Hi Kenn:

Sorry about the news. I too was 53 when diagnosed. I'm 55 now and all is
well so far. I went the robotic way for my procedure, but in no way
should you decide that this is correct for you by my experience or
anyone else for that matter. I would recommend that you start a cram
course in reading a few books. I do recommend Dr.Peter Scardino of
Memorial Sloan-Kettering "The Prostate", Dr. Patrick Walsh's book "A
Guide To Surviving Prostate Cancer" as well as Dr. Stephen Strum "A
Primer on Prostate Cancer, The Empowered Patient's Guide" as starters.
There are others as well by Dr. Paul H Lange "Prostate Cancer for
Dummies" that I found informative too.
As far as your boss not asking about how you feel, you'll find, as I
did, some fair weather friends and acquaintances along the road. Do not
let them muddle your thinking at this time. Study, read, get treated,
and get on with your life.

B.A.

Hi, Kenn!  Welcome to the club no one ever willingly applied for.  I am
going to respond in truncated text.  As I do, keep in mind that I am a PCa
survivor (so far) and no where near a doctor.

Also, you will get other responses here.  On specific points, there may be
some disagreement, but we all agree that you need to spend a whole lot of
time researching the disease and treatment options and finally come down to
a decision you are willing to live with the rest of your (hopefully long)
life.

You have to remember that most surgeons believe in surgery, else they would
not be surgeons.  Conversely, radiologists believe in radiology.  Would you
want to be treated by a man or woman who did not believe in what he/she
does?  That said, the medical community generally agrees that men under 50
should have surgery if the cancer has not escaped the organ and that, the
closer you are to 50, the more you should be looking in that direction.

Personnally, if I had a PSA 6 and T1c at 53 years old, I'd opt for RLRP.  As
was I 46 and there was no other real choice in 2000, I had RRP.  There are
good arguments for either and, in the end, ther probbly is not much
difference.  However, radiation treatment is also an option for a 53 year
old, especially one with 12 of 12 needles full of cancer.

Fear of surgery should not enter into the equation.  Like I said, I had RRP.
I was scared.  It turned out to be a big zero.  I've had worse sprains.

Yes, they are.  I ended up undergoing RRP, then RT and now HT and can tell
you that the side effects of the first was not as bad as the second; and the
second not as bad as of the third.

Addressed above.  It is almost unfair to expect it.

Addressed above.  We will point you it he general directions of issues, but
to be satisfied with your decision, you will have to research, research,
research.

You will, regardless of which treatment, find a temporary reduction in
potentcy and continencs.

RLRP might be your best bet.  You can be back your desk in a week (and
probably be at 60%).  With RRP, it took me six weeks before my doc let me
back with restricted status and another two before I was cleared for full
status.  Radiation is probably better for getting back to work, but I would
never consider that a primary issue.

Oh, and one month after coming back to work, I went into a stressful
situation, ended up on a worse position for stress, culminating in 2004
where I worked without a vacation or time off PLUS 550 hours overtime.
During this period, I also survived radiation treatment and hormone
treatment.  You'll be fine.

You'll get past this without having made the biggest mistake of your life.
All you have to do is research.

  I'm now57, and 4 years post surgery here.  I'm in the NYC area too Ken so
here's my response to your concerns.  Your life will not ever be the same
again. Surgery or rads are both designed to eliminate your prostate
completely. If you're lucky, the cancer will go as well.  Either way will
have some side effects, but both will render you completely without semen
forever. There's also a chance of erectile dysfunction, or dependency on
Viagra drugs.
  The good news is that you have been diagnosed, and you're being
pro-active about it. The decision for treatment choice is one we've all
faced. Stats seem to say they have the same outcomes 10 years down the road.
It may be as simple as finding the right doc.  When I met my surgeon, I knew
he was the guy for me.
   I choose traditional surgery with a young superstar, chief onc surgeon
at Northshore, also a top rated venue which is important.  I liked the idea
of having my experienced guy open the entire area up for his personal
viewing and testing, and having it OUT OUT OUT.  When it was over and he
told me what he saw, and that I was "probably" cured, it was what I wanted
to hear.
   Rads also can work well, but it can carry side effects to the
surrrounding organs that I was afraid of.
   After 4 years I have fairly normal sex with dry orgasms, and use Viagra
type drugs for help as well. Life is good. As for your boss, this is
something he will need to be educated about for everyones sake. You'll need
some time off, my guess is probably 2 weeks if you choose sugery, but for
gods sake don't choose a treament based on him. Feel free to contact me,
(webpages below), or call if you want any further advice. Remember, it's not
a death sentence, but definitely a life changer.

