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cupcake25
Regular Member


Date Joined Jan 2011
Total Posts : 24
   Posted 1/29/2011 6:50 PM (GMT -6)   
My husband had a robotic radical prostatectomy Jan 10 2011. His catheter has been out over a week now and is constantly leaking alot. I know this is normal and the doctor said by 6 months he should be dry. My husband is getting depressed about the leakage. He is doing kegel exercises and doing penal rehab. I was just wondering on average when does the leakage start to get better?

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7080
   Posted 1/29/2011 7:34 PM (GMT -6)   
I'm not sure that there is an average. I was doing kegels and trying to walk every day, and it was just at 2 months when I dropped from 7-8 pads a day. There was a several week period when I would average about 5, then dropped to 3, then to 1, but then I started IGRT, which reversed things (that is another story).
 
But overall, it was 5 months when I got to just 1-2 pads a day. Many uros seem to accept 1 pad per day as "continent" (mine did), while all of us hope for "leak-free, pad-free". You will see this as LFPF if you want to google the studies - I remember that there was one from Cleveland Clinic, I believe, that discussed what doctors considered "continent".
 
It did not get better by visible steps day by day, more that just one day I realized I was using less, then things would stay the same a couple of weeks, then another improvement.
 
One thing I wished I had been able to do more of was walking. I was pretty beaten up, and the first couple of weeks after the catheter was out, I could manage about a quarter of a mile in an hour if I used a cane.
 
Getting the walking and kegels finally in sync at that 2 month mark made a big difference.
DaVinci 10/2009
My IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 1/29/2011 8:10 PM (GMT -6)   
Cupcake,

Welcome to Healingwell.

I can only speak for myself - an engineer. Without taking daily measurements I would not have noticed my improvement. It was very encouraging for me to see the leak rate drop a little each day. I even plotted it!
It helped psychologically. Later on, it helped me decide on the need for followup surgery.

Jeff (18 months and still taking data)

You can let him weigh the pad on the kitchen scale. And don't forget to leave the seat UP! My wife did it as a sign of support.

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 1/29/2011 9:37 PM (GMT -6)   
Cupcake, it took me months, and I didn't mind it a bit. Everytime I changed a pad I reminded myself that the alternative, dying from PCa, was a certain way to be dry --- dribbles were a small price to pay for life! I hope your husband can learn to laugh at his predicament, and enjoy life. No matter how fussed he gets, it won't get him dry a day earlier. And if he just goes with the flow (sorry about that) he'll soon learn it's no big deal and enjoy life to the fullest.

Bottom line: Either cancer --- being dry, or not in this case --- takes over your life, or you put it into perspective and not allow it to take control. That's easier to do when you realize that your sphincter doesn't care. You can be having a great hairy fit, and it just don't give a flying fuddle duddle. It just is. And when it's ready to do a good job clamping, it will. Not a day before. Not a day later. It just don't care what you may, or may not, think about it. Pity, perhaps, but true.

Sheldon Aka Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Ger42
Regular Member


Date Joined Apr 2010
Total Posts : 189
   Posted 1/29/2011 9:41 PM (GMT -6)   
3+ months and I'm on 2 pads a day more when the temps here in south Florida drop below 40 degrees. Better than wearing a diaper or dying from cancer.
Age 68 weight 185 height 6'
Samples taken 4/19/2010 sent to Bostwick
3 out of 12 samples cancer
1) gleason score 3+3 involving 65%
2) gleason score 3+3 involving 65%
3) gleason score 3+3 involving 10%
PSA 3.5 Mar 19
PSA 2.5 Apr 4
Bone scan clean CT scan clean
Da Vinci 10/12/2010 DR Paul Kahn all nerves spared
Home 10/19/20
Cath out 10/22/2010
Prostate 56 gm. Gleason grade 3+4 = 7
2 MO PSA 0.0

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 1/29/2011 9:42 PM (GMT -6)   
cupcake - after my catheter came out (21 days after surgery) - I would leak heavily every time I moved ( 4 pads a day - 1-2 underwear changes)
- I regret not starting a walking routine as part of the post-op rehab -but I did do the kegels and am now ( 14 months post op) down to 1 pad per 24 hour period....

