Post RP Disapointing PSA

[Chas]

My history:

PSA of 1.7 under proscar. I took as equivalent to 3.4
12 core biopsy performed in Oct 2007 based on my breast cancer, BRCA2
genetic mutation and older brothers prostate cancer.
A side note: My brother had a Gleason 8 and a PSA of
Biopsy showed one core with a Gleason 6.
RP (da Vinci) performed in June.
Path report was good, showing the tumor fully encapsulated, negative nodes
and vesicles. Tumor was reported to be at 2 to 10% of gland and given a
Gleason score 9. The Gleason was a surprise but overall we were pleased.

Post op recovery was uneventful. Incontinence only a minor problem and
improving week by week. 1 small pad a day just in case and none at night.
Impotence remains, but I had not expected rapid progress there. Time will
tell.

Then today I received first post-op PSA of 0.1
Unhappily I have the zero and decimal properly placed.

My surgeon and I are disappointed and I am of course concerned.

Next step is not yet clear, although I believe conventional wisdom would say
SRT. I have already vetted a pair of rad onc fellows during my selection of
treatment journey, but is that really the next step? I have made an
appointment with a medical onc early Oct to get her take on it.

Questions to the group...

Can I reasonably expect to see any reduction in my next test? I think not,
but I'm thinking a second test would be appropriate before I launch into any
treatment program, be it SRT or some pharmaceutical mix. The interval for
the next test is unclear. It would seem to me doubling time comes into play
here. BTW all my PSA tests have been thru the same lab.

While I have detectable PSA, am I correct in that there is no good way to
determine if this is due to tissue on the prostatic bed or if systemic
(metastatic) disease? Obviously future treatments would be leveraged by the
answer. My preop bone scan was clear.

When and if the time comes, is there a usual or normal progression of drugs
used?

When researching the med onc (Prostate specialty) my surgeon referred me
to, I find she is involved in a prostate cancer trial.

to wit:
"A Phase 1, Open-Label, Dose-Escalation Trial to Evaluate the Safety,
Pharmacokinetics,
and Pharmacodynamics of MGCD0103 (MG-0103) in Combination With
Docetaxel (Taxotere®)
in Subjects With Advanced Solid Malignancies"

I am curious as to the study, but do not see myself anywhere near the point
of enlisting as a lab rat or even if Docetaxel is reasonable step at this
time.

I have spent little of my time to this point on treatment regimens for post
surgery PSA issues. If anyone has a reading list, I'd be happy to receive
it. I have read Walsh, Scardino and a rad guy whose name escapes me at the
moment.

As always comments, thoughts and inputs from the group here is more than
welcome.

Chas

[I.P. Freely]

Chas wrote:
> RP (da Vinci) performed in June.

> Path report... showing the tumor fully encapsulated, negative
> nodes and vesicles.

> first post-op PSA of 0.1

That combination implies your remaining PC is remote, i.e., not in the
prostate bed, which lessens the expected benefit of SRT. Please keep us
apprised of your research findings, as many of us face the same dilemma
inherent in negative margins: the easier adjuvant tx is less likely
to hit the new tumor.

I.P.

[Claude]

x-no-archive: yes
Hi Chas,
I can appreciate how anxious you are about these results and your wish to
get on with further treatment. However, lab analyses can sometimes be off.
If it were I, I would wait (as difficult as this is) for the results of
another PSA test. Meanwhile you can research your options while waiting.
Just my opinion, and I'm not a physician. Claude

"Chas" <[email protected]> wrote in message
news:[email protected] ..
> My history:
>
> PSA of 1.7 under proscar. I took as equivalent to 3.4
> 12 core biopsy performed in Oct 2007 based on my breast cancer, BRCA2
> genetic mutation and older brothers prostate cancer.
> A side note: My brother had a Gleason 8 and a PSA of
> Biopsy showed one core with a Gleason 6.
> RP (da Vinci) performed in June.
> Path report was good, showing the tumor fully encapsulated, negative nodes
> and vesicles. Tumor was reported to be at 2 to 10% of gland and given a
> Gleason score 9. The Gleason was a surprise but overall we were pleased.
>
> Post op recovery was uneventful. Incontinence only a minor problem and
> improving week by week. 1 small pad a day just in case and none at night.
> Impotence remains, but I had not expected rapid progress there. Time will
> tell.
>
> Then today I received first post-op PSA of 0.1
> Unhappily I have the zero and decimal properly placed.
>
> My surgeon and I are disappointed and I am of course concerned.
>
> Next step is not yet clear, although I believe conventional wisdom would
> say SRT. I have already vetted a pair of rad onc fellows during my
> selection of treatment journey, but is that really the next step? I have
> made an appointment with a medical onc early Oct to get her take on it.
>
> Questions to the group...
>
> Can I reasonably expect to see any reduction in my next test? I think
> not, but I'm thinking a second test would be appropriate before I launch
> into any treatment program, be it SRT or some pharmaceutical mix. The
> interval for the next test is unclear. It would seem to me doubling time
> comes into play here. BTW all my PSA tests have been thru the same lab.
>
> While I have detectable PSA, am I correct in that there is no good way to
> determine if this is due to tissue on the prostatic bed or if systemic
> (metastatic) disease? Obviously future treatments would be leveraged by
> the answer. My preop bone scan was clear.
>
> When and if the time comes, is there a usual or normal progression of
> drugs used?
>
> When researching the med onc (Prostate specialty) my surgeon referred me
> to, I find she is involved in a prostate cancer trial.
>
> to wit:
> "A Phase 1, Open-Label, Dose-Escalation Trial to Evaluate the Safety,
> Pharmacokinetics,
> and Pharmacodynamics of MGCD0103 (MG-0103) in Combination With
> Docetaxel (Taxotere®)
> in Subjects With Advanced Solid Malignancies"
>
> I am curious as to the study, but do not see myself anywhere near the
> point of enlisting as a lab rat or even if Docetaxel is reasonable step at
> this time.
>
> I have spent little of my time to this point on treatment regimens for
> post surgery PSA issues. If anyone has a reading list, I'd be happy to
> receive it. I have read Walsh, Scardino and a rad guy whose name escapes
> me at the moment.
>
> As always comments, thoughts and inputs from the group here is more than
> welcome.
>
> Chas
>
>

