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yarema
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 9/19/2007 8:06 AM (GMT -7)   
I am 3 and a half months after robotic surgery. I developed a urinary tract infection soon after the catheter was removed. The infection has been dealt with, but I am totally incontinent. I hold some urine at night but much comes out in the depends. I can get up from a chair and walk to a bathroom holding urine , at least in the early part of the day.        a cystoscopy showed no problems. Has anyone developed relative continence after similar experiences. While my doctor tells me we should wait out a year, other urologists tell me that if I have almost total incontinence now I am unlikely to progress. Have biofeedbacks helped?
 
 
 

War-eagle
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 9/19/2007 8:24 AM (GMT -7)   

yarema,

Hello brother. I too leaked like sieve after surgery. It has gotten a lot better for me. Although I still were Depends every day, my leakage has gotten to a very minimum. I have some at night, but most of the time I wake up to go. How is your capacity? Do you hold a lot before you go? Mine has got a lot better in that way. It takes some time. Do the Kagals.

I still don't have control when I laugh, so I get hosed down pretty good when I read some of the postings here. Sneezing and coughing also bring rain. My favorite song to sing is "Rainy night in Georgia".

I don't know anything about biofeedback, but would like to know more...............just coughed.......rain.

Hang in there, others will respond soon with many good answers for you. Glad to have you with the group, it helps a bunch. See if you can add some info about your overall condition. See: Include signature below.

WAR EAGLE to ALL

 

Walt (war eagle)


Age: 54
PSA 43 7/2005
Biopsy 12/14 Gleason 7 & 9
Divinci 9/2005 - spread to bladder
HT - 10/2005
RT - 10/2005 (38 treatments)
PSA 0.12 to 1.9 2/2007
Bone Scan and CT 4/2007
Casodex 4/2007
Spread to Spine, rib, and pelvis
Zometa infusions 4/2007
PSA 4.9 8/2007


uncledan
Regular Member


Date Joined Aug 2007
Total Posts : 120
   Posted 9/19/2007 5:05 PM (GMT -7)   
Yarema, Think war-eagle is right about the Kegals. If you haven't been doing these religiously, you need to start now. I am 5 weeks, 1 day post surgery today and I am fairly dry at this time, except when I get up from a chair, get out of the car, etc. This doesn't happen every time, but does occasionally. From reading a lot of posts here it seems that a lot of us are leakers for quite awhile. Get the updates coming and check the forum for lots of info. Main thing is keep a positive attitude. God Bless, Uncle Dan
Age 67
No symptoms, DRE negative
10-06 PSA 5.44 01-07 PSA 6.47
CT and Bone scan negative
05-07 Biopsies, 2 of 6 positive
Gleason Score (3+4) 7 Stage T1c
08-14 Dr. Dasari - Baptist Hospital
da Vinci RAP, five hours surgery
Hospital 2 1/2 days, 8 -14 to 8 -16
Pathology report Negative margins
Cancer encapsulated,
Lymph nodes 2 R & 1 L - Negative,
R & L seminal vesicles - Negative
Gleason changed (4+3) 7 closer to 8 than 6
8-31 Use pad when out, Sleeping without pad.


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 9/19/2007 5:13 PM (GMT -7)   
Yarema,

Welcome to HealingWell!

Biofeedback gives you "feedback" about which areas of the pelvic floor muscles you are contracting.  It also gives you a coach that will monitor your progress and give you an exercise program designed for your abilities and needs.

If you find the time, look in the Helpful Hints thread (#2 at the top of the page) and scroll down to the second or third post where Ms. Bluebird has MANY Threads indexed.
Your questions make me recommend my Thread "Zen and the Art of Symphonic Continence."
It is filed near the top of "Other Topics" after "Personal Journeys."
I'd post the link - but looking through the index at the postings of all your new cohorts is likely more valuable to you than my thread!

14 week post surgery incontinence - from my reading - seems right on the line with those patients that start showing some control between weeks 12 and 16 - and those very few that don't.

I wish you well and encourage you to read the Zen thread to learn "elevator Kegals."
This exercise can teach you the control that you need while walking up stairs!

My main advice is to consider/imagine at all times yourself completely continent and just deal with the "leaking" and frustration (and crying - "It's like there is an infant in need of a diaper change living in my house...") - deal with the hassles that come with the leaking as a job.
Not the worst job and not the best job.
Just a job. 
Keep yourself dry by changing pads when wet and use a barrier cream daily and an anti-fungal ointment weekly.  Patients here like Berber and Gene and KW change pads all the time and those around them don't know anything about it.

Sincerely,

CCedar
ICTHUS!


