Surprising post-RP incontinence information

I had a urodynamics test yesterday. They monitor bladder pressure, fill
and empty it via catheter, and stress it while full, all while watching
the bladder by continual X-ray and a pressure monitor, in an attempt to
determine the cause of lingering limited post-RP continence. The
urologist and the nurse performing the test each have 20 years’
experience explicitly in analyzing and improving urinary and sexual
performance in post-RP men; both are nationally known. Their
expectations and recommendations included some very surprising and
enlightening comments relevant to many of us and largely contradictory
to what we’re being told, IMO.

The dry guy -- the man who doesn’t permanently need pads after an RP --
is rare, for one simple, obvious reason: half the flow control valves
are gone. Compound that by removal of one or both of the nerve bundles
that control the remaining valve, and we’re lucky to need only a few
pads a day.

“You mean surgeons lie to patients before surgery about our incontinence
odds?”, I asked. “No; patients [lie] to their surgeons *after* surgery”.
She explained that the vast majority of men are far more willing to talk
candidly about post-op performance with a third party -- the sexual and
urinary continence specialist -- than with their surgeon, according to
her experience and many studies. IOW, pts are telling their surgeons,
“Oh, I’m fine. You did good” but then admitting problems only to
subsequent specialist(s). The surgeon chalks up another gold star to his
“dry, hard guy list”, contributes another victory to the party line, and
promulgates the myths we hear after diagnosis.

So what’s the *norm*, the degree of continence we might *expect*, after
a couple of years of healing and Kegels post-RP *if* both nerves are
spared, according to these practicioners’ literature contributions and
research? One to three pads a day, worse if one or both nerve bundles
were involved and removed.

Bummer.

When a man complains to a specialist that he’s extremely incontinent,
such as multiple full diapers daily a year post-op, we know the options:
artificial sphincter or sling. We all know the many risks, from normal
surgical risks to failure to a variety of further plumbing complications
maybe requiring further surgeries; no surprises there. The surprise?
Their target, their optimal outcome, the best they can legitimately hope
for, is … one to three pads a day. IOW, I have no valid complaint. I am
already, and have long been, dryer than most RP pts, even those with two
intact nerve bundles, even after their successful incontinence surgery.

I.E., lower your continence expectations across the board, according to
these published experts.

I asked them about collagen injections. Their simple answer, “Oh, that
doesn’t work for RP patients, period. Too much scar tissue. Not an option.”

Other factoids:

Urine expulsion with ejaculation is normal. The part of the bladder that
restrains urine during ejaculation is removed in an RP.

“RP-enhanced orgasms are unusual but clearly observed. Chalk that up in
the Win column.”

They also said Detrol or other bladder overactivity drugs would be of no
use to anyone without bladder overactivity, and the test revealed that
my bladder activity was normal. One could experiment with Detrol, but
its SEs can be very painful; the test involves no more than a routine
catheterization and some extra Roentgens.

Their eyebrows shot up when I mentioned that on a GOOD night, I won’t
wake up until time to get up, and may void a quart of urine then.
“That’s way too much urine. It over-stretches the bladder.”

Well, excuuuuuuuse me. It’s not like I was deliberately holding it. Any
night I sleep for eight uninterrupted hours also goes in the Win column.

And finally, re Kegels: *DO* them. I asked whether just going about
one’s day -- home, office, yard, gym, sidewalk, etc. -- while staunching
the flow is enough strengthening for the pelvic floor muscles we need.
“Definitely not. Just like any other muscle that needs more strength,
these need specific strength training.” I nodded and vowed to do them by
the book for as long as it takes to know whether I’m wasting my time,
and asked how long that may take. “You should know within about six
diligent weeks whether Kegels will help significantly.” I presume that’s
after full healing, meaning a couple of years post-RP.

I.P. Freely
And apparently that’s the NORM

On Jan 17, 6:20 pm, "I.P. Freely" <fuhgheddabou...@noway.nohow>
wrote...snip...
> The dry guy -- the man who doesn't permanently need pads after an RP --
> is rare

> So what's the *norm*, the degree of continence we might *expect*, after
> a couple of years of healing and Kegels post-RP *if* both nerves are
> spared, according to these practicioners' literature contributions and
> research? One to three pads a day, worse if one or both nerve bundles
> were involved and removed.

I.P...I read what you wrote, but I just can't believe it, dunno what
else to say...ron

ron wrote:

> I.P...I read what you wrote, but I just can't believe it, dunno what
> else to say...ron

I hear you, and was almost equally surprised. But I took careful and
thorough notes, asked questions when surprised or unclear, and had
another set of ears present who confirmed all this point by point. If I
were considering an RP or post-RP incontinence tx, I'd sure do some
further research in this direction.

Maybe adding their names might help to that end. The urologist is C.C.
Yang (very impressive curriculum vitae) of the University of Washington.
The nurse is D.C. Clowers, whose name appears in many incontinence
references.

I.P.

