Return of Leaking

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Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 2/25/2007 7:12 PM (GMT -7)   
I am disppointed right now.  My Da Vinci was Novemer 1st and I stopped using pads on January 13th.  Up until a few days ago I had only a little stress incontinence and then I started to have some leaking that is not much but is not related to any stress situation except walking and bending.  about the same time I begin to get some aching in the perineum area somewhat like I had for the first few weeks after surgery.  Has anyone experience this change after achieving a mostly dry condition?  If it does not get better in a few days I will be calling my urologist's office.
 
Tamu
Diagnosed 7/6/06
1 of 10 core samples, 40%
Stage T1c, Gleason 3+3
Da Vinci on 11/01/06
Catheter out on 11/13/06
56 Years Old
Post Op Path
Gleason 3+3
Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06
No more pads as of 1/13/07


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 2/25/2007 7:41 PM (GMT -7)   
Hi Tamu,

I don't know about the pain but I found that leaking would stop for a few days then I'd get a little leakage for a day or so. Nothing major but disappointing anyway. When I keep my walk schedule, I don't get any leaks. Good luck...

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04.  Next PSA on 4/4/07.
 
 "Cancer feeds on fear - starve it to death."


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 2/25/2007 9:18 PM (GMT -7)   
After a recient Cystoscope that found nothing wrong my Dr. just said to work the sphincter as much as I can. I try to remember to tighten up as often as I can. He was not concerned about over working it at this point.

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. Dr. said everythign looks fine.  Continue to work Kegeal's. Leaking appears to have improved after Cystoscope?!?!?!  Down to 3-4 pads per day! 
    May 22nd Follow up (unless incontenance does not improve by mid March) and 3rd Post Op PSA
   


dawgfan
Regular Member


Date Joined Aug 2006
Total Posts : 148
   Posted 2/26/2007 7:08 AM (GMT -7)   

Tamu,

 

I've been 'mostly dry' about as long as you; however, stress situations such as entering vehicles, bending or sitting down sometimes cause slight mishaps. I also experienced some very minor pains in the same area this weekend. They passed quickly and did not result in leakage, but certainly caught my attention. I was not doing anything stressfull at the times (twice).

 

I was thinking you were retired. I still work and still wear a pad a day to avoid potential embarrassing situations. I don't leak much if I do, but I seem to be at a plateau where it doesn't go away or improve. As I bought another pack of Serenity for Men at the store Sunday it occured to me that I did not care what anyone might think - the fact that I need a little sanitary assistance occasionally sure beats having cancer.



Diagnosed 8/24/06
Gleason 6
PSA 3.32
stage T1C
age 48
daVinci on 10/20/06
 
"Never miss a good chance to listen."
 


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 2/26/2007 11:38 AM (GMT -7)   
Hi Tamu: I too was doing pretty well till this weekend. Had a lot of people staying here for a family reunion and also went to my son's football game -- both events were rather stressful to me. Last night at about 7 p.m. I dozed on the recliner and when I woke up, the floodgates had opened. I too, have considerable dribbling -- especially in the evenings. Keep up the Kegels and watch the caffeine and alcohol.

Not sure if this is the case with you but, I was told by City of Hope that as the internal swelling goes down, we can begin to really sense what happened to us in there and the achiness and incontinence can relapse for a while. For some reason, swelling helps with incontinence -- go figure. But check with your doc.
Good Luck.

54 years old

PSA = First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06 (6 out of 8 cores positive), both lobes, Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.

First post-surgery PSA -- Undetectable, 2/20/07


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 2/26/2007 6:24 PM (GMT -7)   
Dawgfan,

Your description is basically the same as I am experiencing right now. I stopped using pads in middle January and leak a little for the first week and then dried up until a few days ago. The leaking I am getting comes in just a few drops every now and then sometimes related to activity and sometimes not. Then I am getting this aching a few times a day in my perineum near my rectum. It sort of throbs a few times then stops. I also sense more fullness in the area where the prostate was at. When I kegel is when I feel it the most. I assume the area that the prostate was at gets filled in my other tissue over time and maybe that is what I am sensing. Needless to say after being dry for about three weeks the last few days have been downers. It does help to know that others are experiencing something similar. My next appointment with my surgeon is not until June so if it does not improve shortly I will make a call.

