Re: ProstateCancerConsumer.pdf (application/pdf Object)

[Guest guest]

I think that it is a useful booklet for

someone who has never heard of a prostate and has no idea about what their

options are after hearing that they have been diagnosed with PCa.

The limitations are obvious to anyone who

has been around the disease for any length of time and has learned a bit, but

they certainly won’t be obvious to the newly diagnosed who may therefore

not be prepared to investigate the claims of treatments other than those

mentioned in the booklet, some of which may provide a more satisfactory result

for them.

I have to say I was puzzled by the

reference to ED, bladder incontinence and bowel problems developing within two

years of the man electing to follow an Active Surveillance course – how do

these develop, why do they develop and where is the data to support the statements.

Of course the figures for other treatments are also arguable.

Finally, isn’t this extract, whilst undoubtedly

true, a terrible indictment of the state of the way in which prostate

cancer is dealt with:

<snip> This guide focuses on the

long-term results of treatments. There isn’t research yet that compares

the effects over time of all four treatments. But there is research that

compares a few of the treatments to each other. Some treatments have been

compared after 10 years and others after 5 years. Most of the research so far

started before PSA testing was common. Today, PSA testing is widely used. It

helps find the cancers earlier and when they are smaller. Research today

includes men whose prostate cancers are found by PSA testing. Not enough time

has passed to know the long-term results of this research. <snip>

“Most of the research so far started

before PSA testing was common…….Not enough time has passed to know

the long-term results of this research. <snip>

PSA testing was initiated more than 20

years ago and not enough time has passed to know the results of the

introduction of PSA testing? How much time is needed – 50 years, 75, a hundred?

All the best

Terry Herbert

I have no medical

qualifications but I was diagnosed in ‘96: and have learned a bit since

then.

My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za

Dr

“Snuffy” Myers : " As a physician, I am painfully aware that most of

the decisions we make with regard to prostate cancer are made with inadequate

data "

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Kathy Meade

Sent: Monday, 24 November 2008

3:43 AM

To: Kathy Meade

Subject:

ProstateCancerConsumer.pdf (application/pdf Object)

http://effectivehealthcare.ahrq.gov/repFiles/ProstateCancerConsumer.pdf

As

part of the movement toward Comparative Effectiveness Research this document

has been produced for patients by AHRQ. I think we should be aware that

distribution in the US

is being planned and may happen more in the future. I think that lack of money

may slow it down.

What

do you see as positive or negative in this booklet?

Kathy

[Guest guest]

I think that it is a useful booklet for

someone who has never heard of a prostate and has no idea about what their

options are after hearing that they have been diagnosed with PCa.

The limitations are obvious to anyone who

has been around the disease for any length of time and has learned a bit, but

they certainly won’t be obvious to the newly diagnosed who may therefore

not be prepared to investigate the claims of treatments other than those

mentioned in the booklet, some of which may provide a more satisfactory result

for them.

I have to say I was puzzled by the

reference to ED, bladder incontinence and bowel problems developing within two

years of the man electing to follow an Active Surveillance course – how do

these develop, why do they develop and where is the data to support the statements.

Of course the figures for other treatments are also arguable.

Finally, isn’t this extract, whilst undoubtedly

true, a terrible indictment of the state of the way in which prostate

cancer is dealt with:

<snip> This guide focuses on the

long-term results of treatments. There isn’t research yet that compares

the effects over time of all four treatments. But there is research that

compares a few of the treatments to each other. Some treatments have been

compared after 10 years and others after 5 years. Most of the research so far

started before PSA testing was common. Today, PSA testing is widely used. It

helps find the cancers earlier and when they are smaller. Research today

includes men whose prostate cancers are found by PSA testing. Not enough time

has passed to know the long-term results of this research. <snip>

“Most of the research so far started

before PSA testing was common…….Not enough time has passed to know

the long-term results of this research. <snip>

PSA testing was initiated more than 20

years ago and not enough time has passed to know the results of the

introduction of PSA testing? How much time is needed – 50 years, 75, a hundred?

All the best

Terry Herbert

I have no medical

qualifications but I was diagnosed in ‘96: and have learned a bit since

then.

My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za

Dr

“Snuffy” Myers : " As a physician, I am painfully aware that most of

the decisions we make with regard to prostate cancer are made with inadequate

data "

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Kathy Meade

Sent: Monday, 24 November 2008

3:43 AM

To: Kathy Meade

Subject:

ProstateCancerConsumer.pdf (application/pdf Object)

http://effectivehealthcare.ahrq.gov/repFiles/ProstateCancerConsumer.pdf

As

part of the movement toward Comparative Effectiveness Research this document

has been produced for patients by AHRQ. I think we should be aware that

distribution in the US

is being planned and may happen more in the future. I think that lack of money

may slow it down.