Not sure what to think of the post and such. I do not feel that "That is
the Norm" at least as far as I am concerned. I admit I have a one-sided
view of this matter.......me.
Anyway, I had RP when 49, and did kiegels prior to the surgery.
I lost one set of nerves.
I did not leak when the catheter was pulled.
I did need to be a bit careful at first for about 2 weeks but after that, I
am fine. I admit with a drip here and then after finising, but that is left
over............
Anyway, I must not be a part of the norm, and feel that walking, and running
were a great help with the entire side effects of the surgery. Oh, and I
can and do get great erections, and admit it took 2 years to get
there........I do use about 25% of 100 mgs viagra to really pump it up.
So, I am happy with my outcome and am very sorry for those who have not done
so well.
I had RP 1999.
anyway, wish I had some answers to this problem for all those suffering.
Jloomis
"I.P. Freely" <fuhgheddaboutit@noway.nohow> wrote in message
news:J0Tjj.262$A25.210@newsfe07.lga...
>I had a urodynamics test yesterday. They monitor bladder pressure, fill and
>empty it via catheter, and stress it while full, all while watching the
>bladder by continual X-ray and a pressure monitor, in an attempt to
>determine the cause of lingering limited post-RP continence. The urologist
>and the nurse performing the test each have 20 years’ experience explicitly
>in analyzing and improving urinary and sexual performance in post-RP men;
>both are nationally known. Their expectations and recommendations included
>some very surprising and enlightening comments relevant to many of us and
>largely contradictory to what we’re being told, IMO.
>
> The dry guy -- the man who doesn’t permanently need pads after an RP --
> is rare, for one simple, obvious reason: half the flow control valves are
> gone. Compound that by removal of one or both of the nerve bundles that
> control the remaining valve, and we’re lucky to need only a few pads a
> day.
>
> “You mean surgeons lie to patients before surgery about our incontinence
> odds?”, I asked. “No; patients [lie] to their surgeons *after* surgery”.
> She explained that the vast majority of men are far more willing to talk
> candidly about post-op performance with a third party -- the sexual and
> urinary continence specialist -- than with their surgeon, according to her
> experience and many studies. IOW, pts are telling their surgeons, “Oh, I’m
> fine. You did good” but then admitting problems only to subsequent
> specialist(s). The surgeon chalks up another gold star to his “dry, hard
> guy list”, contributes another victory to the party line, and promulgates
> the myths we hear after diagnosis.
>
> So what’s the *norm*, the degree of continence we might *expect*, after a
> couple of years of healing and Kegels post-RP *if* both nerves are spared,
> according to these practicioners’ literature contributions and research?
> One to three pads a day, worse if one or both nerve bundles were involved
> and removed.
>
> Bummer.
>
> When a man complains to a specialist that he’s extremely incontinent, such
> as multiple full diapers daily a year post-op, we know the options:
> artificial sphincter or sling. We all know the many risks, from normal
> surgical risks to failure to a variety of further plumbing complications
> maybe requiring further surgeries; no surprises there. The surprise? Their
> target, their optimal outcome, the best they can legitimately hope for,
> is … one to three pads a day. IOW, I have no valid complaint. I am
> already, and have long been, dryer than most RP pts, even those with two
> intact nerve bundles, even after their successful incontinence surgery.
>
> I.E., lower your continence expectations across the board, according to
> these published experts.
>
> I asked them about collagen injections. Their simple answer, “Oh, that
> doesn’t work for RP patients, period. Too much scar tissue. Not an
> option.”
>
> Other factoids:
>
> Urine expulsion with ejaculation is normal. The part of the bladder that
> restrains urine during ejaculation is removed in an RP.
>
> “RP-enhanced orgasms are unusual but clearly observed. Chalk that up in
> the Win column.”
>
> They also said Detrol or other bladder overactivity drugs would be of no
> use to anyone without bladder overactivity, and the test revealed that my
> bladder activity was normal. One could experiment with Detrol, but its SEs
> can be very painful; the test involves no more than a routine
> catheterization and some extra Roentgens.
>
> Their eyebrows shot up when I mentioned that on a GOOD night, I won’t wake
> up until time to get up, and may void a quart of urine then. “That’s way
> too much urine. It over-stretches the bladder.”
>
> Well, excuuuuuuuse me. It’s not like I was deliberately holding it. Any
> night I sleep for eight uninterrupted hours also goes in the Win column.
>
> And finally, re Kegels: *DO* them. I asked whether just going about one’s
> day -- home, office, yard, gym, sidewalk, etc. -- while staunching the
> flow is enough strengthening for the pelvic floor muscles we need.
> “Definitely not. Just like any other muscle that needs more strength,
> these need specific strength training.” I nodded and vowed to do them by
> the book for as long as it takes to know whether I’m wasting my time, and
> asked how long that may take. “You should know within about six diligent
> weeks whether Kegels will help significantly.” I presume that’s after full
> healing, meaning a couple of years post-RP.
>
> I.P. Freely
> And apparently that’s the NORM

