Possible Recurrence - Problems with PSA assay's?

I was diagnosed and had an RP in 2002. Since then, my PSA tests (now
annual) have been undectectable (<.05). 12 days ago, my test came
back at 0.13. My oncologist said that the lab had "changed the way
they assay" or something like that and 10-20% of his patients (at a
major cancer center) were getting "strange" readings - many like me
(undetectable and now showing something). One guy who previously was
showing a detectable level, came back with undetectable. I don't
think they have had enough time to see what these shake out at but the
doctor is "not happy" with this. I had my test redone 2 days ago and
it came back at 0.15 which is probably just an interpretative
variation. I'm scheduled to have another test done in 1 month.

Even though these levels are low, I am concerned. My pre-RP PSA was
1.26 (a false negative) so I have been operating under the unproven
assumption that my PCa just didn't effect PSA. I always believed that
recurrence may not even show in any PSA reading. Imagine my surprise.

Has anyone heard of this change in the way the test is done with these
kind of wacky results? A nurse I talked to at the hospital said it
didn't seem to matter what lab they used, they were getting the same
kind of results. I'm getting one done on my own today at another
lab. The whole thing seems weird to me. I would think that any
change by the labs would lead to greater accuracy, not sporadic
errors.

Thanks guys.
Doug

On September 26, Doug wrote:

(snip info re change in PSA result from <0.05 to 0.13)

> Has anyone heard of this change in the way the test is done with
> these kind of wacky results?

Yes.

Quest changed their PSA test protocol as of January 1, 2007. They
offered a "re-baseline" test of the last specimen at no additional cost
until March 3. I understand that other labs did the same.

The change in assay protocol for the ultra-sensitive test was from DPC
3rd Generation Immunolite to Roche Electrosys.

They claimed that they had informed all medics on their customer rolls
(but of course not the mere patients) several months in advance. I was
never notified by my medic, nor were two others I could name.

I learned of the change only because I have always required that a copy
of every test report be sent to me, and a note of the change was
included in a report.

Once again, it highlights the fact that we must be our own advocates,
not leaving anything to the chance of a medic or a medic's clerk missing
something important.

If Doug was having only annual tests, he was even more at risk of
exactly what happened: he was not informed.

In my case, upon which no one should judge their own situation, the
difference was a small increase, not enough to be significant.

Lastly, different test protocols are NOT interchangeable. Here is a copy
of my post of March 7 on the point:

> The PSA test results from different assays are NOT interchangeable.
>
> See:
>
> Stephan S et al.," Interchangeability of measurements of total and
> free prostate-specific antigen in serum with 5 frequently used assay
> combinations: an update."
>
> PubMed ID 16391327
>
> Their conclusion:
>
> "Interchangeability of tPSA, fPSA, and %fPSA values obtained by
> commercial PSA assays remains inadequate, but attention to this issue
> may minimize the misinterpretation of PSA results obtained by
> different assays."
>
> and especially
>
> Kort SA et al., "Comparison of 6 automated assays for total and free
> prostate-specific antigen with special reference to their reactivity
> toward the WHO 96/670 reference preparation."
>
> Their conclusion:
>
> "Differences among PSA assays appear to have decreased since
> introduction of the WHO 96/670 reference preparation, but further
> efforts are needed to harmonize fPSA assays."
>
> Once again: We must be our own advocates, supervising the progress of
> our cases. We must not rely upon medics who might spend as much as
> 15 minutes with us on each visit.

Regards,

Steve J

"Digressions, objections, delight in mockery, carefree mistrust are
signs of health; everything unconditional belongs in pathology."
--Friedrich Nietzsche

On Sep 26, 11:06 am, doug.gosl...@gmail.com wrote...snip...
> My pre-RP PSA was
> 1.26 (a false negative) so I have been operating under the unproven
> assumption that my PCa just didn't effect PSA. I always believed that
> recurrence may not even show in any PSA reading.

Hi Doug...Some PCa tumors simply do not express much PSA. For
example, PSA is inversely associated with Gleason Grade. Men with GG
4-5 tumors often have low PSAs upon diagnosis. Also, there are some
PCa variants (in particular, small cell carcinoma) that express low
PSA. A pathologist who specializes in PCa would have likely noted the
high GG or PCa variant upon examination of your biopsy slides and / or
RP specimen...Best wishes and good health, ron

My Gleason was 3+3. I had another PSA test done today at another
lab. Will get that back in a couple of days.
Doug

On September 26, ron replied to Doug, in pertinent part:

>....Some PCa tumors simply do not express much PSA. For
> example, PSA is inversely associated with Gleason Grade.

I recommend that ron reconsider that statement. Seems to me to be a bit too
unequivocal.

> Men with GG
> 4-5 tumors often have low PSAs upon diagnosis. Also, there are some
> PCa variants (in particular, small cell carcinoma)

Also known as neuroendocrine PCa.