What

do you see as positive or negative in this booklet?

Kathy

[Guest guest]

Quoting from the booklet:

> “Most of the research so far started before PSA testing was common…….Not

> enough time has passed to know the long-term results of this research.

Terry replied

> PSA testing was initiated more than 20 years ago and not enough time has

> passed to know the results of the introduction of PSA testing? How much

> time is needed – 50 years, 75, a hundred?

We must cope with the information we have at hand.

Here's the best I can find: Bartsch G, et al., " Prostate cancer

mortality after introduction of prostate-specific antigen mass screening

in the Federal State of Tyrol, Austria. " Urology. 2001 Sep;58(3):417-24.

Pub Med ID 11549491.

Conclusion: " These findings are consistent with the hypothesis that the

policy of making PSA testing freely available, and the wide acceptance

by men in the population, is associated with a reduction in prostate

cancer mortality in an area in which urology services and radiotherapy

are available freely to all patients. "

And that was only the beginning....

So far as my studies have led me, I am prepared to assert that there is

no shadow of a doubt that PSA testing leads to saved lives.

Regards,

Steve J

[Guest guest]

Quoting from the booklet:

> “Most of the research so far started before PSA testing was common…….Not

> enough time has passed to know the long-term results of this research.

Terry replied

> PSA testing was initiated more than 20 years ago and not enough time has

> passed to know the results of the introduction of PSA testing? How much

> time is needed – 50 years, 75, a hundred?

We must cope with the information we have at hand.

Here's the best I can find: Bartsch G, et al., " Prostate cancer

mortality after introduction of prostate-specific antigen mass screening

in the Federal State of Tyrol, Austria. " Urology. 2001 Sep;58(3):417-24.

Pub Med ID 11549491.

Conclusion: " These findings are consistent with the hypothesis that the

policy of making PSA testing freely available, and the wide acceptance

by men in the population, is associated with a reduction in prostate

cancer mortality in an area in which urology services and radiotherapy

are available freely to all patients. "

And that was only the beginning....

So far as my studies have led me, I am prepared to assert that there is

no shadow of a doubt that PSA testing leads to saved lives.

Regards,

Steve J

[Guest guest]

Quoting from the booklet:

> “Most of the research so far started before PSA testing was common…….Not

> enough time has passed to know the long-term results of this research.

Terry replied

> PSA testing was initiated more than 20 years ago and not enough time has

> passed to know the results of the introduction of PSA testing? How much

> time is needed – 50 years, 75, a hundred?

We must cope with the information we have at hand.

Here's the best I can find: Bartsch G, et al., " Prostate cancer

mortality after introduction of prostate-specific antigen mass screening

in the Federal State of Tyrol, Austria. " Urology. 2001 Sep;58(3):417-24.

Pub Med ID 11549491.

Conclusion: " These findings are consistent with the hypothesis that the

policy of making PSA testing freely available, and the wide acceptance

by men in the population, is associated with a reduction in prostate

cancer mortality in an area in which urology services and radiotherapy

are available freely to all patients. "

And that was only the beginning....

So far as my studies have led me, I am prepared to assert that there is

no shadow of a doubt that PSA testing leads to saved lives.

Regards,

Steve J

[Guest guest]

I'm not buying into a discussion about the merits or de-merits of PSA

screening

But I will say that a detailed analysis of the Tyrol study to which Steve J

refers demonstrates that statistics, used skillfully, can demonstrate a wide

variety of outcomes and the choice of the outcomes may be influenced by the

authors of the study.

Just one small point: only two urologists were involved in the study and did

all the additional surgeries that resulted from the screening (and

presumably supplied the information regarding the outcome). I have no wish

to impugn their reputation but in all fairness the question has to be asked

" Did they have an interest in the outcome of the experiment? "

All the best

Terry Herbert

I have no medical qualifications but I was diagnosed in '96: and have

learned a bit since then.

My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za

Dr " Snuffy " Myers : " As a physician, I am painfully aware that most

of the decisions we make with regard to prostate cancer are made with

inadequate data "

Re: ProstateCancerConsumer.pdf

(application/pdf Object)

Quoting from the booklet:

> " Most of the research so far started before PSA testing was common...Not

> enough time has passed to know the long-term results of this research.

Terry replied

> PSA testing was initiated more than 20 years ago and not enough time has

> passed to know the results of the introduction of PSA testing? How much

> time is needed - 50 years, 75, a hundred?

We must cope with the information we have at hand.

Here's the best I can find: Bartsch G, et al., " Prostate cancer

mortality after introduction of prostate-specific antigen mass screening

in the Federal State of Tyrol, Austria. " Urology. 2001 Sep;58(3):417-24.

