On January 19, John wrote:

(snip)

(snip)

The information is a bit sketchy, but seems enough for a non-medic such
as myself to conclude that the RP and the RT have not been curative.

As both forms of treatment (tx) a local in nature, it is likely that the
disease is systemic.

There are lab tests that can provide information on this. Three that
come to mind are:

Prostatic acid phosphatase (PAP)
Chromogranin-A (CGA)
Carcino-embryonic antigen (CEA)

More is available on the objective, encyclopedic and reliable website of
the Prostate Cancer Research Institute (PCRI) at:
http://prostate-cancer.org/index.html

I recommend that John consult a cancer specialist, a medical oncologist,
preferably one who is well-trained in tx of PCa. There is much that can
be done, but only a specialist is qualified to do it.

The "Resources" section of the above site includes names of some of them.

Good luck.

Steve J

Welcome to the group, John.

I would like to know your last few PSA results, but given the data you've
give so far, I would say that first you need to be concerned, but not
worried.  If your PSA was undetectable and if you're using < 0.1 as your
standard for undetectable, then 0.2 is just one result that popped above the
thermal layer.  And that can be a result of a number of things, including a
botched assay by your lab.

If, on the other hand, you've been watching a sensitive testing process and
you see three successive rises, the last of which is 0.20, then you are
where I was in July 2003; biological failure of surgery and salvage
radiation treatment (SRT).

And, I am sorry to inform you, this stage is called Advanced Prostate Cancer
(APCa).  It is incurable and, in a 54 (?) year old, it is likely terminal.
I say likely terminal because at our age (I'm 53), you and I are not likely
to die of anything else -- unless you're a cop, a fireman, a terrorist
during a Republican administration, or carelessly walk across streets where
busses are likely to frequent.

If you have APCa, additional radiation, assuming you mean curative, is not
likely an option.  Some day, years from now, an oncologist might use it for
palliative treatment.

If you have APCa, most oncologists would now steer you toward what is
colloquially called hormone therapy (HT).  It is actually androgen
deprivation therapy (ADT).  You should read up on this and Dr. Steve Strumm
has a book out with an ADT bent.  ADT has a high potential for several
undesirable side effects.  Some here would tell you that in their reading of
the subject, the side effects are worse than death itself.  Some here would
tell you that they actually used ADT and have since quit because of the side
effects.  Some, including me, will tell you that we have used it, have
suffered through some side effects, but still live a full and complete life.
But, you really need to read up on it so you know what is possible, what to
look for, and how to counteract the side effects as they occur.

Of course, you will want to regularly visit our little group here.  You will
find no better source for support.

And, remember, we are only talking IF you have advanced cancer.  It might be
just a blip depending on your history.

Hi, John.  Welcome to the group.

Steve Kramer's response was right on.  I've nothing to add other than
to say that I'm one of the members who is in a similar situation.  I'm
one who tried ADT and found that the side effects were too much and
quit.  But, I'm watching my PSA and will consider going back on ADT,
maybe on an intermittent basis.  

As Steve said, keep checking in with us.  We're here to give support,
if you need it, while you work out a course of action.

Best of luck to you!

Burney

RP in 1995 (age 52)
RT in 2000
ADT (Casodex) 10/06 - 8/07
Latest PSA - 0.13

burney dot huff at mindspring dot com

Dear G.,

Don't panic or despair.  And you can only get definitive answers from
a doctor, not a newsgroup.

As far as clinical trials are concerned, do look into that -- there is
so much going on.   Yesterday, I looked at Consumerworld, the absolute
best portal for shopping, because husb was looking at camera lenses.
But they have a section on "resources", and under "Health", I found
quite a few good things.  Here are some links for clinical trials:

clinical trials.gov

emergingmed.com (you fill in data, computer matches you with trial)

centerwatch.org

ifpma.or/clinical trials

trialscentral.org (an "encyclopedia" of general info about clinical
trials)

Also, you may want to check out amedeo.com.  This is a company that
abstract hundreds of medical journals for prof'ls.  You can subscribe
and get some limited number of weekly abstracts about a particular
topic, like the latest info on PC.  Also, lists the latest
developments week-by-week.  You can search.  (Have not tried this
myself yet, but other people give it high ratings.)

