Still incontinent 10 months after prostatectomy.

Hi,

I'm rather concerned because I'm still incontinent 10 months after
having a RP by Da Vinci robotic surgery in London, back in July 2007.
The RP operation in itself appears to have been successful because all
three of my PSA tests done at 3 month intervals since the op have come
back as 'undetectable'.

Here's my background:
After the operation I had a few complications with urine retention
when the first catheter was removed a week later and, as a result, I
was re-catheterised for another two or three weeks. Once free of the
catheter I needed to use three or four pads every day and now, 10 months
on, nothing much has changed - leakage -wise - except that I am pleased
to say that I'm now quite dry overnight.

I'm doing the Kegel exercises every morning and evening, as well as a
couple of times during the day, but they don't seem to be helping much
because even now I'm still wetting pads when walking, climbing stairs
and generally moving around.

When I saw the consultant last week he said that if my situation
hadn't improved when he next saw me in July (12 months after the op) he
would then propose further positive action. He mentioned another
operation to fit a 'valve' which, he said, would cure the problem, but
I'm not too happy about the idea of any further invasive surgery (I'm
67).

Am I expecting too much to be dry at 10 months? Is it sensible to
consider further surgery to cure the problem? Are there any other
techniques that I can use to help the situation?

I'd be really interested to hear the views and experiences of others
who may have been in my situation.

Thanks in anticipation,

- Dave

--
David C.Chapman - (dcchapman@minda.co.uk)
--------------------------------------------------------------------------

David Chapman wrote:

> Am I expecting too much to be dry at 10 months?

*Expecting*? I think so. Statistics place you and me on the damp side of
norm, but VA incontinence experts -- professionals who have devoted
their careers to it -- told me you (and I) are the norm at 2-3 pads a
day. Either way, we'd rather be dry, and many are, but *expecting* it
defies both the statistics and those professionals (both of whom lecture
nationally on the topic).

> Is it sensible to consider further surgery to cure the problem?

Not in my book. No way in hell I'm going to risk complications just so I
*might* change pads only once a day rather than 1-4 ties a day.

> Are there any other techniques that I can use to help the situation?

Well, we could sit or lie all day and stay dry. Or we can get on with
our lives and change pads when necessary. I sit down only to eat, drive,
or read; the rest of the day, including this very minute, I'm standing
or walking or exercising.

If I'm changing pads and exercising for another 30 years, I'll be
overjoyed.

I.P.

"David Chapman" <dave@minda.co.uk> wrote in message
news:J3drjlFnYuJIFww3@chassis.demon.co.uk...

> Am I expecting too much to be dry at 10 months? Is it sensible to
> consider further surgery to cure the problem? Are there any other
> techniques that I can use to help the situation?

Good to see you back, Dave. And good to see your PSA is undetectable at 9
months.

I would say you are not expecting too much at 10 months. It should have
come back to you by now I think. As to further surgery, that's a personal
judgment. Surgery is about 2/3rds successful, as I understand it. It
depends, I think, on what you do in life and just how irritating leakage is.

I was fairly continent after a few months and lost it with RT and ADT. It
causes me no problem except when I exert myself. As a matter of fact, I'm
sitting here on a lazy Sunday without a pad. But, if my wife wants me to
pick up those 40 pound bags of humis and manure for her Mother's Day
flowers, I'm going to put on a pad.




--
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32 PSAD .056 years
Lupron 07/03 (1 mo) 8/03 and every 4 months there after
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years
Casodex added daily 07/06
PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08
Non Illegitimi Carborundum

On Sun, 11 May 2008 07:31:14 -0700, "I.P. Freely"
<fuhgheddaboutit@noway.nohow> wrote:

>*Expecting*? I think so. Statistics place you and me on the damp side of
>norm, but VA incontinence experts -- professionals who have devoted
>their careers to it -- told me you (and I) are the norm at 2-3 pads a
>day

A 2 minute google search falsifies the above.

<rosbif> wrote in message news:1mce24tgajikt03f4clbsfj47vh9638458@4ax.com...
> On Sun, 11 May 2008 07:31:14 -0700, "I.P. Freely"
> <fuhgheddaboutit@noway.nohow> wrote:
>
>>*Expecting*? I think so. Statistics place you and me on the damp side of
>>norm, but VA incontinence experts -- professionals who have devoted
>>their careers to it -- told me you (and I) are the norm at 2-3 pads a
>>day
>
> A 2 minute google search falsifies the above.

I doubt what the VA docs told I.P. is on Google. :-)

On Sun, 11 May 2008 14:18:13 -0400, "Steve Kramer"
<skramer@cinci.rr.com> wrote:

><rosbif> wrote in message news:1mce24tgajikt03f4clbsfj47vh9638458@4ax.com...
>> On Sun, 11 May 2008 07:31:14 -0700, "I.P. Freely"
>> <fuhgheddaboutit@noway.nohow> wrote:
>>
>>>*Expecting*? I think so.Statistics place you and me on the damp side of
>>norm, but VA incontinence experts -- professionals who have devoted
>>>their careers to it -- told me you (and I) are the norm at 2-3 pads a
>>>day
>>
>> A 2 minute google search falsifies the above.
>
>I doubt what the VA docs told I.P. is on Google. :-)
>

"Statistics place you and me on the damp side of norm"

Statistics? Damp side?

