Re: Should you trust health advice from internet forums

[Guest guest]

I'll second Terry's comments.

My local urologist's practice is well respected and busy. If I ultimately decide to have open surgery to remove my prostate, I would have no problem having the operation done locally- the surgeons have excellent track records. However, the doctors and PAs do not keep up with the science, or, they are so busy that they apply generalizations to their patients. When diagnosed, my doctor repeated in two consults with me and my wife that 'prostate cancers like yours typically have doubling times of two years, so you should not delay treatment'. This was despite my presenting a long history of PSA kinetics showing a doubling time for MY cancer of 7 years. Which has continued three years after those consults. Rather than look at my specific case, we were presented with generalizations.

More recently, I asked if the local uros would order a PCA3 test, as recent papers suggest that it is a better diagnostic than PSA, not only for presence of cancer, but, for PCA3 values over 45, for probability of a more aggressive cancer. Information that would be valuable for Active Surveillance monitoring. The physician assistant in the practice, who now screens most patients before they even see a urologist, had never heard of PCA3. I explained the test to him and mentioned that it was not yet approved by FDA in the US, but was available upon request from Bostwick. He ducked out for a check with the urologist (who didn't have time to see me personally), and came back and told me that they would not order tests not approved by FDA.

So much for medical information being 'best obtained' from a healthcare professional. Sometimes that's the case, but for individuals who weigh the info on the forums with some thought, and follow up with their own readings, the forums can be a valuable supplement to what patients hear from, or in worst cases, pry from, their doctors.

The Best to You and Yours!

Jon in Nevada

In a message dated 11/15/2008 1:26:55 AM Pacific Standard Time, ProstateCancerSupport writes:

Murray (the author of the piece) also believes that <snip> ...patient-ledsites are fantastic tools for emotional and practical support, but medicalinformation is best obtained from a well-known site . or from a healthcareprofessional. <snip> I'd agree with that but for the fact that so many healthcare professionalsseem not to be up to date with critical areas of the diagnosis and treatmentof prostate cancer - or if they are up to date, they are not communicatingthis to the people who come to this, and other, Forums seeking explanationsof medical information that has not been properly explained to them by theirhealthcare professional.

You Rock! One month of free movies delivered by mail from blockbuster.com

[Guest guest]

I'm in England, and I'm having a PCA3 test in a few days. Over here

it's recognised as a good test.

It costs £250, which is about $US 350.00.

Ted

>

>

> I'll second Terry's comments.

>

> My local urologist's practice is well respected and busy. If I

ultimately

> decide to have open surgery to remove my prostate, I would have no

problem having

> the operation done locally- the surgeons have excellent track records.

> However, the doctors and PAs do not keep up with the science, or, they

are so busy

> that they apply generalizations to their patients. When diagnosed, my

doctor

> repeated in two consults with me and my wife that 'prostate cancers

like yours

> typically have doubling times of two years, so you should not delay

> treatment'. This was despite my presenting a long history of PSA

kinetics showing a

> doubling time for MY cancer of 7 years. Which has continued three

years after

> those consults. Rather than look at my specific case, we were

presented with

> generalizations.

>

> More recently, I asked if the local uros would order a PCA3 test, as

recent

> papers suggest that it is a better diagnostic than PSA, not only for

presence

> of cancer, but, for PCA3 values over 45, for probability of a more

aggressive

> cancer. Information that would be valuable for Active Surveillance

monitoring.

> The physician assistant in the practice, who now screens most patients

> before they even see a urologist, had never heard of PCA3. I explained

the test to

> him and mentioned that it was not yet approved by FDA in the US, but

was

> available upon request from Bostwick. He ducked out for a check with

the

> urologist (who didn't have time to see me personally), and came back

and told me that

> they would not order tests not approved by FDA.

>

> So much for medical information being 'best obtained' from a

healthcare

> professional. Sometimes that's the case, but for individuals who weigh

the info on

> the forums with some thought, and follow up with their own readings,

the

> forums can be a valuable supplement to what patients hear from, or in

worst cases,

> pry from, their doctors.

>

> The Best to You and Yours!

>

> Jon in Nevada

>

> In a message dated 11/15/2008 1:26:55 AM Pacific Standard Time,

> ProstateCancerSupport writes:

>

> Murray (the author of the piece) also believes that <snip>

....patient-led

> sites are fantastic tools for emotional and practical support, but

medical

> information is best obtained from a well-known site . or from a

healthcare

> professional. <snip>

>

> I'd agree with that but for the fact that so many healthcare

professionals

> seem not to be up to date with critical areas of the diagnosis and

treatment

> of prostate cancer - or if they are up to date, they are not

communicating

> this to the people who come to this, and other, Forums seeking

explanations

> of medical information that has not been properly explained to them by

their

> healthcare professional.

>

>

> **************You Rock! One month of free movies delivered by mail

from

> blockbuster.com

>

(http://pr.atwola.com/promoclk/100000075x1212639737x1200784900/aol?redir\

=https://www.blockbuster.com/signup/y/reg/p.26978/r.email_footer)

>

[Guest guest]

I'm in England, and I'm having a PCA3 test in a few days. Over here

it's recognised as a good test.

It costs £250, which is about $US 350.00.

Ted

>

>

> I'll second Terry's comments.

>

> My local urologist's practice is well respected and busy. If I

ultimately

> decide to have open surgery to remove my prostate, I would have no

problem having

> the operation done locally- the surgeons have excellent track records.

> However, the doctors and PAs do not keep up with the science, or, they

are so busy

> that they apply generalizations to their patients. When diagnosed, my

doctor

> repeated in two consults with me and my wife that 'prostate cancers

like yours

> typically have doubling times of two years, so you should not delay

> treatment'. This was despite my presenting a long history of PSA

kinetics showing a

> doubling time for MY cancer of 7 years. Which has continued three

years after

> those consults. Rather than look at my specific case, we were

presented with

> generalizations.

>

> More recently, I asked if the local uros would order a PCA3 test, as

recent

> papers suggest that it is a better diagnostic than PSA, not only for

presence

> of cancer, but, for PCA3 values over 45, for probability of a more

aggressive

> cancer. Information that would be valuable for Active Surveillance

monitoring.

> The physician assistant in the practice, who now screens most patients

> before they even see a urologist, had never heard of PCA3. I explained

the test to

> him and mentioned that it was not yet approved by FDA in the US, but

was

> available upon request from Bostwick. He ducked out for a check with

the

> urologist (who didn't have time to see me personally), and came back

and told me that

> they would not order tests not approved by FDA.

>

> So much for medical information being 'best obtained' from a

healthcare

> professional. Sometimes that's the case, but for individuals who weigh

the info on

> the forums with some thought, and follow up with their own readings,

the

> forums can be a valuable supplement to what patients hear from, or in

worst cases,

> pry from, their doctors.

>

> The Best to You and Yours!