2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Pad Free @ 14 weeks.  Six Month PSA <.003  :)
At 6 months, ED treated with Pump Exercises & 50mg Viagra Daily
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 9/19/2007 8:55 PM (GMT -7)   
Welcome to the forum, yarema, good to hear from you!
 
I can tell you my experience.  I am just 7 weeks after robotic surgery.  I am dry most of the time unless I wait too long between visits to the restroom.  I am dry at night.  
 
My good friends here, recommending that I "go" every 1 1/2 hours whether I needed to or not.  I did that and it helped a lot, along with the Kegels.
 
Yesterday, my doctor asked me to wait for the physical therapy (PT) with biofeedback until 3 months.  If I wasn't satisfied with my progress by then, she fully endorses me having PT to strenghen the pelvic floor.   If you choose the PT route, you may wish to secure one or two recommendations from your urologist/surgeon.  We have a rehab hospital locally with PTs skilled in biofeedback for treating incontinence.
 
Do you feel as if you have made any progress as you do your Kegels?  The advantage of the PT is that they can determine where you are weak and whether or not you are doing your Kegels properly.
 
Also, I'd say stay away from caffeinated drinks!  These will break your continence and confidence pretty quickly! 
 
Lastly, some folks don't gain full continence for a long time, perhaps one year or more.  From what I've seen in the forum, at less than 4 months post surgery, you do have a lot of hope for continence ahead of you.
 
All the best,
 
Idaho

Da Vinci Surgery July 31, 2007… 54 on surgery day
PSA 4.3  Gleason 3+3=6  T2a  Confined to Prostate

PSA 0.04 taken 9/11/2007 (undetectable)

Web site: http://pca-info.blogspot.com

 


JCL
Regular Member


Date Joined Jul 2007
Total Posts : 242
   Posted 9/20/2007 4:56 AM (GMT -7)   
Welcome, Yarema.

You've received some great advice, and I can only echo Cedar's recommendation to check out his thread. It was extremely helpful to me in regaining continence. It's amazing what progress you'll be able to see if you keep up with the Kegels and do the stairs. I had a hard time stopping a full stream in the beginning, but four months later I can now stop a full stream on a dime and hold it for however long I wish, and currently only have some minor stress incontinence which is not an issue. I feel like I could crack a walnut if someone put one between my butt cheeks!
 
It's hard and easier said than done, but remember the two P's - Perseverance and Patience.

Good luck and please check back.

Jack
______________________________________________________
Age: 49
Diagnosed: March, 2007
PSA: 3.0
Biopsy: Gleason 6, 5 out of 12 samples positive for cancer, <5%.
DaVinci Surgery: May 21, 2007 at Florida Hospital, Orlando. Nerves spared.
Pathology Report: Gleason 7 (3+4), negative margins, negative seminal vesicles, lymph nodes left intact, 15% of prostate involved by cancer
1st Post Surgery PSA: <0.01
2nd Post Surgery PSA: September 27, 2007
Out of pads at five weeks. Still have minor stress incontinence but it's not a big issue.
Erections with the assistance of Cialis

Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 9/20/2007 1:06 PM (GMT -7)   

Yarema,

I just completed four sessions of Bio-Feedback.  Ceadar Chopper is one who kept on nudging me to do so.  I think many on the forum, including Ceadar, have received helpful information in this process.  I wish I could be more positive about it, but thus far it has not worked... for me.  However, I evidently have other underlying problems. 

I posted a couple of nights ago, just before I went for my last Bio session and I was really down because I knew I had to go in and report no improvement.  I was terribly disappointed, but I don't think it was the fault of the bio-feedback experience.  The lady who took me through this experience acted just a dissappointed as I and she took extra time with me yesterday trying to "get a handle" on my problem.  One of the things she noticed was that at my last systo, the doctor and read into my records that my sphincter was "a little shorter than usual."  She said she had never seen anything written like that by a doctor and was puzzled about it.  However, no more puzzled than I.  I have built up a pretty good sour disposition by now about doctors... so I have to guard my words I suppose.  After all, one did take the cancer out  (I just wish I could feel he did his best job on me).

Anyway, for me bio-feedback didn't work... or at least it has not yet.  As to be more exact about what they did, I had to insert a probe up my rectum and leave the wires hanging out of my pants ("Look... I've grown a tail!"  That was good for a few laughs anyway).  She connected the probe to her computer which measured my squeezing strength.  I only got to about half of what I should be.  Again, that's not the fault of the bio-feedback, it's some kind of problem of mine.

