It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Incontinence Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 02-21-2008, 01:51 PM   #1
Newbie
(male)
 
Join Date: Jul 2007
Location: Canada
Posts: 8
hugh02 HB User
Incontinence and ED Issues

This is my first posting so first a bit of background then I have questions.

Record of PSA prior to operation: Sept 99 – 6.5, July 02 – 8.5, April 05 – 11, Oct 06 – 13.
Biopsy done by an urologist in a distant city: 23 Dec 06. Gleason score was
3+4=7/10.

First report from family doctor following biopsy was benign, I didn’t have cancer. About three weeks later I started thinking this couldn’t be all, there must be some treatment for an obvious prostrate problem. I returned to my family doctor and another doctor temporarily filling in said he would check with the urologist. When he called me back in a couple of days later he told me I did have cancer and the urologist said I was a good candidate for nerve sparing RRP. This doctor had the same operation three years earlier so he was able to explain a lot for me; although like most doctor he tended to generalize.

I had the operation 04 May 07. Post-op pathology: Urologist said if you imagine the prostrate looking like an orange, the cancer had just shown through in one spot on the skin. Did not get a Gleason score.
The operation/hospital stay also didn’t go as well as it could have. I did as recommended in literature. I got up the next morning and walked and walked; the same the next day. By night my urine was red again and the flow from the catheter stopped. I emptied seven medium sized paper cups of liquid from the stomach cavity suction drain. I was taken to another hospital where a scan could be done. The treatment for this problem was traction on the catheter. I anticipated a three day stay in the hospital. I was released after seven days. I would recommend that this business of getting up and walking be done in moderation. On the other hand I could have had a poor stitch job, or both.
I did not pursue either of the latter two issues nor did I question why my pre-op PSAs didn’t raise some concern earlier; I took it as s_ _ _ happens.
My catheter was to be in for 21 days. The balloon broke and it came out itself on the 14th day. I leaked a lot for the first couple of months, never at night, and then it tapered off to where I quit using even the lighter pads. I still leak a few drops with the slightest cough or stretch movement or if making a fast move. I was taking this as pretty positive progress but in the past month I have experienced several setback periods of a few days where I would leak enough to warrant the use of a couple of light pads per day. This may be related to any combination of increased periods of stress, fatigue and maybe at the same time neglect of kegels.
I should mention the following here because it likely has and will have a bearing on my progress and recovery from side effects. About one month post-op my wife of 13 years walked leaving me with a five year old son and a two year old daughter. I did not see it coming. Our relationship seemed exceptional good including the sex part right up till days before my operation. I still can’t figure it. Regardless, these two wonderful little people provide purpose to my life. Also I had dropped out of the workforce about two years ago to care for our infant daughter with full intentions of seeking new employment about now. One other factor; at my age (69) most of my life-long friends and similar age group relatives are gone. I have four grown children in their late 30s from a previous marriage but they live in distant places. I have not lived in this area where I live for long, at least not long enough to build a new circle of friends. When... I have not unloaded that much personal information in a long long time.
Regarding ED I know I can have orgasms at about the same rate as pre-op. I have tried viagra and cialis but the high cost has discouraged me from doing it systematically. I have half heartedly tried the ErecAid System. Have a real difficult time with any of this without a partner or the prospects of one. I get a sense from reading a couple of these threads here earlier that the writers have an impression that 40s and 50s make up an exclusive group but believe me this stuff has as much impact on men at any age. Anyway on to questions.

I would really appreciate hearing from people who have/had or know of similar medical background conditions along with experience of longer duration.
What are the stats on/odds of regaining complete continence; that is no leakage at all; can cough freely again and no spurts with orgasms?
With my background what are my chances of obtaining erections at some future date as before the operation or possibly assisted with viagra or cialis? I cannot envision using a pump etc.
Somewhere in these threads I was reading where the question was raise: are leakage/spurts harmful to a female partner during intercourse. I lost track of the thread before I could find feedback. Does anyone have an opinion on this?
Has anyone else experienced similar setbacks as I have regarding incontinence?
These questions are all very important to me. Sorry for using so much space but any less info might not have been enough to portray the whole picture.

hugh02

Last edited by hugh02; 02-22-2008 at 08:08 AM.

