least today, to find

> " best practices " of treatment throughout the country. Matter of

> fact, many are met with a gloom and doom prognostication that

> may or may not be warranted. That latter happened to my

> neighbor. As with any activity where there is little

> consistency, many egos, and numerous other causes, treatments

> vary widely based upon even wider abilities to either provide

> or assess those treatments.

>

> Under the current scenario of medical practice in the USA, the

> recommended approach is valid. Furthermore, there aren't enough

> Dr Myers to treat everyone. The underlying issue is far larger

> than the panel's recommended approach.

>

> The next generation proton radiation therapy machines are

> being, or were being, developed upon the economic model derived

> from prostate cancer treatment. PCa treatment is considered the

> based load revenue source.

>

> I wish it were different but it is not.

May 25, 2012

Terry:Your like me -- I don't miss those days. After my experience with prostate cancer and HRT in 2002 I took a route of high testosterone, keeping my serum level above1,500 NG/Dl. The majority of doctors called me crazy and the on line "non support groups" weren't any better. High testosterone hasn't killed me yet in 10 years but it has kept me in good physical and mental condition. Things are changing--- not as fast as we think they should -- . The only thing that seems to go fast these days are birthdays. Old opinions are hard to break and misinformation has a life of it's own. The good news is that there are people like you that are opening the eyes of some ---- ThanksHenry//////////////////////////////////

Gee, gents. C’mon, cheer up. Things

change slowly, especially in very conservative parts of our society –

like medicine. Here I go with a bit of anecdotal evidence. When I was diagnosed in 1996 t was