She is making a recommendation to my uro that I receive collegan (sp?) implants.  I had actually been tested for that not long after my surgery, but I didn't pursue it because of some negative things I read about it.  I think it is KW who had a couple of those implants that didn't work.  But my ther. says it might be what my sphincter needs until it catches up to size... (I'm still growing? ... Naaaa.  Maybe she said "catches up to speed")  But I intend to start another thread about the callegan implants again.  I'm going to do it now. 

Anyway, the evidence is in that it helps some people.  I'm just not one of them.

Gene


Age: 63
First biopsy 07/05;
Diagnosed: "Suspicious looking cells". Dr. says wait and watch.
Second biopsy: 12/27/06
Diagnosed cancer: 01/24/07
Gleason Grade: 3+3=6
Radical Open Nerve-sparing Prostatetomy: 02-14-07
Cancer confined to prostate
Pathology Stage of cancer: T2c
First Post-Op PSA on 04-18-07: 0.011
Bleeding problem at 6 weeks post surgery...No resolution despite several trips to surgeon, antibiotic treatment.
05/31/07: Cystoscope reveals "stone", due to "Stricture" (narrowing of uretha at prostate removal site).
06/12/07: Procedure to remove stone & dilate uretha at stricture: Successful procedure, but is most likely a temporary fix, and incontinence continues.
8/16/07: Start bleeding again in urine.  Get to see a new urologist same day.  He thinks stricture is back, but send home with Cipro.
8/20/07: Go back to dr. for cystoscope.  "No sign of stricture"!  Wonderful news!
8/31/07: Back to new urologist for regular check up & received 2nd post-op Psa.  It was 0.05 (non-deteactable).  PTL!
8/31/07:  First Bio Feedback session.  The little lady is very positive that I can gain control.  That's what I want more than her.  New urologist is not very sold on effectiveness of Kegals???  
 
 
 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 9/21/2007 8:58 PM (GMT -7)   
Yarema,  I have been one of the long term leakers here.  I wold say give bio-feedback a try.  I am showing some improvement in muscle tone.  I have has a slight improvement in leaking ...but not much...
just take your time and let your body try to catch up....
 
kw
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
   


yarema
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 9/22/2007 2:26 PM (GMT -7)   
Do you know if the ability to hold urine overnight is a good sign? Do you leak then as well?

Yarema

pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 424
   Posted 9/22/2007 3:34 PM (GMT -7)   
Yarema,
 
I had heard that being able to hold urine overnight was a GOOD sign.  That it meant that the sphincter muscle was there and could work.
 
I help urine overnight from the time soon after catheter removal, but leaked like a sieve walking, standing from sitting for another 8-9 weeks.
 
 
Ray
Age 59 y/o - Last 3-4 years of annual general health checkups - PSA 5-6
3/13/2007 - 12 point biopsy - Left 0/6  Right 1/6 Gleason 3+3 Diagnosed as T1c
4/24/2007 - DaVinci performed at Virginia Mason hospital in Seattle
5/2/2007 - Catheter Out! Final pathology of Gleason 6  T2c Nx Mx,   approx 20% of prostate involved, positive margin, but only at 2 focal points.  
6/28/2007 9 weeks post-op incontinance... Overnite, went from 4-6 soaked pads a day from prev 8 weeks to 2 barely wet pads a day.
7/12/2007 11 weeks post-op  Minimal leakage...  one small pad a day
7/18/2007 First Post-Op PSA...  0.01 !!! 
7/30/2007 ED improved to about 60% erection and "functional". Only using 50mg Viagra generic every 2-3 days.
9/10/2007 Ran out of pads one day and had no dribbles all day...  Now pad free. :-)


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 9/22/2007 3:51 PM (GMT -7)   

You probably are asking KW the question about leaking at night but I will answer the question too because it applies to me.

I can acontain most of my urine overnight.  But sometimes I squirt a little while going to sleep.  Not much.  By reading other posts I had concluded that staying dry at night is more comfortable but not a sign of getting better.  But I will take this as a positive into my mind.  I have had so many negatives there, it heps me "feel" a little better.

I had always assumed that the reason I leaked while standing was the law of gravity.  But I asked my therapist why I did well at night and while I was sitting down, but not while I was up walking around, etc. 

She said it was because at night my bladder rested on my spine and while sitting down it rested on my pelvic floor muscle.  According to her, it used to have the prostate to rest upon, but that thingy is gone now.  It is when I stand that I have to look for the pot becasue if I can't find it withing a minute or two, it starts leaking. I don't know whether her explanation is correct or not, but it makes sense.

Anyway, I'll close out feeling a little encouraged. 

