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Medical Forum / Diseases and Disorders / Prostate Cancer / February 2004

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Withheld PSA Test Results

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Ralph - 07 Feb 2004 04:39 GMT
Most hospitals in my area are now withholding PSA test results that
are below 0.1 unless a person goes to the administration and demands
the exact lab result. If the test result is less than 0.1 the lab will
only tell you it was <0.1. Withholding this information seems like a
very bad idea. If you can give me good reasons for full disclosure,
please let me know and I will try to have this practice overturned.
George Conklin - 07 Feb 2004 13:40 GMT
> Most hospitals in my area are now withholding PSA test results that
> are below 0.1 unless a person goes to the administration and demands
> the exact lab result. If the test result is less than 0.1 the lab will
> only tell you it was <0.1. Withholding this information seems like a
> very bad idea. If you can give me good reasons for full disclosure,
> please let me know and I will try to have this practice overturned.

  Such results are statistically meaningless.
Leonard Evens - 07 Feb 2004 16:10 GMT
> Most hospitals in my area are now withholding PSA test results that
> are below 0.1 unless a person goes to the administration and demands
> the exact lab result. If the test result is less than 0.1 the lab will
> only tell you it was <0.1. Withholding this information seems like a
> very bad idea. If you can give me good reasons for full disclosure,
> please let me know and I will try to have this practice overturned.

I assume you are talking about PSA tests after a radical prostatectomy
since values below 0.1 must be exceedingly rare for men with intact
prostates.

There could be two reasons for what they are doing.   First, they may
not be using the highly sensitive tests that can measure values less
than 0.1 ng/ml.  Many urologists consider the use of ultrasensitive not
clinically useful.   Second, even if they are using the ultrasensitive
tests, they may believe that patients will be unduly alarmed about
results which they feel don't mean anything.   Usually, no action will
be taken until the PSA reaches .1 or even .2.  On the other hand,
proponents of ultrasensitive tests do think tracking the results at
lower levels can be helpful.

It may be a reasonable compromise to tell you just what the values are
if you insist, but not otherwise.   The only question in my mind is just
how difficult they make it for you to find out.   If they make it
extremely difficult, that would be something to object about.   If it is
just that they don't routinely report lower values, that may be quite
reasonable.
Wakeley Purple - 07 Feb 2004 21:59 GMT
> Most hospitals in my area are now withholding PSA test results that
> are below 0.1 unless a person goes to the administration and demands
> the exact lab result. If the test result is less than 0.1 the lab will
> only tell you it was <0.1. Withholding this information seems like a
> very bad idea. If you can give me good reasons for full disclosure,
> please let me know and I will try to have this practice overturned.

Let's say you're measuring this with a ruler that you hold with your hand.
Your hand shakes a little - nothing you can do about it. One time you
measure it comes up .08, the next time it's .1, later it might be .07, etc.

The measurements are affected by the shaking of your hand, they're all
close, but probably none of them is the exact PSA level. The instruments
and procedures labs use for PSA measurement have similar small variations.
The important thing is that none of the readings is anything to be worried
about. The hospitals don't report numbers that are "shakey", and
communicate the important information that the numbers are below the point
of concern.

Signature

Wake

PSA 3.8, 11/2003 @58yrs
Biopsy positive 5% in 1 of 10 cores
T1c Gleason 3+3
RRP 1/12/04
Pathology agreed with biopsy + Negative margins
Erection 1/30/04

ron - 09 Feb 2004 15:51 GMT
Hi Ralph...I assume you are talking about the ultrasensitive PSA test,
there would be no "additional" information to report if it were the
standard test with a lower detection limit around 0.1 ng/ml.
Withholding the results of the ultrasensitive test seems unreasonable.
It seems that the hospitals are assuming that the patient has
requested a product / service and he , the patient, is incabable of
understanding the results.

For the post-PCa-treatment patient, the ultrasensitive test is a
validated procedure that can afford the patient a "heads up" on
disease progression.  Thereby providing the patient with 1) additional
time to plan, 2) a better estimate of doubling time (because
meaningful data has been collected over a longer time interval) and 3)
an oppotunity to react sooner in terms of salvage therapy.
Furthermore, for the patient following the IHT route, ultrasensitive
information is important in terms of defining the nadir and seeing
when the PSA begins to increase during the off-cycle.

The ultra-sensitive PSA is not for everyone, but for those who select
it, the information should be made available.  I would encourage you
to "educate" the hospital personnel who have made this decision and
work for a change in policy...Best wishes and good health, Ron

> Most hospitals in my area are now withholding PSA test results that
> are below 0.1 unless a person goes to the administration and demands
> the exact lab result. If the test result is less than 0.1 the lab will
> only tell you it was <0.1. Withholding this information seems like a
> very bad idea. If you can give me good reasons for full disclosure,
> please let me know and I will try to have this practice overturned.
Leonard Evens - 09 Feb 2004 16:47 GMT
> Hi Ralph...I assume you are talking about the ultrasensitive PSA test,
> there would be no "additional" information to report if it were the
[quoted text clipped - 13 lines]
> information is important in terms of defining the nadir and seeing
> when the PSA begins to increase during the off-cycle.