>

> Jon in Nevada

>

> In a message dated 11/15/2008 1:26:55 AM Pacific Standard Time,

> ProstateCancerSupport writes:

>

> Murray (the author of the piece) also believes that <snip>

....patient-led

> sites are fantastic tools for emotional and practical support, but

medical

> information is best obtained from a well-known site . or from a

healthcare

> professional. <snip>

>

> I'd agree with that but for the fact that so many healthcare

professionals

> seem not to be up to date with critical areas of the diagnosis and

treatment

> of prostate cancer - or if they are up to date, they are not

communicating

> this to the people who come to this, and other, Forums seeking

explanations

> of medical information that has not been properly explained to them by

their

> healthcare professional.

>

>

> **************You Rock! One month of free movies delivered by mail

from

> blockbuster.com

>

(http://pr.atwola.com/promoclk/100000075x1212639737x1200784900/aol?redir\

=https://www.blockbuster.com/signup/y/reg/p.26978/r.email_footer)

>

[Guest guest]

I think it is time to do a video on the status of PCA3 but I would urge caution as there is very little information on how to use the test because no good studies have been done yet with adequate follow-upTo: ProstateCancerSupport Sent: Wednesday, December 10, 2008 4:36:31 AMSubject: Re: Should you trust health advice from internet forums

I'm in England, and I'm having a PCA3 test in a few days. Over here

it's recognised as a good test.

It costs £250, which is about $US 350.00.

Ted

>

>

> I'll second Terry's comments.

>

> My local urologist's practice is well respected and busy. If I

ultimately

> decide to have open surgery to remove my prostate, I would have no

problem having

> the operation done locally- the surgeons have excellent track records.

> However, the doctors and PAs do not keep up with the science, or, they

are so busy

> that they apply generalizations to their patients. When diagnosed, my

doctor

> repeated in two consults with me and my wife that 'prostate cancers

like yours

> typically have doubling times of two years, so you should not delay

> treatment'. This was despite my presenting a long history of PSA

kinetics showing a

> doubling time for MY cancer of 7 years. Which has continued three

years after

> those consults. Rather than look at my specific case, we were

presented with

> generalizations.

>

> More recently, I asked if the local uros would order a PCA3 test, as

recent

> papers suggest that it is a better diagnostic than PSA, not only for

presence

> of cancer, but, for PCA3 values over 45, for probability of a more

aggressive

> cancer. Information that would be valuable for Active Surveillance

monitoring.

> The physician assistant in the practice, who now screens most patients

> before they even see a urologist, had never heard of PCA3. I explained

the test to

> him and mentioned that it was not yet approved by FDA in the US, but

was

> available upon request from Bostwick. He ducked out for a check with

the

> urologist (who didn't have time to see me personally), and came back

and told me that

> they would not order tests not approved by FDA.

>

> So much for medical information being 'best obtained' from a

healthcare

> professional. Sometimes that's the case, but for individuals who weigh

the info on

> the forums with some thought, and follow up with their own readings,

the

> forums can be a valuable supplement to what patients hear from, or in

worst cases,

> pry from, their doctors.

>

> The Best to You and Yours!

>

> Jon in Nevada

>

> In a message dated 11/15/2008 1:26:55 AM Pacific Standard Time,

> ProstateCancerSuppo rtyahoogroups (DOT) com writes:

>

> Murray (the author of the piece) also believes that <snip>

....patient-led

> sites are fantastic tools for emotional and practical support, but

medical

> information is best obtained from a well-known site . or from a

healthcare

> professional. <snip>

>

> I'd agree with that but for the fact that so many healthcare

professionals

> seem not to be up to date with critical areas of the diagnosis and

treatment

> of prostate cancer - or if they are up to date, they are not

communicating

> this to the people who come to this, and other, Forums seeking

explanations

> of medical information that has not been properly explained to them by

their

> healthcare professional.

>

>

> ************ **You Rock! One month of free movies delivered by mail

from

> blockbuster. com

>

(http://pr.atwola. com/promoclk/ 100000075x121263 9737x1200784900/ aol?redir\

=https://www. blockbuster. com/signup/ y/reg/p.26978/ r.email_footer)

>

[Guest guest]

There are two aspects of the PCA3 test

that lead me to wonder just how good it would be in a practical environment,

rather than a laboratory environment.

In the first place there is a requirement

that the prostate gland be massaged “vigorously” as part of the

test. That’s a very vague term and difficult to maintain consistently. Apart

from the definition of the word there is the physical aspect – a doctor

with small hands may not be able to massage the gland vigorously enough for

example: does the degree of vigour vary with the size of the gland – do you

have to be more vigorous with a small gland than a big gland, for example?

The second point is that the PCA3 includes

the PSA result as part of the calculation of results – we know how

variable and inaccurate the PSA test can be – this variability and

inaccuracy will now be transferred to the PCA3 test.

It is also important to know that most of

the press releases etc praising the test are put out by the organization that

is said to hold the patent for the US – which is a pretty big

market. That might tempt them to make claims that aren’t quite what they

seem

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 Gerald Chodak

Sent: Thursday, 11 December 2008

2:29 AM

To: ProstateCancerSupport

Subject: Re:

Re: Should you trust health advice from internet forums

I think it is time to do a video on the status of PCA3 but I would urge

caution as there is very little information on how to use the test because no

good studies have been done yet with adequate follow-up

From: ukfizwit

<ukfizwityahoo (DOT) co.uk>

To: ProstateCancerSupport

Sent: Wednesday, December 10, 2008

4:36:31 AM

Subject:

Re: Should you trust health advice from internet forums

I'm in England,

and I'm having a PCA3 test in a few days. Over here

it's recognised as a good test.

It costs £250, which is about $US 350.00.

Ted

>

>

> I'll second Terry's comments.

>

> My local urologist's practice is well respected and busy. If I

ultimately

> decide to have open surgery to remove my prostate, I would have no

problem having

> the operation done locally- the surgeons have excellent track records.

> However, the doctors and PAs do not keep up with the science, or, they

are so busy

> that they apply generalizations to their patients. When diagnosed, my

doctor

> repeated in two consults with me and my wife that 'prostate cancers

like yours

> typically have doubling times of two years, so you should not delay

> treatment'. This was despite my presenting a long history of PSA

kinetics showing a

> doubling time for MY cancer of 7 years. Which has continued three

years after

> those consults. Rather than look at my specific case, we were

presented with

> generalizations.

>

> More recently, I asked if the local uros would order a PCA3 test, as

recent

> papers suggest that it is a better diagnostic than PSA, not only for

presence

> of cancer, but, for PCA3 values over 45, for probability of a more

aggressive

> cancer. Information that would be valuable for Active Surveillance

monitoring.

> The physician assistant in the practice, who now screens most patients

> before they even see a urologist, had never heard of PCA3. I explained

the test to

> him and mentioned that it was not yet approved by FDA in the US, but

was

> available upon request from Bostwick. He ducked out for a check with

the

> urologist (who didn't have time to see me personally), and came back

and told me that

> they would not order tests not approved by FDA.

>

> So much for medical information being 'best obtained' from a

healthcare

> professional. Sometimes that's the case, but for individuals who weigh

the info on

> the forums with some thought, and follow up with their own readings,

the

> forums can be a valuable supplement to what patients hear from, or in

worst cases,

> pry from, their doctors.