[I.P. Freely]

I.P. Freely wrote:
> Chas wrote:
>> RP (da Vinci) performed in June.
>
>> Path report... showing the tumor fully encapsulated, negative nodes
>> and vesicles.
>
>> first post-op PSA of 0.1
>
> That combination implies your remaining PC is remote, i.e., not in the
> prostate bed, which lessens the expected benefit of SRT. Please keep us
> apprised of your research findings, as many of us face the same dilemma
> inherent in negative margins: the easier adjuvant tx is less likely to
> hit the new tumor.

OTOH, a new study coming out soon is described by my onc team as showing
that our future is predicted better by post-op numbers (e.g., Gleason,
node and SV involvement, margins) than by PSA. Stay tuned.

I.P.

[[email protected]]

On Sep 25, 2:05*pm, "I.P. Freely" <fuhgheddabou...@noway.nohow> wrote:
> I.P. Freely wrote:
> > Chas wrote:
> >> RP (da Vinci) performed in June.
>
> >> Path report... showing the tumor fully encapsulated, negative nodes
> >> and vesicles.
>
> >> first post-op PSA of 0.1

Chas -

Ouch! I know how that feels. A few years after my Gleason 8 (with one
positive node) was resected, radiated and chemotherapied (obviously I
was pretty aggressive in my treatment choices), I got the bad news -
0.04 (level of detection was 0.02). But first, go get another PSA. I
don't want to give you inappropriate hope, but shortly after I
finished a year of the three treatments descibed above, up popped
0.08. Re-check that day was <0.06 and it stayed undectable for three
years. So .... probably lab error. Also, I guess it might be residual
normal prostate tissue. Again, repeat PSAs will answer that question.

The Gleason 9 is your problem. Get educated while your PSA is low.
Talk with all three specialists. GEt good, specialist, care. Don't let
them turn you away from local treatment just becuase of statistical
probabilities.

good luck,

CoreyC

[Steve Jordan]

On September 25, Chas wrote:

> PSA of 1.7 under proscar. I took as equivalent to 3.4

If that was before diagnosis (dx) with PCa, fine. Afterwards, the PSA is
what it is.

(snip)

> Tumor was reported to be at 2 to 10% of gland and given a Gleason
> score 9. The Gleason was a surprise but overall we were pleased.

Sorry to rain on parade, but a Gleason 9 is never, ever, any reason to
be pleased. It's aggressive; dangerous. I know from personal experience.

> Then today I received first post-op PSA of 0.1 Unhappily I have the
> zero and decimal properly placed.
>
> My surgeon and I are disappointed and I am of course concerned.

So: Fifteen months post RP, the PSA is 0.10 ng/mL. Do make sure that
there is no < sign before the number. This is vital!

> Next step is not yet clear, although I believe conventional wisdom
> would say SRT. I have already vetted a pair of rad onc fellows
> during my selection of treatment journey, but is that really the
> next step? I have made an appointment with a medical onc early Oct
> to get her take on it.

Is Chas in the area of Phoenix, Arizona? Reason I ask is that my med onc
is a female, first name Sharon. Please advise via e-mail.

Consultation with a med onc is prudent. Would that more of us would do it.

> Questions to the group...
>
> Can I reasonably expect to see any reduction in my next test? I
> think not, but I'm thinking a second test would be appropriate before
> I launch into any treatment program, be it SRT or some
> pharmaceutical mix. The interval for the next test is unclear. It
> would seem to me doubling time comes into play here. BTW all my PSA
> tests have been thru the same lab.

PSA testing is a process, not a snapshot.

Several PSA tests, preferably of the ultrasensitive variety, would be
extremely useful in assessment of the clinical situation.

I recommend, as do medics who know far more than I and are not Internet
amateurs, that the PSA tests be done on a 28-day (q28d) cycle.