Thanks for the comeback.

Tamu
Diagnosed 7/6/06
1 of 10 core samples, 40%
Stage T1c, Gleason 3+3
Da Vinci on 11/01/06
Catheter out on 11/13/06
56 Years Old
Post Op Path
Gleason 3+3
Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06
No more pads as of 1/13/07


hawkfan75
Regular Member


Date Joined Jan 2007
Total Posts : 165
   Posted 2/26/2007 8:55 PM (GMT -7)   
I'm about four weeks post catheder, and have been going without a pad for about a week.  Occasionally, I'll get just a drip, but no "leakage" - like drainage.  I found that the men's pads are so big, so if I want to have some protection, for example if I'm going out somewhere or doing something,  I'll put in a women's pad, which is much smaller, and with adhesive, will work just fine.  I have to ignore the frilly packaging and peel off strips, but if it works, who cares!!

PSA 4.7 (up from 3.2 one year ago)
Biopsy November 8, 2006
1 of 10 cores positive 5%
2 others questionable (small gland proliferation)
Gleason 3+3
Robotic surgery scheduled January 19, 2007


norskie
Regular Member


Date Joined Jan 2007
Total Posts : 376
   Posted 2/27/2007 8:00 AM (GMT -7)   
It has been 7 weeks today since my surgery and just about 5 weeks since the catheter was removed. From the beginning I have used just 1 pad per day and have experienced just some small leaks now and then. I agree with Dave's post above that many days I can do good through the morning and early afternoon and then about 2 to 3 PM I start to have more problems. I get that urge that I have to go and there may not be really much there but it sure feels like it. It's also during this time that I will notice the feeling that oops there goes a drop or two. I kind of relate the feeling to the kitchen faucet. I have the handle turned as tight as I can and I can still see and in my case feel the drop just move down and no matter how hard I try, I can't stop it and plop there it goes. I think it takes time for the muscle to heal and get strong. I don't have a doctor appointment until March 22nd in which I will be able to talk to my doctor about my status but I did talk to another guy who had this done by the same doctor about 30 days ahead of me. He stated it could take up to as long as 12 to 18 months to get back to 100% control. The area is still healing and the bladder is still figuring out where to be and adjusting to the prostate being gone and this movement until complete will effect results. This is what he was told anyway. I think we are all patient just as long as we get it fixed today.

norskie
norskie
Age 49, PSA 6.22 on 9-26-06
Biopsy 11-01-06, 2 of 13 cores 10% cancer, 2 other cores abnormal Up-dated 20% prostate cancerous
Gleason score 3+3=6 After Pathology report 3+4=7 some agressive 5 cells found
Da Vinci surgery 01-09-07 UW Madison
Pathology Report- cancer 100 % capsual contained 1-18-07
Catheter removed 1-18-07 suffered bladder spasms Catheter reattached 1-18-07
Catheter removed 2nd time 1-24-07
1st Post PSA Blood Test Scheduled for 3-22-07 


MichaelM
New Member


Date Joined Jul 2006
Total Posts : 15
   Posted 2/27/2007 10:41 AM (GMT -7)   

It seems that I am one of only a few that post on this forum that have sought the help of a nurse practitioner/physical therapist that specializes in helping post pca patients. I too have had relapses and occasional minor accidents. Her experience strongly indicates that doing kegals must be a lifelong exercise to maintain control. Trauma and changes in our physiology due to the removal of our prostate mandate it. So, keep up with those kegals and make sure that you are doing them correctly and you will improve, as I have.


57 years old
Dx on 4/1/06
PSA 5.3
12 cores taken, 2% of 2 cores positive for adenocarcinoma
Gleason 2+3=5, right lobe, 2+2=4 left lobe
Stage T1c
DaVinci surgery on 6/27/06
Post-surgical Gleason 3+3=6
40% of right lobe and 50% of left involved in Gleason 6 tumor
Tumor close to margin in the left lobe.
30 day psa 0.1, 45 day psa <0.1, 90 day psa <0.1, 6 mo. psa<0.1


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 2/27/2007 11:10 AM (GMT -7)   

Hi ~ Tamu….

 

Hopefully since the time you posted… things are going better….  You are right on about not waiting too long to check it out. 