- the most encouraging advice I read here at HW was that it takes time for the muscles and nerve endings to heal up and start communicating with each other again - and from what I read things start to get better at week 14 post surgery ... at week 15, I was finally able get out of the car without pissing my pants .... after that , and with a new self-confidence, I was able to be more mobile and in time, drier and drier.... it ain't perfect, but I am content...
hugs
BRONSON
Age: 55 - gay with spouse of 14 years, Steve
location: Peterborough, Ontario, Canada
PSA: 10/06/09 - 3.86
Biopsy: 10/16/09- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/09
Pathology: pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA: 04/08/10 -0.05 -Zero Club
PSA: 09/23/10 -0.05 -Zero Club
PSA: 03/12/11 - TBA

Pocketman
Regular Member


Date Joined Aug 2010
Total Posts : 121
   Posted 1/29/2011 9:58 PM (GMT -6)   
Cupcake - Recovery from PCa treatment is different for each of us. There doesn't seem to be a schedule. Our plumbing goes through a lot of trauma during surgery, and some of it is now gone. I am 12 weeks post surgery and down to one pad per day. Some days are worse than others. 2-3 days last week I was practically dry. Point is, have him keep the faith and performing Kegel exercises. It's important to build up the pelvic floor muscles that men do typically use that much.
Age 61, Diagnosed July 2010
PSA 04/09 - 2.5; 05/10 - 3.7; 07/10 - 4.7
DRE and Ultrasound - Negative
Size at biopsy - 32 grams
T1C, 3+3=6, 1 core of 12 60% positive
da Vinci nerve sparing RP 10/29/10
Post op biopsy indicated bilateral Gleason 6 tumors
Continent 90% and hopeful
Minor ED - 85% naturally, 95% with Cialis
6 week PSA - "undetectable"

pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 1/29/2011 10:24 PM (GMT -6)   
Hi Cupcake,
I was 6.5 hours in surgery, the surgical team says it was from complications due to the size of my prostate. Prior to surgery I had great difficulty relieving myself. Sometimes I would try and nothing would come out.

After surgery, and removal of my catheter, there was no stopping the flow. The only time I had control was when I was sitting down or lying down. I was using 10 to 12 super absorbent pads per day. At work a trip to the men's room often resulted in overwhelming the pad. It was a really difficult time.

I resorted to a condom catheter for several months. Gradually I found I was gaining control until the day I was able to return to using pads. Little by little the number of pads I needed per day went down until after 15 months I was able to give them up entirely.

At this time I am still dry, I don't take medication for anything, and I feel good. There was a time when I really felt I would never be continent. Patience and perseverance, doing my kegals and a regular exercise program is what I believe brought me to this point.

Wishing you the best of luck,
Bob
Age 71, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin
Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative
Seven PSA tests undetectable, latest Aug 2, 2010
Pad free beginning Mar. 18, 2010!

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2217
   Posted 1/30/2011 4:27 AM (GMT -6)   
Cupcake,

One week after catheter removal is very soon to see much improvement.

Like Jeff I collected data, not as frequently, but it really helps to see figures on paper.

Not only is leaking better than dying of cancer, but I think all of us found that leaking in the weeks after the catheter had been removed was much easy to cope with than the uncomfortable days and nights when the catheter was still in.

This is a journey of stages. The tests, biopsy, diagnosis, decision, surgery and catheter stages are already behind you, you are now slap bang in the middle of the worst part of the leaking stage, and will soon be moving on, erectile function will I am sure be one of the next stages to tackle.

Walking is good, but don't overdo it, walking too fast or with very long strides used to make me leak more. Also if I had two one mile walks I didn't leak, whereas one two mile walk could get very damp. (My catheter was removed in August so it was very pleasant weather to be getting out for a walk and I was lucky to be able to avoid it being boring as there was some major road construction work going on near my appartment I was able to walk round watching the work each afternoon. On other occasions I'd go with someone, such as a neighbour and their dog)

As for Kegels, yes you need to do them, but it's counterproductive to do too many. The fact that ten squeezes ten times a day is good does not mean that twenty squeezes twenty times a day is better. You uro department should be able to help make sure you can be told if you are doing the Kegels the right way. (Several people at HW have found out they were not doing it right)

If you stick to aiming for an improvement, rather than pefection, then you will succeed.