> While I have detectable PSA, am I correct in that there is no good
> way to determine if this is due to tissue on the prostatic bed or if
> systemic (metastatic) disease? Obviously future treatments would be
> leveraged by the answer. My preop bone scan was clear.

Per Dr. Strum, the bone scans are so unreliable that flipping a coin
would be just as good.

So far as I know, which is definitely not dispositive, there is in fact
NO reliable means of determining the source of PSA post-primary treatment.

Sorry, that's the way it is....

> When and if the time comes, is there a usual or normal progression of
> drugs used?

That is determined by the patient's individual clinical status. A
competent med onc can advise.

> When researching the med onc (Prostate specialty) my surgeon
> referred me to, I find she is involved in a prostate cancer trial.
>
> to wit: "A Phase 1, Open-Label, Dose-Escalation Trial to Evaluate the
> Safety, Pharmacokinetics, and Pharmacodynamics of MGCD0103 (MG-0103)
> in Combination With Docetaxel (Taxotere®) in Subjects With Advanced
> Solid Malignancies"
>
> I am curious as to the study, but do not see myself anywhere near
> the point of enlisting as a lab rat or even if Docetaxel is
> reasonable step at this time.

So far as I can see, this is a Phase 1 trial. This means that
researchers are testing a new drug or treatment in a small group of
people (20-80) for the first time to evaluate its safety, determine a
safe dosage range, and identify side effects.

> I have spent little of my time to this point on treatment regimens
> for post surgery PSA issues. If anyone has a reading list, I'd be
> happy to receive it. I have read Walsh, Scardino and a rad guy whose
> name escapes me at the moment.

And here's what I believe is the very best: _A Primer on Prostate
Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" by medical
oncologist and PCa specialist Stephen B. Strum, MD and PCa warrior Donna
Pogliano. It is available from the PCRI website and the like, as well as
Amazon (30+ five-star reviews), Barnes & Noble, and bookstores. A
lifesaver, as I very well know.

Regards,

Steve J

[Chas]

<<snipped>> for brevity.

I was off the air for a bit but have received all your comments. If I may
respond collectively...

IP: Thanks for your input, I will indeed stay engaged with the group and
look forward to the study you mentioned.

CoreyC.. You comment re second PSA is well taken and will be done. I have
Med Onc visit next week to kick off my tour of the experts to find the right
person to guide me thru this while my own reasearch is going into high gear.
Good luck to you as well.

Claude: Second PSA is planned as you and others have suggested. thanks
for your input.

SteveJ: I think you misread my original post which admittedly was not as
clear as it might have been. My post op psa of 0.1 was 3 months after
surgery, not 15. And, no, there was no < sign. I'm not sure how I left
you the impression that I was pleased with a Gleason 9. I was however
pleased with the other aspects of the path report. The Gleason 9 is a
significant and scary number. Thanks for your other comments and I will
look for the Strum book. BTW I live in New Jersy, just across the river
from Philadelphia, where my surgery was performed.

Again thanks to all of you.

Chas

[Steve Kramer]

"Chas" <[email protected]> wrote in message
news:[email protected] ..

> Then today I received first post-op PSA of 0.1
> Unhappily I have the zero and decimal properly placed.

Based on your 9 Gleason and your emphasis on the decimal, I'm assuming that
you did not have a "less than" symbol in front of it.


> Next step is not yet clear, although I believe conventional wisdom would
> say SRT.

One, I would not consider it yet. True, detectable is disappointing, but
there is a slim possibility that you will not need any salvation treatment.
Two, if your PSA does rise and you do have to consider that you're not
cured, I'm thinking a trip through radiation might be unecessary. A Gleason
9 might preclude that.

> I have already vetted a pair of rad onc fellows during my selection of
> treatment journey, but is that really the next step? I have made an
> appointment with a medical onc early Oct to get her take on it.

Perfect!

> Can I reasonably expect to see any reduction in my next test? I think
> not, but I'm thinking a second test would be appropriate before I launch
> into any treatment program, be it SRT or some pharmaceutical mix.

Agreed. In three months.

> While I have detectable PSA, am I correct in that there is no good way to
> determine if this is due to tissue on the prostatic bed or if systemic
> (metastatic) disease? Obviously future treatments would be leveraged by
> the answer. My preop bone scan was clear.

Yup.

> When and if the time comes, is there a usual or normal progression of
> drugs used?

I would say that with your PSA at Dx, if you had a 6 or 7, maybe even an 8
Gleason, the natural progression would be RLRP, SRT, ADT, then chemo.
Sometimes, recurrence after surgery and with a 9 Gleason, an onc will push
you toward ADT.




--
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, <0.04, <0.1 2/12/08
Illegitimati non carborundum

[Chas]

Thanks Steve K. As always your comments just plain make sense.
I will update the group after my 10/2 appointment with the med onc.

<<snip>>

[Chas]

As previously reported, I had an RLRP in June. Tumor fully encapsulated,
negative nodes and vesicles. Gleason 9 (4+5). First PSA at 13 weeks
post-op was 0.1, ( no < sign )

I have met with my surgeon, a medical onc and my original urologist over the
last few weeks. The only thing that seems clear at this point is to wait it
out another 3 months before doing anything. Unhappily, that goes against my
"don't just stand there do something" character, but I can handle it.