(snip)

The anecdotal experiences of others should not be considered as anything
more than interesting stories. What works for patient A might not work
for patient B. Everyone is different.

Side effects (SEs) are important considerations, but all treatments
(txs) have side effects. Some experience few SEs, others many, and the
degree varies.

There is no one-size-fits-all solution to this dilemma.

For objective information I strongly recommend the authoritative website
of the Prostate Cancer Research Institute at:
http://prostate-cancer.org/index.html
Check the section "Newly Diagnosed."

Lastly, the Gleason score (expressed as x + y = z, not as a single sum)
is vitaI. Everything that is done from here on depends upon the accuracy
and reliability of the Gleason score. I recommend having the biopsy
specimens examined by a specialist pathology lab. This "second opinion"
costs ~$350 and is commonly covered by insurance.

The labs are:

Bostwick Laboratories, David Bostwick [800] 214-6628
Dianon Laboratories 1 [800] 328-2666 (select 5 for client services)
Jon Epstein (Hopkins) [410] 955-5043 or [410] 955-2162 (Dr. Epstein does
not do ploidy analysis)
David Grignon (Michigan) 313-745-2520
Jon Oppenheimer (Tennessee)  [888] 868-7522  
UroCor, Inc. 1 [800] 411-1839

The Gleason score may or may not change, but I consider this cross-check
to be insurance. Anecdotally, Bostwick supplied very interesting
information on my last biopsy that was not included in the local lab's
report.

The uro undoubtedly knows about the labs but will probably not disclose
that information unless asked.

Quite simply, this is war.

Good luck.

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."

Dear Kenn,

First of all, I'm sorry about your diagnosis.  My husband was about the
same age as you when diagnosed and it is a stunning blow to get this
news when you're so young -- or at any age -- but a lot of men in this
"club" are of your vintage.  The good news is that your numbers are
decent.  I consider anything below a GL 7 to be good.  Wish my husb.
had a G6.

I live in NYC and have probably been to some of the same docs as you.
I have been "advt'g" the services of Dr. Samadi recently because he and
his "team", which includes an expert on "sexual function",will do
everything possible to help you retain your sex life.  Of course I am
saying this on the assumption that he is also a competent surgeon who
has a lot of experience with RP.  He's also a nice guy.

Also, it's just my own opinion from living here for so long and hearing
things from people that Columbia is the best hospital around.

I think the most important thing is to find a doctor who doesn't "cut
and run."  So you should ask any doctor what do they do in the way of
followup on QOL issues.

Also as far as the "team" approach I have heard only great things about
Dr. John Eastham of Sloan Kettering.

You are right to be concerned about this issue.  My husband had RLRP
and is doing very well overall a year later.  He is just a bit older
than you.  The problem I have with RLRP is that it is oversold and
people are not told of the alternatives so that they cannot really make
an informed choice.  After he diagnosed my husband, our uro mentioned
the name of 2 robotic surgeons and said this was definitely the way to
go.  He didn't even mention any other alternative.  Frankly, he made it
sound like RLRP was like getting your tonsils out.  Just because
something is high tech doesn't necessarily make it superior.

I recommend Dr. Samadi and Dr. Eastham who are RLRP surgeons but I
strongly suggest you consult at least one open surgeon.  This was
something we didn't do and this is my biggest regret about the whole
treatment.  But my husband was a GL 7 and I think that's one reason I
would have done that.  But I still think it's a good idea.  For one
thing, a lot of these open surgeons have been doing this work for 40+
yrs. and they develop a "feel" for the disease.  I find some value in
that.  The robotic folks are very smart but they haven't been in
business nearly as long.  In NY some of the top open surgeons are
Herbert Lepor, ?? Kirschenbaum and Dr. Dillon (the choice of my own
internist who is the best in the world).

I remember making an appointment with some of these guys even tho they
did not accept his insurance because I thought the outlay was well
worth it.  But as it turned out we bonded with the second RP and blew
off this last consult.