"jloomis" <jloomis@ocean.net> wrote in message
news:fmp47d02hg7@news4.newsguy.com...
> Not sure what to think of the post and such. I do not feel that "That is
> the Norm" at least as far as I am concerned. I admit I have a one-sided
> view of this matter.......me.
> Anyway, I had RP when 49, and did kiegels prior to the surgery.
> I lost one set of nerves.
> I did not leak when the catheter was pulled.
> I did need to be a bit careful at first for about 2 weeks but after that,
> I am fine. I admit with a drip here and then after finising, but that is
> left over............
> Anyway, I must not be a part of the norm, and feel that walking, and
> running were a great help with the entire side effects of the surgery.
> Oh, and I can and do get great erections, and admit it took 2 years to get
> there........I do use about 25% of 100 mgs viagra to really pump it up.
> So, I am happy with my outcome and am very sorry for those who have not
> done so well.
> I had RP 1999.
> anyway, wish I had some answers to this problem for all those suffering.
> Jloomis

I know this is all anecdotal, but my experience at age 64 was pretty much
the same as John's---even with the one nerve removed. I don't have the
holding power I used to have, but I really don't leak. Of the five men I
spoke to who had surgery done by our local urologist, only one had permanent
incontinence, and he was going to get the surgery for that. Another has a
bit of a problem when he has too much alcohol, but that's about it. It
would be interesting to know what the experiences of the other posters in
the group has been in this regard.

My experience with leakage...

Age 56. Robotic surgery Oct 13, 2007 (3 months ago). Nerves spared. Catheter
out after 9 days. Leaked allot for the first 2 months. Pretty good doing the
Kegels. During the past month, leakage is MUCH less. I use 2 men's size
Kotex type pads/day and they are mostly dry when I change them. I leak more
when doing lifting and twisting or bending.

Erections are not what I would like, but I have hope and glimmers of
success.
Peter
"Claude" <claude@hatesspam.com> wrote in message
news:47902032$0$10946$4c368faf@roadrunner.com...
>
> "jloomis" <jloomis@ocean.net> wrote in message
> news:fmp47d02hg7@news4.newsguy.com...
>> Not sure what to think of the post and such. I do not feel that "That is
>> the Norm" at least as far as I am concerned. I admit I have a one-sided
>> view of this matter.......me.
>> Anyway, I had RP when 49, and did kiegels prior to the surgery.
>> I lost one set of nerves.
>> I did not leak when the catheter was pulled.
>> I did need to be a bit careful at first for about 2 weeks but after that,
>> I am fine. I admit with a drip here and then after finising, but that is
>> left over............
>> Anyway, I must not be a part of the norm, and feel that walking, and
>> running were a great help with the entire side effects of the surgery.
>> Oh, and I can and do get great erections, and admit it took 2 years to
>> get there........I do use about 25% of 100 mgs viagra to really pump it
>> up.
>> So, I am happy with my outcome and am very sorry for those who have not
>> done so well.
>> I had RP 1999.
>> anyway, wish I had some answers to this problem for all those suffering.
>> Jloomis
>
> I know this is all anecdotal, but my experience at age 64 was pretty much
> the same as John's---even with the one nerve removed. I don't have the
> holding power I used to have, but I really don't leak. Of the five men I
> spoke to who had surgery done by our local urologist, only one had
> permanent incontinence, and he was going to get the surgery for that.
> Another has a bit of a problem when he has too much alcohol, but that's
> about it. It would be interesting to know what the experiences of the
> other posters in the group has been in this regard.
>

I'm surprised - incredulous even. I can see why surgeons might want
to put a brighter spin on their success figures re this and that, but
why would a patient not want to admit the extent of any failure to
their surgeon? Bizarre.

Are they stretching the 'norm' to its limit to mean anything >50%?
Even that would surprise me.

Does this apply just to open RP or to the laparascopic styles also?

"I.P. Freely" <fuhgheddaboutit@noway.nohow> wrote in message
news:J0Tjj.262$A25.210@newsfe07.lga...

>I had a urodynamics test yesterday.

<< Snip >>

Thanks a bunch, I.P. This was, IMHO, your greatest contribution to date
(and remember the I was impressed with your early ADT work, so I am not
being sarcastic.).

For the first time in my post operative life, I now know that having to use
a pad just in case makes me awful lucky considering I lost an entire
prostate, including both nerves. While it doesn't help the fact, it
certainly makes me feel better about it somehow.

I'm also one of those that is surprised by I.P.'s report. I had LRP 4 1/2
years ago with one nerve bundle spared. I was using pads for about 3 1/2
mos. Haven't needed anything since. I just had an ultra-sound of the
bladder and kidneys Tuesday and drank 32 oz. of water one hour prior and
didn't leak with it. Looks like a lot of use here are exceptions to the
norm.

Ron S.


--
Message posted using http://www.talkaboutsupport.com/grou...ncer.prostate/
More information at http://www.talkaboutsupport.com/faq.html

ron wrote:
> On Jan 17, 6:20 pm, "I.P. Freely" <fuhgheddabou...@noway.nohow>
> wrote...snip...
>> The dry guy -- the man who doesn't permanently need pads after an RP --
>> is rare
>
>> So what's the *norm*, the degree of continence we might *expect*, after
>> a couple of years of healing and Kegels post-RP *if* both nerves are
>> spared, according to these practicioners' literature contributions and
>> research? One to three pads a day, worse if one or both nerve bundles
>> were involved and removed.
>
> I.P...I read what you wrote, but I just can't believe it, dunno what
> else to say...ron

I also don't believe that almost all men permanently need pads after RP.