>

> The Best to You and Yours!

>

> Jon in Nevada

>

> In a message dated 11/15/2008 1:26:55 AM Pacific Standard Time,

> ProstateCancerSuppo

rtyahoogroups (DOT) com writes:

>

> Murray (the author of the piece) also believes that <snip>

....patient-led

> sites are fantastic tools for emotional and practical support, but

medical

> information is best obtained from a well-known site . or from a

healthcare

> professional. <snip>

>

> I'd agree with that but for the fact that so many healthcare

professionals

> seem not to be up to date with critical areas of the diagnosis and

treatment

> of prostate cancer - or if they are up to date, they are not

communicating

> this to the people who come to this, and other, Forums seeking

explanations

> of medical information that has not been properly explained to them by

their

> healthcare professional.

>

>

> ************ **You Rock! One month of free movies delivered by mail

from

> blockbuster. com

>

(http://pr.atwola. com/promoclk/ 100000075x121263

9737x1200784900/ aol?redir\

=https://www. blockbuster. com/signup/ y/reg/p.26978/ r.email_footer)

>

[Guest guest]

Yes I understand he has a good opinion, but it is only an opinion. I am looking for factual material that permits analysis and makes it possible to tell people what it does, how to use it and what is its value and for now none of that is possible.Gerald Chodak, M.D.To: ProstateCancerSupport Sent: Wednesday, December 10, 2008 11:39:04 AMSubject: Re: Should you trust health advice from internet forums

My consultant, who tends to be cautious about new claims,

nevertheless has a good opinion of the PCA3 test.

He doesn't claim it's 100% perfect. But neither is a biopsy.

Ted

> >

> >

> > I'll second Terry's comments.

> >

> > My local urologist's practice is well respected and busy. If I

> ultimately

> > decide to have open surgery to remove my prostate, I would have no

> problem having

> > the operation done locally- the surgeons have excellent track

records.

> > However, the doctors and PAs do not keep up with the science, or,

they

> are so busy

> > that they apply generalizations to their patients. When

diagnosed, my

> doctor

> > repeated in two consults with me and my wife that 'prostate

cancers

> like yours

> > typically have doubling times of two years, so you should not

delay

> > treatment'. This was despite my presenting a long history of PSA

> kinetics showing a

> > doubling time for MY cancer of 7 years. Which has continued three

> years after

> > those consults.. Rather than look at my specific case, we were

> presented with

> > generalizations.

> >

> > More recently, I asked if the local uros would order a PCA3 test,

as

> recent

> > papers suggest that it is a better diagnostic than PSA, not only

for

> presence

> > of cancer, but, for PCA3 values over 45, for probability of a more

> aggressive

> > cancer.. Information that would be valuable for Active

Surveillance

> monitoring.

> > The physician assistant in the practice, who now screens most

patients

> > before they even see a urologist, had never heard of PCA3. I

explained

> the test to

> > him and mentioned that it was not yet approved by FDA in the US,

but

> was

> > available upon request from Bostwick. He ducked out for a check

with

> the

> > urologist (who didn't have time to see me personally), and came

back

> and told me that

> > they would not order tests not approved by FDA.

> >

> > So much for medical information being 'best obtained' from a

> healthcare

> > professional.. Sometimes that's the case, but for individuals who

weigh

> the info on

> > the forums with some thought, and follow up with their own

readings,

> the

> > forums can be a valuable supplement to what patients hear from,

or in

> worst cases,

> > pry from, their doctors.

> >

> > The Best to You and Yours!

> >

> > Jon in Nevada

> >

> > In a message dated 11/15/2008 1:26:55 AM Pacific Standard Time,

> > ProstateCancerSuppo rtyahoogroups (DOT) com writes:

> >

> > Murray (the author of the piece) also believes that <snip>

> ...patient-led

> > sites are fantastic tools for emotional and practical support, but

> medical

> > information is best obtained from a well-known site . or from a

> healthcare

> > professional. <snip>

> >

> > I'd agree with that but for the fact that so many healthcare

> professionals

> > seem not to be up to date with critical areas of the diagnosis and

> treatment

> > of prostate cancer - or if they are up to date, they are not

> communicating

> > this to the people who come to this, and other, Forums seeking

> explanations

> > of medical information that has not been properly explained to

them by

> their

> > healthcare professional.

> >

> >

> > ************ **You Rock! One month of free movies delivered by

mail

> from

> > blockbuster. com

> >

> (http://pr.atwola. com/promoclk/ 100000075x121263 9737x1200784900/

aol?redir\

> =https://www. blockbuster. com/signup/ y/reg/p.26978/

r.email_footer)

> >

>

[Guest guest]

Seems to me I've read quite a few abstracts on results. Maybe not

long-term yet, but I've seen more and more study abstracts that

confirm its high specificity. I just had one actually.

I had a PSA jump from 1.0 to 1.6 over about 24 months at 51 years of

age. My uro wanted to do a biopsy (also have history of

calcifications, stones, and non-bacterial prostatitis) based on

PSAV. Repeated PSA by 2 new uros still showed 1.6 over 30 months.

Had a PCA3, result 4.9 (threshold for biopsy 35.0). Latest PSA at 35

months 1.4.

I also discovered that when my PSA jumped from 1.0 to 1.6 in

2006 ... that there was a change in immunoassays from Bayer to

Beckman-Coulter ... and I found an abstract that described a study

of 2200 men where the latter assay was shown to be 23% higher ... so

I also know that part of that " jump " was attributable to the change

in assays.

I think a biopsy here (although I was seriously considering it

intially) would have caused a lot of angst and discomfort and based

on what I've seen so far, would have been completely unnecessary. I

think the PCA3 test helped (at least so far) to confirm that I

didn't need a biopsy. Both of the " 2nd opinions " told me that they

are not concerned, and an oncologist told me that it is likely that

if I did have PCa, that I would see a continued increase in PSA over

time (i.e. it doesn't just jump once and then stop). I was also told

that the jump that I did see could very well have been due to

increasing age and prostate size ... that such increases in PSA are

rarely small and evenly distributed.

Larry

> > >

> > >

> > > I'll second Terry's comments.

> > >

> > > My local urologist's practice is well respected and busy. If I

> > ultimately

> > > decide to have open surgery to remove my prostate, I would

have no

> > problem having

> > > the operation done locally- the surgeons have excellent track

> records.

> > > However, the doctors and PAs do not keep up with the science,

or,

> they

> > are so busy

> > > that they apply generalizations to their patients. When

> diagnosed, my

> > doctor

> > > repeated in two consults with me and my wife that 'prostate

> cancers

> > like yours

> > > typically have doubling times of two years, so you should not

> delay

> > > treatment'. This was despite my presenting a long history of

PSA

> > kinetics showing a

> > > doubling time for MY cancer of 7 years. Which has continued

three

> > years after

> > > those consults. Rather than look at my specific case, we were

> > presented with

> > > generalizations.