The most important thing is getting rid of the cancer and there is a
diff. of opinion on which type of surgery works better.  Minimally
invasive surgery has not been around that long so they don't know how
it compares in effectiveness with open surgery.

You have already been recommended a number of books but my favorite is
"The Prostate Book" by Dr. Peter Scardino.

At the moment you just have to concentrate on getting the best
treatment and you have to block out any thoughts of  the boss for the
moment.  Your situation doesn't sound pleasant but my husb's was even
worse.  He had just started a job as consultant and had been there only
one month when he was diagnosed.  Luckily his bosses were very tolerant
of his absences, but technically he was not entitled to any sick leave.
It sounds like your boss is not the friendliest guy but that you're
job is not in any danger.  That's something.  BTW, my husband was back
at work in 2 weeks.

How much Ambien are you taking.  You should take at least 10 mg. or
more.  Ambien is a good drug in certain situations and you should take
it rather than be lying awake sleepless at night.  Ask your doctor
about the dose.

Maybe you should talk to some people who've been treated for pca.  My
husband would be happy to talk to you about his experience with RLRP.
He felt more relaxed after he had talked to a guy who had the same
thing done.

P.S.  Another thing: when you call to make an appt with a surgeon ask
to be put on his surgical schedule.  Sometimes I was asked this by a
secreatary and I said 'yes" even tho i had not made the final decision.
Take your place "in line."  The worst thing is you'll have to cancel.

Good luck and try to relax.  Most men have a high-quality life after
pca treatment.  In these forums you are more likely to hear from people
who have had problems.  Keep that in mind.

Best of luck to you,

Leah

Kenn, I symphatize with you as I too was recently diagnosed, and have
not decided on my treatment path.  I hope that with our research and
experienced of those ahead of us, we can make a decision that we can
live with. I think the most important thing I can think of at this
point about your situation (and mine) is to: ENJOY YOUR LIFE and do
what YOU HAVE BEEN DREAMING OF DOING. Don't put it off any much longer.
I am planning to accelerate a few of my goals in life and do that
sooner than later. So, don't let your work be the event that drives
you.  Be thinking of your dreams and start doing and enjoying it, and
that includes sex!

Hello Kenn - I'm a newbie here but some of your questions resonated
with me so I'll tell you what little I know.

Having had only a mini-op 30 years ago, it was just such a fear which
had me dragging my heels for a while, but after over 2 years of WW I
finally had an LRP 2 weeks ago. The procedure itself is a
cakewalk...you're eased unknowingly into a deep sleep and in what
seems to be the next instant you're in a care-unit wallowing in a
delicious morphine drenched drowsiness.  The euphoria that comes of
having 'it' behind you will be all you need to power you through the
recovery period. The abdomen's tender and the catheter's a nuisance
but at no time was I too uncomfortable to read or sleep with the help
of occasional household pain-killers.

The cognoscenti here will shoot me down for such a gross
over-simplification, but my reading of others' posts here have
persuaded me that RT offers better short term prospects for potency.
Personally, I was more anxious to avoid collateral damage to the bowel
arising from RT - even though the risk is apparently small - than to
optimise my sexual future...but it was a very close call and finally
clinched by a long-standing peeing difficulty which I felt might be
exacerbated by RT.  

Sadly no one will employ me these days, but aside from 5-10%
incontinence (standing only and invisible to all) and the odd bladder
and abdominal twinge - I feel fully back to normal at 2 weeks.

I would guess you to be very low risk on that score.

Read several PC books, including Walsh, Scardino, Strum (Amazon; it's
tough to find in local bookstores)), Bubley, Lange ("Dummies"), and
Sheldon. Only then will you be qualified, and more important, EDUCATED
enough to choose a treatment. The choice is too personal to be made by a
doctor who hasn't been your closest friend since second grade. By the
time you're read those books a clear choice will very likely emerge. I
suspect that only that level of involvement is capable of enabling most
of us to avoid second guessing when anything goes wrong months or years
down the road. And don't sweat 25 years; your goal is to remain PC-free
for a decade.

Surgery itself is a speed bump you get to sleep through, triple hormone
treatment adds more side effects than benefits, and unless something new
proves otherwise, seeds add little benefit to EBRT.

