Going to an incontinence specialist

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knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted Today 11:49 PM (GMT -6)   
I had my 10 month post op follow up for psa and for my ongoing  incontinence issue. After the 6 month visit I have been in PT and have had good progress in pelvic floor strenght but no help at all with the dribble while standing and i remain 100% incontinent while on my feet and moving around. At the 10 month the local uro threw in the towel and said I wasn't going to improve and to be evaluated for the artificial urinary sphincter. This is something I that was already pretty much expected. While I remain hopeful, I think it is time to get evaluated. Instead of going to my local Baton Rouge uro's associate who is probably more than qualified I have made an appointment with Dr Boone at Methodist in Houston. After he makes the call there won't be much wiggle room in my thinking process.
Months ago I dreaded this step but others on this site who have blazed the way with their own AUS devices have improved my attitude greatly about getting a sphincter installed.
The psa was fine, well sort of, maybe. Here is what has happened on my three post op psa tests. 
 
3 months done at Tulane where the surgery was done,    0.04.
 
6 months the results done by my hometown uro and were called to my wife and she told me 0.06, or so I thought but she was not real clear exactly what they said. Well no matter, whatever it was it had enought zeros and I would wait till my 9-10 month and get the exact info then.
 
At 10 the month I asked my dr what was the 6 month psa? Answer undetectable. Ok what does that mean? answer, well that is zero. I am now cutting out four or five more questions and answers for breivity and finally I drag out of him it was <0.1. Humm.
Then he gets defensive and goes thru the usual deal about ultra sensitive causing noise ect. ect.
His group has their own psa machine which is excellent, no doubt, for diagonsing pc but I think I would rather know that I am 0.09 rather than falsely thinking i am "zero".
Now this next part I thought was interesting. His nurse calls me a few days later with the 10 month results and I talk to her this time. She says it is 0.0. I ask her to repeat it. again 0.0
Now i understood how my wife got a little confused. Bottom line, find someone else to do my psa testing!! I shouldn't have to have some sort of cat and mouse game with a uro just to find out what I what to know. Then have his nurse tell me something that true but misleading to say the least.  Why just say it was <0.1?  Numbers are not so complicated, or so I thought.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 9/26/2010 7:58 AM (GMT -6)   
If you end up looking for AUS Dr. Bob B (Michigan) has done many of these proceedures, met him at seminar on such and in a casual setting and heard other good comments about him.

As for the psa tests and games played, they have their reasons apparently for the games...I think it stinks and prefer flat out stats and numbers and total disclosure no matter whom looks bad with it. I actually get a copy of psa tests and know what it says, trust but verify concept. Alot of people have been mislead as to what zero or undetectable supposedly is, of which over many years that threshold has been manipulated and changed some especially in defining radiation vs. surgery BCF number. (in the past) I understand your rant and there are many more rants in PCa, you may notice them more and more from experiences. Hope sailing gets smoother for anybody.

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 9/26/2010 8:11 AM (GMT -6)   
Thanks for the advice on doc bob. The doctor I am seeing has done a lot of these (650+) and I will probably have the surgery done by him assuming it comes to that.
Ron

kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 9/27/2010 8:59 PM (GMT -6)   
Ron, I had my AUS done 2 years ago and everything has been great. I do still need a light panty liner for some dribbles during a normal day. When I play golf I need a depends guard for the leaking. One pad will easily last 18 holes.
Good luck with your decision.
Kw

Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 9/28/2010 8:58 AM (GMT -6)   
knotreel,

I am 15 months out from having my AUS activated. It might not be the best thing since sliced bread, but darn close to it!!! I wear a light pad during the day to catch the dribbles from sneezing, coughing, or hard laughing, but I can definitely deal with that.

Wigs
Diagnosed @ age 46 - September 1997
PSA 5 / Gleason 3+3
Seed Implant - January 1998 @ Trident Hospital, SC
PSA 2.4 - July 2007
PSA 2.7 - July 2008
PSA 3.0 - November 2008
Diagnosed @ age 57 - December 2007
Gleason 4+3
Salvage Prostatectomy & Colostomy - March 2008 @ MSKCC, NY
Suprapubic cathether installed - July 2008 @ Cleveland Clinic, OH
Urethral-Rectal Fistula Repair - August 2008 @   Cleveland Clinic, OH
PSA < .03 - Aug 2008
Penile catheter removed October 2008
Suprapubic catheter removed December 2008
Colostomy Reversal - January 2009 @ Cleveland Clinic
Urethral stricture removed - January 2009 @ Cleveland Clinic
(Total incontinence - 4 diapers & 6 - 8 pads per 24 hour period)
PSA < .03 - Jan 2009
AUS implant - May 2009 @ Cleveland Clinic
PSA < .03 - May 2009
AUS activated - July 2009
(Wearing a light pad daily.)
PSA < .03 - July 2009
Penile Implant - December 2009 @ Cleveland Clinic
PSA < .03 - December 2009
Penile Implant activated - February 2010
PSA < .01 - April 2010 
 
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