A second PSA test was just done again at a 4 week interval with the same 0.1
result which at least seems to confirm the first reading.

My research tells me that there is no definitive staging tests which can
resolve the local vs systemic question. The oncologist wants some mri
studies which I suspect will not bring a lot of clarity to my status but
may serve. I will have the MRIs next week. Unless something unexpected is
found, I seem to be in a 3 month PSA cycle.

The wild card here is of course the Gleason 9. Someone earlier ( IP? )
mentioned a soon to be published study that may suggest that post-op Gleason
may be more significant than PSA in determination of follow on treatment.
If known, who is authoring the study and when or where will it be
published?

I haven't found any solid information as to a trigger point for secondary
treatment, but .2 or higher has come up often in what little I have found
and seems to the view of my docs as well.

I must admit that the reality of a detectable PSA and a Gleason 9 has me at
a higher stress level than I have ever experienced. I must abandon my self
image as a calm cool collected guy. This cancer may drive me crazy before it
kills me.

Chas

[Steve Jordan]

On October 15, Chas wrote:

(snip)

> My research tells me that there is no definitive staging tests which
> can resolve the local vs systemic question. The oncologist wants
> some mri studies which I suspect will not bring a lot of clarity to
> my status but may serve. I will have the MRIs next week. Unless
> something unexpected is found, I seem to be in a 3 month PSA cycle.

On the contrary, I believe that the following staging blood tests will
be helpful:

Chromogranin A (CGA: This test is of great importance to Gleason 9s such
as Chas and me. It helps to detect androgen-independent PCa
(neuroendocrine) wherever it may be lodged.

Carcino-Embryonic Antigen (CEA): a fetal antigen or protein that may
be expressed by PCa that is aggressive and often androgen independent.

Neuron-Specific Enolase (NSE): a neuroendocrine marker.

All the MRI will do is detect mets that are sufficiently large to be
detectable my such means. But whatever is detected may look like but not
be a met.

That's where the blood tests are especially helpful. I have been engaged
in a running argument with my medics, who claim that a very ugly MRI of
my third thoracic vertebra is a PCa met. What it in fact shows is
extensive sclerosis (hardening). But all of the blood tests, including
bone-specific alkaline phosphatase, are within normal limits. I ask,
"where's the science?" and get a blank stare and a reference to the MRI
as if it's The Word of God. Well, my case is of no relevance to anyone
else's, I'm just venting. As my cardiologist responded when I complained
to her, "welcome to medicine."

The blood tests are discussed on the encyclopedic website of the
Prostate Cancer Research Institute (PCRI) at
http://www.prostate-cancer.org/index.html

So far as concerns the trigger point for "secondary tx" the med onc
seems to be conservative, which I think is in the circumstances a good
thing.

Lastly, I don't understand why the uro is still involved. His job was
finished when the surgery was finished.

Regards,

Steve J

[I.P. Freely]

Chas wrote:

> The wild card here is of course the Gleason 9. Someone earlier ( IP? )
> mentioned a soon to be published study that may suggest that post-op
> Gleason may be more significant than PSA in determination of follow on
> treatment. If known, who is authoring the study and when or where will
> it be published?

It's not just Gleason; it's the whole set of post-surg staging factors,
e.g. Gleason, SVI, lymph nodes (N), mets (M), margins. My onc expected
to have more info to offer at our next meet, in January. Maybe Google
can find something.

I.P.

[Steve Kramer]

I don't think there is anyone who would argue doing anything at a steady 0.1
PSA.

Nerve racking? Hell yes.

--
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 undetectable since, < 0.04 on 10/09/08
Illegitimati non carborundum

"Chas" <[email protected]> wrote in message
news:gd6iou$mcg$[email protected]..
> As previously reported, I had an RLRP in June. Tumor fully encapsulated,
> negative nodes and vesicles. Gleason 9 (4+5). First PSA at 13 weeks
> post-op was 0.1, ( no < sign )
>
> I have met with my surgeon, a medical onc and my original urologist over
> the last few weeks. The only thing that seems clear at this point is to
> wait it out another 3 months before doing anything. Unhappily, that goes
> against my "don't just stand there do something" character, but I can
> handle it.
>
> A second PSA test was just done again at a 4 week interval with the same
> 0.1 result which at least seems to confirm the first reading.
>
> My research tells me that there is no definitive staging tests which can
> resolve the local vs systemic question. The oncologist wants some mri
> studies which I suspect will not bring a lot of clarity to my status but
> may serve. I will have the MRIs next week. Unless something unexpected
> is found, I seem to be in a 3 month PSA cycle.
>
> The wild card here is of course the Gleason 9. Someone earlier ( IP? )
> mentioned a soon to be published study that may suggest that post-op
> Gleason may be more significant than PSA in determination of follow on
> treatment. If known, who is authoring the study and when or where will it
> be published?
>
> I haven't found any solid information as to a trigger point for secondary
> treatment, but .2 or higher has come up often in what little I have
> found and seems to the view of my docs as well.
>
> I must admit that the reality of a detectable PSA and a Gleason 9 has me
> at a higher stress level than I have ever experienced. I must abandon my
> self image as a calm cool collected guy. This cancer may drive me crazy
> before it kills me.
>
> Chas
>
>
>