Alf
Born Jun ‘60
Apr 09 PSA 8.6
DRE neg
Biop 2 of 12 pos
Gleason 3+3
29 Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
17 Nov 09 PSA 0.1
17 Mar 10 PSA 0.4 sent to RT
13 Apr CT
66Gy 28 Apr to 11 Jun 10
Tired + weird BMs
14 Sep 10 PSA <0.1
12 Jan 11 PSA <0.1
Erection OK

natural44
Regular Member


Date Joined Dec 2010
Total Posts : 172
   Posted 1/30/2011 12:58 PM (GMT -6)   
Everyone is going to be slightly different, but there are things he can do to help the process. walk, walk, walk! and try 250mg magnesium in the mornings. the magnesium is a smooth muscle relaxer and help with aches and pains besides what it does for bladder control. after surgery the walls of the bladder are thicker than avg cause of the trauma from surgery this creates small bladder and one that can not hold much pressure. relaxing the bladder walls with the magnesium and walking will help. as well as keep doing those kegals!
age 44 when diagnosed 45 now
RRP 9-28-10
gleason 3+3=6
pathology report all clear
11-1-10 PSA 0.02
3 month PSA 0.00
bladder control 3 weeks post cath.
Osbon pump works great!
some noctural erections stated 12-01-10, but not very strong ones.
5mg Cialis daily 1-3-11 able to get short semi erections(60-70%) with effort daily
Dr. R. Saint in Tulsa did my procedure, I do NOT recomend him!!

natural44
Regular Member


Date Joined Dec 2010
Total Posts : 172
   Posted 1/30/2011 12:58 PM (GMT -6)   
Everyone is going to be slightly different, but there are things he can do to help the process. walk, walk, walk! and try 250mg magnesium in the mornings. the magnesium is a smooth muscle relaxer and help with aches and pains besides what it does for bladder control. after surgery the walls of the bladder are thicker than avg cause of the trauma from surgery this creates small bladder and one that can not hold much pressure. relaxing the bladder walls with the magnesium and walking will help. as well as keep doing those kegals!
age 44 when diagnosed 45 now
RRP 9-28-10
gleason 3+3=6
pathology report all clear
11-1-10 PSA 0.02
3 month PSA 0.00
bladder control 3 weeks post cath.
Osbon pump works great!
some noctural erections stated 12-01-10, but not very strong ones.
5mg Cialis daily 1-3-11 able to get short semi erections(60-70%) with effort daily
Dr. R. Saint in Tulsa did my procedure, I do NOT recomend him!!

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7080
   Posted 1/30/2011 1:27 PM (GMT -6)   
Regarding Walking and Kegels -
 
I found a balance that seems associated to a change for the better.
 
Once I could walk for longer periods, I realized I needed to do multiple walks (such as one morning, one afternoon), rather than do it all at once. That worked well for me (I live in a community with a common mail stop, so I quit stopping if I was driving in at night, and started walking back each evening).
So once (30-45 minutes) morning and evening became the norm.
 
Then I realized (with some courtesy consults with a physical therapist who works with the hospital where I had my surgery and one of the support groups I frequent) that I was doing too many Kegels, and over too short a time. I was doing 5 sets of 10 a day (Uro's original suggestion), leaking like the end of the world by afternoon, and was working toward more, but her advice was to back down to 4 sets. We finally came to a balance at 3 - 4 sets.
 
Eventually I worked into a routine -
Morning walk (1 mile +/-)
Morning -1 set of 10 kegels, held 10 seconds each, with 10 seconds relax between each.
Noon - 1 set of 10 kegels, held 10 seconds each, with 10 seconds relax between each.
Mid afternoon - 1 set of 10 kegels, held 10 seconds each, with 10 seconds relax between each.
Late afternoon walk (1 mile +/-)
After the walk, a last set of Kegels.
 
