From: otto on
Hello to all,

I am 51 yrs old and had RRP in January 2005. I found this
group after my surgery while recovering and have just been lurking
until now. I was diagnosed with PC Nov. 2004, PSA 8.2, Gleason 4+3=7,
stage T2c. Post-op pathology showed neg margins, clear lymph nodes and
vessals. Tumor was within 0 .1mm of inked margins. Incontinance is
still a problem, although it is still improving very slowly. ED is
just now becoming a non issue with ED pills. It's been a long tough
year. Post-op psa tests have been at 3 month intervals and have all
come back undetectable until yesterday. That test showed that my psa
is now 0.25, which to me seems like quite a jump in just 3 months. The
uro sent my blood sample to another lab in hope that maybe his machine
didn't work properly. I can call him tomorrow for the other lab's
results. He said he will retest me in 2 months and if it's still
reading, he will refer me to a radiation oncologist. My question is,
if there is a psa reading now, why wait another 2 months? Wouldn't I
be better off getting treatment sooner than later? I know that there
are people in the group that have been down this road and I would
appreciate any advice or experiences they could offer.

Thanks,
Otto

Does anyone know of a good radiation oncoligist in the Syracuse, NY
area?

From: c palmer on
From: otto(a)bearswamp.net (otto)

                I am 51 yrs old and had
RRP in January 2005. I found this group after my surgery while
recovering and have just been lurking until now. I was diagnosed with PC
Nov. 2004, PSA 8.2, Gleason 4+3=7, stage T2c. Post-op pathology showed
neg margins, clear lymph nodes and vessals. Tumor was within 0 .1mm of
inked margins. Incontinance is still a problem, although it is still
improving very slowly. ED is just now becoming a non issue with ED
pills. It's been a long tough year. Post-op psa tests have been at 3
month intervals and have all come back undetectable until yesterday.
That test showed that my psa is now 0.25, which to me seems like quite a
jump in just 3 months. The uro sent my blood sample to another lab in
hope that maybe his machine didn't work properly. I can call him
tomorrow for the other lab's results. He said he will retest me in 2
months and if it's still reading, he will refer me to a radiation
oncologist. My question is, if there is a psa reading now, why wait
another 2 months? Wouldn't I be better off getting treatment sooner than
later? I know that there are people in the group that have been down
this road and I would appreciate any advice or experiences they could
offer.
                Thanks,
                Otto
Does anyone know of a good radiation oncoligist in the Syracuse, NY
area?

=========
hi otto - been there, done that. there seems to be two schools of
thought.

one - is the wait and see if the psa still continues to rise, then act
on it. two, is a more active SR treatment and not wait.

my surgeon leaned toward early intervention when my psa became
"detectable"

i was schedule for a 90 day psa test and those 90 days does make you
wonder and doubt. but the test came back "undetectable" again.

when i ask about it, i was told that tests can "misfire" and this was at
a VA hospital. that sure makes you wonder. the psa test was not sent
to some testing place, but is done at the hospital lab.

you have to wait for time to past to find out just what is going on
inside your body.

it is hard for the surgeon to get ALL the prostate tissue. they do not
want to admit to this. most of the time, this is not a problem, and
that is why the psa test is so important - to detect any prostate cells
producing psa.

but the tissue left behind could be regular prostate cells, BPH cells,
or pca cells. this is why the time period on waiting.

so, what you have right now is the waiting period before making a
decision.

ok, making the decision - what you have to understand that if you decide
to have radiation therapy, then you have used the second chance for a
cure. you can't keep getting more radiation if the psa were to rise
again later in life. these are one shot treatments because radiation
damage adds up and the damage to other organs and tissue can cause
quality of life issues.

and the incontinence issue - it took 11 months to get to 99% dry.
coming up on 3 years, it hasn't changed any, but i can live is the
dampness.

final comments - your stats look good going in before treatment and the
end results of the path report is normal to be assigned T2c. you stand
a real good chance that the psa rest will come back undetectable as i
see it, but of course, the waiting sucks.

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional
"Many more men die with prostate cancer than of it. Growing old is
invariably fatal. Prostate cancer is only sometimes so."
http://community.webtv.net/PALMER_ENT/doc

From: GregL on
G'day Otto

I had a similar experience.

My PSA was around 8.0 and biopsy was positive (4 of 6 positive). Had RP
surgery in 1995 aged 43.

After three months my PSA was <0.1, three months later it was 0.3. My doctor
immediately advised radium based on this result. He wasn't interested in a
retest so I got it done myself with another lab and the result was <0.1.
After telling the doctor the results of this retest he still advised radium
so I had 6 weeks of radium.

Not sure who was right but last PSA done in June last year was <0.01.

