Thank you very much for the information.  We are
studying-as-fast-as-we-can. :)
What if we took a tape recorder to our followup meeting with this doc?

Do you think if we ask him to send the slides to Bostwick in Phoenix he
will do it?  If he won't, then should we go get them while we are
there, and take them to Bostwick?
It is fully our intention to see more than one doctor.  I figure we
should go back to him once, but since he volunteered that the biopsy
"is not uncomfortable, and as a matter of fact, many men doze through
them."  This was not honest, so there goes one criteria for choosing a
doctor.

So maybe we shouldn't go back to him?  Both Steve and I have a history
of not changing doctors when warranted.  So we don't know what's
reasonable, or the appropriate response to this situation.

Juniper,

With around 50 replies to you initial post you have received a
conglomerate of opinions that could reasonably be characterized as
"scary".

As you absorb all this information please remember that you are dealing
with an extremely diverse bunch of survivors, each with their own
unique story, each with their own unique interpretations, each with
their own private issues, each with their own fears and concerns. By
being here they have one very important thing in common. They (we) all
want to help!

Having said that, take us all with big grains of salt. There are
survivors here who represent the extremes of a Gaussian distribution.
Most of our posts are driven by our disease experience, our prognoses
(is that a word?), our treatments, our side effects, our quality of
life. Then there are the demographics; age, location, race, family,
education, vocation and even the sensitive metrics like social and
financial status.

Put this all together and you get a serious Mulligan stew, one whose
components are impossible to isolate, but one whose overall presence
should be warm and comforting. You and your husband are embarking on
your own unique journey and, as you proceed, you will add your own
unique components to our stew. You are welcome, and we will all
endeavor as best we can to make your journey bearable and your taste of
our stew savory.

I too have my own story, one that is not necessary to share with you at
this point.

Instead I will try to summarize the key points I have found to be my
grail in dealing with my journey to date.

In one short proclamation is can be stated as "Own Your Disease!"
Cancer is a monster, a monster that can't be killed. But cancer is a
monster that can be tamed. Untamed, it owns you, drives you, directs
you, restricts you, intimidates you, and, in the end can devour you.
Tamed you own it. It fits in your life as you allow it. You manage,
direct, restrict and minimize its impact. You understand and deal
confidently with its presence and its consequences.

There are four steps I have taken that have successfully tamed my
monster:

1) Knowledge!! Know your disease. Be careful here! Insufficient
information and understanding and you may feel like you are wandering
in the wilderness, too much and you may loose sight of the forest for
the trees. Learn and understand until you feel comfortable in executing
the steps that follow. There is no standard here. There CAN BE such a
thing as "too much information". There is a point for each of us where
the experts must take over and where we must rely on their judgment.
Overdo it and you can unnecessarily restrict your expert's options.
Under educate yourself and not only are you at the mercy of your chosen
experts, but that choice may be faulty, and the information they are
dealing with may be insufficient. The amount understanding required is
different for each of us.

2) Manage Your Disease! Make sure you are fully in charge. It is your
disease, your body, your life. Don't let anyone else, ANYONE, tell you
what to do, how to react, or what is important. The factors that
control your journey should be decided by you and you alone. This does
not mean that you are alone in your journey. Far from it (see following
steps) - no man is an island - you can't do it alone, BUT you can
manage what is happening and will happen to you. A couple of
recommendations: A) Plan for the worst, then expect the best. This will
minimize your disappointment when things don't turn out the best and
will maximize you response to positive results. B) Put your disease in
perspective. There is always something more important, someone worse
off. Don't let the management of your disease consume you.

3) Know and Cherish Your Support System! Attitude is everything, but
attitude is a reaction, a symptom, and its primary catalyst is your
support system. Your support system will consist of the people around
you; your family, friends, co-workers, and service providers (doctors
etc), AND, the way they react to and interact with your condition. They
should, and will willingly, walk with you on your journey and remind
you that your life is full of caring, love, and compassion. Reject the
naysayers and doom-and-gloomers. Theirs is generally a selfish agenda.
This is not a one way street! You must cherish your support system,
recognize and appreciate them, and they must understand thoroughly and
in all aspects what you are going through.