What is IHT?  If that is some kind of hormone therapy, it seems to me
that such patients should be in regular communication with their
oncologists about the meaning of any PSA testing and they shouldn't be
interpreting the results themselves.

For radiation therapy, ultrasensitive tests are not very useful since
the nadir is seldom below 0.1 ng/mm.

For RP patients, whether or not ultrasensitive tests provide any useful
information is a matter of dispute among experts.   I agree that the
results of such tests should be made available, without too much
difficulty, to patients who demand it.   On the other hand, many men
will experience unwarranted "PSA anxiety" if routinely presented with
such information, so it makes sense not to divulge it unless requested.

My doctor reports the results to me as "undetectable", and although I am
probably more sophisticated than most in matters of measurement science,
 I leave it at that and don't question him further about what it means.
 I figure that I am paying him to worry about what is significant and
what isn't, and I trust his judgement.  If I didn't trust him, I would
get another doctor.

> The ultra-sensitive PSA is not for everyone, but for those who select
> it, the information should be made available.  I would encourage you
[quoted text clipped - 7 lines]
>>very bad idea. If you can give me good reasons for full disclosure,
>>please let me know and I will try to have this practice overturned.
ron - 09 Feb 2004 22:51 GMT
> > Hi Ralph...I assume you are talking about the ultrasensitive PSA test,
> > there would be no "additional" information to report if it were the
[quoted text clipped - 15 lines]
>
> What is IHT?  

Intermittent hormone therapy, where you stay off the hormones until
the PSA starts to rise again.  Comparing the nadirs during subsequent
off periods is also informational.

> If that is some kind of hormone therapy, it seems to me
> that such patients should be in regular communication with their
> oncologists about the meaning of any PSA testing and they shouldn't be
> interpreting the results themselves.

I'd say it depends on the individual and the oncologist.  From reading
the posts of advanced men, I've drawn the conclusion that many
advanced men (or at least many that participate in various PCa
discussion groups, know quite a bit more than their oncologist,
unfortunate but true.  The oncologists often support the plans /
recommendations that the men have researched out, after reviewing
them.  I suspect some men with early stage disease know more than
their radiologist, urologist, etc.  I fully support such men
evaluating their PSA results and then comparing notes / thoughts with
their doc.

> For radiation therapy, ultrasensitive tests are not very useful since
> the nadir is seldom below 0.1 ng/mm.

Yes, ultra-sensitive testing wouldn't make sense here.

> For RP patients, whether or not ultrasensitive tests provide any useful
> information is a matter of dispute among experts.

I suspect current thinking amongst most experts has shifted to seeing
value in the ultra-sensitive test as the test error / reproducibility
has been validated. Dr. Strum for one, comments on its value
regularly.  I wonder what Dr. Walsh would say in a conversation today.
I've listed 3 advantages to the test, what negatives offset them?
PSA anxiety is a different issue, as we both noted, some men do not
want this information.  That's fine, but it doesn't lessen the
informational value of the test.

> I agree that the
> results of such tests should be made available, without too much
> difficulty, to patients who demand it.   On the other hand, many men
> will experience unwarranted "PSA anxiety" if routinely presented with
> such information, so it makes sense not to divulge it unless requested.

Leonard, I disagree again.  I believe the test lab should release all
information to all qualified requesting parties.  If someone has PSA
anxiety, then others should do like you do and have their doc serve as
a filter, rather than the lab having to keep track of the preferences
of thousands of patients.

> My doctor reports the results to me as "undetectable", and although I am
> probably more sophisticated than most in matters of measurement science,
>   I leave it at that and don't question him further about what it means.
>   I figure that I am paying him to worry about what is significant and
> what isn't, and I trust his judgement.  If I didn't trust him, I would
> get another doctor.

I trust my doc too, but my mom always told me that two heads are
better than one.

> > The ultra-sensitive PSA is not for everyone, but for those who select
> > it, the information should be made available.  I would encourage you
> > to "educate" the hospital personnel who have made this decision and
> > work for a change in policy...Best wishes and good health, Ron
Ralph - 10 Feb 2004 02:00 GMT
> Hi Ralph...I assume you are talking about the ultrasensitive PSA test,
> there would be no "additional" information to report if it were the
[quoted text clipped - 25 lines]
> > very bad idea. If you can give me good reasons for full disclosure,
> > please let me know and I will try to have this practice overturned.

Thank you all for your thoughts. My prostate was removed 1.21.03 and
my PSA was 0.01 last July. My PSA test in January was <0.01. My doctor
was happy the latest test result was not just under the 0.1 figure
like .08 or .09.
 
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