Pub Med ID 11549491.

Conclusion: " These findings are consistent with the hypothesis that the

policy of making PSA testing freely available, and the wide acceptance

by men in the population, is associated with a reduction in prostate

cancer mortality in an area in which urology services and radiotherapy

are available freely to all patients. "

And that was only the beginning....

So far as my studies have led me, I am prepared to assert that there is

no shadow of a doubt that PSA testing leads to saved lives.

Regards,

Steve J

------------------------------------

There are just two rules for this group

1 No Spam

2 Be kind to others

Please recognise that Prostate Cancerhas different guises and needs

different levels of treatment and in some cases no treatment at all. Some

men even with all options offered chose radical options that you would not

choose. We only ask that people be informed before choice is made, we cannot

and should not tell other members what to do, other than look at other

options.

Try to delete old material that is no longer applying when clicking reply

Try to change the title if the content requires it

[Guest guest]

I'm not buying into a discussion about the merits or de-merits of PSA

screening

But I will say that a detailed analysis of the Tyrol study to which Steve J

refers demonstrates that statistics, used skillfully, can demonstrate a wide

variety of outcomes and the choice of the outcomes may be influenced by the

authors of the study.

Just one small point: only two urologists were involved in the study and did

all the additional surgeries that resulted from the screening (and

presumably supplied the information regarding the outcome). I have no wish

to impugn their reputation but in all fairness the question has to be asked

" Did they have an interest in the outcome of the experiment? "

All the best

Terry Herbert

I have no medical qualifications but I was diagnosed in '96: and have

learned a bit since then.

My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za

Dr " Snuffy " Myers : " As a physician, I am painfully aware that most

of the decisions we make with regard to prostate cancer are made with

inadequate data "

Re: ProstateCancerConsumer.pdf

(application/pdf Object)

Quoting from the booklet:

> " Most of the research so far started before PSA testing was common...Not

> enough time has passed to know the long-term results of this research.

Terry replied

> PSA testing was initiated more than 20 years ago and not enough time has

> passed to know the results of the introduction of PSA testing? How much

> time is needed - 50 years, 75, a hundred?

We must cope with the information we have at hand.

Here's the best I can find: Bartsch G, et al., " Prostate cancer

mortality after introduction of prostate-specific antigen mass screening

in the Federal State of Tyrol, Austria. " Urology. 2001 Sep;58(3):417-24.

Pub Med ID 11549491.

Conclusion: " These findings are consistent with the hypothesis that the

policy of making PSA testing freely available, and the wide acceptance

by men in the population, is associated with a reduction in prostate

cancer mortality in an area in which urology services and radiotherapy

are available freely to all patients. "

And that was only the beginning....

So far as my studies have led me, I am prepared to assert that there is

no shadow of a doubt that PSA testing leads to saved lives.

Regards,

Steve J

------------------------------------

There are just two rules for this group

1 No Spam

2 Be kind to others

Please recognise that Prostate Cancerhas different guises and needs

different levels of treatment and in some cases no treatment at all. Some

men even with all options offered chose radical options that you would not

choose. We only ask that people be informed before choice is made, we cannot

and should not tell other members what to do, other than look at other

options.

Try to delete old material that is no longer applying when clicking reply

Try to change the title if the content requires it

[Guest guest]

I'm not buying into a discussion about the merits or de-merits of PSA

screening

But I will say that a detailed analysis of the Tyrol study to which Steve J

refers demonstrates that statistics, used skillfully, can demonstrate a wide

variety of outcomes and the choice of the outcomes may be influenced by the

authors of the study.

Just one small point: only two urologists were involved in the study and did

all the additional surgeries that resulted from the screening (and

presumably supplied the information regarding the outcome). I have no wish

to impugn their reputation but in all fairness the question has to be asked

" Did they have an interest in the outcome of the experiment? "

All the best

Terry Herbert

I have no medical qualifications but I was diagnosed in '96: and have

learned a bit since then.

My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za

Dr " Snuffy " Myers : " As a physician, I am painfully aware that most

of the decisions we make with regard to prostate cancer are made with

inadequate data "

Re: ProstateCancerConsumer.pdf

(application/pdf Object)

Quoting from the booklet:

> " Most of the research so far started before PSA testing was common...Not

> enough time has passed to know the long-term results of this research.

Terry replied

> PSA testing was initiated more than 20 years ago and not enough time has

> passed to know the results of the introduction of PSA testing? How much

> time is needed - 50 years, 75, a hundred?

We must cope with the information we have at hand.

Here's the best I can find: Bartsch G, et al., " Prostate cancer

mortality after introduction of prostate-specific antigen mass screening

in the Federal State of Tyrol, Austria. " Urology. 2001 Sep;58(3):417-24.