Gene



Age: 63
First biopsy 07/05;
Diagnosed: "Suspicious looking cells". Dr. says wait and watch.
Second biopsy: 12/27/06
Diagnosed cancer: 01/24/07
Gleason Grade: 3+3=6
Radical Open Nerve-sparing Prostatetomy: 02-14-07
Cancer confined to prostate
Pathology Stage of cancer: T2c
First Post-Op PSA on 04-18-07: 0.011
Bleeding problem at 6 weeks post surgery...No resolution despite several trips to surgeon, antibiotic treatment.
05/31/07: Cystoscope reveals "stone", due to "Stricture" (narrowing of uretha at prostate removal site).
06/12/07: Procedure to remove stone & dilate uretha at stricture: Successful procedure, but is most likely a temporary fix, and incontinence continues.
8/16/07: Start bleeding again in urine.  Get to see a new urologist same day.  He thinks stricture is back, but send home with Cipro.
8/20/07: Go back to dr. for cystoscope.  "No sign of stricture"!  Wonderful news! Still leaking.
8/31/07: Back to new urologist for regular check up & received 2nd post-op Psa.  It was 0.05 (non-deteactable).  PTL! But still leaking
8/31/07:  First Bio Feedback session.  The little lady is very positive that I can gain control.  That's what I want more than her.  New urologist is not very sold on effectiveness of Kegals???
9/19/07: Finished 4 Bio Feedback sessions.  No imporovement with leaking. Recommended possible callegen implant. She noticed from 8/20 cysto that my sphincter was ... too short?... huh?   
 
 
 

Post Edited (Gene6163) : 9/22/2007 4:59:50 PM (GMT-6)


yarema
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 9/23/2007 11:34 AM (GMT -7)   
I note that KW says that his leaking improved after a cystoscopy and then the leaking crept back up. I just had a cystoscopy on Wednesday and have noticed improvement since then. I hope that I won"t find this temporary. Does anyone else have experience with a cystosvopy and leaking?

Yarema

Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 9/23/2007 12:57 PM (GMT -7)   

I rememer reading that too.  I did not notice a slowing of my leaking after cysto but I did notice that my stream in the morning and when I rose from a siting position was restricted.  I chaulkled it up to swelling after the probe had been where things don't normally go.

What say KW?

I know right where you are.  You are where I am on and off.  You want to look for any little sign of improvement.  Keep looking.  Maybe this will be it for you.  If not this, something else.  Keep looking.

Gene


Age: 63
First biopsy 07/05;
Diagnosed: "Suspicious looking cells". Dr. says wait and watch.
Second biopsy: 12/27/06
Diagnosed cancer: 01/24/07
Gleason Grade: 3+3=6
Radical Open Nerve-sparing Prostatetomy: 02-14-07
Cancer confined to prostate
Pathology Stage of cancer: T2c
First Post-Op PSA on 04-18-07: 0.011
Bleeding problem at 6 weeks post surgery...No resolution despite several trips to surgeon, antibiotic treatment.
05/31/07: Cystoscope reveals "stone", due to "Stricture" (narrowing of uretha at prostate removal site).
06/12/07: Procedure to remove stone & dilate uretha at stricture: Successful procedure, but is most likely a temporary fix, and incontinence continues.
8/16/07: Start bleeding again in urine.  Get to see a new urologist same day.  He thinks stricture is back, but send home with Cipro.
8/20/07: Go back to dr. for cystoscope.  "No sign of stricture"!  Wonderful news! Still leaking.
8/31/07: Back to new urologist for regular check up & received 2nd post-op Psa.  It was 0.05 (non-deteactable).  PTL! But still leaking
8/31/07:  First Bio Feedback session.  The little lady is very positive that I can gain control.  That's what I want more than her.  New urologist is not very sold on effectiveness of Kegals???
9/19/07: Finished 4 Bio Feedback sessions.  No imporovement with leaking. Recommended possible callegen implant. She noticed from 8/20 cysto that my sphincter was ... too short?... huh?   
 
 
 


yarema
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 9/24/2007 5:35 AM (GMT -7)   
I also want to know if late afternoon presents greater problems of leaking. Yesterday I got through the morning and early afternoon so well that I became optimistic. A short walk home at about 6pm reversed this. My depend was full from that walk. Does improvement work that way for others?

Yarema

lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 9/24/2007 7:46 AM (GMT -7)   
Hi Yarema!
We found that later in the day was a time of more leaking . . .probably due to the muscle getting "tired" . . this too passes with recovery. Good luck!
;o) Linda & Bob
Bob (61) - Laproscopic Prostate Removal Sept 27, 2006.
2 of 12 malignant biopsy samples - gleason 3 + 3 = 6.
 
Pathology - cancer completely contained, even a second more aggressive, previously undetected cancer)
PSA UNDETECTABLE Nov 2006, Feb and May,2007.

