Yep, just call them up.  I talked to two urologists at Stanford by
calling the urology department and got appointments within a couple of
weeks.  Some doctors will want your biopsy slides (although nobody used
mine) so you will have to check them out of the facility where the
biopsy was done but that shouldn't be a major issue.  I did play phone
tag with a doc at UC Medical Center and gave up on him mainly because I
had all the information I needed from Stanford, the non-Stanford doctor
who diagnosed me and the doctor who ultimately did the surgery.
Dave Perry

Like you, I was being served in one of the top places (Johns Hopkins,
where Dr. Walsh is in charge), so I just satisfied myself that the
surgeon was competent and that was it.  I saw only the one doctor.

jimhoney
standard RRP age 52, cured, no significant aftereffects

I generally trust my doctors, so I can't speak from experience.  But I
think there are several standard ways.  First you can ask your primary
care doctor to suggest someone else for a second opinion.   In some
cases, even your urologist will be willing to do so.  You can also do a
search of the urologists available to you through your insurance plan,
and you can check their formal qualifications.  That would include where
they went to medical school, where they did their residencies, and
whether or not they are board certified in urology.  Your public library
should have some references which give that information.  Board
certification is extremely importnat, but in some cases a good doctor
might not yet be board certified because he or she just finished a
residency.

You can also get information from people you know.  If you call me or
send me e-mail,  I would be glad to tell you about my urologist, with
whom I am very happy.  His office is in Winnetka.

However, in your case, you already have access to a highly regarded
group, and it is unlikely you are going to get any different opinion
from any qualified urologist.  If you look at the treatment guidelines
for urology,  you will fine a decision tree.  You can figure out the
treatment yourself just from knowing your diagnosis.  It is pretty
clearly going to be surgery or radiation, most likely surgery because of
your age.

If you do choose surgery, you should find out everything you can about
your doctor's experience with radical prostatectomy, how often he has
postive margins in cases like yours---remember that this can depend on
Gleason score among other things---the likelihood of serious
incontinence, and the likelihood of permanent impotence---which will
generally depend strongly on your age.

One thing to keep in mind is that while there are differences of opinion
about treatment,  they largely arise from the different perspectives of
the doctors involved.  For example, Strum appears to be largely an
oncologist and he uses methods which appear to me not even to be in the
mainstream of most oncologists.   His advice, I think, would be most
relevant for high risk patients whose cancer has probably spread.  For
such patients, surgery is not a good option.  Also, if you got advice
from someonw who specializes in seeds, you would probably be presented
with arguments for that method.   Dr. Catalona, with almost all the
urologists you are likely to find,  are going to think in terms of
surgery in a case like yours.  And you will even find doctors out there
who will argue strongly that you need do nothing and you will most
likely never be bothered by your cancer.  (A reasonable argument can be
made for that, but my personal feeling is that for a case like yours,
the risk is to high to chance it.)

Unfortunately, you are not going to find an expert who stands above all
this and can tell you whom to believe.  And you are in no position to
evaluate all the medical research literature to decide for yourself.
So you have to rely on your best judgement.   Of course, the fear is
that you will make a wrong decision and things will turn out badly.
But in fact the end result will depend much more strongly on the biology
of your disease than on your specific decision, as long as you don't do
something completely off the wall.

In the latter category,  I would place watchful waiting or deciding on
hormone therapy of some sort as a primary treatment mode right now, but
that is just my opinion.

(snip)

Yes. It's a "consultation."

(snip)

Exactly true.

Yes. Contrary to the advice of my rad onc (whom I have fired), I simply
called a med onc who was recommended by a knowledgeable PCa survivor and
made
an appointment for a consultation.

What she prescribed so impressed Dr. Strum that he asked for her contact
info so he could refer patients to her.

Next week, having done some extensive homework, I'll meet with her to
formulate a strategy for this struggle.