> .... that express low
> PSA. A pathologist who specializes in PCa would have likely noted the
> high GG or PCa variant upon examination of your biopsy slides and / or
> RP specimen

What a competent pathologist would see is poorly-differentiated PCa cells.

Explore the authoritative website of the Prostate Cancer Research
Institute (PCRI)
at http://prostate-cancer.org/index.html and search on neuroendocrine PCa.

Regards,

Steve J

> > 4-5 tumors often have low PSAs upon diagnosis. Also, there are some
> > PCa variants (in particular, small cell carcinoma)
>
> Also known as neuroendocrine PCa.
>
> > .... that express low
> > PSA. A pathologist who specializes in PCa would have likely noted the
> > high GG or PCa variant upon examination of your biopsy slides and / or
> > RP specimen
>
> What a competent pathologist would see is poorly-differentiated PCa cells.
>
I recall from Walsh's book that you would be dead in 6-12 months if
you had small cell carcinoma. I had worried about that when I was
first diagnosed but realized that the pathologist would have ID'd it.

Doug

<doug.gosling@gmail.com> wrote in message
news:1190826393.591382.286920@50g2000hsm.googlegro ups.com...

> Has anyone heard of this change in the way the test is done with these
> kind of wacky results? A nurse I talked to at the hospital said it
> didn't seem to matter what lab they used, they were getting the same
> kind of results. I'm getting one done on my own today at another
> lab. The whole thing seems weird to me. I would think that any
> change by the labs would lead to greater accuracy, not sporadic
> errors.

I'm sorry, Doug, but if regardless of assay, if cancer cannot be found,
i.e., < 0.05, and is then found, then it's probably there. However, you
will know more in December and probably won't know for sure until March;
assuming you're getting quarterly tests.

The good news is, it's been five years! That is really good for long-term
prognosis.





--
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32 PSAD .056 years
Lupron 07/03 (1 mo) 8/03 and every 4 months there after
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years
Casodex added daily 07/06
PSA <0.04, <0.05, <0.04 (06/12/2007)
Non Illegitimi Carborundum

On Sep 26, 6:35 pm, Steve Jordan <mycrofts...@cox.net> wrote:
> On September 26, ron replied to Doug, in pertinent part:
>
> >....Some PCa tumors simply do not express much PSA. For
> > example, PSA is inversely associated with Gleason Grade.
>
> I recommend that ron reconsider that statement. Seems to me to be a bit too
> unequivocal.

Steve...It's just a verbal restatement of Dr. Strums PSA leak table


> > Men with GG
> > 4-5 tumors often have low PSAs upon diagnosis. Also, there are some
> > PCa variants (in particular, small cell carcinoma)
>
> Also known as neuroendocrine PCa.

NE PCa is a general class, but signet cell, small cell, etc. each show
different upon mophological examination and staining...ron


> > .... that express low
> > PSA. A pathologist who specializes in PCa would have likely noted the
> > high GG or PCa variant upon examination of your biopsy slides and / or
> > RP specimen
>
> What a competent pathologist would see is poorly-differentiated PCa cells.

see above

Update

I had a PSA test done by another lab. Result was 1.4.

My doctor says he is still puzzled by the lab results. He had several
men who were previously holding around 3 who are now showing 8/9 but
with nothing showing on biopsy. He is suggesting that I come back in
3 months and if there is any increase, he will radiate. He also
suggested that maybe this new test is establishing a higher threshold
for "non-detectable". I'm fine with the monitoring but I can't accept
the new threshold argument,

What do you guys think?

Doug
Dx and RP 2002
Gleason 6 (3+3)
Pre RP PSA 1.26

Correction - Result was 0.14 (right in the middle of the previous
results) not 1.4.
Decimals mean a lot!
Doug


On Sep 27, 6:03 pm, doug.gosl...@gmail.com wrote:
> Update
>
> I had a PSA test done by another lab. Result was 1.4.
>
>

<doug.gosling@gmail.com> wrote in message
news:1190938387.070841.218980@19g2000hsx.googlegro ups.com...
> Correction - Result was 0.14 (right in the middle of the previous
> results) not 1.4.
> Decimals mean a lot!
> Doug
>
>
> On Sep 27, 6:03 pm, doug.gosl...@gmail.com wrote:
>> Update
>>
>> I had a PSA test done by another lab. Result was 1.4.

My response remains unchanged. Sorry. I think the bastard has reared its
ugly head again and you will have to go onto SRT. But, you won't know for a
few months.