First note that people who treat men for incontinence after RP see a
biased sample. Second, there are independent studies of quality of
life issues. For example, I was referred by my urologist to such a
study at Evanston Hospital. They asked quite penetrating specific
questions, and a man would have to be pretty determined not to admit he
was using pads if he were. Third, not all men are that concerned about
their surgeons' feeling. I tell my doctor every little thing, whether
he is happy about it or not and whether it is significant or not.
Fourth, why in the world would men be more willing to talk about
impotence then they are about incontinence?

I don't use pads except on rare occasions, every few months, when I know
I will not be able to find a bathroom when I need one. That actually
happens less often now, after surgery, than it did before surgery, but
before surgery I would never have thought of the possibility.

rosbif wrote:
> I'm surprised - incredulous even. I can see why surgeons might want
> to put a brighter spin on their success figures re this and that, but
> why would a patient not want to admit the extent of any failure to
> their surgeon? Bizarre.
>
> Are they stretching the 'norm' to its limit to mean anything >50%?
> Even that would surprise me.
>
> Does this apply just to open RP or to the laparascopic styles also?

The usual figures for serious long term incontinence requiring
intervention are something like 2 percent. Long term stress
incontinence is estimated to be a bit higher, 20-30 percent.
Laproscopic surgeons claim greater success in the matter, but I'm not
sure the research backs them up.

>
>
>
>
>
>

On Fri, 18 Jan 2008 06:51:10 -0600, "ronju99"
<jlspane@nospam.verizon.net> wrote:

>I'm also one of those that is surprised by I.P.'s report. I had LRP 4 1/2
>years ago with one nerve bundle spared. I was using pads for about 3 1/2
>mos. Haven't needed anything since. I just had an ultra-sound of the
>bladder and kidneys Tuesday and drank 32 oz. of water one hour prior and
>didn't leak with it. Looks like a lot of use here are exceptions to the
>norm.
>
>Ron S.

I'll add my name to that list. I wore pads for less than two weeks and
did my Kegels and have not had any incotinence issues. The only time I
feel like I may leak is amazingly, if I blow my nose too forcefully..
go figure.

My most pressing SE is periodic bouts of a weak stream, even though I
know my bladders full and that I could put out a four alarm fire.
Sitting helps but I cannot correlate anything to why this comes and
goes....

--
PSA @ 45 yrs. = 4.7 02/06/2007
Biopsy 03/16/2007 G7(3+4),T1c
RLRP 06/12/2007 G7(3+4),T2cN0M0 Neg margins
PSA 07/16/2007 = <0.1
PSA 09/12/2007 = <0.1
PSA 12/18/2007 = <0.1

I will speculate a little:

Most RP patients are older. People of that generation tend to be more
deferential to authority figures such as surgeons. So maybe they
really don't want to "make a fuss".

This group is self-selecting to be more technically literate and
questioning than the population at large. So members would have fewer
inhibitions laying it on the line to their surgeons.

But all that said, the percentages of contributors here reporting
incontinence seem to tally with the generally-accepted figures. So add
me to the list of people who is struggling to the data provided to IP.

--
Peter Headland

rosbif wrote:

> why would a patient not want to admit the extent of any failure to
> their surgeon?

Dr. Yang specifically said that was due to our not wanting to disappoint
the nice surgeon. We've formed a bond with the man/woman who saved our
life, and don't want to make him or her feel guilty, so we suck it up
and are not candid with them. But when leaky or limp post-RP men consult
with a third party expressly for this new problem, we're much more
candid and thorough. When I told her I've told my surgeon everything
I've told her, she said that's rare, that studies show very few men do
so. Heck, look how many men come here relating very limited exchange of
information with their doctors even during critical treatment decision
phases. Realize, too, that our very presence here places us in the more
communicative cohort.

> Bizarre.

Uncommunicative men "bizarre"? I'd guess a hundred million U.S. women
would snort at that assessment.

> Are they stretching the 'norm' to its limit to mean anything >50%?

I didn't ask her for statistics.

> Does this apply just to open RP or to the laparascopic styles also?

Nor did we address that distinction, but because the primary continence
problems -- the removal of one sphincter and the bladder neck -- are
common to both procedures, and because nerve sparing is a function of
the cancer, not the procedure, I'd GUESS it matters little.

I.P.

>
> Their eyebrows shot up when I mentioned that on a GOOD night, I won't
> wake up until time to get up, and may void a quart of urine then.
> "That's way too much urine. It over-stretches the bladder."
>
> Well, excuuuuuuuse me. It's not like I was deliberately holding it. Any
> night I sleep for eight uninterrupted hours also goes in the Win column.

I too sleep through the night, always have. What I find interesting
is that when I wake up with the full bladder, I don't leak a drop
until after I empty the thing. I can put on clothes, move my wife's
car outside the gate so the dogs won't escape when she goes to work,
scrape ice off the windshield, come back inside and the whole time not
drip a drop. If I urinate first, I dribble the whole time.