[Vince]

On Fri, 26 Sep 2008 14:28:26 -0400, Steve Kramer wrote:

> "Chas" <[email protected]> wrote in message
> news:[email protected] ..
>
>> Then today I received first post-op PSA of 0.1 Unhappily I have the
>> zero and decimal properly placed.
>
> Based on your 9 Gleason and your emphasis on the decimal, I'm assuming
> that you did not have a "less than" symbol in front of it.
>
>
>> Next step is not yet clear, although I believe conventional wisdom
>> would say SRT.
>
> One, I would not consider it yet. True, detectable is disappointing,
> but there is a slim possibility that you will not need any salvation
> treatment. Two, if your PSA does rise and you do have to consider that
> you're not cured, I'm thinking a trip through radiation might be
> unecessary. A Gleason 9 might preclude that.
>
>> I have already vetted a pair of rad onc fellows during my selection of
>> treatment journey, but is that really the next step? I have made an
>> appointment with a medical onc early Oct to get her take on it.
>
> Perfect!
>
>> Can I reasonably expect to see any reduction in my next test? I think
>> not, but I'm thinking a second test would be appropriate before I
>> launch into any treatment program, be it SRT or some pharmaceutical
>> mix.
>
> Agreed. In three months.
>
>> While I have detectable PSA, am I correct in that there is no good way
>> to determine if this is due to tissue on the prostatic bed or if
>> systemic (metastatic) disease? Obviously future treatments would be
>> leveraged by the answer. My preop bone scan was clear.
>
> Yup.
>
>> When and if the time comes, is there a usual or normal progression of
>> drugs used?
>
> I would say that with your PSA at Dx, if you had a 6 or 7, maybe even an
> 8 Gleason, the natural progression would be RLRP, SRT, ADT, then chemo.
> Sometimes, recurrence after surgery and with a 9 Gleason, an onc will
> push you toward ADT.

Hi all,

Even though I had my RRP back in 09/2000 I'm fairly new to this group.
I've popped in and out over the years "lurking" to see what was going on
here. Now I'm back full time due to my PSA rising. Three tests since
last April were .8 .8 and .6. So as some of you know who were following
an earlier question I had on here, I'm going to a radiation oncologist at
the VA next Tuesday. Can any of you all think of any questions that I
should be asking him?

Also, being as I haven't been a regular on here, I'm lost to some of the
abbreviations used. Like the ones above. I'm guessing RLRP is robotic
laproscopic prostatectomy, SRT is some kind of radiation and ADT is a
drug? How am I doing? Is there a cheat sheet of abbreviations?

Thanks all,

Vince

[Vince]

On Fri, 26 Sep 2008 14:28:26 -0400, Steve Kramer wrote:

> "Chas" <[email protected]> wrote in message
> news:[email protected] ..
>
>> Then today I received first post-op PSA of 0.1 Unhappily I have the
>> zero and decimal properly placed.
>
> Based on your 9 Gleason and your emphasis on the decimal, I'm assuming
> that you did not have a "less than" symbol in front of it.
>
>
>> Next step is not yet clear, although I believe conventional wisdom
>> would say SRT.
>
> One, I would not consider it yet. True, detectable is disappointing,
> but there is a slim possibility that you will not need any salvation
> treatment. Two, if your PSA does rise and you do have to consider that
> you're not cured, I'm thinking a trip through radiation might be
> unecessary. A Gleason 9 might preclude that.
>
>> I have already vetted a pair of rad onc fellows during my selection of
>> treatment journey, but is that really the next step? I have made an
>> appointment with a medical onc early Oct to get her take on it.
>
> Perfect!
>
>> Can I reasonably expect to see any reduction in my next test? I think
>> not, but I'm thinking a second test would be appropriate before I
>> launch into any treatment program, be it SRT or some pharmaceutical
>> mix.
>
> Agreed. In three months.
>
>> While I have detectable PSA, am I correct in that there is no good way
>> to determine if this is due to tissue on the prostatic bed or if
>> systemic (metastatic) disease? Obviously future treatments would be
>> leveraged by the answer. My preop bone scan was clear.
>
> Yup.
>
>> When and if the time comes, is there a usual or normal progression of
>> drugs used?
>
> I would say that with your PSA at Dx, if you had a 6 or 7, maybe even an
> 8 Gleason, the natural progression would be RLRP, SRT, ADT, then chemo.
> Sometimes, recurrence after surgery and with a 9 Gleason, an onc will
> push you toward ADT.

Hi all,

Even though I had my RRP back in 09/2000 I'm fairly new to this group.
I've popped in and out over the years "lurking" to see what was going on
here. Now I'm back full time due to my PSA rising. Three tests since
last April were .8 .8 and .6. So as some of you know who were following
an earlier question I had on here, I'm going to a radiation oncologist at
the VA next Tuesday. Can any of you all think of any questions that I
should be asking him?

