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 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]

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]

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]

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]

 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]

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]

Quoting Dr. Chodak's reply to Larry:

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

>> yourself, prematurely.

I responded:

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

> the medic and patient know?

On the same date, Dr. Chodak replied to me in full as follows:

> 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.

With all due respect, I regret that I must observe that that is evasive;

not responsive to my question.

Regards,

Steve J

" Judge, and be prepared to be judged. "

-- Ayn Rand