On Nov 5, 10:26 am, d127geng...@embarqmail.com wrote:

D-geng:

You do not provide a psa history to determine the rate of change for
your prostate reading. Nonetheless, you need not rush to any decision.
In fact, you MUST not make a decision immediately. Your question about
a second opinion is: absolutely yes. Seek one with the best PCa
professional you can find. You have time to make an appointment with
whomever that may be, even if you have to wait weeks to see him/her.
The cost will be covered under your insurance, and travel costs will
be minimal, especially if you live close to Atlanta, as I assume you
do. There must be fine practitioners there.
A second opinion on the biopsy slide reading will also be likely
covered by insurance and this Gleason score is so important in making
decisions that your second opinion with a doctor will depend on
excellent biopsy readings.Consider it part of the second opinion,
though it must be pursued by you independent of the new consultation.
If you seek a second opinion from a doctor at a medical center he may
have lab pathologists who can consult and provide second biopsy
opinions simultaneously. A conventional urology practice will be
unlikely to offer this. This will require effort on your part to be
certain the biopsy slides are delivered from doctor to doctor in a
timely fashion.
When you seek the second opinion be certain to take copies of your
patient records with you from your first urologist. Do not depend on
the office staff and the delivery services to perform this most
critical function. I sought a second opinion and was glad I had the
first consultation notes and biopsy report with me in hand, as the
notes from doctor to doctor were mis-directed at some point.
Your disease data you present indicate that many urologists would like
to have you as a patient; young, healthy, early detection. You have
the upper hand here. Choose your direction deliberately. When you are
confident of choice and doctor, move confidently.
Be certain that your process allows you to release yourself from all
regret.

On Nov 5, 8:26 am, d127geng...@embarqmail.com wrote:

Sorry to read that your joining the outfit.  I remember after my
biopsy procedure, my uro told me he was 95% sure I was OK.  When he
called with the results I felt like someone had punched me in the
stomach.  After a few days of "why me", I got on with dealing with the
disease.  Initially I had no idea what my particular stats meant and
just figured "I had cancer, the end was in sight."  As I began to
learn about the disease, I realized that my stats meant that my
disease was manageable or treatable and that if you have to have
cancer, there are many that are a lot worse than prostate cancer.
Most men will die with prostate cancer, not from it.

Your stats suggest that you have low-volume, low-risk disease (what is
your fPSA reading and what is your PSA history?).  Don't feel rushed
or pressured, it's very unlikely that taking a few months to educate
yourself so that you can make an informed decision will affect the
outcome.  If you looked hard enough you'd find prostate cancer (PCa)
in over half the men your age.  So if you stick enough needles in
someone your age you'll probably find some evidence of PCa.

Consider all of your options, the various radiotherapies (external
beam radiation (XBRT), seeds or seeds + XBRT), surgery options (open
or robotic RP) and even active surveillance (AS, were you monitor
disease status and have no invasive treatment at present).  Since all
invasive treatments (RT and RP) have a significant potential to affect
your quality of life (QOL), and since this is important to you, and
since you appear to have low-risk disease, AS is a valid option to
consider.  If you are willing to travel than you can pick an artist
and all of these options are open to you.  If you need to stay local,
then go with the whatever the best local treatment option is.

A second opinion is well worth getting and if you do decide on
invasive treatment don't hesitate to ask the docs about their track
records.  Read a couple of books about PCa treatment.  Two that I like
are Walsh's book ("Dr. Patrick Walsh's Guide to Surviving Prostate
Cancer") and Strum's ("A Primer on Prostate Cancer") are good places
to start, be sure to get the most recent editions.  There are a number
of other good ones as well (I'm sure other posters will mention
them).  Also, start collecting copies of all medical records (biopsy
report, lab results, etc.) relating to your PCa.

Regarding your Gleason score, it is relatively difficult for a
pathologist to grade PCa.  There's not one big solid tumor to examine;
rather PCa is typically a diffuse, multifocal tumor.  It becomes even
more difficult when all you have to examine are small biopsy
fragments.  That's one of the reasons that an expert PCa pathologist
(there are roughly a dozen or so around the US, see
http://diagnosis.prostate-help.org/pcgleas.htm
for a listing of some experts) should examine PCa biopsy slides.
Because many people don't have their Gleason Score determined by one
of these experts, there is a documented "under-grading" of Gleason
scores from PCa biopsy specimens (to be accurate, I should say that
there is both over- and under-grading, but, on average, there is more
under-grading).  Said differently, the GS from the pathologic specimen
obtained after RP frequently comes in higher than the GS determined
from the biopsy specimen.  This means that sometimes people pick an
inappropriate treatment (in terms of efficacy that is) method because
their tumor GS was mis-graded.  It would probably be worth having your
biopsy slides reread by an expert since so much hinges upon the GS.
Insurance often covers this re-reading.