As for telling tall tales to the doctor, I can relate to that. I
recall telling my doc that I was using 2-3 pads/day when I really knew
4-5 was the norm. A few months later, saying 1-2 when I was using
3-4. I think I was focusing on the one or two days when I indeed
needed only 1-2 and forgetting about all the others when I needed
more. I was treating the low pad days as the norm and the others as
"temporary regressions" on the road to total continence. At the 18
month mark to the day, the time when everyone will be as continent as
they're going to get, I actually left the house pad-free. I drove to
the Post Office, went into a store and did some shopping. No major
problems, a little too damp though in the underwear upon returning
home. Had I gone more than a few blocks of walking however, things
would have been much worse. Also, had I gone directly to my doctor
later that day I would probably have said "Good news, no pads." The
point is, I wasn't intentionally fibbing to my doctor, I really
believed what I was saying and thinking, blinded by my belief that
things were better than they really were. Also, I used to sleep
without a pad but after two or three episodes of peeing the bed while
dreaming of urinating I now wear a pad. Some wacko psychological
thing since I hadn't done that pre-op since I was about six years old
nor have I done it while wearing a pad. Maybe I need a psychiatrist
more than a urologist.

Incidently, my wife works in both hospitals and nursing homes and has
seen many patients who had in the past been treated for prostate
cancer. The pad wearers far exceed the 2% often quoted here and in
the literature. Granted, some of these folks date back to pre-nerve
sparing days but most don't.
Dave Perry

On Jan 17, 8:20 pm, "I.P. Freely" <fuhgheddabou...@noway.nohow> wrote:
> The dry guy -- the man who doesn't permanently need pads after an RP --
> is rare, for one simple, obvious reason: half the flow control valves
> are gone. Compound that by removal of one or both of the nerve bundles
> that control the remaining valve, and we're lucky to need only a few
> pads a day.

There have been many studies on this. The range of outcomes from these
studies
tends to be that 80% - 100% of patients regain continence within a
year or two (and
most far before that) depending on the study and definition of
continence. See:

http://palpable-prostate.blogspot.co...ontinence.html

---
The Palpable Prostate
http://palpable-prostate.blogspot.com

Leonard Evens wrote:

> The usual figures for serious long term incontinence requiring
> intervention are something like 2 percent.

A. Those figures come mostly from surgeons. Dr. Yang's whole point is
the distortion of those figures. I wonder what her publications say
about the statistics.

B. I'm not interested in intervention even on days I soak 2 or 3 pads,
yet one pt of my uro demands further surgery because he leaks literally
3 or 4 drops a day. Thus "required intervention" is a very lose term.

> Long term stress
> incontinence is estimated to be a bit higher, 20-30 percent.

Estimated by whom? Is Dr. Yang's professional opinion of no value? Did
you Google her curriculum vitae? Who has less reason to distort the
percentage of post-RP dry men -- surgeons or the uros who try to dry the
leakers up?

> Laproscopic surgeons claim greater success in the matter, but I'm not
> sure the research backs them up.

Bingo.

I.P.

On Thu, 17 Jan 2008 17:20:25 -0800, "I.P. Freely"
<fuhgheddaboutit@noway.nohow> wrote:
>I.P. Freely
>And apparently that’s the NORM

I.P., I certainly don't doubt what you say the Doc and Nurse told you;
but, that's not consistent with my experience and what I've learned
from talking with other RP patients.

I have some small leakage - no more than a few drops - when squatting
or lifting (stress), or when I'm really tired. I've not used pads
since a few weeks after surgery. (It's been too long ago to remember
exactly.) I feel lucky and I'm sorry you and others have more
problems. But, what they are saying just doesn't sound "right" to me.

Take care and best wishes.

Burney
RP in 1995 (age 52)
RT in 2000
ADT (Casodex) 10/06 - 8/07
Latest PSA - 0.13

burney dot huff at mindspring dot com

Steve Kramer wrote:
> "I.P. Freely" <fuhgheddaboutit@noway.nohow> wrote in message
> news:J0Tjj.262$A25.210@newsfe07.lga...
>
>> I had a urodynamics test yesterday.
>
> << Snip >>
>
> Thanks a bunch, I.P. This was, IMHO, your greatest contribution to date
> (and remember the I was impressed with your early ADT work, so I am not
> being sarcastic.).
>
> For the first time in my post operative life, I now know that having to use
> a pad just in case makes me awful lucky considering I lost an entire
> prostate, including both nerves. While it doesn't help the fact, it
> certainly makes me feel better about it somehow.

Same here. I can stop wondering what I'm doing wrong (very little),
wondering whether some form of intervention is in the cards some day
(not unless the floodgates open), wondering whether Kegels will help
(they should, and six diligent weeks should answer the question).

But a more universal question remains unanswered: why such a huge
disparity in continence statistics? If I were considering an RP or
incontinence intervention, I'd be reading Dr. Yang's pubs in detail.

I.P.