Pub Med ID 11549491.

Conclusion: " These findings are consistent with the hypothesis that the

policy of making PSA testing freely available, and the wide acceptance

by men in the population, is associated with a reduction in prostate

cancer mortality in an area in which urology services and radiotherapy

are available freely to all patients. "

And that was only the beginning....

So far as my studies have led me, I am prepared to assert that there is

no shadow of a doubt that PSA testing leads to saved lives.

Regards,

Steve J

------------------------------------

There are just two rules for this group

1 No Spam

2 Be kind to others

Please recognise that Prostate Cancerhas different guises and needs

different levels of treatment and in some cases no treatment at all. Some

men even with all options offered chose radical options that you would not

choose. We only ask that people be informed before choice is made, we cannot

and should not tell other members what to do, other than look at other

options.

Try to delete old material that is no longer applying when clicking reply

Try to change the title if the content requires it

[Guest guest]

I think the Gov. medicare program does not want to pay for surgery. The number of Baby boomers turning 60 and up is why they say "watchful waiting". The line" find a hospital doing 43 surgeries per year" Ohio state does that per week, My Dr., who is Director of Robotic Surgery, has been doing been doing this for 3yr. and does 24 per week= 1248 per year. He also helped do the testing and research when he was at Hopkins. If you go to da Vinci Surgery web site, they have the data, the studies, and clinical published reports on Robotics starting in 2002.. How the Gov. can say "No data on robotics " I think the booklet is a waste of ink and paper.

Subject: ProstateCancerConsumer.pdf (application/pdf Object)To: "Kathy Meade" Date: Sunday, November 23, 2008, 11:42 AM

http://effectivehea lthcare.ahrq. gov/repFiles/ ProstateCancerCo nsumer.pdf

As part of the movement toward Comparative Effectiveness Research this document has been produced for patients by AHRQ. I think we should be aware that distribution in the US is being planned and may happen more in the future. I think that lack of money may slow it down.

What do you see as positive or negative in this booklet?

Kathy

[Guest guest]

I think the Gov. medicare program does not want to pay for surgery. The number of Baby boomers turning 60 and up is why they say "watchful waiting". The line" find a hospital doing 43 surgeries per year" Ohio state does that per week, My Dr., who is Director of Robotic Surgery, has been doing been doing this for 3yr. and does 24 per week= 1248 per year. He also helped do the testing and research when he was at Hopkins. If you go to da Vinci Surgery web site, they have the data, the studies, and clinical published reports on Robotics starting in 2002.. How the Gov. can say "No data on robotics " I think the booklet is a waste of ink and paper.

Subject: ProstateCancerConsumer.pdf (application/pdf Object)To: "Kathy Meade" Date: Sunday, November 23, 2008, 11:42 AM

http://effectivehea lthcare.ahrq. gov/repFiles/ ProstateCancerCo nsumer.pdf

As part of the movement toward Comparative Effectiveness Research this document has been produced for patients by AHRQ. I think we should be aware that distribution in the US is being planned and may happen more in the future. I think that lack of money may slow it down.

What do you see as positive or negative in this booklet?

Kathy

[Guest guest]

I'm somewhat torn on the subject of educational booklets like this one from the AHRQ. On the one hand, any information that educates and informs men (and their families) about PCa/CaP can't help but be a good thing. On the other hand...

"This guide does not cover how to prevent prostate cancer. It also does not talk about other treatments, like ultrasound treatment, cryotherapy (freezing treatment), laparoscopic surgery (also called bandaid or keyhole surgery), or robotic surgery. These are newer treatments. There isn't enough research yet to tell us how well they work compared with other treatments. This guide also does not cover herbal products (like green tea) or vitamins and minerals (like selenium). It does not include treatments, like chemotherapy, for prostate cancer that has already spread outside the prostate gland."

including information like the above in what essentially amounts to an introductory guide on the disease (read: heavy emphasis on the "usual suspects" treatments) may serve to confuse the newly diagnosed yet already terrified patient.

If I had a few moments to give an "elevator pitch" to the person(s) responsible for putting this booklet together, I would recommend that the section above be removed and that doctors (both family doctors as well as urologists) be encouraged to provide this information to men in high risk categories who have not yet been diagnosed.

>> http://effectivehealthcare.ahrq.gov/repFiles/ProstateCancerConsumer.pdf > > As part of the movement toward Comparative Effectiveness Research this> document has been produced for patients by AHRQ. I think we should be aware> that distribution in the US is being planned and may happen more in the> future. I think that lack of money may slow it down.> > What do you see as positive or negative in this booklet?> > Kathy>