Doug,

The question I have is do we assume that if the cancer did raise its ugly
head again, did it raise it at the original site after five years. Micro
mets can pop up anywhere in the body. My brother has a similar issue in
that he had a RRP eight years ago and just now has a rising psa. His
gleason was (3+5)=8 and psa 6.3. He also had capsule penetration. His psa
now has almost doubled from 1.3 to 2.46 in three months. Doc recommends
ADT not radiation. The number is to low to be detected or located and
radiation would probably be ineffective, unnecessary and probably causing
more bad side effects than warranted. From what I read, bone scans are not
effective with a psa below 30ng/nl. Some Docs want to start early ADT but
that is controversial as it is only useful for a couple years and then it
looses its effectiveness and then when one reaches metastasis ADT wont be
available to use. The only exception to early ADT is for someone with
numbers like my brothers. There just isn't a lot of material out there for
someone that has been undetectable for a relative long period of time
before recurrence.

Ron S.

<doug.gosling@gmail.com> wrote in message
news:1190938387.070841.218980@19g2000hsx.googlegro ups.com...
> Correction - Result was 0.14 (right in the middle of the previous
> results) not 1.4.
> Decimals mean a lot!
> Doug

Doug,

I'm not a doctor and not qualified to have an opinion about
all this. But here are some layman's thoughts.

1. Radiation should only be used if there is a real recurrence.
There's no reason to endure the possible side effects
if there is no recurrence.

2. Radiation should be used as early as possible when it
it is clear that there is a real recurrence. The best hope
for catching the cancer before it metastasizes is early
on.

So on the one hand, you don't want to get radiation until
you're sure and on the other, you don't want to wait if you
are sure. It's a dilemma, and its frought with emotional
issues while you wait for it to be resolved.

Complicating the issue is the possibility that a rising
PSA does not necessarily mean that you have a
dangerous cancer. It is conceivable that, if you are
not too young, watchful waiting would work out for
you.

I'm thinking that what your doctor proposed was pretty
reasonable. In three months, you'll have more information,
but will be unlikely to have gone beyond the threshold
when radiation ceases to look attactive. Before then,
you might still not have enough information. After then,
you may have waited longer than you need to to be
sure.

I wouldn't think it would be amiss to get additional PSA
tests between now and 3 months from now. I don't
think you will learn much that you wouldn't learn in 3
months, but it will provide support for what you see
in 3 months. If the tests between now and then are
out of whack with what you are seeing now and will see
in 3 months, then you'll know that you're not getting
reliable information. If the tests are in line with them,
then you'll have more reason to believe there is no
problem with the testing procedures.

Alan

>
> I wouldn't think it would be amiss to get additional PSA
> tests between now and 3 months from now. I don't
> think you will learn much that you wouldn't learn in 3
> months, but it will provide support for what you see
> in 3 months. If the tests between now and then are
> out of whack with what you are seeing now and will see
> in 3 months, then you'll know that you're not getting
> reliable information. If the tests are in line with them,
> then you'll have more reason to believe there is no
> problem with the testing procedures.
>
> Alan

Thanks Alan. I am planning to have a PSA done every month at the same
lab I got my 3rd reading done, since it was in line with the others.
Like you say...... it's more for support than anything. But if I see
a jump in 1 or 2 months, I'll be be pounding on my oncologist's door.

BTW, what are the side effects of SRT beyond what I've experienced
already from surgery and the loss of one nerve?

Thanks, Doug

<doug.gosling@gmail.com> wrote in message
news:1191029727.620942.292660@22g2000hsm.googlegro ups.com...
> ...
> BTW, what are the side effects of SRT beyond what I've experienced
> already from surgery and the loss of one nerve?

I can't say for sure since I don't know if my radiation experience
is like everyone else's.

I had five weeks of three dimensional conformal beam (3DCRT)
radiation supplementing two HDR brachytherapy sessions.

After a couple of weeks I started to experience the following
side effects:

Irritation of the rectum. I had some pre-existing hemorrhoids
which got worse during radiation. I used lots of Preparation H
and the problem cleared up within a couple of weeks after the
end of radiation - though I do have scarring in the rectal walls
that was visible on a proctoscope.

Minor skin burns. These were not as bad as a bad sunburn.
I treated them with skin creams. That problem cleared up
within a few days after the end of radiation.

Loss of some pubic hair. It all grew back afterwards.

Blood in semen. If you've had an RP you may not have any
semen and won't see this. This cleared up within a couple
of weeks after the end.

Difficulty urinating. This was the longest lasting side effect.
However it was brought on by the second brachytherapy. I
don't know if the external beam contributed to it or not. It took
about 5 months before I could get off Flomax. At its worst,
the problem had me getting up every hour during the night to
urinate a little before the swelling shut it down and made it
impossible to fully empty my bladder. Then the pressure
would build until I could do a little more, and so on.

It was an inconvenience, but I didn't get upset about it.

The radiation itself is totally painless and easy to do. I never
missed any work except for an hour each morning while I had
the treatments.

I was not personally rendered impotent by the radiation, but
I was warned by my doctor that I might be and that many
men are. I may have suffered some losses, or it may just be
that I keep getting older (darn it!)

Best of luck.

Alan