Regards,

Steve J
__
"'MD' does not mean 'Medical Deity.'"
-- Stephen B. Strum, MD

Hi Ron,

I was going to a urologist in my neighboorhood.  I live in long island, NY
and my urologist found the PCa.  I had what I thought of was a psa in the
"norm" range (2.4) but my uro didn't like that number for my age of 46.  He
was persistent and found cancer after the 3rd biopsie.  He sat my wife and I
down for a "discussion" and told us the options.  After going through varies
treatments  he said in your case the treatment is an esay decsion, you have
to have your prostate removed, RRP.  He said that he had performed over 200
RRP's and performed the operations at cornell University and northshore
hospitals.  Like you, I wanted the best surgeon not the most convient.
However, he seemed to have the credials and had excelent patient/doctor
repoir.  My wife and I said what else are we looking for.  He has the
expierence that I was looking for.  Yeah, there were a few other uro's that
came highly recomended, but he did perform the RRP a few weeks later and
everything turned out great.
The most important questions to ask is how many surgies have you performed.
The only other advice I can give you is I would try and find a surgeon who
can perfrom this procedure laproscopicaly.  This will cut down on the
healing and pain.

Either way, the best of luck.

on 2/11/2005 8:10 AM Ron B said the following:

Probably a wise course of action and one that I chose but we each have
to make that decision.  It can be difficult but...

Docs are, or should be, used to being second guessed.  It's called
second opinion and many insurance carrier require it on many procedures.
 If your doc gets bent out of shape on something that is so important
to you, then it's time to find a new doctor.  I mean, I can see them
getting a bit frustrated if you present with a compound fracture of your
leg and you start asking "isn't there something you do besides
surgery?"<g>  However, for them to railroad you into RRP, Seeding, etc
on a disease that CAN have such a nasty end game and whose cure, if
improperly applied, can have a tremendous effect on one's quality of
life is just not right.  Fortunately, most docs in this area are
understanding.

As I think I mentioned in our off-list messaging, Ron, Dr Catalona did
NOT do consultations when I went to him.  His nurse was quite clear
about that.  The doctor accepts patients who have already chosen the RRP
route, not those who are sitting on the fence weighing options.  This
might have changed but somehow I doubt it.

Soembody else mentioned this in follow-up so I'll comment.  All Dr.
Catalona needed was to have my slides reviewed by his pathology lab,
that and a meet with me for the old one-finger salute<g>  Pre-op testing
included the bone scan and usual course of testing two weeks prior to
the surgery.  In your case, since you're already "in" the office so to
speak, your slides have probably already been reviewed to his satisfaction.

Yes, actually, once you do YOUR homework, that's exactly what it is.
You want to know and have a right to know who is going to open you up
like can of beans.  You want to know his track record, how many
nerve-sparing procedures he/she has performed, where they trained, what
their morbidity rate is for this procedure.  This is NOT a tonsilectomy.
 Read up on the surgery, whether by RRP, Laproscopic or otherwise, the
surgeon is working more or less blind.

A good doctor will be happy to tell you how good he is.  But then, so
will a bad one<g>.  Look at the numbers, look where they're at.  The
choice between Dr. Catalona or one of his proteges or some other Uro at
Northwestern Memorial and, say, a Uro up at Belmont Hospital or maybe St
Joseph's on the near north side is a no-brainer.  Northwestern,
University of Chicago Hospitals, Rush-Presbyterian did not get their
reputations for excellence by admitting hacks to practice there.  The
reason they appear to be good hospitals is because they ARE good hospitals.

Very!

From my experience the urology practices appear to be very busy, and it is
not all PCa patients because half of the patients in the waiting room are
women.  I guess you have to be selective, i.e., not take a shotgun approach.
Determine a few that you want to see to consult on your case, and you will
probably want to see radiation therapy doctors also, and just be persistent
in trying to get an appointment.  I do not think you have any quality
problems if you are starting out with doctors at Northwestern.  You are not
in the same situation as someone in a small town that has to travel to the
"big city" to see a specialist.

Good luck to you.

Thank you.
David S.

Ron --

Call your primary care doctor and ask him/her who to go for a second
opinion. You should be able to get a couple of referrals this way.

Then call those docs and say you are looking for a second opinion. Then just
chat with them. (Their office will tell you to bring the biopsy slides and
to arrange to see your medical records.) When you talk with the urologists
ask them which surgical method they use (not all docs do nerve sparing.) Ask
how often they perform the surgery. Ask them about other treatment options:
radiation vs. surgery. (Note urologists are more likely to recommend
surgery, oncologists are more likely to recommend radiation.) Go with the
doctor you are most comfortable with.

