I think it's kinda hard for them to know what will be entailed until
they get in there and see.

I think nerve sparing means they don't just cut through everything and
to hell with it.  I think it means they try to save the nerves where
possible.

What you say is true. They don't know what is going to happen until they get
in there. They also don't know how you will or won't recover. What I wish
had happened is that someone had been more frank about the fact that 100% of
the nerves might not be spared. I was shocked and quite upset to find out in
the post op consultation that they had chopped away at them and removed a
portion. To me, nerve sparing implies that no portion would be removed.

Nick

Canada.

The surgeon told me I would be incontinent for life. I will never be safely
dry. So, Depend's has a customer for life. (I'm only 45). As for the
impotence, I was told not to expect anything for at least 6 months even with
Viagra. Right now, I'm on a therapeutic dose for "rehabilitative" purposes.
25mg six nights a week and 100 mg. on the seventh night. No effect yet and
I've been on it for almost 4 months.

Nick

Exactly. They try. That is what should be communicated to the patient BEFORE
the surgery. He shouldn't find out after the fact that the nerves weren't
spared.

Nick

<snip>

Ouch! A new side effect of prostate cancer treatment!

Ummm...what is it I'm supposed to masturbate with? I leak all over when I
try to and there isn't any erection so...... It is a total disaster. Maybe
I'm just "incompetent"? LOL!!! I know what you meant....

If I were in my late 60's +, I might agree with you (or not). I'm only 45
and can't possibly see things that way.

Nick

<snip>

You know, I've been following this thread and debating whether or not to
jump in. I know that my Urologist (trained by Walsh at JHU) discussed this
very issue with me prior to surgery. I can remember him saying words to the
effect that every effort would be made to save the nerves, but it might not
be possible if the cancer had affected them. He discussed many other things,
as well, most of which I probably couldn't have recounted explicitly 30
minutes after the conference (I was a little nervous and still in some
shock).

But that was not too critical, and I had a second set of ears, my wife,
there also. Well before then, at the DRE visit and before the biopsy, he
strongly suggested I get and read Walsh's Guide to Surviving Prostate
Cancer. I think he could tell pretty much from the DRE that we had a
problem. I took his advice and got the book...and read it. I'm convinced
that my Urologist, in that pre-surgery conference, did not and probably
could not have covered everything that I had learned from my own research up
to that point, from Walsh and others.

I don't mean to dispute the contention that a physician should "shoot
straight" with his patient prior to treatment about the things the patient
should know. But the good people in this group, especially I.P., have always
stressed the importance of PCa patients getting themselves as fully informed
as possible about treatment options and potential side effects *prior* to
opting for a specific treatment...or no treatment at all. I think Nick's
unfortunate experience should reinforce this for everyone newly-diagnosed.

I had already known of the limitations of "nerve sparing," the possibilty of
banking sperm, the odds of impotence and incontinence, and many other facts
prior to deciding on having surgery in 2004. I was fortunate to find a local
Man-to-Man support group before making a decision, as well. Shortly after my
surgery, I found this group and a wealth of information and support.

So, if there is at least one thing a physician could and should do, is to
point his patient to some quality research material on the subject. It is
much easier to digest and retain material absorbed at one's own pace than to
remember everything said in the doctor's office in the course of 30-45
minutes.

Sorry to be so long-winded for my meager $.02 worth.

<snip>

You know, I've been following this thread and debating whether or not to
jump in. I know that my Urologist (trained by Walsh at JHU) discussed this
very issue with me prior to surgery. I can remember him saying words to the
effect that every effort would be made to save the nerves, but it might not
be possible if the cancer had affected them. He discussed many other things,
as well, most of which I probably couldn't have recounted explicitly 30
minutes after the conference (I was a little nervous and still in some
shock).

But that was not too critical, and I had a second set of ears, my wife,
there also. Well before then, at the DRE visit and before the biopsy, he
strongly suggested I get and read Walsh's Guide to Surviving Prostate
Cancer. I think he could tell pretty much from the DRE that we had a
problem. I took his advice and got the book...and read it. I'm convinced
that my Urologist, in that pre-surgery conference, did not and probably
could not have covered everything that I had learned from my own research up
to that point, from Walsh and others.