 

100% in agreement with MichaelM. 

The sphincter muscle is so very important and must be taken care of from now on!!!!

It is the muscle that is doing all the work now.  And it’s having to be trained because he was the lazy muscle before surgery… 

That’s why we have to start Kegels before surgery…. To get him ready for his new job. 

That’s why we have to hang with Mr. Hang (catheter)…. So the area that reconnects him to the bladder is allowed to heal.

 

Reminder:  Do not ride a bike, riding lawnmower, stationary bike … etc.  Anything that puts pressure on this little guy….  You will be the one who suffers the consequences… and he will let you know about it!!!!

 

Guy ~ listen to your body!!!!  It is so important…. Even 6,8,10 months after surgery.

 

Protect him at all cost!!!!!!!!!

Too much caffeine and some high blood pressure medication relaxes this muscle and could be helping to add to your incontinence…  Just thought I’d through this tidbit in…

 

Take care ~ friend…. And we continue to keep you close in thoughts and prayers.


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 2/27/2007 2:38 PM (GMT -7)   

Bluebird,

It is a little better today but I am back to wearing a pad during the day time.  The funny thing is that I can drink a beer, a mixed drink or coffee and it does not cause any leakage that I can associate.  The leakage I am now having comes at weird times like just walking down the street.  It is not a lot of leakage but enough to cause a small spot on my pants so it was back to the pad or be embarassed.  The perineum aching is better today.  Maybe this is just still part of the recovery process and I need to just wait and see what happens. 

I am also a little down because my brother-in-law who is mildly mentally retarded just had another PSA test run and it was 7.2.  He has had two biopsies over the pass 4 years and this will the third that is scheduled in two weeks.  He does have an enlarged prostate.  He is 49 and if he has to have surgery it will be tough on him.

Tamu


Diagnosed 7/6/06
1 of 10 core samples, 40%
Stage T1c, Gleason 3+3
Da Vinci on 11/01/06
Catheter out on 11/13/06
56 Years Old
Post Op Path
Gleason 3+3
Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06
No more pads as of 1/13/07


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 2/27/2007 2:50 PM (GMT -7)   
Tamu - are you still kegaling?? We were just at doctor's office today (PSA undetecible x 2) and the subject of leakage came up. Bob still leaks a little each day, but it's like you are describing . . .not as a result of any beverage or even when holding urine. Anyways, the doctor said keep kegaling (which he was not) as that's what will push you over into being leak free. It's 5 months post surgery and his comment was . . .you'll be dry and I'm not the least bit worried there!

I'm thinking that the kegaling should simply become a way of life, done several times throughout the day. . . . . that's what us women who bore children do and it works!!

;o) Linda & Bob


Bob (60) had laproscopic prostate surgery on Sept 27, 2006 - 2/12 malignant biopsy samples - gleason 3 + 3 = 6.  Follow up PSA results and pathology results received Nov 14th are NO MORE CANCER!  Gleason changed to a 3 + 4; cancer completely confined to prostate; (even a second more aggressive, previously undetected cancer)      PSA UNDETECTABLE November 2006 AND February 2007.   
 
Bob also takes Hydroxyurea to control Polycythemia (elevated red & white cells & platelets) has secondary condition . . Myelofibrosis) -- If anyone has experience or knowledge of these, please post us.

Post Edited (lawink) : 2/27/2007 3:26:00 PM (GMT-7)


josal
New Member


Date Joined Nov 2006
Total Posts : 11
   Posted 2/27/2007 3:19 PM (GMT -7)   
 Hi Everybody
      From my signature you can see I had LRS in October "06" . I still am leaking most days at work but mostly stress related . I have changed to Serenity Dryactive pads in the very light size that I get at drug stores . Most of the time I don't leak just wear pad for comfort . So that being said 4 months or more with some leaking is not so bad if you stop to think about what has been removed and reattached together . My doc said that it could take a year or more to get "normal" again. Hang in there (HA HA ) and I'll talk to you all some other time .
            JOHN
 54 year old robust male
 PSA pre-biopsy 6.7
 Gleason 3 + 3
 Stage T1a
 DaVinci robotic laproscopic prostatectomy 10/11/06
 post surgery pathology:  malignancy in less than 1% of samples
 first post-op PSA 1/07 undetectable