Again, take a deep breath and realize that you have many more years to
live.  Take time to educate yourself and make a decision that is right
for you...Best wishes and good health, ron

You certainly want to have any surgery done by someone experienced in
the procedure.   The advantage of Da Vinci is that you will be back to
work somewhat sooner.   Depending on the skill of the surgeon,  at age
59,  you should stand an excellent chance or a cure and of avoiding
significant side effects.  You  ought to be able to continue riding your
motorcycle after everything has healed.  Your surgeon can give you some
guidance about how long it will take, but I would be surprised if it
were longer than a month or two.  You will probably be incontinent and
have to wear pads for a few months, but your likelihood of being
permanently incontinent should be very low.   Many surgeons achieve
excellent results with respect to impotence for men your age, 80 percent
or higher. (Though, you will be impotent for some period of time
following surgery.)   Ask your surgeon for an estimate.   But note that
impotence can be treated by a variety of methods, and there is no reason
why you need to give up on sex even if you are impotent.   Read Walsh on
the subject and also try the book by Peter Scardino.

I don't see how the quality of the local hospital makes much difference.
  The follow-ups to the surgery can be done by your local urologist in
his office.  They don't involve complicated procedures.   Often the
doctor will have a nurse do them.

At your age, I think it makes sense to treat the cancer.  It is possible
it will remain indolent and never bother you, but the chances of your
developing advanced metastatic prostate cancer are too high, I think, to
gamble.  You could consider some form of radiation instead, but I doubt
if you would fare any better that way.   Any urologist will be likely to
give you the same advice about the necessity of treatment, but they may
have different opinions about just how to go about it.  You might also
consider having another pathologist study the biopsy samples.   Judging
Gleason score is somewhat subjective, and it is possible another
pathologist might grade it up or down.  If it goes up to a 7=3+4, that
won't make any difference in your choices.  If it goes down to 5 or
lower, it is possible you could consider watchful waiting, but
personally I think that is not too likely in your case.  There are some
nationally known pathologists, such as Epstein at Johns Hopkins, to whom
samples can be sent to be checked.  Ask  your urologist about it.

If you read the experiences of some of the men in this newsgroup,  you
may get an exaggerated idea about quality of life problems.  Remember
that many of these men are different from you in relevant ways, and also
a group like this is more likely to be populated with people with
problems.  By and large, the great bulk of men like you, who are
diagnosed and treated for prostate cancer, end up living relatively
normal lives following treatment.  In any case, the quality of life
problems resulting from advanced prostate cancer are pretty bad, so you
should want to avoid them if you can.

Good luck!

On November 5, d127gengler wrote:

(snip)

The fear is normal. But it should not be permitted to control what is done.

Here are some recommendations:

(1) Have an expert pathologist perform a validation examination of the
biopsy specimens. Accuracy is vital, as what occurs from this point
forward depends utterly upon having reliable information on clinical
status.

Such an expert exam is a "second opinion" and I understand is covered by
insurance. Even if not, it costs only about $350.

Here are labs:

Bostwick Laboratories [800] 214-6628
Dianon Laboratories [800] 328-2666 (select 5 for client services)
Jon Epstein (Hopkins) [410] 955-5043 or [410] 955-2162
David Grignon (Michigan) [313] 745-2520
Jon Oppenheimer (Tennessee)  [888] 868-7522
UroCor, Inc. [800] 411-1839

They will provide shipment information. They should be instructed to
copy the patient on their report.

FWIW, I had a second opinion from Bostwick. Information was in hand in
just over a week.

(2) Refer to the objective and encyclopedic website of the Prostate
Cancer Research Institute (PCRI) at
http://prostate-cancer.org/education/education.html#newly_diagnosed
for guidance. Also available there is information on blood tests that
are very useful in construction of a complete chart of the illness.
These tests are often neglected, which is somewhat like taking off for
an airplane trip without a chart and without checking weather.

The site also lists some expert physicians. The portal is at
http://prostate-cancer.org/resource/find-a-physician.html

(3) Read the best textbook on prostate cancer (PCa), _A Primer on
Prostate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" by
medical oncologist and PCa specialist Stephen B. Strum, MD and PCa
warrior Donna Pogliano. It is available from the PCRI website and the
like, as well as Amazon (30+ five-star reviews), Barnes & Noble, and
bookstores. A lifesaver. I know.