<rosbif> wrote in message news:84ee24pa14vk4hl1l6uhhghtroc5pcv9ra@4ax.com...

> "Statistics place you and me on the damp side of norm"
>
> Statistics? Damp side?

Concur. But, statistics have me on the dead side of norm and I'm very
alive. It's a good trade.

Steve Kramer wrote:
> <rosbif> wrote in message news:84ee24pa14vk4hl1l6uhhghtroc5pcv9ra@4ax.com...
>
>> "Statistics place you and me on the damp side of norm"
>>
>> Statistics? Damp side?
>
> Concur. But, statistics have me on the dead side of norm and I'm very
> alive. It's a good trade.

Statistics -- and your presence here -- place you on the live side of
norm. i.e., statistically, you should be dead and I should be drier.

I.P.

Very many thanks to those who replied to my posting for their
comments and suggestions, both through the NG and privately.

I certainly never realised what a controversial subject it was until I
saw how many widely differing opinions were being offered.

I've now got quite a lot to think about. What a useful NG this is.

All the best, and thanks once again.

- Dave

--
David C.Chapman - (dcchapman@minda.co.uk)
--------------------------------------------------------------------------

David Chapman wrote:
> Very many thanks to those who replied to my posting for their
> comments and suggestions, both through the NG and privately.

Ya gotta watch those private communications. I always wonder about
advice or anecdotes or data not subjected to public scrutiny.

I.P.

David Chapman wrote:
> Hi,
>
> I'm rather concerned because I'm still incontinent 10 months after
> having a RP by Da Vinci robotic surgery in London, back in July 2007.
> The RP operation in itself appears to have been successful because all
> three of my PSA tests done at 3 month intervals since the op have come
> back as 'undetectable'.
>
> Here's my background:
> After the operation I had a few complications with urine retention
> when the first catheter was removed a week later and, as a result, I
> was re-catheterised for another two or three weeks. Once free of the
> catheter I needed to use three or four pads every day and now, 10 months
> on, nothing much has changed - leakage -wise - except that I am pleased
> to say that I'm now quite dry overnight.
>
> I'm doing the Kegel exercises every morning and evening, as well as a
> couple of times during the day, but they don't seem to be helping much
> because even now I'm still wetting pads when walking, climbing stairs
> and generally moving around.
>
> When I saw the consultant last week he said that if my situation
> hadn't improved when he next saw me in July (12 months after the op) he
> would then propose further positive action. He mentioned another
> operation to fit a 'valve' which, he said, would cure the problem, but
> I'm not too happy about the idea of any further invasive surgery (I'm
> 67).
>
> Am I expecting too much to be dry at 10 months? Is it sensible to
> consider further surgery to cure the problem? Are there any other
> techniques that I can use to help the situation?

According to Patrick Walsh, half the patients who have had radical
prostatectomies at Johns Hopkins report not needing pads by three
months, 80 percent at 6 months, 90 to 93 percent at one year and 93 to
95 at two years. Men are considered incontinent if they wear one or
more pads daily even if they just drip. Peter Scardino reports that
only one percet of his patients are incontinent by one year. of course
these men are first rate surgeons (but the Hopkins figures refer to all
surgeons there, not just to Walsh), and an average surgeon may not do so
well. But my surgeon said the risk of permanent long time incontinence
would be at most about 20 percent. Here is was including minor stress
incontinence, and not defining it in terms of pads. I've seen similar
statistics quoted by others.

Supposedly, the risk of incontinence is less for robotic surgery.

I think there must be something special going on in your case. Walsh
comments elsewhere that men who've had problems with urination before RP
are more likely to have problems with continence afterwards. You do say
that something appeared to have gone wrong in your case. I think you
have to play this by ear. Wait and see if things start to approve. Bu
t eventually you may have to make a decsion about further surgery.

>
> I'd be really interested to hear the views and experiences of others
> who may have been in my situation.
>
> Thanks in anticipation,
>
> - Dave
>

On Sun, 11 May 2008 20:41:45 -0400, "Steve Kramer"
<skramer@cinci.rr.com> wrote:

><rosbif> wrote in message news:84ee24pa14vk4hl1l6uhhghtroc5pcv9ra@4ax.com...
>
>> "Statistics place you and me on the damp side of norm"
>>
>> Statistics? Damp side?
>
>Concur. But, statistics have me on the dead side of norm and I'm very
>alive. It's a good trade.
>

That's great, Steve, and there's no dispute about this, the specific
need not, sometimes cannot (2.3 children per family etc), match the
generality. But if it's worth saying at all, the generality needs to
be as meaningful and unambiguous as possible. If it says nothing, it
says nothing.

WRT the post-RP incontinence discussion in this forum, terms like
'dry' 'wet' 'damp' and 'norm' have been left vague, made to
self-contradict, defined to suit a conclusion, used, abused and cooked
up into a porridge of total nonsense. Nobody is swallowing it, but it
continues to be served up.

On Mon, 12 May 2008 13:42:49 -0500, Leonard Evens
<len@math.northwestern.edu> wrote:

<snip>

> But my surgeon said the risk of permanent long time incontinence
>would be at most about 20 percent.

= the result of a.s.c.p.'s straw poll.....80% pad free.