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 2/27/2007 4:55 PM (GMT -7)   
Tamu, every once in a while Jeff will dribble a little bit when we are fooling around but he says he doesn't notice it happening other times - like working out, lifting things or drinking coffee or alcohol. I'm glad the pain has let up and hope that it disappears completely. sorry to hear about your BIL. I'll keep him and your family in my prayers. kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test 0.1, 2nd post-surgery PSA test 0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 2/27/2007 6:55 PM (GMT -7)   
I have gone back to kegeling. When I became dry for those three weeks I just naturally eased off on them and perhaps that has something to do with it. Also, the bad reaction that I had to the Caverjet penis injection may have started this as it all occurred about the same time. It took me two weeks to get over the penile aching from the Caverjet which is a problem with that medication. I have received Bimix but just have not been in the mood to give it a try. I am also doing a lot of small project work which may also be making it worse. Now that I have heard from all of you I feel a lot better emotionally.

Thansk to all.

Tamu
Diagnosed 7/6/06
1 of 10 core samples, 40%
Stage T1c, Gleason 3+3
Da Vinci on 11/01/06
Catheter out on 11/13/06
56 Years Old
Post Op Path
Gleason 3+3
Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06
No more pads as of 1/13/07


djhouston
Regular Member


Date Joined Jan 2007
Total Posts : 68
   Posted 2/28/2007 12:08 PM (GMT -7)   
Hey Tamu, old buddy,
Glad you are doing better. At just 6 mos. post-op, I'm still leaking a little with standing, or other stress incontinence provocations. I have kind of a combination problem. My doctor did a bladder suspension procedure at the time of the prostatectomy (has anyone else had this?) to hasten recovery of continence, but it seems like it has worked too well and kept me from completely emptying. This, added to the still diminished bladder size, means I gotta go a lot "right now". My doc wanted me to stop the pads, because he thinks one can get too dependent on them, and he wants people to Kegel on. We came to a compromise, of me wearing women's "super" panty liners (there are apparently various absorbancies of them).

Sorry you had such a problem with the Caverject. That was a lesson for me, to use that as a next-to-last resort. I have been using 100mg Viagra with a 500 microgram MUSE suppository (NOT recommended by my doctor's nurse because she thought I might get a priapism from the combination-but no chance of that yet), to "test the waters" to see if I could get anything better than an increased feeling of fullness, but nothing doing. The nerve is still regrowing, I guess, with a lot of strange pains and sensations in the whole pelvic area. It's weird that one can't get anything going with one nerve.

Keep the faith, my friend. I think there is a lot of variability in the road to healing.
dj
dj's stats:
PSA (10/04): 2.9; PSA (2/06):4.4, on Androgel (serum T about 450) at age 56; negative DRE, no symptoms.
PSA (5/06):5.7 with a free PSA% of 8, OFF Androgel (serum T 163). 
Biopsy (5/06): 4/12 samples positive; postitive samples only on right side; max Gleason 4+3=7 (in 2 of the 4 -from area nearest bladder.
DaVinci robotic-assisted laparoscopic radical prostatectomy + bladder lift + Right nerve plastic surgery (8/23/06).
Catheter out 4 weeks postop, due to internal pinhole leak at bladder-urethra junction.
Final pathology report:T2c-both sides,but in capsule; neg. margins, neg. lymph nodes, neg. seminal vesicles; final max Gleason still 4+3=7.
Follow-up PSA (11/06): <0.008; serum T: 195 OFF Androgel (at present).


jerrio
New Member


Date Joined Nov 2006
Total Posts : 18
   Posted 3/2/2007 4:24 PM (GMT -7)   
It has been one month and 8 days since surgery. I have been getting along great with one pad and not really using much of it, feeling real smug, went 3 days with out losing a drop and then bang!!! a dribbling day, sure lets the air out of you. I found that the caffine like in Coke or Pepsi really turns the dribles back on. Hopefully I will get smart enought to leave them alone mad . Hang in there everone and some day we will beat this. yeah    Gerald
PSA went from 2.3 to 4.5 12 months
Biop was 3+3=6 3% left side on 1 0f 12
sch. for total removal 1-22-07 (open)