> > >

> > > More recently, I asked if the local uros would order a PCA3

test,

> as

> > recent

> > > papers suggest that it is a better diagnostic than PSA, not

only

> for

> > presence

> > > of cancer, but, for PCA3 values over 45, for probability of a

more

> > aggressive

> > > cancer... Information that would be valuable for Active

> Surveillance

> > monitoring.

> > > The physician assistant in the practice, who now screens most

> patients

> > > before they even see a urologist, had never heard of PCA3.. I

> explained

> > the test to

> > > him and mentioned that it was not yet approved by FDA in the

US,

> but

> > was

> > > available upon request from Bostwick. He ducked out for a

check

> with

> > the

> > > urologist (who didn't have time to see me personally), and

came

> back

> > and told me that

> > > they would not order tests not approved by FDA.

> > >

> > > So much for medical information being 'best obtained' from a

> > healthcare

> > > professional. Sometimes that's the case, but for individuals

who

> weigh

> > the info on

> > > the forums with some thought, and follow up with their own

> readings,

> > the

> > > forums can be a valuable supplement to what patients hear

from,

> or in

> > worst cases,

> > > pry from, their doctors.

> > >

> > > The Best to You and Yours!

> > >

> > > Jon in Nevada

> > >

> > > In a message dated 11/15/2008 1:26:55 AM Pacific Standard Time,

> > > ProstateCancerSuppo rtyahoogroups (DOT) com writes:

> > >

> > > Murray (the author of the piece) also believes that <snip>

> > ...patient-led

> > > sites are fantastic tools for emotional and practical support,

but

> > medical

> > > information is best obtained from a well-known site . or from a

> > healthcare

> > > professional. <snip>

> > >

> > > I'd agree with that but for the fact that so many healthcare

> > professionals

> > > seem not to be up to date with critical areas of the diagnosis

and

> > treatment

> > > of prostate cancer - or if they are up to date, they are not

> > communicating

> > > this to the people who come to this, and other, Forums seeking

> > explanations

> > > of medical information that has not been properly explained to

> them by

> > their

> > > healthcare professional.

> > >

> > >

> > > ************ **You Rock! One month of free movies delivered by

> mail

> > from

> > > blockbuster. com

> > >

> > (http://pr.atwola. com/promoclk/ 100000075x121263

9737x1200784900/

> aol?redir\

> > =https://www. blockbuster. com/signup/ y/reg/p.26978/

> r.email_footer)

> > >

> >

>

[Guest guest]

Seems to me I've read quite a few abstracts on results. Maybe not

long-term yet, but I've seen more and more study abstracts that

confirm its high specificity. I just had one actually.

I had a PSA jump from 1.0 to 1.6 over about 24 months at 51 years of

age. My uro wanted to do a biopsy (also have history of

calcifications, stones, and non-bacterial prostatitis) based on

PSAV. Repeated PSA by 2 new uros still showed 1.6 over 30 months.

Had a PCA3, result 4.9 (threshold for biopsy 35.0). Latest PSA at 35

months 1.4.

I also discovered that when my PSA jumped from 1.0 to 1.6 in

2006 ... that there was a change in immunoassays from Bayer to

Beckman-Coulter ... and I found an abstract that described a study

of 2200 men where the latter assay was shown to be 23% higher ... so

I also know that part of that " jump " was attributable to the change

in assays.

I think a biopsy here (although I was seriously considering it

intially) would have caused a lot of angst and discomfort and based

on what I've seen so far, would have been completely unnecessary. I

think the PCA3 test helped (at least so far) to confirm that I

didn't need a biopsy. Both of the " 2nd opinions " told me that they

are not concerned, and an oncologist told me that it is likely that

if I did have PCa, that I would see a continued increase in PSA over

time (i.e. it doesn't just jump once and then stop). I was also told

that the jump that I did see could very well have been due to

increasing age and prostate size ... that such increases in PSA are

rarely small and evenly distributed.

Larry

> > >

> > >

> > > I'll second Terry's comments.

> > >

> > > My local urologist's practice is well respected and busy. If I

> > ultimately

> > > decide to have open surgery to remove my prostate, I would

have no

> > problem having

> > > the operation done locally- the surgeons have excellent track

> records.

> > > However, the doctors and PAs do not keep up with the science,

or,

> they

> > are so busy

> > > that they apply generalizations to their patients. When

> diagnosed, my

> > doctor

> > > repeated in two consults with me and my wife that 'prostate

> cancers

> > like yours

> > > typically have doubling times of two years, so you should not

> delay

> > > treatment'. This was despite my presenting a long history of

PSA

> > kinetics showing a

> > > doubling time for MY cancer of 7 years. Which has continued

three

> > years after

> > > those consults. Rather than look at my specific case, we were

> > presented with

> > > generalizations.

> > >

> > > More recently, I asked if the local uros would order a PCA3

test,

> as

> > recent

> > > papers suggest that it is a better diagnostic than PSA, not

only

> for

> > presence

> > > of cancer, but, for PCA3 values over 45, for probability of a

more

> > aggressive

> > > cancer... Information that would be valuable for Active

> Surveillance

> > monitoring.

> > > The physician assistant in the practice, who now screens most

> patients

> > > before they even see a urologist, had never heard of PCA3.. I

> explained

> > the test to

> > > him and mentioned that it was not yet approved by FDA in the

US,

> but

> > was

> > > available upon request from Bostwick. He ducked out for a

check

> with

> > the

> > > urologist (who didn't have time to see me personally), and

came

> back

> > and told me that

> > > they would not order tests not approved by FDA.

> > >

> > > So much for medical information being 'best obtained' from a

> > healthcare

> > > professional. Sometimes that's the case, but for individuals

who

> weigh

> > the info on

> > > the forums with some thought, and follow up with their own

> readings,

> > the

> > > forums can be a valuable supplement to what patients hear

from,

> or in

> > worst cases,

> > > pry from, their doctors.

> > >

> > > The Best to You and Yours!

> > >

> > > Jon in Nevada

> > >

> > > In a message dated 11/15/2008 1:26:55 AM Pacific Standard Time,

> > > ProstateCancerSuppo rtyahoogroups (DOT) com writes:

> > >

> > > Murray (the author of the piece) also believes that <snip>

> > ...patient-led

> > > sites are fantastic tools for emotional and practical support,

but

> > medical

> > > information is best obtained from a well-known site . or from a

> > healthcare

> > > professional. <snip>

> > >

> > > I'd agree with that but for the fact that so many healthcare

> > professionals

> > > seem not to be up to date with critical areas of the diagnosis

and

> > treatment

> > > of prostate cancer - or if they are up to date, they are not

> > communicating

> > > this to the people who come to this, and other, Forums seeking

> > explanations

> > > of medical information that has not been properly explained to

> them by

> > their

> > > healthcare professional.