Bob also has two secondary conditions -- Polycythemia (elevated red & white cells & platelets) and . . Myelofibrosis) -- If anyone has experience with or information on these, please email us.


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 9/24/2007 7:53 PM (GMT -7)   

    I do great when sitting and sleeping.  I wake up in the mornings with a full bladder.  I can make it to the toilet without dripping.  But once I go the leaking starts.  It does seem to be getting slightly better.  I keep a count of my pad use so I can actually see what is happening.

    Good Luck,  KW


    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
   


yarema
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 9/25/2007 5:52 AM (GMT -7)   
I also found that I did much better right after my cystoscopy last Wednesday. By the weekend I was able to walk for twenty minutes and then void quite a bit. But by Monday, I couldn't do this. I wonder if this means that the cystoscopy brings a certain activation of the bladder that doesn't last

Yarema

yarema
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 9/26/2007 10:23 AM (GMT -7)   
One week after a cystoscopy I find that flood gates have been unleashed. Last evening I used a clamp for 2 hours. When I took it off I couldn't urinate. Then the dribble started again. By today all the progress that I had seen in the week after the cystoscopy is gone. Has anyone else had this experience? I have already gone to check that I don"t have a UTI.
 
Yarema

kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 9/26/2007 6:18 PM (GMT -7)   
Right after the cystoscope and collagen injections I only had a day or so of improvement. Then it was right back to the leaking.
The bio-feedback and exercises have been helping. But since I had basicly no muscle tone when I started it will take some time. My therapist thinks now that my hip muscles may be too tight. She says they could be holding the pelvic floor muscles from moving where they need to move.
Will just keep working on it. Not going to give in to the AUS too soon! Not really wanting a plastic tube in me all the time!!!

check back later.....
KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
   


yarema
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 10/11/2007 7:57 AM (GMT -7)   
I am writing to those of you who were kind enough to answer my questions. I went for two biofeedbacks. Whether accidentally or not I cannot say, but I began to improve. In my 16th week, I began to be able to function relatively well until about 3pm. I continue doing the Kegels and am hoping that I am going to see more improvement.

Thank you for all your help,

Yarema

yarema
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 11/8/2007 9:58 AM (GMT -7)   

I wanted to let those of you who gave me advice know how I am doing at 5 months after surgery. I have done biofeedbacks and kept to the Kegels. I have seen some improvement but it still does not last longer than the afternoon. I am going to see my surgeon Dr. Samadi next week. He has told me that one should wait out a year before one considers any additional means. I see that other doctors urge other means earlier. Let me know what you have been advised.

 

Yarema


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 11/8/2007 6:31 PM (GMT -7)   
Yarema, My Dr. said it is not uncommon for a small percentage to take a 12 to 18 months to regain control. My second Opinion Dr. at the University said that after about 9 months if you do not have control you probably will not get it back. I asked my therapist about this and she said that "he does like to do his surgeries". The therapist shows me each month that I make positive gains in the muscle tone department. So I am going to stick it out for a while longer. I figure the leaking is really only a minor inconvienance. If I can work in a industrial environment and take care of things anyone can. You know...welders can be a rough crowd. You just have to be able to laugh at things and remind yourself that the cancer was the most important thing to take care of.
I go back to both Dr's in the next month. I will update my Journey after I talk to them in December.

Good Luck....KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
        Biopsy Sept. 27, 2006 - Diagnosis Sept. 29 - 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
        RRP on Oct. 17, - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
    Oct 17, 2007 1 year Post Op - Still fighting moderate / Severe incontenance. Using 4-6 pads a day.  Erections usable....sometimes!...Better with 100mg Viagra
   


Hagrid
Regular Member


Date Joined Sep 2007
Total Posts : 60
   Posted 11/8/2007 8:02 PM (GMT -7)   
If anyone would like to discuss my experience with an AUS, let me know.
Age: 57 (49 when diagnosed)
PSA 100+ 3/1999
Biopsy -positive, both nodes 03/1999
Bone Scan and CAT scan negative 4/1999
Radical prostatectomy and bladder neck removed 04/19/1999
HT - 05/1999 (Lupron every 3 months for 9 months)
RT - 6/1999
PSA 0.0-0.2 until 2001
Casodex 150mg 2001 until 2006
Casodex 100mg 2006-present
PSA 0.4-0.6 2001-2007
 


yarema
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 12/13/2007 7:55 AM (GMT -7)   
I would like some information on the AUS that Hagrid offered to give. I am now over six months. I am still not able to hold urine by the afternoon and I must consider when I should seek additional treatment.
 
Yarema
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