4) Share Your Journey. This is perhaps the hardest step to take.  For
many of us a diagnosis of cancer, particularly a cancer involving
sexual organs and functionality, is accompanied by an almost
involuntary isolationistic reaction. We may be embarrassed. We may
suffer, altruistically in silence. We may react angrily with "It isn't
anybody else's business". If we persist in isolating others from our
plight we are doomed to suffer in silence and hopelessness. Again, our
journey in successfully taming the cancer beast cannot be taken alone.
There is a direct parallel to addictive behavior. The process of
addictive recovery and that for successful cancer survival is
surprisingly similar.  First commit to survival. Then admit that it
can't be accomplished alone. Finally share your survival journey and
rely on the help you must and will receive in the process. There are
all sorts of mechanisms. This NG is one. There are countless other
forums and chat rooms. For that indispensable people-to-people factor
look for local support groups and meetings. They abound. For prostate
cancer there are the Man-To-Man and Us Too national/international
support groups. There are many others. As with AA meetings, find the
one(s) with which you are most comfortable. Finally, as with addiction,
relapse may happen. You may find yourself slipping into fear or despair
or even giving up hope. Rely on the ones, hopefully fellow survivors
with whom you have shared. They are your "sponsors" and when you are
down, they will do their utmost to bring you up and back on the
successful survivor's path.

We posting on this NG are here for you as we have been for those who
have come before. I remember well my first post and the outpouring of
support that buoyed me up. I hungrily absorbed the details, but that
was not and is not the most important part of the experience. What
really made the difference was that these folks were here for me and
that they cared, really cared. I can't say thank you enough.

Now I've shared with you and that act in itself generates one more
positive. It feels good!

You and your husband will be OK. Believe it! Live it! Survive!

Thank you, John.  I am nit-picking with my questions, but you only get
one chance to do something the first time.  The upcoming is a first
second doctor visit (first since dx).  We are sending him a fax (to
save a day trip) and want to know what else we might ask for to be most
fully informed for that visit. It's Mayo Clinic, they did a b&w
ultrasound and I guess that's all they have.  But? MRIs?  Anything like
that?  He could order them for Steve to do up here, or we could go up
ahead of time so they'd be ready for the visit.  The purpose of this
letter is to gently suggest something that he ought to do and might not
otherwise.  As well as the orig idea for the 2nd path review.  If we're
going to see 2 or 3 drs, they may as well all have the same info, so
get it now. So, here's the fax and besides some "thank you so much"
stuff, what do you think?  Is it respectful enough for a Drs ego,
clear, accurate, and does it ask for what we need at this stage?  Steve
wants time to understand this stuff so he can go in with intelligent
questions.

--fax--I would like to have the biopsy specimens examined by a PCa
pathology specialist before our visit.  That way, we will have as much
information as possible when we meet.  As I understand it, correct
staging is critical to making a good decision, and this will ensure
that the biopsy has been examined by two different specialists.  Also,
please request PLOIDY analysis, and other appropriate tests you need.
The more information we have when we meet, the better quality of
decisions we can make.
Please send this to
Bostwick Laboratory
5050 N. 40th Street, Phoenix, AZ 85018
Telephone: 602-424-1580 Fax: 602-424-1581
And ask them to fax us a copy of their results as well.
If you will be needing any other tests that can be done locally
(bloodwork or scans), please let me know and I will take care of them
now.  You can let me know, or go through my physician, Dr. M.

Hey, Steve, thanks.  I seriously doubt it will be harder for me than
him.  (I'm writing on my Steve's computer, but this is Laurel).  I
doubt that anything is harder to face than a threat to a man's
virility.  From what I see of men.  But if I could take the pain and
lighten his, I would.  I feel like I should be Mother Teresa or
something.  Guess what I am?  Up and down, emotional.  When I got home
from work (he gets home before I do), and he told me he got a call with
the dx, guess what I did?  Did I hug him, murmer soothing words, say
all the right things in just the right way?  Oh, no.  I yelled.  Yelled
about the doctor, about the pain of the biopsy, about whatever.  Who
knows what. (I pretty much knew what it would be, so it wasn't
surprise.)   So, I hate for it to be true but it probably is that he is
carrying at least as much as me, not counting the fact that he is the
one with PCa.  So I have the same personality, (far from perfect), plus
I'm less stable.  Jeeze.  When he deserves is rainbows and down pillows
and angels singing in his ear....

