Hi David,

I'm not in your area, but some others are that read this NG and I'm sure
will come on and give you some ideas.  You might take a look at this web
site and watch the vidio.    

http://www.or-live.com/massgeneral/1100/index.cfm

Good luck,

Dale J.

David:
   Welcome to the group.  I am in North Carolina, so I cannot help you with
surgeons in the Boston area, but be sure to ask about the "nerve sparing"
surgery.  Also do your homework before seeing the surgeon.  There are a lot
of alternative treatments to be considered, although some may be ruled out
with your stats.  By the way, I was a T1c, Gleason 6 from the biopsy, but
the final path report graded it a 5.  I had the nerve sparing surgery August
1, 2003, and am still incontinent of urine and impotent.  The former is more
worrisome because most guys get over that in three months or so.  The latter
can take as long as four years for the nerves to recover.  As you get to
know the people here I think you will find that there are many different
combinations of experience in recovery, as well as the discomfort
encountered after surgery.  Age does not seem to be a controlling factor.  I
am 56 but there are guys in their 70's that had no long term loss of
control, and they have erections without having to take Viagra.  Everyone is
different.
   Look for other threads from newly diagnosed patients to see the web
sites, like phoenix5, where you can get information.  I am sure others will
chime in here with suggestions.
   Good luck to you.  As you have questions this is a good place to come to
ask.  Although most of us are not doctors, there are a few that occasionally
chime in here.
   Thank you.
David S.

Wherever you decide to be treated, you should ask about success rates at
avoiding recurrence and the frequency of side effects such as
incontinence and impotence.   Your questions should be specifically
about cases like yours since results can vary significantly for
different diagnoses and different ages of patients.

Many of us have found Patrick Walsh's Guide to Surviving Prostate Cancer
a good source of information.   He is the surgeon who invented the nerve
sparing technique.   However, at least some urologists associated with
Harvard and its associated hospitals have cast doubt on how successful
nerve sparing surgery is.   Walsh has a response to this at his website
at Johns Hopkins.   My personal opinion is that the Harvard doctors just
weren't as good at the procedure as Walsh and some others.   I only
mention this because if you mention Walsh to your local doctors, they
may tell you not to pay attention to what he says.

With Gleason 7 and PSA 18, I'm wondering if T1c is accurate.

My understanding is that T1 means there is no palpable tumor,
i.e., in the digital rectal exam, no tumor is felt.

I was examined by two doctors, neither of whom felt a tumor,
then by two others who did a more thorough DRE and found it,
causing me to be "upstaged" to T2.  I had Gleason 7 with PSA
of 10.7 at its high point.

Many of the people in this newsgroup chose surgery as the
preferred treatment, and Patrick Walsh, one of the greatest
international experts and author of a definitive book is also
a surgeon and recommends surgery in most cases.

However radiation is also a viable option.  Since you are
going for second opinions (an excellent idea) you might get
one (or a third opinion) from a radiation oncologist.  There
is much debate about all this, but it is my layperson's
understanding that radiation may be a better treatment if the
cancer has spread outside the prostate capsule itself -
something which may possibly have happened with Gleason 7
and PSA 18.  In the majority of cases, the spread is thought to
be just within the 4 millimeters of tissue surrounding the
prostate, where it can be dealt with by radiation.

Whatever treatment you choose, I wish you a good outcome.
Cancer is a horrible diagnosis and none of the treatments are
guaranteed either to cure you or not hurt you in other ways.
But with modern treatment methods, it appears that the majority
of patients are overcoming the cancer.

Best of luck to you.

  Alan

Comment 1:  We needed another 'Dave' like we needed a hole in the head.

Welcome to the NG, and sorry you've joined the club.

I cannot account for surgeons in or near Boston, but I'm sure you'll get
several responses about that.

My uro told me that with the CAT and bone scans that I took, at PET was
unecessary as it would tell him the same thing.  My sister vehemently
disagrees (she works in a PET center), but then she's a secretary and my uro
is a doctor.  The doc won out.

A second opinion is a great idea.  Not so much for diagnosis, but for
Gleason scoring and opinoins regarding options.

Learn everything you can in the next few weeks.  Buy Dr. Patrick Walsh's
book on Prostate Cancer.  Go to www.phoenix5.org.  Read both intently.

And, by all means, ask us questions.  Many times we even give the same
answers.

Hi David...Sorry to read that your joining the outfit.  It was about a
year ago that they were running tests on me. After the biopsy
procedure, my uro told me he was 95% sure I was OK.  When he called
with the results I felt like someone punched me in the stomach.  After
a few days of "why me", I got on with dealing with the disease.  I was
57, 5% PCa in 1 of 10 cores, GS 2+3.  Initially I had no idea what
this meant and just figured "I had cancer, the end was in sight."  As
I began to learn about the disease, I realized that these stats were
pretty good and if you have to have cancer, there are many varieties
that are a lot worse.