Also, being as I haven't been a regular on here, I'm lost to some of the
abbreviations used. Like the ones above. I'm guessing RLRP is robotic
laproscopic prostatectomy, SRT is some kind of radiation and ADT is a
drug? How am I doing? Is there a cheat sheet of abbreviations?

Thanks all,

Vince

[Steve Jordan]

On October 16, Vince wrote:

> Even though I had my RRP back in 09/2000 I'm fairly new to this group.
> I've popped in and out over the years "lurking" to see what was going on
> here. Now I'm back full time due to my PSA rising. Three tests since
> last April were .8 .8 and .6. So as some of you know who were following
> an earlier question I had on here, I'm going to a radiation oncologist at
> the VA next Tuesday. Can any of you all think of any questions that I
> should be asking him?

(1) Since I don't have a prostate, what, exactly, do you propose to radiate?

(2) What form of RT (radiation treatment) do you use? IMRT, IGRT?

(3) How many PCa patients have you treated?

(4) What results?

(5) Do you expect your proposed tx to be curative?

(6) If so, why? Is the PCa confined to the RT area?

(7) What is the evidence that the PCa is within the proposed RT area?
(If the PCa is not there, RT will not be curative)

(8) Would you be supervising the actual tx, or someone else? Who? What
is his/her history?

That's all I can think of just now.

Never forget, RT is a *local* tx.

Have staging blood tests such as CGA, CEA, NSE been done? These can
inform the patient whether his PCa is systemic (not the same as
metastatic).

If the PCa is systemic, no amount of RT will be curative. In such a
case, the PCa is incurable and treating it as chronic is probably the
next option. Chronic does NOT = death sentence.

And: when ADT via an LHRH agonist (Lupron, Trelstar, Zoladex) + Avodart
+ Casodex is no longer effective, the next step might NOT be
chemotherapy. Look up ketoconazole.

> Also, being as I haven't been a regular on here, I'm lost to some of the
> abbreviations used. Like the ones above. I'm guessing RLRP is robotic
> laproscopic prostatectomy, SRT is some kind of radiation and ADT is a
> drug? How am I doing? Is there a cheat sheet of abbreviations?

See the glossary on the encyclopedic website of the Prostate Cancer
Research Institute (PCRI) at
http://prostate-cancer.org/index.html

Regards,

Steve J

"We must tailor the treatment to the nature of the disease. We must
listen to the biology."
-- Stephen B. Strum, MD
Medical Oncologist
PCa Specialist

[Steve Kramer]

"Vince" <[email protected]> wrote in message
news:ZtPJk.3756$m%[email protected]..

> the VA next Tuesday. Can any of you all think of any questions that I
> should be asking him?

I cannot, however, when the time comes, I can tell you how to get through it
with the least amount of side effects.

> Also, being as I haven't been a regular on here, I'm lost to some of the
> abbreviations used. Like the ones above. I'm guessing RLRP is robotic
> laproscopic prostatectomy, SRT is some kind of radiation and ADT is a
> drug? How am I doing? Is there a cheat sheet of abbreviations?

RRP is Radical Prostatectomy
LRP is Laproscopic Prostatectomy
RLRP is Robot assisted LRP
SRT is Salvation Radiation Treatment (given after surgery fails)
ADT is Androgen Deprivation Therapy (sometimes called Hormone Therapy).
ADT1 is usually Lupron. ADT2 is usually Lupron plus Casodex. ADT3 is
usually Lupron, Casodex and Zoladex, but that seems to be waning.
Tx is treatment
Dx is diagnosis

There are several types of radiation treatment and you should let your
doctor describe them. I imagine you will received IMRT, but let him talk to
you about that.



--
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 undetectable since, < 0.04 on 10/09/08
Illegitimati non carborundum

[I.P. Freely]

Vince wrote:

> I'm going to a radiation oncologist at
> the VA next Tuesday. Can any of you all think of any questions that I
> should be asking him?

When I reach the point of worrying about secondary treatment (anything
after the first treatment), I'll spend many days selectively reviewing
this forum's archives with search functions, rereading the appropriate
chapters of my dozen PC books, and Googling appropriate sites and
studies. I'll develop some preconceptions and pages of questions, bounce
them off this group for a reality check, then enter the doc's office
with all my relevant concerns and questions in a clipboard. As the doc
conducts the interview, I'll make notes and physically check off any of
my concerns and questions as they arise and are answered. By the time
the doc asks, "Any questions?", there should be only a few unanswered
ones left, and we can go through them quickly.