> > >

> > >

> > > ************ **You Rock! One month of free movies delivered by

> mail

> > from

> > > blockbuster. com

> > >

> > (http://pr.atwola. com/promoclk/ 100000075x121263

9737x1200784900/

> aol?redir\

> > =https://www. blockbuster. com/signup/ y/reg/p.26978/

> r.email_footer)

> > >

> >

>

[Guest guest]

 hopefully valid data will be forthcoming but for now there is no evidence to say if they were right or wrong.  On the other hand, I think there are way too many biopsies being done on men such as yourself, prematurely.To: ProstateCancerSupport Sent: Thursday, December 11, 2008 1:05:16 PMSubject: Re: Should you trust health advice from internet forums

Seems to me I've read quite a few abstracts on results. Maybe not

long-term yet, but I've seen more and more study abstracts that

confirm its high specificity. I just had one actually.

I had a PSA jump from 1.0 to 1.6 over about 24 months at 51 years of

age. My uro wanted to do a biopsy (also have history of

calcifications, stones, and non-bacterial prostatitis) based on

PSAV. Repeated PSA by 2 new uros still showed 1.6 over 30 months.

Had a PCA3, result 4.9 (threshold for biopsy 35.0). Latest PSA at 35

months 1.4.

I also discovered that when my PSA jumped from 1.0 to 1.6 in

2006 ... that there was a change in immunoassays from Bayer to

Beckman-Coulter ... and I found an abstract that described a study

of 2200 men where the latter assay was shown to be 23% higher ... so

I also know that part of that "jump" was attributable to the change

in assays.

I think a biopsy here (although I was seriously considering it

intially) would have caused a lot of angst and discomfort and based

on what I've seen so far, would have been completely unnecessary. I

think the PCA3 test helped (at least so far) to confirm that I

didn't need a biopsy. Both of the "2nd opinions" told me that they

are not concerned, and an oncologist told me that it is likely that

if I did have PCa, that I would see a continued increase in PSA over

time (i.e. it doesn't just jump once and then stop). I was also told

that the jump that I did see could very well have been due to

increasing age and prostate size ... that such increases in PSA are

rarely small and evenly distributed.

Larry

> > >

> > >

> > > I'll second Terry's comments.

> > >

> > > My local urologist's practice is well respected and busy. If I

> > ultimately

> > > decide to have open surgery to remove my prostate, I would

have no

> > problem having

> > > the operation done locally- the surgeons have excellent track

> records.

> > > However, the doctors and PAs do not keep up with the science,

or,

> they

> > are so busy

> > > that they apply generalizations to their patients. When

> diagnosed, my

> > doctor

> > > repeated in two consults with me and my wife that 'prostate

> cancers

> > like yours

> > > typically have doubling times of two years, so you should not

> delay

> > > treatment'. This was despite my presenting a long history of

PSA

> > kinetics showing a

> > > doubling time for MY cancer of 7 years. Which has continued

three

> > years after

> > > those consults. Rather than look at my specific case, we were

> > presented with

> > > generalizations.

> > >

> > > More recently, I asked if the local uros would order a PCA3

test,

> as

> > recent

> > > papers suggest that it is a better diagnostic than PSA, not

only

> for

> > presence

> > > of cancer, but, for PCA3 values over 45, for probability of a

more

> > aggressive

> > > cancer... Information that would be valuable for Active

> Surveillance

> > monitoring.

> > > The physician assistant in the practice, who now screens most

> patients

> > > before they even see a urologist, had never heard of PCA3.. I

> explained

> > the test to

> > > him and mentioned that it was not yet approved by FDA in the

US,

> but

> > was

> > > available upon request from Bostwick. He ducked out for a

check

> with

> > the

> > > urologist (who didn't have time to see me personally), and

came

> back

> > and told me that

> > > they would not order tests not approved by FDA.

> > >

> > > So much for medical information being 'best obtained' from a

> > healthcare

> > > professional. Sometimes that's the case, but for individuals

who

> weigh

> > the info on

> > > the forums with some thought, and follow up with their own

> readings,

> > the

> > > forums can be a valuable supplement to what patients hear

from,

> or in

> > worst cases,

> > > pry from, their doctors.

> > >

> > > The Best to You and Yours!

> > >

> > > Jon in Nevada

> > >

> > > In a message dated 11/15/2008 1:26:55 AM Pacific Standard Time,

> > > ProstateCancerSuppo rtyahoogroups (DOT) com writes:

> > >

> > > Murray (the author of the piece) also believes that <snip>

> > ...patient-led

> > > sites are fantastic tools for emotional and practical support,

but

> > medical

> > > information is best obtained from a well-known site . or from a

> > healthcare

> > > professional. <snip>

> > >

> > > I'd agree with that but for the fact that so many healthcare

> > professionals

> > > seem not to be up to date with critical areas of the diagnosis

and

> > treatment

> > > of prostate cancer - or if they are up to date, they are not

> > communicating

> > > this to the people who come to this, and other, Forums seeking

> > explanations

> > > of medical information that has not been properly explained to

> them by

> > their

> > > healthcare professional.

> > >

> > >

> > > ************ **You Rock! One month of free movies delivered by

> mail

> > from

> > > blockbuster. com

> > >

> > (http://pr.atwola. com/promoclk/ 100000075x121263

9737x1200784900/

> aol?redir\

> > =https://www. blockbuster. com/signup/ y/reg/p.26978/

> r.email_footer)

> > >

> >

>

[Guest guest]

On December 11, Dr. Chodak replied to Larry:

(snip)

> I think there are way too many biopsies being done on men such as

> yourself, prematurely.

When would be the " mature " time to perform a biopsy? And how would the

medic and patient know?

Regards,

Steve J

[Guest guest]

Steve, in certain circumstances ... I don't think there's any sure

way to know. There are obvious scenarios of course. But mine was a

very non-obvious one ... or perhaps borderline would be the best way

to describe it.

My biggest concern was what if there is some degree of PCa present

that isn't really directly responsible for my minimal increase of

PSA over the past 35 months. A degree of PCa that will remain

dormant for many years. What would I have done if the biopsy had

been positive? I probably would have felt compelled to have a

robotic prostatectomy. As a single 51 y/o, I did not want to be

faced with having to make that decision. I said once before that in

my experience, single women are very unsympathetic to impotent men.

In my situation, given what appears to be a very low risk (2 of 3

uros said they are not concerned/don't recommend biopsy, PCA3 was

4.9 and not even close to the 35 threshold, and PSAV very mild with

PSA not rising consistently over 35 months), I prefer to take my

chances that a biopsy would be negative or that if positive, that

the disease would be dormant. I think given the facts, it is a

reasonable gamble with low risk.

Larry

>

> On December 11, Dr. Chodak replied to Larry:

>

> (snip)

>

> > I think there are way too many biopsies being done on men such as

> > yourself, prematurely.

>

> When would be the " mature " time to perform a biopsy? And how would

the

> medic and patient know?