I'll email you about your Scottsdale doctor.  Thank you.

Juniper wrote, on Steve's computer:

I am getting the impression that Juniper and Steve are feeling pressure
to do something -- anything. I believe that that is the path to choosing
a tx that may not be the optimum. Take the time to do it right.

A fPSA test can be helpful in staging. It's another datum.

A urine test for prostatitis should have been done before the biopsy.
The latter should have shown any evidence of it if it was present.

I believe that the matter has moved beyond such early staging.

*All *urologists are surgeons. Some are more familiar with tx of PCa
than others and should -- should! -- refer the patient if/when the case
has developed beyond his specialty.

I think that what Juniper really has in mind is a radiation oncologist.
I can recommend one in Scottsdale.

There can be a huge and vital difference. What's needed is what is
called in the field "an artist." That's why discussion here and at a
support group (isn't the local Prescott UsToo group up and running??) is
so very important.

See above. Send me a message and I'll pass along the info on both the
med onc previously mentioned and the rad onc.

I think that I recognize the signs of the stress of overload. Stop. Take
a deep breath. Resolve to combat this disease and not allow it to
engender panic. The dx is not a death sentence by any means.

This is the well-known dance with the PCa bear. Sometimes the bear
leads, sometimes the patient leads.

Steve is newly diagnosed. The Prostate Cancer Research Institute has a
special section on its website for such folks. It's at:
http://prostate-cancer.org/education/education.html#newly_diagnosed
The first sight of the index can be daunting, but approaching it step by
step as an educational task will reduce the workload to manageable
parts. It's like studying a new language; one begins with small steps
and eventually, with perseverance, becomes fluent.

And last, I cannot emphasize too strongly that preparation for this
struggle is absolutely necessary. It involves studying, learning, and
taking charge. I have previously recommended excellent sources of
information.

Knowledge is Life!

Regards,

Steve J

steve wrote...snip...

All urologists are surgeons, you may also want to consult with a
radiation oncologist and an oncologist who specializes in PCa.

Younger men are often discouraged from choosing radiation because of
the chance of secondar cancers.  10 years post treatment the incidence
seems to be in the range of a few percent.  The number is expected to
climb and plateau somewhere in the 10-20 year range.  Search "secondary
cancer" within this NG to read more.

This doesn't sound right.

A partial list of "artists" can be found at
http://www.cancer.prostate-help.org/canames.htm
Again, one of the larger questions in front of you and your husband is
whether the disease is systemic or not.  An assessment of this question
will help you select a treatment strategy.  A good PCa oncologist could
help with this question.

This will probably help a lot...Ron

No.  Not only is it as premature as scheduleing surgery, it is in a whole
'nuther class of stupidity.  Don't listen to the alternative medicine people
if you want time with your husband.  As a matter of fact, scheduling surgery
is 10 times smarter, though premature.

Done.

Absolutely!  You need a second opinion on that Gleason, too.

I don't know anything about PAPs, though I've seen them discussed here.  I'm
not sure how useful a free PSA is now that he has been diagnosed.

Testing for prstatitis is not an issue.  His prostate, one way or the other,
is a thing of the past.  Whether by radiation or surgery, it's coming out or
will be destroyed in place.

He should see a surgeon.  He should see a rad man.  He needs to hear both
sides of the equation.  But, like it or not, he is almost certainly going to
have surgery.  The only people his age that opt for radiation are those who
feel the horse is already out of the barn.  Admittedly, his PSA and Gleason
are nearing that standard, but I do not believe they have surpassed it.  If
he comes back with clean bone and CAT scans, I beleive surgery will be his
choice.  But, that's just me (and a few hundred other people here).

Finally, it sounds like you're brain is fried and you're headed off in a
thousand directions.  And, of course, that is natural.  I think you should
take a break.  Maybe this coming weekend.  De-stress.  You have enough time
to get everything researched and planned.  But, you need a clear head.