Treatment selection is highly dependent upon your age, general health
and stats, like PSA, GS, number of biopsy needles with PCa, % of
needle with PCa, etc.  Collect as much of this information as you can
and start a log.  Get copies of all reports, etc. that your docs
receive.

Regarding your Gleason score, it is relatively difficult to grade PCa
due to the diffuse, multifocal nature of most PCa tumors; there's not
one big solid tumor to examine.  It becomes even more difficult when
all you have to examine are small biopsy fragments.  That's one of the
reasons that PCa biopsy slides should be examined by an expert PCa
pathologist (there are roughly a dozen or so around the US), see

http://www.prostate-help.org/cagleex.htm

for a listing.  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.  In turn,
the GS from the pathologic specimen often comes in higher.  In other
words, sometimes people pick the wrong treatment method because their
tumor GS was under-graded.  It would probably be worth having your
slides reread by an expert since so much hinges upon the GS.
Insurance often covers this re-reading.  BTW, if you are taking any
hormonal medications (Propecia, for example), it is important to let
the pathologist know this as there is some data to suggest that
changes in hormonal levels can affect Gleason grading.

It's also worthwhile to determine your baseline PSA.  Have you had
previous measurements?  Does 18 seem correct to you?  Having your doc
put you on cipro and then having the PSA remeasured would help
determine if your current reading is really accurate.

As to treatment selection it depends on how you weight life extension
and quality of life issues.  By the way, when I talk about QOL issues
I include psychological factors (some men just want the cancer "out"
of their body or they want the prostate to be pathologically examined
and therefore favor surgery, others could care less) along with ED,
incontinence and the other associated morbidities.  Focusing on life
extension for a moment, to my knowledge, only RRP, EBRT and SI+EBRT
have been practiced long enough in the same manner to allow
publication of statistically projected rates for biochemical freedom
from recurrence of disease at 10 years post treatment.  Walsh's
biochemical disease-free rate for GS=6, PSA=4-10 and T1c is 95% at 10
years post-op (M. Han, A. W. Partin, M. Zahurak, S. Piantadosi, J.
Epstein and P. C. Walsh; J. Urol., 169, 517-523, 2003).  The RCOG
SI+EBRT number is broken down differently, but seems comparable (F.
Critz, W. Williams, A. Levinson, J. Benton, F. Schnell, C.  Holladay,
and P. Shrake; Poster Abstract 692 at the 2003 AUA meeting; NOTE, this
is a poster, NOT a peer-reviewed publication, caveat emptor).  The
actuarial 10-year biochemical failure-free rate for EBRT was 49% (even
using a more forgiving [ASTRO] definition of failure, A. Zietman, C.
Chung, J. Coen, and W. Shipley; J. Urol., 171, 210-214, 2004).  Since
the "curative" abilities appeared comparable for RP and SI+EBRT for
someone with my stats, I selected surgery over SI+EBRT for QOL
reasons, mainly the psychological ones, but some morbidity data as
well.  If you are a young man, there is some concern about significant
bladder cancer developing in the 10-20 post-RT timeframe.  Let me also
add that, IMO, as you move above GS6 or if the PSA>10, or you are T2,
then radiation therapies may be more effective since their effect can
extend a bit beyond the prostate and hopefully eliminate any PCa cells
that may have escaped the prostate to an adjoining area.

In my opinion, surgery is a viable choice only when the odds are that
you'll get ALL the cancer (see Partin Tables to determine the odds and
again you'll see why the GS is so important).  It is pretty well
documented that if the cancer has spread beyond the prostate and you
remove the prostate, the other PCa locations will begin to grow (there
is some disagreement as to why this happens, but general agreement
that it does happen).  For cases were the PCa has already
metastasized, hormone therapy / chemotherapy offer alternatives.

Learn what you can about the disease so that you can make an informed
decision about your treatment.  Books by doctors Walsh ("Dr. Patrick
Walsh's Guide to Surviving Prostate Cancer") and Strum ("A Primer on
Prostate Cancer") are good places to start, be sure to get the most
recent editions.  Between these two books you'll get a balanced
perspective on all of the available treatment modalities.  There are
many web sites with loads of useful information, as well as discussion
groups.  Two of my favorites (but there are many others) are

http://www.prostate-help.org/
http://psa-rising.com/

Best wishes and good health!..Ron

Dx 12/20/02 at age 57, generally good health, no family history of
PCa, no symptoms, negative DRE; GS=2+3, 3+3 (Epstein); bPSA=6.3,
fPSA=16%; T1c; RRP 02/13/03 (it wasn't a Friday!), pGS=3+2; most
recent PSA undetectable (<0.04 ng/ml)

On 12/26/03, DavidM. Hall wrote:

I would like recommendations for surgeons and facilities in

Hello David -
You've already been welcomed to 'the club' by others, and I extend my welcome
and sympathies as well.  Permit me, also, to recommend reading Dr. Walsh's
Guide To Surviving Prostate Cancer, for it is a wealth of information on
surgery.  