>

> Regards,

>

> Steve J

>

[Guest guest]

I am trying to avoid too many details of individual cases unless I am involved.  Please understand that  comments can be misinterpreted.  I am not trying to solicit here but I do offer consultations if someone wants more counseling and help managing their situation.  That was not the major thrust for the website, though, as I am no longer seeing patients and not trying to recruit new ones as some websites are trying to do.From: Steve Jordan

To: ProstateCancerSupport Sent: Thursday, December 11, 2008 5:03:02 PMSubject: Re: Re: Should you trust health advice from internet forums

On December 11, Dr. Chodak replied to Larry:

(snip)

> I think there are way too many biopsies being done on men such as

> yourself, prematurely.

When would be the "mature" time to perform a biopsy? And how would the

medic and patient know?

Regards,

Steve J

[Guest guest]

I am trying to avoid too many details of individual cases unless I am involved.  Please understand that  comments can be misinterpreted.  I am not trying to solicit here but I do offer consultations if someone wants more counseling and help managing their situation.  That was not the major thrust for the website, though, as I am no longer seeing patients and not trying to recruit new ones as some websites are trying to do.From: Steve Jordan

To: ProstateCancerSupport Sent: Thursday, December 11, 2008 5:03:02 PMSubject: Re: Re: Should you trust health advice from internet forums

On December 11, Dr. Chodak replied to Larry:

(snip)

> I think there are way too many biopsies being done on men such as

> yourself, prematurely.

When would be the "mature" time to perform a biopsy? And how would the

medic and patient know?

Regards,

Steve J

[Guest guest]

I don’t think Steve J was seeking individual

advice, Dr Chodak. It seemed to me that he was looking for you to expand on

your original statement where you referred to “way too many biopsies

being done….prematurely…” and asking when it would not

be ‘premature’ to conduct a biopsy – and how anyone would

know that this time had arrived.

Seems a reasonable question to me, because

I certainly don’t know the answer. As you say, in your videos, and in

your posts it is always as well to be able to back up statements like this with

some references to appropriate studies, so I’m sure we’d all be interested

if you could point these out to us.

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 Gerald Chodak

Sent: Friday, 12 December 2008

3:21 PM

To: ProstateCancerSupport

Subject: Re:

Re: Should you trust health advice from internet forums

I am trying to avoid too many details of individual cases unless I am

involved. Please understand that comments can be misinterpreted. I am not

trying to solicit here but I do offer consultations if someone wants more

counseling and help managing their situation. That was not the major thrust for

the website, though, as I am no longer seeing patients and not trying to

recruit new ones as some websites are trying to do.

From: Steve

Jordan <mycroftscj1>

To: ProstateCancerSupport

Sent: Thursday, December 11, 2008

5:03:02 PM

Subject: Re:

Re: Should you trust health advice from internet forums

On December 11, Dr. Chodak replied to Larry:

(snip)

> I think there are way too many biopsies being done on men such as

> yourself, prematurely.

When would be the " mature " time to perform a biopsy? And how would

the

medic and patient know?

Regards,

Steve J

[Guest guest]

I don’t think Steve J was seeking individual

advice, Dr Chodak. It seemed to me that he was looking for you to expand on

your original statement where you referred to “way too many biopsies

being done….prematurely…” and asking when it would not

be ‘premature’ to conduct a biopsy – and how anyone would

know that this time had arrived.

Seems a reasonable question to me, because

I certainly don’t know the answer. As you say, in your videos, and in

your posts it is always as well to be able to back up statements like this with

some references to appropriate studies, so I’m sure we’d all be interested

if you could point these out to us.

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 Gerald Chodak

Sent: Friday, 12 December 2008

3:21 PM

To: ProstateCancerSupport

Subject: Re:

Re: Should you trust health advice from internet forums

I am trying to avoid too many details of individual cases unless I am

involved. Please understand that comments can be misinterpreted. I am not

trying to solicit here but I do offer consultations if someone wants more

counseling and help managing their situation. That was not the major thrust for

the website, though, as I am no longer seeing patients and not trying to

recruit new ones as some websites are trying to do.

From: Steve

Jordan <mycroftscj1>

To: ProstateCancerSupport

Sent: Thursday, December 11, 2008

5:03:02 PM

Subject: Re:

Re: Should you trust health advice from internet forums

On December 11, Dr. Chodak replied to Larry:

(snip)

> I think there are way too many biopsies being done on men such as

> yourself, prematurely.

When would be the " mature " time to perform a biopsy? And how would

the

medic and patient know?

Regards,

Steve J

[Guest guest]

Dr. Chodak,

Using the term " PCA3 prostate cancer " in Google scholar returns 825

hits. Browsing some of these shows they are studies about the

diagnostic efficacy of PCA3 as published in peer reviewed journals.

Of course, no study is perfect but why isn't this factual material?

Jan

> >

> > I think it is time to do a video on the status of PCA3 but I

would

> urge caution as there is very little information on how to use the

> test because no good studies have been done yet with adequate

follow-

> up

[Guest guest]

Dr. Chodak,

Using the term " PCA3 prostate cancer " in Google scholar returns 825

hits. Browsing some of these shows they are studies about the

diagnostic efficacy of PCA3 as published in peer reviewed journals.

Of course, no study is perfect but why isn't this factual material?

Jan

> >

> > I think it is time to do a video on the status of PCA3 but I

would

> urge caution as there is very little information on how to use the

> test because no good studies have been done yet with adequate

follow-

> up

[Guest guest]

In general, there has been a changing thought about when to do a biopsy.  We used to use 4 ng/ml as a cutoff,  then some people advocated 2.5 and based on the prevention study, we now recognize that even when the psa is 1, about 8% of men will have a positive biopsy, so no psa level guarantees that cancer is absent.  However, we also know that by age 50, 30% of men have prostate cancer cells in their body which increases gradually to over 50% by age 80.  The vast majority of these are not life threatening.  But as we stick needles into more and more people, there is a significant chance that we will find some of these cancer cells and be unable to predict for sure what will happen.  Consequently, many men will end up with a treatment they could have avoided but they can be cured.

  This is the dilemma of screening.  The reason we still don't know if screening saves lives is because we may be picking up many of these life threatening cancers which of course do well with treatment, but that is not sufficient proof it is valuable to do.   So as people use different indications for a biopsy, this chance of finding non-life threatening cancers increase.To: ProstateCancerSupport Sent: Thursday, December 11, 2008 10:41:36 PMSubject: RE: Re: Should you trust health advice from internet forums

I don’t think Steve J was seeking individual

advice, Dr Chodak. It seemed to me that he was looking for you to expand on

your original statement where you referred to “way too many biopsies

being done….prematurely…”  and asking when it would not

be ‘premature’ to conduct a biopsy – and how anyone would

know that this time had arrived.   Seems a reasonable question to me, because

I certainly don’t know the answer. As you say, in your videos, and in

your posts it is always as well to be able to back up statements like this with

some references to appropriate studies, so I’m sure we’d all be interested

if you could point these out to us.  