On Jan 18, 12:11*pm, "I.P. Freely" <fuhgheddabou...@noway.nohow>
wrote:
> Leonard Evens wrote:
> > The usual figures for serious long term incontinence requiring
> > intervention are something like 2 percent.
>
> A. Those figures come mostly from surgeons. Dr. Yang's whole point is
> the distortion of those figures. I wonder what her publications say
> about the statistics.
>
> B. I'm not interested in intervention even on days I soak 2 or 3 pads,
> yet one pt of my uro demands further surgery because he leaks literally
> 3 or 4 drops a day. Thus "required intervention" is a very lose term.
>

The studies that exist use different approaches. Some use self
reporting
based on number pads used while others are based on pad weight.

1. Self reporting number of pads used is subjective since same level
of incontinence
might be regarded as cause for using a pad by one person and not
another;
however, it does have the advantage that it relates to how bothered
the patient
is by the incontinence and that could concievably be more important
than the
objective amount.

2. The second type is objective and seems unlikely to be subject to
wrong
reporting.

See references in link in my prior post for more info.

---
The Palpable Prostate
http://palpable-prostate.blogspot.com

ronju99 wrote:
> I drank 32 oz. of water one hour prior and
> didn't leak with it.

I can wake up in the morning with a full bladder, do a variety of
exercises as a sphincter test without thinking about continence, cough
hard, pass gas, walk up and down the stairs, all with a dry pad, THEN
void a measured 1,000-1,200 ccs -- a huge quantity of urine. But that's
no guarantee I'll stay dry all day, especially as my sphincter muscles
tire. I leak more when relatively empty than when full.

I.P.

A. Black wrote:

> There have been many studies on this. The range of outcomes from these
> studies
> tends to be that 80% - 100% of patients regain continence within a
> year or two (and
> most far before that) depending on the study and definition of
> continence.

Maybe someone with more time and motivation can track down this study
and see whether it sheds any light:

Urol Oncol. 2003 Mar-Apr;21(2):93-100.
Related Articles, Links

Treatment decision-making by men with localized prostate cancer:
the influence of personal factors.

Berry DL, Ellis WJ, Woods NF, Schwien C, Mullen KH, Yang C.

School of Nursing, University of Seattle, Department of Urology,
University of Washington Medical Center, Seattle, Washington, USA.
donnalb@u.washington.edu

OBJECTIVES: For many men with localized prostate cancer, there is
no definite answer or unequivocal choice regarding treatment modality.
This high-stakes treatment decision is made in the context of great
uncertainty. The purpose of this study is to systematically document
meaningful and relevant aspects of treatment decision-making reported by
men with localized prostate cancer. METHODS: Focus groups and individual
interviews were conducted with 44 men who were within 6 months of a
diagnosis of localized prostate cancer. Using content analysis and
grounded theory analytic techniques, major aspects and processes of
men's treatment decision making are identified and described. RESULTS:
The participants reported their experiences beginning with influential
personal history factors, followed by detailed descriptions of
information gathering and the important influence of expected treatment
outcomes and other individuals' cancer histories and/or shared opinions.
Twenty of the 44 (45%) participants relied heavily on the influence of
another's opinion or history to finalize a decision, yet only 10 of the
44 (22.7%) reported this individual to be their physician. A common
process, "making the best choice for me" was explicated. CONCLUSION:
Clinicians assume that men are making rational treatment decisions based
on reliable information, yet this study documents a different reality.
Patient education about medical therapies and the patients' own medical
factors is not enough. A clinic visit dialogue that brings personal
factors to the conversation along with medical factors can guide a man
to making his "best choice" for localized prostate cancer.

Publication Types:

* Research Support, U.S. Gov't, P.H.S.


PMID: 12856636 [PubMed - indexed for MEDLINE]

I.P.

On Jan 18, 2:02*pm, "I.P. Freely" <fuhgheddabou...@noway.nohow> wrote:

> Maybe someone with more time and motivation can track down this study
> and see whether it sheds any light:
>
> * Urol Oncol. 2003 Mar-Apr;21(2):93-100.
> Related Articles, Links
>
> * * *Treatment decision-making by men with localized prostate cancer:
> the influence of personal factors.
>

That paper is about how patients make treatment decisions prior to
treatment whereas this thread is about incontinence outcomes after
treatment.

---
The Palpable Prostate
http://palpable-prostate.blogspot.com

djperry42@sbcglobal.net wrote:

> I too sleep through the night, always have. What I find interesting
> is that when I wake up with the full bladder, I don't leak a drop
> until after I empty the thing. I can put on clothes, move my wife's
> car outside the gate so the dogs won't escape when she goes to work,
> If I urinate first, I dribble the whole time.

Same here. I have always leaked more when relatively, maybe almost
completely, empty.

> scrape ice off the windshield

I vaguely remember doing that as a kid. I quit it >40 years ago when I
discovered that hot water melts ice. Haven't scraped since then, and
haven't damaged a windshield yet; haven't even seen an existing chip or
crack propagate. Physics beats manual labor ALL to hell.

