hi lori - in answer to some of your concerns.  first, yes, we have had
some folks that started out high.  berky was one of them.  someone said,
i think, around 2600 +, but i'm not sure.  

the prognosis is along the lines of what you already suspect but, with
that said, there has been different treatments that have some remarkable
results.  the problem is, it doesn't work the same on everyone, so that
is the joker in the deck.

you appear to have done your homework is so a short time.

may i offer this as a suggestion.  there are some studies that have been
ran on PC SPES that clearly show that there is a reduction of the size
of the tumors.  about 5 years ago, there was a big push that PC SPES was
the answer.  it is made up mainly of various herbs, and then the gov't
stepped in and i don't know what the status of it is now.  but i didn't
hear any negative feedback other than it didn't do what they wanted it
to do, while others responded quite favorable to it.  

if you can get him into a clinical study and he may be able to get
treatment there that isn't available to the general public yet.  

i hope this information has helped.

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional

Lorelei,

I have some theories about this that may or not help you communicate
with your doctors.   If it seems useless, please ignore.

Doctors don't like to deal in bad news any more than anyone else.
That's part of the problem, but it's really more than that.   They don't
want to admit defeat any more than you do.   Their motivations are
professional as well as personal, but they don't like to give up.   And
we should be glad for that.  

A college basketball coach whose team is behind by 20 points with only 5
minutes to play isn't going to talk to his team about the long odds
against them.  He isn't going to be as dispassionately informative and
analytical as those sitting on the sidelines.  He's going to talk to his
players about what they can do to pull this game out yet.  He has to be
that way, both for his own state of mind and his team's.  That's what
they all need to focus on.   And sometimes it works.   And sometimes
it's like that with doctors.  

Now I'm like you, or at least I think I am.   I want to know what the
score is and what the odds are.   I found a surgeon who would talk more
numbers with me.   But a lot of doctors have found that for the most
part, they've had better experiences dealing with their patients in
terms of what you and they are going to do than in terms of objective
analysis.    Sometimes, though, that leads them not to give you
information that you might be able to use.   Some doctors are able to
switch gears, and find ways to communicate better with those patients
who they find like to deal with information.  But some might also be a
bit gunshy about it, based on past experience.

Maybe my assessment is accurate, and maybe it isn't.  I'm not really
100% sure.   But maybe it'll give you some ideas of how to try to
establish better communication.

JohnG

Lori,

I feel deeply for what you and Curt are going through.  You are all
much too young for this to have happened.

I don't know what to say that will be of help to you, so I'll just speak
my thoughts honestly and hope that you will find something of use
in them.

As you know, his prognosis is poor.  There are experimental treatments
but none of them are known to work.  That is why they are experimental.
You and Curt may feel that you would like to try some of them.  If you
do, you may get some satisfaction in knowing that, one way or another,
what you do will be of definite benefit to other families who are facing
this illness.  And it is always possible that one of the treatments will
prolong Curt's life or lead to a remission.  Sometimes one of the
experimental treatments will lead to extraordinary benefit for a few
lucky individuals whose cancer happens to be sensitive to the specific
agents they are experimenting with.

If you want to search for clinical trials, one place to search is at the
National Cancer Institute website at http://cancer.gov/clinicaltrials/.
There is good information there about what to expect, a search form
for finding trials (mostly in the U.S.) and some information about each
trial.

I myself have been treated via clinical trials at the National Cancer
Institute.  The quality of care was very, very high, and there was no
cost whatsoever.  They paid for the treatment, my hospital stays, my
drugs, and all my tests and visits.  The money all came out of their
research funds.  I think this may be true at other cancer centers too,
not just the NCI center in Maryland.

Another thing you might want to consider is to borrow a video camera
from someone.  Perhaps Curt would like to record some things for
you and your child before he gets too deeply into the difficulties of
advanced disease and aggressive treatment.  Maybe you would like
to make some photos or videos of the family all together.

All of us on this group wish you the best.

Warmest regards,

   Alan

Lorelei,

The hormone treatment (HT) they are trying first, which will probably be
somewhat successful for awhile, is intended to repress the androgen
necessary to feed the prostate cancer.  That's terribly simplified, but
until you read up on the disease some more, it will have to do.  The
treatment can reduce the size of the tumors and reduce the PSA accordingly.

The "more aggressive" treatment will be chemo therapy.  Maybe, if there is
study available to him, some really aggressive stuff that might kill the a
lot of the PCa, but is very toxic to Curt.

You are correct in trying to find someone of his age and PSA level, but the
fact is, you will not find someone of your husband's age in prostate cancer
groups.  You will have to look at others and understand that PCa grows
faster the younger you are.

William243 william243@aol.com started with 4900 and was down to 3.5 after
HT.  In OCT 2000 he was 50.  I haven't heard from him in awhile.

There was a BobKat mrwilson1@sio.midco.net here who at 52 was dx's in OCT
2002 with 2540.  By July 2003, it was down to 445.  Haven't heard from him
either.

Berky, at 68, was1614 on 3/1/98 and died today.  Robert Young, at 61, was
1000 on 11/23/99 and died 6/15/2003.

John Preston, johnpreston_welwood@lineone.net at 48, was 640 APR 2003 and he
went down to the low double-digits, but now is back up to 44.

Curt, at 40, with 865, is in a real fix.  HT will probably work for awhile,
but there is no cure for Prostate Cancer.  They will in the future.  We all
hope we live long enough to see it.