And you must have one FABULOUS, world-class, earth-shaking,
irreplaceable, mind-altering career to care more about what your boss
thinks about your job attendance than about your current agony and the
rest of your life. Sounds like both you and he need to do at least three
things: 1) decide what's more important, your life or some specific
stupid job, 2) learn to delegate more authority and responsibility, and
3) inform the whole company and see what they think of this (apparent)
tyrant.

Some of my "office buds" had what they considered to be the most
FABULOUS, world-class, earth-shaking, irreplaceable, mind-altering
careers on the planet, but they still took vacations, fer gosh's sake,
when they weren't working 18/7. Even THEY had backup, and I'll bet your
job is just that . . . a freaking JOB . . . by comparison.

They were search and rescue chopper pilots in Viet Nam.

I can't imagine many/any lesser jobs worth "I have a lot of
responsibility, a ton of stress, and no love life, and no one can
readily cover for me as the owner made clear to me." Even brain surgeons
can get vacations if they choose to.

The economy is BOOMING; Once through this little cancer hassle, go find
a boss and company who give a damn about YOU. Life's too short, as you
now know, to work for a.sholes, even if they're paying us a fortune. My
boss got angry when my broken back forced me to work in bed for a few
weeks. Not long after it healed, I informed him one day that I no longer
worked here, that next week I was being transferred 700 miles away to a
far superior job. Think that was easy to achieve, considering that he
was a colonel and I was a major? Better yet, I was able to stymie HIS
subsequent transfer to that same place.

NO PC treatment will improve your sexual function; most threaten it
significantly. But terminal PC threatens it even more, so we get over it
 and get on with treatment. Put some sperm in the bank if you want a
family some day, realize that most cancer treatments don't prevent
orgasms, and make sure every doctor you consult knows your priorities.

Your PC gives you many months to study it and consider the job situation
and many years to reap health and job benefits from your efforts. Take
charge of both.

And if my uninvited "career advice" is truly unrealistic and totally
naive, blow it off and let me know. Until then I believe that most
careers are fairly manageable.

I.P. Freely

Hello Kenn.   Sorry you had to join.  I was 64 when diagnosed, one
year after my hip replacement surgery, 1 month after proposing to
the gal who I married a few months later (she wasn't backing out).
I've been through 3 urologist who lied to me and offered no support.
I was 70 yesterday, and comfortable with an oncologist who listens,
answers questions, offers tons of support and agrees to my
"watchful waiting" attitude (that's probably not a good option for
someone younger then the mid-60s).

Before you agree to any drug treatment, ask the doctor what ALL the
side effects are.  Ask the doctor for the insert that comes with it.

Visit these 2 sites for information on any drug you're interested in:

http://www.rxlist.com

http://www.fda.gov

Well Kenn, for better or worse, here's a couple more cents worth
of advice.

                           Radiation
                           ---------

Radiation can be a first choice because:

1) The docs think the cancer has spread beyond the reach of
   surgery, but not beyond the reach of radiation.

   Your 12 cores indicate that this might possibly be the case,
   but your PSA of 6, T1c, and predominant Gleason 6 indicates
   that it's probably not.  Consult with an expert about this
   however.

2) You are old or in ill health and may have trouble recovering
   from surgery.

   That appears not to be your situation.

I'm guessing therefore that radiation is not clearly a better
option for you than surgery, it may or may not be just as good.

If you do get radiation, you do NOT have to get 1 year of
androgen deprivation therapy.  The radiation oncologist you spoke
to offered you an ultra conservative, damn the torpedoes,
hit-it-with-everything, full speed ahead treatment plan.

In my case I consulted two radiation oncologists.  One strongly
recommended ADT.  The other recommended against it on the grounds
that it has nasty side effects and wasn't proven to improve
success.  I wound up getting a total of four months of ADT.  My
testosterone levels and libido returned after about 6 months (two
months after the Lupron theoretically wore off.)

                            Doctors
                            -------

In my non-expert view, I think the choice of doctors is as
important, and often more important, than the choice of
treatments.

Of the three doctors you've consulted so far, based on what
you've said, I like Dr. Samadi.  It sounds like he has a great
deal of prostate surgery experience (critical in a surgeon),
cares about his patients, and is well recommended by people he's
actually treated.  Your report of the other two doctors was not
nearly as confidence inspiring.