> after two or three episodes of peeing the bed while
> dreaming of urinating I now wear a pad. Some wacko psychological
> thing

I'm always relieved to awaken fully, dry, after dreaming that I've been
peeing for 20 minutes. I'm sure the full bladder triggers the dream
rather than vice versa.


> Incidently, my wife works in both hospitals and nursing homes and has
> seen many patients who had in the past been treated for prostate
> cancer. The pad wearers far exceed the 2% often quoted here and in
> the literature.

If I had heard my opening post data from any old family physician,
without solid substantiation, I'd never have printed it here. But Yang
(Claire C.) and Clowers (Diane C.) have been wallowing, writing,
publishing, and lecturing in this stuff professionally since the 1980s
and are very highly praised by their peers. Their claims warrant our
consideration, IMO.

I.P.

A. Black wrote:

> See references in link in my prior post for more info.

I didn't post this to debate it. It's just fresh light on an old topic
for others' consideration.

I.P.

BH wrote:
> I.P., I certainly don't doubt what you say the Doc and Nurse told you;
> but, that's not consistent with my experience and what I've learned
> from talking with other RP patients.

A little arithmetic implies these two have analyzed, diagnosed, treated,
and/or lectured to something approaching 100,000 pts and peers. Their
careers depend on their credibility, and in no small part to the fact
that their boss, Paul Lange, and many of their peers, are also PC
patients. A researcher isn't likely to publish dozens of peer-reviewed
studies with hundreds of co-authors unless their peers trust them.

I.P.

A. Black wrote:
> On Jan 18, 2:02 pm, "I.P. Freely" <fuhgheddabou...@noway.nohow> wrote:
>
>> Maybe someone with more time and motivation can track down this study
>> and see whether it sheds any light:
>>
>> Urol Oncol. 2003 Mar-Apr;21(2):93-100.
>> Related Articles, Links
>>
>> Treatment decision-making by men with localized prostate cancer:
>> the influence of personal factors.
>>
>
> That paper is about how patients make treatment decisions prior to
> treatment whereas this thread is about incontinence outcomes after
> treatment.

Don't most men's top two treatment selection criteria include a
continence projection? Wouldn't you want all the continence data you
could find if you were choosing a treatment? Don't you thnk it revealing
and alarming that so many newbies choose treatments based on their buds'
advice rather than their uros' and oncs' advice? Might you place more
faith in continence failure rates presented to post-RP specialists than
in a surgeon who's trying to sell you his services based on his
continence projection claims? Isn't it important that so many surgeons
define "dry" as getting by on only one pad a day? Heck, I don't even
soak one pad in an intensive 5-hour, whole-body gym session ... as long
as I don't look at a trampoline.

I.P.

I have never leaked a drop. I had RP a litle over 2 years ago at age 51. I
lost no nerves.