  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.prostatecancerw atchfulwaiting. 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: ProstateCancerSuppo rtyahoogroups (DOT) com [mailto: ProstateCancerSuppo rtyahoogroups (DOT) com ] On Behalf Of Gerald Chodak

Sent: Friday, 12 December 2008

3:21 PM

To: ProstateCancerSuppo rtyahoogroups (DOT) com

Subject: Re:

[ProstateCancerSupp ort] Re: Should you trust health advice from internet forums

 

I am trying to avoid too many details of individual cases unless I am

involved. Please understand that comments can be misinterpreted. I am not

trying to solicit here but I do offer consultations if someone wants more

counseling and help managing their situation. That was not the major thrust for

the website, though, as I am no longer seeing patients and not trying to

recruit new ones as some websites are trying to do.

 

From: Steve

Jordan <mycroftscj1@ cox.net>

To: ProstateCancerSuppo rtyahoogroups (DOT) com

Sent: Thursday, December 11, 2008

5:03:02 PM

Subject: Re: [ProstateCancerSupp ort]

Re: Should you trust health advice from internet forums

On December 11, Dr. Chodak replied to Larry:

(snip)

> I think there are way too many biopsies being done on men such as

> yourself, prematurely.

When would be the "mature" time to perform a biopsy? And how would

the

medic and patient know?

Regards,

Steve J

 

[Guest guest]

In general, there has been a changing thought about when to do a biopsy.  We used to use 4 ng/ml as a cutoff,  then some people advocated 2.5 and based on the prevention study, we now recognize that even when the psa is 1, about 8% of men will have a positive biopsy, so no psa level guarantees that cancer is absent.  However, we also know that by age 50, 30% of men have prostate cancer cells in their body which increases gradually to over 50% by age 80.  The vast majority of these are not life threatening.  But as we stick needles into more and more people, there is a significant chance that we will find some of these cancer cells and be unable to predict for sure what will happen.  Consequently, many men will end up with a treatment they could have avoided but they can be cured.

  This is the dilemma of screening.  The reason we still don't know if screening saves lives is because we may be picking up many of these life threatening cancers which of course do well with treatment, but that is not sufficient proof it is valuable to do.   So as people use different indications for a biopsy, this chance of finding non-life threatening cancers increase.To: ProstateCancerSupport Sent: Thursday, December 11, 2008 10:41:36 PMSubject: RE: Re: Should you trust health advice from internet forums

I don’t think Steve J was seeking individual

advice, Dr Chodak. It seemed to me that he was looking for you to expand on

your original statement where you referred to “way too many biopsies

being done….prematurely…”  and asking when it would not

be ‘premature’ to conduct a biopsy – and how anyone would

know that this time had arrived.   Seems a reasonable question to me, because

I certainly don’t know the answer. As you say, in your videos, and in

your posts it is always as well to be able to back up statements like this with

some references to appropriate studies, so I’m sure we’d all be interested

if you could point these out to us.  

  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.prostatecancerw atchfulwaiting. 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: ProstateCancerSuppo rtyahoogroups (DOT) com [mailto: ProstateCancerSuppo rtyahoogroups (DOT) com ] On Behalf Of Gerald Chodak

Sent: Friday, 12 December 2008

3:21 PM

To: ProstateCancerSuppo rtyahoogroups (DOT) com

Subject: Re:

[ProstateCancerSupp ort] Re: Should you trust health advice from internet forums

 

I am trying to avoid too many details of individual cases unless I am

involved. Please understand that comments can be misinterpreted. I am not

trying to solicit here but I do offer consultations if someone wants more

counseling and help managing their situation. That was not the major thrust for

the website, though, as I am no longer seeing patients and not trying to

recruit new ones as some websites are trying to do.

 

From: Steve

Jordan <mycroftscj1@ cox.net>

To: ProstateCancerSuppo rtyahoogroups (DOT) com

Sent: Thursday, December 11, 2008

5:03:02 PM

Subject: Re: [ProstateCancerSupp ort]

Re: Should you trust health advice from internet forums

On December 11, Dr. Chodak replied to Larry:

(snip)

> I think there are way too many biopsies being done on men such as

> yourself, prematurely.

When would be the "mature" time to perform a biopsy? And how would

the

medic and patient know?

Regards,

Steve J

 

[Guest guest]

The studies are not being done yet in a way to find out how much added information they provide.  Taking a group of men with prostate cancer and measuring this and finding cancer is not adequate.  To evaluate tests we have to look at the sensitivity, specificity and positive and negative predictive value.  the sensitivity is how many tests are positive when you have cancer present.  Without doing biopsies on everyone this can't be determined.  the specificity is how many people don't have cancer when the test is negative.  You would again have to biopsy all these people to know that answer.  The positive predictive value of a test is of those with a positive test how many are positive and the negative predictive value is of those with a negative test how many are correctly

negative.  This must be done in a general population without known disease.  And then, you still  don't know about the significance of the cancers being detected.  This evaluation is a long process and it is being explored because people recognize that PSA is really not a good enough screening test.   We are a long way from knowing if this test is significantly better.I hope this helps Gerald Chodak, MDTo: ProstateCancerSupport Sent: Friday, December 12, 2008 3:49:08 AMSubject: Re: Should you trust health advice from internet forums

Dr. Chodak,

Using the term "PCA3 prostate cancer" in Google scholar returns 825

hits. Browsing some of these shows they are studies about the

diagnostic efficacy of PCA3 as published in peer reviewed journals.

Of course, no study is perfect but why isn't this factual material?

Jan

> >

> > I think it is time to do a video on the status of PCA3 but I

would

> urge caution as there is very little information on how to use the

> test because no good studies have been done yet with adequate

follow-

> up

[Guest guest]

The studies are not being done yet in a way to find out how much added information they provide.  Taking a group of men with prostate cancer and measuring this and finding cancer is not adequate.  To evaluate tests we have to look at the sensitivity, specificity and positive and negative predictive value.  the sensitivity is how many tests are positive when you have cancer present.  Without doing biopsies on everyone this can't be determined.  the specificity is how many people don't have cancer when the test is negative.  You would again have to biopsy all these people to know that answer.  The positive predictive value of a test is of those with a positive test how many are positive and the negative predictive value is of those with a negative test how many are correctly

negative.  This must be done in a general population without known disease.  And then, you still  don't know about the significance of the cancers being detected.  This evaluation is a long process and it is being explored because people recognize that PSA is really not a good enough screening test.   We are a long way from knowing if this test is significantly better.I hope this helps Gerald Chodak, MDTo: ProstateCancerSupport Sent: Friday, December 12, 2008 3:49:08 AMSubject: Re: Should you trust health advice from internet forums

Dr. Chodak,

Using the term "PCA3 prostate cancer" in Google scholar returns 825

hits. Browsing some of these shows they are studies about the

diagnostic efficacy of PCA3 as published in peer reviewed journals.

Of course, no study is perfect but why isn't this factual material?

Jan

> >

> > I think it is time to do a video on the status of PCA3 but I

would

> urge caution as there is very little information on how to use the

> test because no good studies have been done yet with adequate

follow-

> up

[Guest guest]

Dr. Chodak,

No, it doesn't help.