 
Sponsors Lightbulb
   
Old 02-21-2008, 04:25 PM   #2
Veteran
(male)
 
Join Date: Aug 2006
Location: NJ,USA
Posts: 362
shs50 HB User
Re: Incontinence and ED Issues

Cannot address your incontinence issues as I was lucky enough to never experience any leakage from when the catheter came out which was day 7. On the post-op E.D issues; in my case I had bilateral nerve sparing open RRP 61/2 years ago at the age of 69 same as you. You never mentioned whether you had one or both nerves spared which has a significant effect on ability to regain erections. Even with bilateral nerve sparing it took time, many months to regain partial erections with help from Viagra ,etc. The ErecAid system was necessary to firm up sufficiently to permit penetration and completion. As you should have been advised it is impossible to have ejaculations of semen after RRP since the seminal vesicles have been removed. However it is possible to spurt clear fluid from the Cowper Glands during an intense orgasm either from sex or masturbation. The clear fluid is also referred to as pre-ejaculatory fluid which often leaks prior to a normal ejaculation pre-surgery. It cannot harm a woman as long you don't have an STD or other communicable infection. With time you may regain partial or complete erections depending on the extent of your nerve sparing, the quality of your erections pre-surgery, the patience and appeal of your partner and many other psycho-sexual variables which even today aren't fully understood and are highly sensitive to mood, health, age, attitude and partner.
Hope this is of some value.
There are also other options if erections don't return and you are committed to having a sex life. These include self injections and implantable pumps which can best be explained by a urologist or sex hygiene clinician/therapist.

 
Old 02-21-2008, 05:37 PM   #3
Member
(male)
 
Join Date: Jul 2007
Location: Houston, TX, USA
Posts: 74
Kemahsabe HB User
Re: Incontinence and ED Issues

Wow! You've been on quite a journey. And to think some people in the US want a Canadian style single-payer healthcare system.

All I can do is relate my experiences. I had a robotic-assisted RP on 30 July 2007, which was about two months before yours. My pre-op PSA was 10.1 and my Gleason was 7.

The catheter came out on day 7. I had moderate leakage that decreased in steps and stopped 8 weeks later. The only time I have a few drops leakage now is in conjunction with gas or a bowel movement. I can tell you that things are still 'changing' down there even after six months. I have less of the bowel-related leakage than I did two months ago. Hopefully you can expect the same kind of gradual improvement.

At my 3 month post-op checkup I asked what to expect by way of ED improvement. The doc said not to expect full function until at least 9 months post-op. Here we are at 6 1/2 months and things are improving very, very slowly. But they're improving. Again, hopefully you can expect the same kind of gradual improvement.

I wish you luck and continued improvement.

 
Old 02-21-2008, 10:33 PM   #4
Newbie
(male)
 
Join Date: Jul 2007
Location: Canada
Posts: 8
hugh02 HB User
Re: Incontinence and ED Issues

Thanks much for the info. I really need to go back and see the urologist to get answers to questions I didn't ask. I went into this kind of blind, didn't even know website like this existed, info based on personal experience rather than questionable generalization. I do not know for sure about nerve sparing but because the urologist said everything went well I assumed both bundles were spared as intended. One other thing I fogot to mention is at three months post-op my psa was <.02. I will have the next results next week.

 
Old 02-22-2008, 08:20 AM   #5
Newbie
(male)
 
Join Date: Jul 2007
Location: Canada
Posts: 8
hugh02 HB User
Re: Incontinence and ED Issues

Sorry, I typed in the wrong date of my operation; it was done 04 May 07. I have edited the original post.

 
Old 02-22-2008, 11:04 AM   #6
Veteran
(male)
 
Join Date: Aug 2006
Location: NJ,USA
Posts: 362
shs50 HB User
Re: Incontinence and ED Issues

Interesting that your first post-op PSA is <0.02 since my post-op PSA's were always <0.05 which is considered undetectable. <0.02 is 60% less than undetectable or a negative PSA. Are you sure you have the decimal point in the right place?

 
Old 02-22-2008, 11:15 AM   #7
Newbie
(male)
 
Join Date: Jul 2007
Location: Canada
Posts: 8
hugh02 HB User
Re: Incontinence and ED Issues

Yes, I checked on it several times. The number was right and they said it was undetectable.

 
Old 02-22-2008, 11:46 AM   #8
Newbie
(male)
 
Join Date: Jul 2007
Location: Canada
Posts: 8
hugh02 HB User
Re: Incontinence and ED Issues

Quote:
Originally Posted by Kemahsabe View Post
Wow! You've been on quite a journey. And to think some people in the US want a Canadian style single-payer healthcare system.

All I can do is relate my experiences. I had a robotic-assisted RP on 30 July 2007, which was about two months before yours. My pre-op PSA was 10.1 and my Gleason was 7.

The catheter came out on day 7. I had moderate leakage that decreased in steps and stopped 8 weeks later. The only time I have a few drops leakage now is in conjunction with gas or a bowel movement. I can tell you that things are still 'changing' down there even after six months. I have less of the bowel-related leakage than I did two months ago. Hopefully you can expect the same kind of gradual improvement.

At my 3 month post-op checkup I asked what to expect by way of ED improvement. The doc said not to expect full function until at least 9 months post-op. Here we are at 6 1/2 months and things are improving very, very slowly. But they're improving. Again, hopefully you can expect the same kind of gradual improvement.