Good luck. Please keep us informed.

Regards,

Steve J

"Empowerment: taking responsibility for and authority over one's own
outcomes based on education and knowledge of the consequences  and
contingencies involved in one's own decisions. This focus provides the
uplifting energy that can sustain in the face of crisis."
--Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled
"The Empowered Patient's Guide."

On Nov 5, 9:26 am, d127geng...@embarqmail.com wrote:

I know that I am in the minority in my opinion, but if you have a
serious concern for quality of life, I would recommend that you
consider Dr. Robert Leibowitz from L.A.  Try reading his slide show
at:  http://compassionateoncology.org/pdfs/FullertonLecture.307.pdf
Many of his patients end up with a better quality of life than they
had before going for treatment.

On the plus side, his PC specific death rate 6.2 years after the start
of treatment is ~6 times better than RP.  On the minus side, nobody
yet knows what his PC specific death rate will be at the 15 year
mark.  Also on the minus side, none of his patients are cured of PC -
they just die of something else eventually other than PC.

Ed Friedman

Hello d127gengler,

As others have said "welcome to the club". Bet this is not one that you
wanted to join, none of us did. Once you are here you will be pleased with
the information and caring that is shared by people.

I have just undergone the Advance procedure Oct 13,2007) and will offer my
anecdotal experiences for you to weigh along with the others offered. Each
of our own experiences can not be used to say yours will be exactly the
same, but none the less you can use them for a snap shot into a varied data
set. I am not a medical professional but I do have the personal experience
that may be helpful to your concerns.

My specifics are:
Age 56 Dad died of PCa at 83
PSA history = around 5.0+/_ for the past few years, slight rise
Biopsy late August 2007 - T1c Gleason 6 (3+3) performed by uro w/ 30+
DaVinci procedures.
Choice of Robotic surgery by very experienced Dr with over 1000 robotic
surgeries in NYC. (15/week) I did get the real McCoy not one of his
assistants
Surgery on 10/13/07 discharged 10/16, catheter in for 1 week- removed 10/22
urine does not leak at night, during the day I change diapers and pads
My erectile response is returning

My answers to your questions and concerns...
Take a deep breath and don't think you need to be rushed into a quick
decision. Find your best choice that fits your specifics.

Quality of life issues in my case and others that I have heard from indicate
that robotic or radical prostatectomy improve with time. My erectile
response is returning nicely. I just have to tie my hands behind my back to
prevent experimenting to quickly. ;-).

The urinary issue is not as quick to be under full control as I would like.
It probably is still early. Start practicing the Kegel exercises.

It is good that you have insurance. It would be difficult to imagine doing
this part of my health care without it.

I am 3 weeks out of the surgery, other than the wetting issue, I feel that
going back to work would be no problem. Feel great, walk 2 - 3 miles per
day. was told not to lift more than 5 lbs but I don't feel like it would be
an issue. I will listen to that warning, don't want to screw up.

I live in the rural Catskill Mountains of New York. I don't trust my care on
the system around here. I went to the suburbs of NYC for my biopsy and
consults. My mom lives outside NYC so I was able to stage surgery and
follow-up appointments from there. Well worth the inconvenience.

Get as many opinions as you need. Go with the Dr with the most experience
possible. Ask lots of questions, it may help to have a pen and paper to
frame your questions and record notes of the answers. It may be good to have
someone along for the ride to also hear and remember answers.

Once again, this group is a great resource. You can get both anecdotal and
factual knowledge.

Good luck with the choices...

Peter

I don't think there's much I can add to the excellent advice
others have already given.

As others have said, watchful waiting is an option for you,
but you are young enough that even a slow growing cancer
could turn quite nasty before you're ready to pack it in from
a heart attack or some other disease.  It might also be easier
to deal with treatment now than later.

The treatment most often recommended for men your age
is surgery.  You are lucky, I think, to have a urologist who,
instead of offering to do it himself, proposed to send you
to a real prostate surgery specialist.

Radiation is another common alternative.  If you're worried
about the effects on employment, the treatment that currently
has the smallest impact is, to my knowledge, brachytherapy.
You can get it done on a Thursday or Friday and be back at
work on Monday.  Side effects are always possible with any
procedure, but I believe that the great majority of brachytherapy
patients have very little disruption to their lives.

It is not recommended by itself for high risk cancer but, like
other treatments, it appears to be fairly effective for low risk
cancers.