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 3/30/2007 7:30 PM (GMT -7)   

Just to let everyone know I am back to being dry again.  I am still not sure what caused the leaking to return causing me to go back to using a pad but it occurred about the same time that I had some perineum aching return.  I guess things were still trying to work out where they wanted to be.  The importance of kegeling also was evident to me.  After having been dry for over a month I got confident and had stopped kegeling.  When the leaking returned I went back to doing it everyday a couple of times a day.  Within a week the leaking began to get better.  Then about a week ago the perineum aching stopped completely and I became dry again.  In fact, it is better then ever.  I am able to lift, sneeze and do anything without leaking.  I am also able to hold more urine then anytime since the surgery and I would say that from a continent point of view I am where I was at before surgery.  The point that I am getting is that the healing takes a lot longer then what we think. 

Thanks to all for the support.

Tamu


Diagnosed 7/6/06
1 of 10 core samples, 40%
Stage T1c, Gleason 3+3
Da Vinci on 11/01/06
Catheter out on 11/13/06
56 Years Old
Post Op Path
Gleason 3+3
Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06
No more pads as of 1/13/07


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 3/30/2007 8:29 PM (GMT -7)   
Hey Tamu,

Glad to hear you are doing good. I agree that healing takes longer than we expect. I had some strange aches and pains in the prostate area for the first couple of months. Also my capacity is much greater now than before surgery and I don't have to pee 15 times a day and 3 times at night anymore. There are some good side effects to this stuff.....

Good luck...

Jim


Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04.  Next PSA on 4/4/07.
 
 "Cancer feeds on fear - starve it to death."


parson
Regular Member


Date Joined Dec 2006
Total Posts : 55
   Posted 3/31/2007 4:19 PM (GMT -7)   
I have a slightly different problem and wonder if any body has run into this. I am 10 days post removal and very little leakage. But I only am able to urinate when I put some pressure on, if I stop straining( pressure ) than I stop going. Is this normal? Barrister
Age 64, PSA 3.4,increased from 2.5 over 14 months,  3 of 12 cores positive 12/14/06,gleason 3+3=6
CT of ab,chest and pelvis and Bone scan all negative 1/8/07, staging prior to surgery T1c, Robotic at Hopkins 3/12/07.
Upgraded after surgery path. Gleason 7 ( 4+3 ), invasion of both right and left seminal vessicles
Stage T3b
Lymph nodes negative; Extensive positive marge at the  left base of prostate
First Lupron injection 3/26/07; Casodex started 3/27/07
Scheduled to start radiation 4/30/07


B&B's World
Regular Member


Date Joined Mar 2007
Total Posts : 120
   Posted 3/31/2007 5:01 PM (GMT -7)   
Hi All,

I have reading these and other posts about leaking because B has experienced some just lately. After such excellent control after removal of cath on March 6, he was puzzled. But, he has been back to work for two weeks, moves around like he used to, and is also back to his old habit, namely, drinking lots of drinks with caffeine!

I emailed him some links to the posts about it. Thanks everyone!

Becky

Age 51

Gleason 3+3

PSA from 3.2 to 4.3 in one yr

Biopsy 11/06

DRE negative

4 of 12 cores positive, one lobe, less than 10%

Inflammation only second lobe

Stage T1C Clinical Dx

PSA prior to surgery: 3.9

Da Vinci Prostatectomy 2/27/07:

PCa in BOTH lobes 5-10% of gland

Gleason 3+3

Negative tissue margins

Bladder, seminal ves, vas deferntia negative

Two inguinal hernia repairs

Catheter removed 1 wk after surgery

Full continence (no pad needed) 1 wk after surgery

Full potency, 12th day after surgery
 
 


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 4/1/2007 5:52 PM (GMT -7)   
Barrister,

I was told after the removal of the catheter that if I had any problems urinating to call the office right away. There is a chance that some scar tissue may be restricitng your uretha some. I would call just to let them know about it.

Tamu
Diagnosed 7/6/06
1 of 10 core samples, 40%
Stage T1c, Gleason 3+3
Da Vinci on 11/01/06
Catheter out on 11/13/06
56 Years Old
Post Op Path
Gleason 3+3
Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06
No more pads as of 1/13/07

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