I was diagnosed at age 46. The first urologist I went to was ready to cut me
up with no nerve sparing (he does this about 12 times a year). But he was
ready to sell me pumps and penile implants (the bulk of his practice.) I
dumped him like a hot potato and found a doctor who specializes in nerve
sparing, who performs the procedure close to 70 times a year.

If I had not done my homework, I would not be standing tall today!

-- Tim

Hi, Ron B:

Here's a site that lists "Centers of Excellence" with some data as to
the doc's track record.  Note that your doctor, Catalona, made the
list, so you would seem to be in good hands.

http://prostate-help.org/canames.htm

Ron C

"Ron B" <Gimel@webtv.net> wrote >

I used two conduits to other specialists, to make sure I was seeing past the
biases of each book and doctor (every doctor I consulted advised this).

First, I went to a big university/VA hospital with a large staff of
oncologists, including surgical, medical, and radiation. I had the first doc
I saw (surgeon) set me up with medical oncologists/endocrinologists. My
ticket into that hospital and into the stream of docs I saw was my PSA and
Gleason scores; once you're a certified member of The PC Club doors open
easily, because most of these people really care and they ALL got Beemer
payments to make.

Second, I asked my primary care physician to set me up with a radiation
oncologist (beat driving back to Seattle just for that). A couple of days
later I told the rad onc I was here for a reality check to consider all
options, gave her my medical records (pathology reports, PC numbers, films,
lab test results), filled out her screening questionnaires, and asked what
she advised. She asked a few questions, left the room, studied my data, and
returned with her written advice -- "Get surgery" -- and her rationale.

Now it's a complete no-brainer. Virtually every book, website, and physician
and I agreed on one approach FOR ME, so I got reamed out the following week
with zero second thoughts.

Questions? I came to be known as "the guy with the clipboard" -- which had
pages of pertinent, sometimes challenging, questions of every one of these
people. Each question was tailored to that specialist, was relevant to
decisions rather than mere curiosity, and had not been answered by the
literature I was devouring. It was that level of preparation that some
doctors said got me into one door after another, sometimes on literally a
few minutes' notice. I talked with four specialists in one short afternoon
that way on my first visit to meet the doc who ultimately opened me up.

How often have you gotten to see a university medical school hospital
department head within minutes of the initial request? That's what being
prepared and involved has gotten me more than once since my doc first said,
"Your PSA is elevated". Now the e-mails I send my surgeon get read,
discussed, and advised on by a variable, veritable team of specialists --
mostly because of my heavy involvement . . . not to mention The Clipboard
and subsequent e-mails (just 2 or 3; I try to keep them pithy). (I had to
write my name in huge letters on the clipboard, because that's what the
hospital staff uses . . . clipboards. They kept putting mine back in their
ques.)

I tried to form "soft opinions" before visiting these guys, by reading
everything I could find. That way I could use their answers to my questions
to bolster or change my opinions real time, rather than agreeing to "go
home, think about it, and get back to us". I made -- actually, reversed -- a
MAJOR decision just Friday based on three little factoids yet another
specialist threw on the table late in the afternoon, and dropped trou for a
whole 'nuther procedure within 5 minutes . . . just because I was so DAMNED
prepared. These guys EAT THIS UP, because it makes their job SO much easier.

That "whole 'nuther procedure" will be a whole 'nuther thread as soon as I
have some time to whip it out.

I.P. but a little less constantly

Ron,

I got a second opinion by telling my HMO that I wanted one.
They gave me a referral to a doctor whom they contract with,
who turned out to be excellent - which was probably just pure
luck because I didn't like the first doctor they sent me to.

In my case the first doctor I had seen was a surgeon, and I
wanted a second opinion from a radiation oncologist, so I could
learn about each option from an expert in it, rather than from
a guy who specialized in the other treatment.

One resource you can use to help find doctors is:

 http://cis.nci.nih.gov/fact/7_47.htm

This is from the National Cancer Institute's Cancer Information
Service.  They have an 800 number you can call 1-800-4-CANCER
(1-800-422-6237), and also have links to many other services on
that page, such as the AMA, the American Board of Medical
Specialties, the American Society of Clinical Oncologists,
and others.

Best of luck.

   Alan