I too am 'newly diagnosed' (October 27), and, after several DRE's, two
surgeons, and two biopsies, have chosen to have an RP (radical prostatectormy).
Your choice of treatment should be made on several factors, such as your PSA,
Gleason score, staging, your age, and your final choice of physician and his
recommendation(s).

I am also in the Boston area - I'm having my surgery at Mass. General on
January 7.

By all means, get a second, and even a 3rd opinion (if you can afford it,
and/or you are insured, and insurance will cover the 3rd office visit).  I was
originally 'content' with my initial diagnosis, but at the urging of the great
participants on this newsgroup, and my family and friends (and common sense),
I'm glad I did, for I found who I believe is the right surgeon "for me".

Since I have not yet had my surgery, I am hesitant to recommend any particular
surgeon in the Boston area.  I will tell you I have personally been seen by Dr.
Solomon Berg at Harvard Vanguard (Kenmore Square), and Drs. Niall Heney and
Douglas Dahl at Mass. General.  Highly recommended to me by another participant
here on the board was Dr. Richie at Brigham and Women's, but I chose 'my'
surgeon before my appointment with Dr. Richie took place.

You've come to the right place for information and support - there are some
incredibly knowledgeable people here on this board!

Good luck with your upcoming procedures - and keep us posted on your progress,
and your choices.

Rus
Massachusetts

The surgeon who did mine two years ago is now in the Boston area.   I
recommend him highly.   His name is Martin Sanda.  He just started this
month as director of a prostate cancer clinic at Harvard's medical
school.    I can't remember the name of the place offhand.  

I am not at home right now where I have all of his information, but will
try to remember to e-mail you with his new phone number, etc.  before I
take off for some holiday travel in a few hours.  After tomorrow I will
be accessible by e-mail in case you have any questions.  

I consider myself fortunate to have had my RRP done by one of the best
ones.   I believe he learned the nerve-sparing technique under Walsh at
Johns Hopkins.    

My own cancer was a T1c, Gleason 7, but my PSA was less than 5.  I was
53 at the time of surgery.  

JohnG

You should also look into laproscopic surgery but be sure you go to a
doctor who does many of them. There is french doctor who invented this
procedure practicing at Sloan Kettering in NYC. There is also a robotic
surgery about which I don't know much.

Good luck     Al

David,

Sorry to hear that you've joined our club.

I had an LRP at Mass General last summer, performed by Dr. Dahl.  One of the
prior replies had a link to a site that has a webcast of Dr. Dahl doing an
LRP procedure.  The webast was done about a week after mine, so it was of
particular interest to me.  There's lots of good information in it about
this particular procedure and if you're into the details, you should take
the time to watch after reading Dr. Walsh's description of the normal RRP
procedure.  It gives you a great idea of what actually occurs during the
surgery.  I wish that I'd seen it BEFORE I had mine done.

I was very happy with both Dr. Dahl and the procedure and the results.
Recovery was fast, pain was minimal and I had almost 100% continence almost
immediately after the catheter was removed, but of course your milage may
vary.  I wish the story on the potency front was as positive, but we're
still working on that.  There's some movement on that front, and most people
who had nerve sparing surgury report that it takes as long as two years to
get things back in working order, so I'm still optimistic.

There is a reasonably large Urology group at Mass General, with Dr. Dahl
doing Laparoscopic procedures, and other doctors doing the traditional RRP
procedure.  They are well thought of in the area and I would recommend them.

As others have mentioned, you should do some research.  Surgery is not the
only treatment alternative.  It was the one that I chose and I'm quite happy
with it, but others have been equally comfortable with the various forms of
radiation.  This is a life changing event and you need to balance the
options to see what you are most comfortable with.

Best of luck and please stay connected to this group.  This is a very good
source of information and support in this difficult and traumatic moment in
your life.

Regards,
Dave

Hi David,

   I'm from Virginia and I made the trip up to Baltimore to Johns Hopkins.
I have not regretted making the trip. The surgeon was excellent, the care
after was too. Wherever you go, and whatever treatment you choose, I wish a
good outcome.

Ron in VA
PSA 4.1
Gleason 3+3
T1c
RP in May 2003, last PSA <.01