All this will achieve several goals, including:
1. I can evaluate the doc's knowledge, concerns, willingness to serve my
needs, flexibility, and advice.
2. He learns that I'm well informed and eager to participate in the process.
3. I learn how well he accepts #2. If he doesn't, he can go to hell;
this is my LIFE, and quality thereof, we're laying out. Virtually every
doc I've seen for serious stuff like this -- and there have been many --
has expressed his appreciation for my preparation and, if necessary,
involvement.
4. We cover almost everything in one visit, rather than having to
re-convene again ... and maybe again.
5. The whole decision, including action if necessary, is accelerated;
this accelerated my initial treatment by many months and very
dramatically affected my follow-up treatment decision.
6. By that first meeting I think we should have the common and relevant
acronyms down cold, because I don't think anyone is prepared to make a
decision this critical and personal until they've reached that point. (I
don't think any respectable oncologist should make choices this critical
for a patient unless the problem has reached a critical stage, it's
obvious the patient cannot and/or will not get involved, and the doc
knows an awful lot about the patient's QOL and survival priorities.)
This is a big task, but each bite is quite manageable and nothing
important to us needs to be technical; anybody who can read and
understand a newspaper can understand PC factoids, even the basic
statistics, one page at a time.
7. Our ability, willingness, and confidence to make a valid decision are
vastly improved.
8. We will have firmer convictions in our choice, which should be very
reassuring years down the road when things get worse ... which is very
likely after an initial treatment fails.
9. We will feel I've done all I can to optimize our future.

SRT = salvage (secondary) radiation treatment.

ADT = androgen deprivation therapy, aka hormone therapy, aka chemical
castration. A wide selection of drugs is avaiable.

I.P.

[Steve Jordan]

On October 16, Steve K wrote:

(snip)

Well, I just can't resist the opportunity to pick a few nits.

> RRP is Radical Prostatectomy

Actually, it's radical *retropubic* prostatectomy.

> LRP is Laproscopic Prostatectomy

LapAroscopic

> RLRP is Robot assisted LRP

Robot-Assisted Laparoscopic Radical Prostatectomy.

And it is NOT a "robot", but that's another argument.

> SRT is Salvation Radiation Treatment (given after surgery fails)

Salvage.

Though we can all hope for salvation.

> ADT is Androgen Deprivation Therapy (sometimes called Hormone Therapy).

Agreed.

> ADT1 is usually Lupron.

Or Zoladex. Or Trelstar.

> ADT2 is usually Lupron plus Casodex.

Or Zoladex. Or Trelstar.

> ADT3 is usually Lupron, Casodex and Zoladex, but that seems to be waning.

ADT3 is *always* Lupron/Zoladex/Trelstar + Casodex + a 5-alpha reductase
inhibitor such as Proscar or, better, Avodart.

Gee, I feel ever so much better :-)

Regards,

Steve J

[Vince]

On Thu, 16 Oct 2008 22:45:13 +0000, Vince wrote:

> Hi all,
>
> Even though I had my RRP back in 09/2000 I'm fairly new to this group.
> I've popped in and out over the years "lurking" to see what was going on
> here. Now I'm back full time due to my PSA rising. Three tests since
> last April were .8 .8 and .6. So as some of you know who were following
> an earlier question I had on here, I'm going to a radiation oncologist
> at the VA next Tuesday. Can any of you all think of any questions that
> I should be asking him?
>
> Also, being as I haven't been a regular on here, I'm lost to some of the
> abbreviations used. Like the ones above. I'm guessing RLRP is robotic
> laproscopic prostatectomy, SRT is some kind of radiation and ADT is a
> drug? How am I doing? Is there a cheat sheet of abbreviations?
>
> Thanks all,
>
> Vince

Thanks Steve J, Steve K and I.P. for your responses. You've all been a
big help. Steve J that's quite some Glossary on the PCRI web site. I'll
be a Google'n fool this weekend looking for more info and to better
educate my self before my meeting with the RO on Tuesday.

Thanks again.

Vince

[Steve Kramer]

"Steve Jordan" <[email protected]> wrote in message
news:5ZQJk.15$[email protected]..
> On October 16, Steve K wrote:
>
> (snip)
>
> Well, I just can't resist the opportunity to pick a few nits.

Personally, I think I accurately assessed the level of Vince's prior
knowledge and provided his answer is the most understandable way -- aside
from my spelling of laparoscopic, of course.

[Steve Jordan]

On October 17, Steve Kramer replied to me:

> Personally, I think I accurately assessed the level of Vince's prior
> knowledge and provided his answer is the most understandable way -- aside
> from my spelling of laparoscopic, of course.

And, (as Steve K insists on pressing the issue) the misrepresentation of
the available meds.

Regards,

Steve J

[Steve Kramer]

"Steve Jordan" <[email protected]> wrote in message
news:gL9Kk.2386$[email protected]..
> On October 17, Steve Kramer replied to me:
>
>> Personally, I think I accurately assessed the level of Vince's prior
>> knowledge and provided his answer is the most understandable way --
>> aside from my spelling of laparoscopic, of course.
>
> And, (as Steve K insists on pressing the issue) the misrepresentation of
> the available meds.

Generalization, not misrepresentation. Hence, the word "usually" in each
case.

Do you disagree that it is usually Lupron, then usually Casodex, ....

[Steve Jordan]

On October 18, Steve K replied to me:

> Generalization, not misrepresentation. Hence, the word "usually" in
> each case.
>
> Do you disagree that it is usually Lupron, then usually Casodex, ....
>
No, I *agree* that it's usually Lupron/Casodex.

Just wanted to be sure that the full picture was being placed before the
folks.