If you live in Georgia, we have seen some very good things
posted here about the Radiotherapy Clinics of Georgia (RCOG).
Like the surgeon that your uro recommended to you, I think
RCOG will have people that treat hundreds of prostate
cancer patients each year.

If I were you, I think I would visit the surgeon that your uro
recommended in order to hear what he has to say and to
form an opinion of him.  Write down a list of all your questions
for him before you go.  I'd also get a consultation from the
best radiation oncologist you can find and ask him or her
questions and form an opinion of him or her.

Eventually you'll have to make a choice.  It won't be easy.
You won't know which choice is right.  You won't be able
to fully predict what will happen.  Anything you do will
involve risks.  But life is like that.  If you've done your
homework it will at least be an informed choice and you'll
at least avoid errors that could have been avoided.

Best of luck.

   Alan

Prostate surgery should not impact the QOL aspects you directly mention
past the month or two of healing time. At worst, it could possibly
impact your sex life, but only in technique, not desire. Even if you get
particularly unlucky and need pads forever, as I apparently will,
they're a minor nuisance, not something actually important such as bugs
in your teeth or a dirty bike. The primary impact my RRP at 61 has had
on my extremely physically active lifestyle is positive; it motivated me
to become a gym regular, which enhances my life, my longevity (I hope),
 and my sports. Get your surgery, if that's your treatment choice, in
the winter and you won't miss one ride unless you live in a warm
climate, in which case you'll have extra motivation to hit the gym
before and after surgery.

I.P.

I'm not sure why everone is  talking as if surgery is your only
option.  You would seem to be an excellent candidate for brachytherapy
(seed implantation).  Urologists, who are surgeons by training,
normally recommend surgery first, including Dr. Walsh and his book.
Talk to a radiation oncologist for another opinion, especially
considering your concern for quality of life issues

Welcome to the club d127.  It's a damned sorry way to start off a day, isn't
it.

We all were.  And, occasionally, we still are.

Fantastic!  Then you are going into this with your eyes wide open.  I would
recommend not stopping there.  Scardino wrote a good book and there are some
great websites.

You obviously paid attention to Walsh.  You are in charge.  Ask for the doc
you want and don't settle for an assistant.

Sadly, you have cancer.  No matter what you do, you will have quality of
life issues.  There is just no getting around that.

I had no problem riding my Honda 750 after surgery.  I worked fifty, sixty,
and occasionally seventy-hour weeks up until January when I went to a
40-hour-week assignment.  Keeping in mind, I had open surgery, then
radiation, then hormone therapy.  There's no reason you can't work.

One quality of life issue is nerve sparing.  I'd avoid the small hospital.

My husband 59, in the same boat, recently dx with  prostate ca, gleason 3+3.
rising psa ( I think 5 something ).

We had a lot of good advice  from this group and please don't rush into a
decision. Consider everything carefully. Once you make a decision, stick
with it. Yes get  second opinions on the choices you consider. You have to
decide what is best for YOU.

My hubby went to MD that does radiation and brachytherapy  for a consult and
then last week went to another surgeon who does the robotics surgery.

Hubby has a lot of literature to read from these visits , people to call
etc.  He has decided whatever the decision will be done in February after
our daughter's wedding.   Both Md's said that was fine and there was no
immediate rush  decision  because of his labs , reports and etc.

We live rural with a small hospital too but went to larger cities for these
consults . There are good surgeons out there. Each MD we went to,  spent way
over an hour talking to us, answering every question  we had, giving us info
etc. The Robotics  surgeon  even gave an large email/phone list of his
patients for references .

In the meantime, think positive, find things to laugh about, enough the
simple pleasures in life, eat healthy and take time with your decision you
are comfortable with.

sincerely

Joan

On Nov 5, 11:26 am, d127geng...@embarqmail.com wrote:

TAke a deep breath....

Listen to the folks on this group, Steve Kramer, IP Freely and Ron,
Joe Price and Steve Jordan have been particularly helpful and offer a
wide perspective and access to information that you will not find in
books.

I had an open RP on 10/2 and was 1) cancer free (allegedly, we'll wait
for my first PSA follow-up)  2) dry within the week that I had the
catheter out and 3) enjoying sex (without the wood) within 3 weeks of
operation.

Although my wife has hidden my bike (non-motorized variety) for at
least another week, I did get on a stationary bike for an hour with no
ill effects last week.

These results are not guaranteed. Past performance is not indicative
of future results. Your results may vary significantly. Age, fitness
level, choice of medical professional and attitude may impact the
achievement of your own goals. Consult your tax advisor before you
make an investment decision....

Good luck.