"jloomis" <jloomis@ocean.net> wrote in message
news:fmp47d02hg7@news4.newsguy.com...
> Not sure what to think of the post and such. I do not feel that "That is
> the Norm" at least as far as I am concerned. I admit I have a one-sided
> view of this matter.......me.
> Anyway, I had RP when 49, and did kiegels prior to the surgery.
> I lost one set of nerves.
> I did not leak when the catheter was pulled.
> I did need to be a bit careful at first for about 2 weeks but after that,
> I am fine. I admit with a drip here and then after finising, but that is
> left over............
> Anyway, I must not be a part of the norm, and feel that walking, and
> running were a great help with the entire side effects of the surgery.
> Oh, and I can and do get great erections, and admit it took 2 years to get
> there........I do use about 25% of 100 mgs viagra to really pump it up.
> So, I am happy with my outcome and am very sorry for those who have not
> done so well.
> I had RP 1999.
> anyway, wish I had some answers to this problem for all those suffering.
> Jloomis
> "I.P. Freely" <fuhgheddaboutit@noway.nohow> wrote in message
> news:J0Tjj.262$A25.210@newsfe07.lga...
>>I had a urodynamics test yesterday. They monitor bladder pressure, fill
>>and empty it via catheter, and stress it while full, all while watching
>>the bladder by continual X-ray and a pressure monitor, in an attempt to
>>determine the cause of lingering limited post-RP continence. The urologist
>>and the nurse performing the test each have 20 years' experience
>>explicitly in analyzing and improving urinary and sexual performance in
>>post-RP men; both are nationally known. Their expectations and
>>recommendations included some very surprising and enlightening comments
>>relevant to many of us and largely contradictory to what we're being told,
>>IMO.
>>
>> The dry guy -- the man who doesn't permanently need pads after an RP --
>> is rare, for one simple, obvious reason: half the flow control valves are
>> gone. Compound that by removal of one or both of the nerve bundles that
>> control the remaining valve, and we're lucky to need only a few pads a
>> day.
>>
>> "You mean surgeons lie to patients before surgery about our incontinence
>> odds?", I asked. "No; patients [lie] to their surgeons *after* surgery".
>> She explained that the vast majority of men are far more willing to talk
>> candidly about post-op performance with a third party -- the sexual and
>> urinary continence specialist -- than with their surgeon, according to
>> her experience and many studies. IOW, pts are telling their surgeons,
>> "Oh, I'm fine. You did good" but then admitting problems only to
>> subsequent specialist(s). The surgeon chalks up another gold star to his
>> "dry, hard guy list", contributes another victory to the party line, and
>> promulgates the myths we hear after diagnosis.
>>
>> So what's the *norm*, the degree of continence we might *expect*, after a
>> couple of years of healing and Kegels post-RP *if* both nerves are
>> spared, according to these practicioners' literature contributions and
>> research? One to three pads a day, worse if one or both nerve bundles
>> were involved and removed.
>>
>> Bummer.
>>
>> When a man complains to a specialist that he's extremely incontinent,
>> such as multiple full diapers daily a year post-op, we know the options:
>> artificial sphincter or sling. We all know the many risks, from normal
>> surgical risks to failure to a variety of further plumbing complications
>> maybe requiring further surgeries; no surprises there. The surprise?
>> Their target, their optimal outcome, the best they can legitimately hope
>> for, is . one to three pads a day. IOW, I have no valid complaint. I am
>> already, and have long been, dryer than most RP pts, even those with two
>> intact nerve bundles, even after their successful incontinence surgery.
>>
>> I.E., lower your continence expectations across the board, according to
>> these published experts.
>>
>> I asked them about collagen injections. Their simple answer, "Oh, that
>> doesn't work for RP patients, period. Too much scar tissue. Not an
>> option."
>>
>> Other factoids:
>>
>> Urine expulsion with ejaculation is normal. The part of the bladder that
>> restrains urine during ejaculation is removed in an RP.
>>
>> "RP-enhanced orgasms are unusual but clearly observed. Chalk that up in
>> the Win column."
>>
>> They also said Detrol or other bladder overactivity drugs would be of no
>> use to anyone without bladder overactivity, and the test revealed that my
>> bladder activity was normal. One could experiment with Detrol, but its
>> SEs can be very painful; the test involves no more than a routine
>> catheterization and some extra Roentgens.
>>
>> Their eyebrows shot up when I mentioned that on a GOOD night, I won't
>> wake up until time to get up, and may void a quart of urine then. "That's
>> way too much urine. It over-stretches the bladder."
>>
>> Well, excuuuuuuuse me. It's not like I was deliberately holding it. Any
>> night I sleep for eight uninterrupted hours also goes in the Win column.
>>
>> And finally, re Kegels: *DO* them. I asked whether just going about one's
>> day -- home, office, yard, gym, sidewalk, etc. -- while staunching the
>> flow is enough strengthening for the pelvic floor muscles we need.
>> "Definitely not. Just like any other muscle that needs more strength,
>> these need specific strength training." I nodded and vowed to do them by
>> the book for as long as it takes to know whether I'm wasting my time, and
>> asked how long that may take. "You should know within about six diligent
>> weeks whether Kegels will help significantly." I presume that's after
>> full healing, meaning a couple of years post-RP.
>>
>> I.P. Freely
>> And apparently that's the NORM
>
>

On Fri, 18 Jan 2008 12:52:59 -0800, "I.P. Freely"
<fuhgheddaboutit@noway.nohow> wrote:

>patients. A researcher isn't likely to publish dozens of peer-reviewed
>studies with hundreds of co-authors unless their peers trust them.
>
>I.P.


I.P, my only point was that it seems clear that most of us in this
group have trouble believing Dr. Yang's assertion that most patients
have significant (whatever that means) incontinence problems and lie
to their Docs about it - resulting in bad data.

Dr. Yang does have an extensive curriculum vitae. For anyone who is
interested, here's the url.
http://depts.washington.edu/uroweb/print/cv/yang_cv.pdf

As for your point about a researcher not being likely to publish
dozens of peer-reviewed studies..........


According to his curriculum vitae, Dr. Yang currently holds
non-tenured assistant and adjunct professor positions (in urology and
neurology) at the University of Washington. Do you think the old
saying about "publish or perish" no longer applies to non-tenured
faculty?
RP in 1995 (age 52)
RT in 2000
ADT (Casodex) 10/06 - 8/07
Latest PSA - 0.13

burney dot huff at mindspring dot com

BH wrote:

> As for your point about a researcher not being likely to publish
> dozens of peer-reviewed studies..........
>
>
> According to his curriculum vitae, Dr. Yang currently holds
> non-tenured assistant and adjunct professor positions (in urology and
> neurology) at the University of Washington. Do you think the old
> saying about "publish or perish" no longer applies to non-tenured
> faculty?

You omitted the rest of my sentence: "A researcher isn't likely to
publish dozens of peer-reviewed studies *with hundreds of co-authors
unless their peers trust them*."

I.P.

I was just striving for brevity. I did not mean to leave out anything
for malicious reasons.

I believe my point is still valid. A non-tenured professor,
especially at a research institution, had damned-well better publish
if he (or she, as in this case) doesn't want to perish (lose their
job). And, academia is full of non-tenured professors/researchers who
are eager to publish.

Best wishes.
Burney

PS - I had the impression you lived on the other side of the Cascade
Curtain. Do you