There is no way that what you suggest would ever happen. In tumor

marker diagnostic accuracy studies, sensitivity is determined from

people with cancer as determined by a gold standard diagnosis such as

a biopsy. However, investigators could not get an IRB approved to

assess specificity as you suggest. That is, healthy volunteers should

not be subjected to a biopsy as part of an experiment. This was not

done for PSA studies, nor is it done for other tumor markers. Not

having a biopsy for healthy volunteers is a known limitation of these

studies.

One is faced with taking the available data and making a decision

about PCA3, whether as a sole marker or used in combination with PSA.

So waiting for a study that will never happen is not useful.

Jan

> > >

> > > I think it is time to do a video on the status of PCA3 but I

> would

> > urge caution as there is very little information on how to use

the

> > test because no good studies have been done yet with adequate

> follow-

> > up

>

[Guest guest]

Dr. Chodak,

No, it doesn't help.

There is no way that what you suggest would ever happen. In tumor

marker diagnostic accuracy studies, sensitivity is determined from

people with cancer as determined by a gold standard diagnosis such as

a biopsy. However, investigators could not get an IRB approved to

assess specificity as you suggest. That is, healthy volunteers should

not be subjected to a biopsy as part of an experiment. This was not

done for PSA studies, nor is it done for other tumor markers. Not

having a biopsy for healthy volunteers is a known limitation of these

studies.

One is faced with taking the available data and making a decision

about PCA3, whether as a sole marker or used in combination with PSA.

So waiting for a study that will never happen is not useful.

Jan

> > >

> > > I think it is time to do a video on the status of PCA3 but I

> would

> > urge caution as there is very little information on how to use

the

> > test because no good studies have been done yet with adequate

> follow-

> > up

>

[Guest guest]

Dr. Chodak,

Sorry, I wasn't thinking about things quite correctly. For prostate

cancer, a positive biopsy is definitive but as you know, a negative

biopsy is not definitive. So the only way to do the study to produce

the data you would like is to perform a radical prostatectomy on

volunteers, so that one can biopsy the entire prostate. Of course,

since that won't happen, one must do one's best to evaluate the

available data about PCA3.

Jan

> > > >

> > > > I think it is time to do a video on the status of PCA3 but I

> > would

> > > urge caution as there is very little information on how to use

> the

> > > test because no good studies have been done yet with adequate

> > follow-

> > > up

> >

>

[Guest guest]

Dr Chodak, I am sorry to say it, but you

are avoiding directly answering the question. Anyone who has been on Lists,

Forums etc is aware of the controversy regarding screening and I certainly do

not intend to raise that issue again since the two ‘ sides’

will never agree.

The point of my, and Steve J’s,

question is simple:

IF, as you say, there are too many unnecessary

biopsies being done – you use the word ‘ prematurely’ -

for whatever reason, at what stage would you regard a biopsy as necessary or

not ‘ premature’ ? And why do you hold that view? On what

scientific studies is that view based?

As matters stand right now you are

basically saying : this is wrong, but you haven’t said how it could be

made right. If I may use an example that may clarify matters, some years back Dr.

Bradley Hennenfent wrote a book, " Surviving Prostate Cancer Without

Surgery " in which he spoke out very strongly against surgery on the basis

that there were no studies etc etc (all factual, no argument there) BUT he didn’t

make any reasonable suggestion as to what a man should do if he was diagnosed

with PCa and took his advice not to have surgery. Sure enough he praised other

treatment options, including radiation and even PC-Spes, but never mentioned

that all of these treatment options suffered from the same basic problem as

surgery – there are no studies.

Let me put my position very clearly –

I agree with you regarding the unnecessary biopsies and the resultant overtreatment

of this disease. I also have developed my own views on how and when men should

be advised to have PSA tests and/or biopsies, but I am not a trained medical

doctor and I do not give specific advice to anyone – merely offering them

information. I can and will demonstrate how I arrived at my views at any time

and I think it is even more important for you, if you wish to retain

credibility for your videos, to be able to demonstrate why you make the statements

you do, both here and in your videos.

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 Gerald Chodak

Sent: Saturday, 13 December 2008

12:43 AM

To: ProstateCancerSupport

Subject: Re:

Re: Should you trust health advice from internet forums

In general, there has been a changing thought about when to do a

biopsy. We used to use 4 ng/ml as a cutoff, then some people

advocated 2.5 and based on the prevention study, we now recognize that even

when the psa is 1, about 8% of men will have a positive biopsy, so no psa level

guarantees that cancer is absent. However, we also know that by age 50,

30% of men have prostate cancer cells in their body which increases gradually

to over 50% by age 80. The vast majority of these are not life threatening.

But as we stick needles into more and more people, there is a significant

chance that we will find some of these cancer cells and be unable to predict

for sure what will happen. Consequently, many men will end up with a

treatment they could have avoided but they can be cured. This is the

dilemma of screening. The reason we still don't know if screening saves

lives is because we may be picking up many of these life threatening cancers

which of course do well with treatment, but that is not sufficient proof it is

valuable to do. So as people use different indications for a biopsy,

this chance of finding non-life threatening cancers increase.

From: Terry Herbert <ghenesh_49optusnet.au>

To: ProstateCancerSupport

Sent: Thursday, December 11, 2008

10:41:36 PM

Subject: RE:

Re: Should you trust health advice from internet forums

I don’t think Steve J was seeking individual advice, Dr

Chodak. It seemed to me that he was looking for you to expand on your original

statement where you referred to “way too many biopsies being

done….prematurely…” and asking when it would not be

‘premature’ to conduct a biopsy – and how anyone would know

that this time had arrived.

Seems a reasonable question to me, because I certainly don’t

know the answer. As you say, in your videos, and in your posts it is always as

well to be able to back up statements like this with some references to

appropriate studies, so I’m sure we’d all be interested if you

could point these out to us.

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.prostatecancerw atchfulwaiting. 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: ProstateCancerSuppo rtyahoogroups (DOT) com [mailto:

ProstateCancerSuppo rtyahoogroups (DOT) com ] On

Behalf Of Gerald Chodak

Sent: Friday, 12 December 2008

3:21 PM

To: ProstateCancerSuppo

rtyahoogroups (DOT) com

Subject: Re: [ProstateCancerSupp

ort] Re: Should you trust health advice from internet forums

I am trying to

avoid too many details of individual cases unless I am involved. Please

understand that comments can be misinterpreted. I am not trying to solicit here

but I do offer consultations if someone wants more counseling and help managing

their situation. That was not the major thrust for the website, though, as I am

no longer seeing patients and not trying to recruit new ones as some websites

are trying to do.

From: Steve Jordan <mycroftscj1@ cox.net>

To: ProstateCancerSuppo

rtyahoogroups (DOT) com

Sent: Thursday, December 11, 2008

5:03:02 PM

Subject: Re: [ProstateCancerSupp

ort] Re: Should you trust health advice from internet forums

On

December 11, Dr. Chodak replied to Larry:

(snip)

> I think there are way too many biopsies being done on men such as

> yourself, prematurely.

When would be the " mature " time to perform a biopsy? And how would

the

medic and patient know?

Regards,

Steve J