I wish you luck and continued improvement.
As I initally typed in the wrong operation date my info was misleading regarding progress. I am coming up to 10 months post-op. With either viagar or cialis or the vacum pump without bands, I am about half way there. without using or doing anything for 4 or 5 days I sometimes wake up with all the old natural feelings. A check by feeling in that area is still disappointing though.

Last edited by hugh02; 02-22-2008 at 11:48 AM.

 
Old 02-22-2008, 03:48 PM   #9
Veteran
(male)
 
Join Date: Aug 2006
Location: NJ,USA
Posts: 362
shs50 HB User
Re: Incontinence and ED Issues

Are you sure about the post-op PSA being <0.02 since <0.05 is considered undetectable? <0.02 would be 60% less than undetectable or 6/10 of nothing. Are you sure of where the decimal point went?

 
Old 02-22-2008, 05:06 PM   #10
Inactive
(male)
 
Join Date: Jan 2008
Location: CA USA
Posts: 46
CapBob HB User
Re: Incontinence and ED Issues

Quote:
Originally Posted by shs50 View Post
Are you sure about the post-op PSA being <0.02 since <0.05 is considered undetectable? <0.02 would be 60% less than undetectable or 6/10 of nothing. Are you sure of where the decimal point went?
I think different labs have a different "floor" of detection. I just had my first post-surgical test and it came back as "less than 0.01".

 
Old 02-23-2008, 05:14 AM   #11
Senior Veteran
(male)
 
Join Date: Nov 2007
Location: Annandale, VA, USA
Posts: 1,730
Blog Entries: 3
IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
Re: Incontinence and ED Issues

Quote:
Originally Posted by shs50 View Post
Are you sure about the post-op PSA being <0.02 since <0.05 is considered undetectable? <0.02 would be 60% less than undetectable or 6/10 of nothing. Are you sure of where the decimal point went?
Good morning shs50, and also to CapBob and hugh02,

As you can see from the posts from CapBob and hugh02, it is possible to get below <0.05 using a different ultrasensitive PSA test. The most sensitive test I know of is the Immulite Third Generation PSA test, which has an analytic, research capability of .003. However, that is not practical in the normal clinical situation. My impression is that it takes special tweaking of the test setup and procedure to get reliable results that low, and I think there is no research on the value of a result that is below <0.01, which CapBob reported; in other words, <0.01 is the lowest practical clinical value at this time. You are getting ultrasensitive testing, but it is not a test capable of the lowest level, or at least lower results than <0.05 are not being reported. (My oncologist sometimes uses an ultrasensitive test from a convenient Tosoh analyzer until I get to around .05 during the "on cycle" of my intermittent triple hormonal blockade program, then switches to the Immulite version, which is shipped out of state for processing. I have achieved low points of <0.01 twice, and have then commenced the off-therapy cycle, stopping the heavy duty drugs. )

While you have the advantage of much earlier warning of a possible recurrence than if you had had a test capable of only <.1 - a great advantage, you can get an even earlier warning, and, more important, you can also tie your results into research that has been done on the odds of recurrence. The big break point is below <0.05, and you get valuable information on your odds at <0.01, .01, and .04 - the lower the better. Hopefully you would not get an early warning by seeing an increasing trend but would get earlier peace of mind instead.

I did a detailed post about one study of ultrasensitive test results down to <0.01 dated 2/4/2008 7:22 pm under the thread "Should we be concerned." It has brief excerpts from the Shen study, one of the studies covering this issue. (I put a brief paragraph in a later response on that thread dated 2/5/2008 11:27, but the details are in the earlier post.) You can access those posts quickly by going to the "Search this board" feature in the upper right of the opening screen for this board and searching for " Shen ".

CapBob - Congratulations on that great result!

hugh02 - Your result is also a fine one. You can get that even more sensitive lower limit if you want to.

Jim

 
Old 02-23-2008, 09:28 AM   #12
Veteran
(male)
 
Join Date: Aug 2006
Location: NJ,USA
Posts: 362
shs50 HB User
Re: Incontinence and ED Issues

Thank you Capbob & IADT3 for clarifying a confusing issue. I guess MSKCC uses <0.05 as the floor of detectability for their ultrasensitive PSA testing while other labs go even lower. I was not aware that a lower quantity was measureable and was relying on the statement in Dr. Scardino's Prostate Book that a measurement below <0.05 would be a quantification of less than nothing.