Finally, for good general, unbiased, info on PC, check out
endotext.org.  They have info for practicing doctors that is
accessible to laypeople.  Excellent.

Best of luck.  Keep us posted.

Leah

Hi John,
  My brother is in a similar boat as you. However his Gleason was 3+5=8.
He had open RP 8 years ago with 36 radiation treatments. He was
undetectable for 7 1/2 years and his psa came back at 1.3. It's doubling
about every 3 mos. His URO wanted to start him on ADT also.  

He decided to go to Taussig Cancer Center Institute at the Cleveland
Clinic. He met with a Dr. Derek Raghavan,MD.PHD and Dr. Steven Smith. He
had two physical eams including blood work; CBC,Auto
Diff,CMP,NSE,Chromograin A and Testosterone. He is scheduled for a
Radionuclide Bone Scan and a CT abdomen/pelvis civ/po for the purpose of
finding any cancer and if so its location.

He was told to work on getting his immune sytemm(diet) and psychological
state back up to normal and continue physical therapy and exercise.

Dr. Raghavans initial thoughts are that he may need no more than
maintenance therapy such as bicalutamide(Casodex) if his immune system can
keep his PSA below 30n/ml. He says if they can do that, he will die of
something other than prostate cancer. He also said that unless the test
show more, he does not see an LHRH agonist(medical castration) necessary.

He was also given a Clinical Trial Form, Phase 11 study of GM-CSF in
patients with PC after RP from the Cleveland Clinic Foundation.

Ron S.

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Sorry about that folks!  I thought I was in private email.

"Steve Kramer" <skramer@cinci.rr.com> wrote in message news:...

Statistically, I expect to be in your shoes within a few years, and I've
discussed these options very briefly with my uro onc. While we can
"chase spots" by irradiating each new identifiable met, it's ultimately
a losing game. Each new spot's location and nature are vital data for
its potential localized treatment. But my doc says that even if my PC
returns, those same statistics say I have the better part of a decade
remaining. I plan to enjoy it, and if it stretches out to two decades,
I'll enjoy it twice as much.

I'm also in your gym shoes. I never went near gyms until a couple of
years ago, a year after my RP, and now my gym days are top priority with
one exception: outdoor days in nature's gym for even better/harder
workouts. Fitness plays a major part in enjoying our remaining time, and
may well extend it significantly even with PC, let alone if we can keep
it at bay. I was quite fit before I hit the gym, but I've made huge
measurable improvements anyway since I got additional personal training
from the gym's professional trainers. Not even the dozens of exercise
physiology and nutrition books I've read were as valuable as were the
aerobic, plyometric, Swiss ball, strength-building, floor, balance, and
flexibility exercises the trainers taught me. They doubled the benefit
while halving the time of my gym sessions. Even if we can't cure our
cancer, we can sure as hell beat it about the head and shoulders and
feel a lot better while it devours us. *Take that, you bastard!*

I.P.

Leah wrote:

Which one?   Which doctor?

I've been to 4 in 8 years and still don't have a definite answer.

___ Blue Wave/QWK v2.12

John wrote:

Perhaps one of the Steves or someone else in the group can
explain some numbers that have been puzzling to Mary and me.

Why do doctors state that a 4.0 PSA is the "warning level"
for newly diagnosed patients, but 0.2 or 0.4 is a "danger
sign" for treated patients?

Joe N.

___ Blue Wave/QWK v2.12

Thanks to all who replied.

Your answers make sense, after one thinks about it in those terms.

No prostate, no PSA.   PSA, prostate cells still present.

Joe N.

___ Blue Wave/QWK v2.12