Cheers and good luck
greg


"otto" <otto(a)bearswamp.net> wrote in message
news:jgsft115pob307d0634r8ml42gldccfs7f(a)4ax.com...
> Hello to all,
>
> I am 51 yrs old and had RRP in January 2005. I found this
> group after my surgery while recovering and have just been lurking
> until now. I was diagnosed with PC Nov. 2004, PSA 8.2, Gleason 4+3=7,
> stage T2c. Post-op pathology showed neg margins, clear lymph nodes and
> vessals. Tumor was within 0 .1mm of inked margins. Incontinance is
> still a problem, although it is still improving very slowly. ED is
> just now becoming a non issue with ED pills. It's been a long tough
> year. Post-op psa tests have been at 3 month intervals and have all
> come back undetectable until yesterday. That test showed that my psa
> is now 0.25, which to me seems like quite a jump in just 3 months. The
> uro sent my blood sample to another lab in hope that maybe his machine
> didn't work properly. I can call him tomorrow for the other lab's
> results. He said he will retest me in 2 months and if it's still
> reading, he will refer me to a radiation oncologist. My question is,
> if there is a psa reading now, why wait another 2 months? Wouldn't I
> be better off getting treatment sooner than later? I know that there
> are people in the group that have been down this road and I would
> appreciate any advice or experiences they could offer.
>
> Thanks,
> Otto
>
> Does anyone know of a good radiation oncoligist in the Syracuse, NY
> area?
>


From: Steve Jordan on
On January 25, otto wrote, in pertinent part:

(snip)
> Post-op psa tests have been at 3 month intervals and have all
> come back undetectable until yesterday. That test showed that my psa
> is now 0.25, which to me seems like quite a jump in just 3 months. The
> uro sent my blood sample to another lab in hope that maybe his machine
> didn't work properly. I can call him tomorrow for the other lab's
> results.
I would counsel Otto to wait overnight for the new result. Caveat: one
serious problem with changing labs used for PSA tests is that there is
little or no consistency from one lab to another. In other words,
tomorrow's result may or may not be meaningful when compared with the
previous result. The uro should know that, but apparently does not. And
who knows whether the uro's "machine" is properly maintained and calibrated?

My experience, which may or may not be relevant to Otto's, is this:
after eight months of <0.01 PSAs I tested 4.85. Scared the hell out of
me. My onc recommended starting chemo. I had the test redone within a
week. Result: 0.01. The lab had made a mistake. It happens.
> He said he will retest me in 2 months and if it's still
> reading, he will refer me to a radiation oncologist. My question is,
> if there is a psa reading now, why wait another 2 months? Wouldn't I
> be better off getting treatment sooner than later?
I believe that what is needed at this point is the ultra-sensitive PSA
test, such as the DPC Third Generation ICMA method. Refer to the website
of the Prostate Cancer Research Institute at:
http://prostate-cancer.org/index.html

And also what is needed is a reference that covers a reasonable period
of time. A snapshot -- one test -- means little. I recommend
ultrasensitive tests on a *monthly *schedule. Any trend will quickly
become evident. And the ultrasensitive tests give the patient early
warning of trends.

If the RP has failed to cure, I have to say that this happens fairly
frequently. The problem seems to lie in the fact that it is virtually
impossible to be sure whether the PCa has expanded to anatomical
structures other than the prostate. When the uro moos "we got it all!"
watch out; in truth, he doesn't really know.

The lower the test results, the more likely is this to be the case. But
the uncertainty increases with each increase in the results of the
staging tests. And, of course, a full course of staging tests is quite
rare, which is IMO a scandal.

(snip)
> Does anyone know of a good radiation oncoligist in the Syracuse, NY
> area?
>
Check this page of the PCRI website. It is not comprehensive, but is a
good start:
http://prostate-cancer.org/resource/special.html#radiation_oncology

Regards,

Steve J

"Flagrantly, we docs ignore the declaration of biology. We do this out
of ignorance, greed or both. The prime directive of the physician, the
real physician, is patient outcome, & not physician income (or ego).
-- Stephen B. Strum, MD
From: Steve Kramer on

"otto" <otto(a)bearswamp.net> wrote in message
news:jgsft115pob307d0634r8ml42gldccfs7f(a)4ax.com...
> Hello to all,

> Post-op psa tests have been at 3 month intervals and have all
> come back undetectable until yesterday. That test showed that my psa
> is now 0.25, which to me seems like quite a jump in just 3 months.

> He said he will retest me in 2 months and if it's still
> reading, he will refer me to a radiation oncologist. My question is,
> if there is a psa reading now, why wait another 2 months? Wouldn't I
> be better off getting treatment sooner than later? I know that there
> are people in the group that have been down this road and I would
> appreciate any advice or experiences they could offer.

I've been down the road that you think you're on. Three quarterly tests,
then a 0.27. Pissed me off. But, it was the next one, the 0.37 that
cinched it.

You need three consecutive tests to show a real cancer trend. Be patient.
If radiation is to be, you have plenty of time.

--
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
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32
Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05
PSA .07 .05 .06 .05 .08
Non Illegitimi Carborundum