 
Old 02-23-2008, 10:49 AM   #13
Senior Veteran
(male)
 
Join Date: Nov 2007
Location: Annandale, VA, USA
Posts: 1,730
Blog Entries: 3
IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
Re: Incontinence and ED Issues

Quote:
Originally Posted by shs50 View Post
Thank you Capbob & IADT3 for clarifying a confusing issue. I guess MSKCC uses <0.05 as the floor of detectability for their ultrasensitive PSA testing while other labs go even lower. I was not aware that a lower quantity was measureable and was relying on the statement in Dr. Scardino's Prostate Book that a measurement below <0.05 would be a quantification of less than nothing.
Hi again,

I have a lot of respect for Dr. Scardino but have not read his book.

It's possible he wrote that portion before the significant studies on lower PSA values were published. It's also possible that those studies were among some of the more than 4,000 studies published on prostate cancer each year that he was unable to get to. It could be that MSK has used <0.05 as its lower limit for years and has a lot of analytical investment in that threshold; in other words, it may have based its own studies, trials and guidelines on that level so that using a lower level would be awkward.

Of course, Dr. Scardino also might just not believe in the value of such sensitive ultrasensitive testing, but another possibility is that MSK uses <0.05 as their measure of a recurrence worth tracking. Doctors and researchers using conventional tests have more or less agreed on a threshold of 0.2 as the point at which a recurrence is clinically significant. I expect that threshold will be lowered as ultrasensitive testing becomes more widely used, which is happening. (It used to be rare to see patient reports of ultrasensitive testing capable of results below <0.1, but now it is common.) My estimate as a layman is that we will probably see 0.04 or 0.05 as a threshold paired with a significantly fast PSA doubling time as the indicators of a significant recurrence after an RP. (The PSA situation is different after radiation; while you would like to see an extremely low PSA level, many of us apparently do well with levels that can be measured by a conventional test.)

The James Buchanan Brady [aka "Diamond Jim" Brady] Urological Institute at Johns Hopkins University has published a guide to the seriousness of a recurrence based on the PSA doubling time, the Gleason Score from the post-op report, and whether the PSA rose to 0.2 within three years or after three years from the prostatectomy. You may be doing very well by their guidelines, even if you have now exceeded <0.05, which hopefully you have not. It is possible to project how long it would take a patient now well below 0.2 to reach that level, using PSA doubling time for the estimate. If it is more than three years, you are on the good side of that standard, and you can check the other two standards because you have the Gleason from the post-op report and have the PSA doubling time by calculation. There have been several posts on this board by me and one by Debbie about the published study behind their guidelines. You can check them by putting the name of the lead author in the search block on this board's home page: Freedland.

Take care,

Jim

 
Old 02-25-2008, 11:10 AM   #14
Veteran
(male)
 
Join Date: Aug 2006
Location: NJ,USA
Posts: 362
shs50 HB User
Re: Incontinence and ED Issues

Jim:
I'm sure you're correct in what you say and Dr. Scardino's book was published over a year ago. I know that MSKCC still uses <0.05 as their standard of undetectability as does the other lab used by my primary care physician where I alternate my semi-annual PSA's in order to have different labs confirming my PSA. I believe, though am not certain, that <0.05 is still used at MSKCC and my other lab because no evidence has surfaced indicating that anyone whose PSA never exceeds <0.05 is experiencing a recurrance and that that is therefore a reliable standard.
I remember being told that the best that can be accomplished by modern scientific testing is to rule out disease by an absence of evidence which is not to be confused with evidence of absence. There are just no guarantees.
That's why they use the term "Undetectable" when referring to PSA and "Not Observed" or "None Found" in referring to negative pathology of surgical margins rather than absolute terms.
Bob

 
Old 02-25-2008, 01:04 PM   #15
Newbie
(male)
 
Join Date: Jul 2007
Location: Canada
Posts: 8
hugh02 HB User
Re: Incontinence and ED Issues

My PSA results today (nearly 10 months post-op) is again <.02 which is likely a Vancouver labs lowest number used. Likely results of <0.05 from a different lab are as promising.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
post radical prostatectomy and incontinence Palitana Incontinence 26 08-08-2012 10:31 AM
Botox for anal fissure - does it cause incontinence? Neonsky Incontinence 16 05-11-2010 07:07 PM
Advice please on beginnings of incontinence? Tracey110 Incontinence 25 09-22-2008 11:54 AM
Incontinence Setbacks? CapBob Incontinence 20 09-10-2008 03:42 PM
Incontinence Issues Ratatosk Incontinence 11 08-04-2008 01:08 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



crazyoldcatlady (3), Katyana (1), Aberlaine9 (1), pupcake (1), tearsnfears (1), seriousperson (1), penny70 (1), Ilovedollhouses (1)

Site Wide Totals

teteri66 (1139), MSJayhawk (943), Apollo123 (860), janewhite1 (823), Titchou (774), Gabriel (743), ladybud (667), sammy64 (666), midwest1 (655), BlueSkies14 (610)



All times are GMT -7. The time now is 01:14 PM.



Site owned and operated by HealthBoards.com™
Copyright and Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!