So maybe that's picking nits, as I wrote, or maybe it's not.

Whatever, no disrespect intended.

Regards,

Steve J

"Do not compute the totality of your poultry population until all the
manifestations of incubation have been entirely completed."
--William Jennings Bryan, American lawyer & politician

[Steve Kramer]

"Steve Jordan" <[email protected]> wrote in message
news:%3oKk.32381$[email protected]..

> Just wanted to be sure that the full picture was being placed before the
> folks.

Understood, that's your style. Mine is to try to communicate with a minimum
of confusing data. When they're ready for the intermediate course, I sit by
and watch guys like you.

I try to picture myself as I was in 2000 -- knowing nothing but that this
damned thing might kill me and not wanting to research it or even think
about it if I didn't have to. By 2002, I was ready for guys like me (now)
who could explain it in simple terms and one or two paragraphs. By 2003, I
was ready for guys like you who could give me explanations at a higher level
and I could understand them and often had the patience to read it all. But,
then I went on Lupron and forgot it all, so now I'm helping guys like me in
2002. :-)


> Whatever, no disrespect intended.

Iknewdat. None taken.

[Steve Jordan]

On October 18, Steve K replied to me, in pertinent part:

> ..............By 2003, I was ready for guys like you who could give
> me explanations at a higher level and I could understand them and
> often had the patience to read it all. But, then I went on Lupron
> and forgot it all, so now I'm helping guys like me in 2002. :-)

Well, hell, I'm on my second round of ADT and I have no no no, um, er, huh?

Regards,

Steve J

"Well, I've wrestled with reality for thirty-five years, Doctor, and I'm
happy to state I finally won out over it."
-- James Stewart as Elwood P. Dowd in "Harvey"

[Steve Kramer]

"Steve Jordan" <[email protected]> wrote in message
newsCtKk.1665$[email protected]..
> On October 18, Steve K replied to me, in pertinent part:

> Well, hell, I'm on my second round of ADT and I have no no no, um, er,
> huh?

I'm sorry, I did not know that. I knew the PSA was increasing between '05
and '07, but I did not realize you went back on ADT. When did that happen?


--
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 undetectable since, < 0.04 on 10/09/08
Illegitimati non carborundum

[Steve Jordan]

I wrote:

> Meanwhile, I've started a chapter of the international PCa education
> and support organization Us Too. Hoping to get enough warm bodies at
> meetings to make it worthwhile. I have received much help since I
> was dxd and this is my means of paying it forward. BTW, Us Too's
> website is www.ustoo.org

I should have added that my online support group activities are also
means of paying it forward..

Regards,

Steve J

[Steve Jordan]

At an ungodly hour on October 19, Steve posted:

Quoting me

>> Well, hell, I'm on my second round of ADT and I have no no no, um, er,
>> huh?

He replied

> I'm sorry, I did not know that. I knew the PSA was increasing between '05
> and '07, but I did not realize you went back on ADT. When did that happen?

Well, as may have been noted, I don't write much about my own situation.

While on Avodart "maintenance" (which does not make one PSA-proof) my
PSA sloooowly rose to 0.98 ng/mL as of May 2008. Because of my high-risk
case, I had selected 1.0 as my trigger point for restarting. 0.98 was
close enough for me, so I added Trelstar q28d (monthly) and Casodex 50
mg qd (daily) for ADT3.

PSA immediately crashed to <0.03. I stopped Casodex, which I think was
gilding the lily, and am now on ADT2 with Trelstar + Avodart. PSA
remains UD. I intend to continue (if PSA stays UD) for the recommended
year, then take another vacation.

Meanwhile, I've started a chapter of the international PCa education and
support organization Us Too. Hoping to get enough warm bodies at
meetings to make it worthwhile. I have received much help since I was
dxd and this is my means of paying it forward. BTW, Us Too's website is
www.ustoo.org

Regards,

Steve J

[Steve Kramer]

"Steve Jordan" <[email protected]> wrote in message
news:9HJKk.6648$[email protected]..
> At an ungodly hour on October 19, Steve posted:


>> I'm sorry, I did not know that. I knew the PSA was increasing between
>> '05 and '07, but I did not realize you went back on ADT. When did that
>> happen?
>
> Well, as may have been noted, I don't write much about my own situation.
>
> While on Avodart "maintenance" (which does not make one PSA-proof) my PSA
> sloooowly rose to 0.98 ng/mL as of May 2008. Because of my high-risk case,
> I had selected 1.0 as my trigger point for restarting. 0.98 was close
> enough for me, so I added Trelstar q28d (monthly) and Casodex 50 mg qd
> (daily) for ADT3.
>
> PSA immediately crashed to <0.03. I stopped Casodex, which I think was
> gilding the lily, and am now on ADT2 with Trelstar + Avodart. PSA remains
> UD. I intend to continue (if PSA stays UD) for the recommended year, then
> take another vacation.

I do not mean to pry into your privacy, but this sort of information,
especially how you're controlling thing and results are, I believe,
extremely important to our primary function. As always, your choice.


--
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 undetectable since, < 0.04 on 10/09/08
Illegitimati non carborundum