Dear All,

I had come to realize that after 18 mos. of being involved in this
fight I really did not know anything about this illness and I needed to
start from scratch and do some serious research.  (I had done a whole
lot of research on related topics like ED, sexual rehab, and a bunch of
other subjects, however.)

I have already begun the process by requesting any and all info on my
husb's case from his doctors and then afterwards I will hopefully
consult with the "experts" here and see if there is anything that we
should be doing.  I am frankly worried about J's Gleason 4+3 even
though I read just the other day (in a very credible source) that the
GL score by itself is not dispositive like some people say, it is the
totality of the circumstances that counts. So a 4+3 does not
necessarily act like an 8,.i.e., metastatic ca, in the long run.  So
all you "twins" of J who have those same numbers, cheer up . . .

I also received a newsletter last week from a uro announcing a new
"comprehensive" men's health center at Mt. Sinai hosp. in NYC and it
included a useful discussion on how to evaluate medical websites.  The
article said that there is an "honor system" for health-related
websites developed by HON, "Health on the Net Foundation" and that a
site that bears the HON "seal of approval" has met certain standards
for accuracy and reliability.  See www.hon.ch.org.

The newsletter also recommended several pca websites, so I started
looking there for info and I found that the sites were all excellent.
I had not even spent any time at two of these sites before and I found
they contained some unique info.  So check it out.

These include:

pcaw.com - prostate cancer Education Council
fightprostatecancer.org - National Prostate Cancer Coalition
prostatecancerfoundation.org - Prostate Cancer Foundation
ustoo.org - UsToo

A link from one of the above sites led me to Don Cooley's site,
prostate-help.org and when I arrived there I thought I had died and
gone to heaven.  A burden had been lifted from me because here was a
man who was rational, intelligent, informed, not paranoid, who I
immediately recognized as credible because i had encountered a lot of
the same unplesant "realities" he had.  What I mean is, forex: doctors
who lie (not nec. deliberately), statistics that don't mean anything,
research studies that are "massaged" to get whatever result you want,
evidence that is not credible, snake oil salesman and even superstar
docs who don't deliver.  I also realized that there are a number of
very useful diagnostic tools that might have been helpful (even
critical)  to my husb but that were never offered to him.

I lost whatever little innocence I had left but it was worth it.  Don
does not focus on the negative.  He just gives you incredibly sensible
advice on how to deal with this illness, especially if you are newly
dx.  He doesn't peddle anything on his site, it is not "sponsored" by
anybody and therefore not beholden to anybody. It is an aggregate of
useful info obtained from his own experiences and from those of other
Patients.

I don't agree w/everything he says -- he included some docs on his list
of "artists" who I think don't belong there but I don't know
everything, either.  I am still a newby, relatively.

Don has very high standards for the "research" he includes: it has to
be from a respectable, peer-reviewed journal, forex.  Even so, DC does
is open-minded: he does include a lot of info from non-conventional
practitioners.

Here is a sample from the site.  Do yourself a favor and read it before
you make any choices.  And it is not just for the newly diagnosed but
for patients in any stage of this journey.

[For the newly diagnosed}

PART 1: Good enough?

WHEN IS GOOD ENOUGH TREATMENT "GOOD ENOUGH"?

DO DOCTORS KNOWINGLY LIE?

PART 2: Peer Review and Failure
PEER REVIEWED PUBLICATIONS - ARE THEY EQUAL?

GAMES THAT CAN BE PLAYED

PART 3: Which Treatment?
HOW THEN DO WE KNOW THAT A TREATMENT IS THE BEST?

TREATMENT CHOICES BASED ON ???

DIAGNOSTIC TOOLS - ARE THEY USED CORRECTLY

PART 4: Doctors and the real world!
WHAT MAKES A DOCTOR ACCEPTABLE

WE WANT TO BELIEVE

PART 5: Choice
THE FINAL CHOICE - BASED ON?

--------------------------------------------------------------------------------

This site also has a bunch of excellent forums and live "chat".  So by
all means have a look and spend some time at this site to see if there
is anything there for you.

I think someone in this group once mentioned cooley to me (maybe Bev?)
but I just didn't have the chance to follow up at the time.

Of course, if anybody has any disagreement with what I have said they
should speak up because I only spent a few hours at the site which
isn't much, all told.

I wish you all good health, good news from the lab and a very happy New
Year.

Leah

P.S. Also if you are a newbie and are mystified by some of the lingo
here try netlingo.com for starters.  They have everything from soup to
nuts -- i.e., if you don't know what a computer is this is the place to
go. I also tried to find a site that would specifically explain pca
acronyms but phoenix5 wasn't working and I couldn't find another one.
So if you know of a site that decodes pca lingo please let us newbies
know.