I don't mean to dispute the contention that a physician should "shoot
straight" with his patient prior to treatment about the things the patient
should know. But the good people in this group, especially I.P., have always
stressed the importance of PCa patients getting themselves as fully informed
as possible about treatment options and potential side effects *prior* to
opting for a specific treatment...or no treatment at all. I think Nick's
unfortunate experience should reinforce this for everyone newly-diagnosed.

I had already known of the limitations of "nerve sparing," the possibilty of
banking sperm, the odds of impotence and incontinence, and many other facts
prior to deciding on having surgery in 2004. I was fortunate to find a local
Man-to-Man support group before making a decision, as well. Shortly after my
surgery, I found this group and a wealth of information and support.

So, if there is at least one thing a physician could and should do, is to
point his patient to some quality research material on the subject. It is
much easier to digest and retain material absorbed at one's own pace than to
remember everything said in the doctor's office in the course of 30-45
minutes.

Sorry to be so long-winded for my meager $.02 worth.

John Loomis said:

"I have heard saving the nerves on the prostate which is where they are
located is like trying to lift wet toilet paper up with tweezers......
They are very difficult to see, and especially if blood is present, they
need to be lifted off the "orange" so to speak like wet toilet
paper.......very fragile.
I lost one whole side of nerves......"

True...which is why I mentioned that if they are stretched or squished a
little...even though they are 'spared'...they may take a long time to
heal if they ever do.

Now, that said...I'm amazed at guys who have some function back in a few
months.

I think of it as...their nerves must have come off easily and weren't
damaged all that much.

Ron B.

Chicago

On Jul 16, 11:36 am, "NB" <Some...@somewhere.com> wrote:

My uro trained at Hopkins and did the nerve sparing surgery.  What he
explained to me afterwards was that in some patients the nerves just
kind of peel off whereas in my case that did not happen.  He did what
he could, but in the end I am profoundly impotent and the pills do
nothing.  I also came out of this surgery incontinent and no one yet
has explained to me why.  I suspect nerve involvement there also.  My
surgery was in 2003 so at this point there is no chance of recovery
from either side effect.  But at four months you have a long way to
go.  Do the kegels if you want.  That may or may not make a difference
with the incontinence.  I am of the school that does not have much
confidence in them, but if you do not do the exercises then you will
never know if it could have helped you or not.

N>> From all of the replies and from reading about other people's
experiences..... It seems that no two guys have the same recovery path. Some
do just fine and are back to more or less normal within 3 to 6 months.
Others take years and some never get back to where they were beforehand. I
realize that it has only been 4 months for me, so I will attempt to have
some patience but as most of you can imagine, easier said than done.

On the surgeons' failure to be more specific on the side effects, I am
convinced that they are afraid that men will just take their chances
with the cancer rather than face life with either of the side
effects.  Going in I knew of several men that had the surgery and all
but one came out of it fine after six months to a year.  My coworker's
father was in his 60's and he was dry but impotent.  So my
expectations were that I would be okay after a period of healing.  At
the time most of the guys here that had incontinence said it took
about three months for them to get back to normal.  More had impotence
problems, but then again there were guys that claimed to have
erections with the catheter still in (ouch!).  I agree though that it
would be better if the doctors were more frank about what could happen
and, as one man here suggested a long time ago, that they share with
the patient their personal "batting average" with their patients.  It
would be comforting to know up front that your surgeon had a 90%
success rate with his or her patients maintaining potency x period of
time after the surgery.  But then again, maybe NONE OF THEM can
honestly report numbers like that.

N>> I fully agree with what you said above.

Just hope your son can take a pill or get a shot to cure his prostate
cancer one day in the future.  For now we are stuck with trying to
research the alternatives and make a decision, and then live with the
outcome.

Good luck to you Nick.

N>> Thanks for the good wishes. Unfortunately, I don't have a son and now
will never have children. It is yet another thing on my mind. Same thing for
finding someone to spend my life with. Who wants to put up with this???

Take care,

Nick

My surgeon says I'm one of his first incontinent pts in several years,
expected me to be dry, and has no idea why I'm ...

I.P. Freely