The results of any difficult medical procedure depend
tremendously on the skill, experience, and committment of the
doctor.  This has apparently been proven over and over again in
every field and, in my (still inexpert) view, applies to rad oncs
as well as to surgeons.

So I'm leaning towards LRP with Samadi on that score.

                            Potency
                            -------

No one wants to become impotent, but it is a real possibility
with both surgery and radiation.  In both treatments, I believe
that the skill of the doctor is key to success.

If you are leaning towards Dr. Samadi, discuss this with him.
Ask him how often he is and is not able to spare nerves and ask
him if your 12 positive cores makes nerve sparing unlikely.  I
wouldn't be surprised if the answer is no, i.e., it doesn't mean
he'll have to cut the nerves.  But ask him.  If he's a good
doctor he'll tell you the truth.

However you should know that lack of potency does not mean that
sex is impossible.  The ability to have orgasms is unaffected by
impotence.  Many men here can testify to that.  The nerves that
make orgasm possible are not affected by prostatectomy.

The ability to have erections may or may not be affected.  A lot
depends on the skill of the doctor.  But you should know that
even if you lose that natural ability, there are medical aids
including Viagra, which often works if you've got some potency,
and penile injections, which work for everyone.

And of course oral and manual sex will work no matter what.

                             Jobs
                             ----

Some here have told you to have it out with your boss or quit
your job.  I've found that, surprisingly, getting your way at
work can often be done without confrontation.

I once worked for a software company where everyone put in 50-70
hour weeks for 40 hours pay.  The pressure was enormous.  Then
one day a 23 year old kid who worked on my project told me that,
from now on he would be going home every day at five pm, and that
he would have to take every other Friday off to do some volunteer
work that was important to him.  He said that he liked working
with us, he really didn't want to hurt the company, and he would
understand if we fired him, but that this is what he had to do.
He said that, in a true emergency, he would put in extra time,
but only in a true emergency.

He didn't accuse anyone of maltreatment.  He didn't complain
about the extra hours he had put in in the past, but he didn't
offer to discuss it either.  In the very nicest way, he was
delivering an ultimatum.

I took his statement to management.  They were upset and went to
talk to him, but he stood his ground, telling them how much he
liked his job and how much he would hate to leave, but that it
had to be this way.

Well, he was a valuable guy.  He did a good job.  He worked hard
for the hours he was paid.  They let him have his way.  All of us
were mightily impressed with his calm assurance, his decent
approach to everyone, his maturity.

I learned from him and have used his technique a few times in my
work to stop exploitation and assert my own needs.  It's always
been successful for me.

If you're so valuable that your boss needs you all the time, this
technique might work for you too.

                             Sleep
                             -----

You can bet that almost all of us lost a lot of sleep after our
diagnosis.  I sure did.  But I never found drugs or alcohol to be
of help.

What helped for me was coming to terms with what was happening to
me.  First of all I came to terms with the fact that I am mortal
and I'm going to die someday.  Prostate cancer just happened to
be the first real, direct, view of how and when it could happen.
I didn't like it.  I still don't like it.  I hope that I've got
my cancer beaten, but I know that if it doesn't get me something
else will and I only have a certain number of years left no
matter what.

I decided what I liked even less than dying was anxiety, fear and
despair.  Life can be so good.  There are wonderful things to see
and hear.  There are neat things to learn.  There are wonderful
people to be with.  There are worthwhile things to do.  Cancer
doesn't change any of that.  I'm going to work hard to see that
when I'm near the end and have only a few weeks left I'll still
love listening to my favorite music, still want to read books,
still laugh at funny movies, and still want to do what I can for
my family and friends.

Maybe this bout with cancer is an opportunity for you to get more
control over your life.  Maybe it's a wakeup call that is telling
you that you need to get control over your job, need to set your
own priorities, need to find more in life for yourself.

You can do that.  You can master the anxiety and depression and
replace it with positive feelings towards the life that you still
have, and still will have, no matter what happens to your cancer.

You may need to talk this out - with a friend, with a counselor,
or even just with a diary.  You'll still have some fear and some
sleepless nights, but you don't have to be that way all the time.
It doesn't have to control you.  Life is still here to be lived.

Best of luck.

   Alan