Within a week things improved significantly. Are the events related? I believe so, but like all of this sort of thing there is no hard and fast proof.
 
You will see suggestions of 90-100 (10 sets) per day - that did not work for me.
Another valid suggestion appears to be mixing short and long Kegels, meaning sets of 5 - shorter hold (3-5 seconds max), but same 10 seconds rest between) alternated with the long sets. The idea is that there are two sets of muscles involved, and they need different training. I have tried that as well, alternating. No real evidence that it made a difference for me.
 
Some guys are dry from day 1 without ever having done a single Kegel - that wasn't me.
 

Post Edited (142) : 1/30/2011 11:30:48 AM (GMT-7)


arizonaguy58
New Member


Date Joined Jan 2011
Total Posts : 7
   Posted 1/30/2011 11:11 PM (GMT -6)   
Cupcake,

I have been on this forum for only a few days and have learned so much. I had RP on 10/25/10. I have an excellent doctor and the hospital, Banner Good Samaritan in Phoenix was amazing. Fifteen days and out with the cather. I was dry that night. Only troubles are late in the day when I cough. I am down to one pad a day. For long all day outings I wear a thicker pad. For work and such I ware a very small thin pad.

One thing that has helped me is that I make sure I go to the bathroom every two hours. Walking helps and I just purchased a whole body vibration machine. That seems to help even more as in the last two week I am able to control when I cough. I have asthma and if I cough really hard I get a bit wet. Now if I feel a cough coming on I can hold my muscles and not even a drip. I call it doing a kegel on the fly.

When I first learned about having cancer my wife offered a lot of support. She found the book by Dr. Walsh from John Hopkins. We learned so much. After the surgery so much changed. I was just so glad to be alive. The leaks, the pains, the problems with sex all are small and as I learn more I am getting a better idea of what to expect.

This disease cast such a shadow over the lifes of men and their better halves. One of my wife's good friends husband was diagnosed with PC last September and for the longest time he would not acknowledged that he needed to deal with the cancer. It wasn't until after I came back from my surgery and he saw my scare did it become real. Joe went in just over two weeks ago. He had the seeds. For now he has no troubles...

One thing I have noticed is that this disease is so widespread. Most of the men that are diagnosed with this are much older and of a different generation. They don't always want to be vocal about something so personal and intimate. This forum has many of all ages and all kinds of outcomes. I just wish I would have found this before my biopsy, but thats another post.

Glad you are here and helping out your husband. My wife's support is truly priceless. Tell your man it will get better.

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2217
   Posted 1/31/2011 5:44 AM (GMT -6)   
For the record: my remark about "ten kegels ten times a day being okay" was a bit of a generalisation. As others have pointed out that too may be too much.

I think that what makes the difference is if you just do a few four or five times a day: eg before you reverse out of your garage, or when waiting at a particular stop light on the drive to work, or when in the lift, or when brushing your teeth, or via whatever routine you choose to make doing it become it easy.

Alf

Pocketman
Regular Member


Date Joined Aug 2010
Total Posts : 121
   Posted 1/31/2011 10:01 AM (GMT -6)   
I am taking 250mg magnesium daily and "officially" doing three sets of 10 Kegels daily. Hold for 10 seconds and rest for 10 seconds. I find myself doing additional at various time during the day (i.e. waiting for a traffic light). I am fairly certain I was previously overdoing it and the tired muscles leaked in the evenings. Or, I may not have been sufficiently healed.

For several weeks nothing seemed to help. Now, at 12 weeks, I am seeing some positive results. I think I've read where some guys see improvement fairly suddenly. My experience has been an occasional good and an occasional bad day. The good days are becoming more frequent.
Age 61, Diagnosed July 2010
PSA 04/09 - 2.5; 05/10 - 3.7; 07/10 - 4.7
DRE and Ultrasound - Negative
Size at biopsy - 32 grams
T1C, 3+3=6, 1 core of 12 60% positive
da Vinci nerve sparing RP 10/29/10
Post op biopsy indicated bilateral Gleason 6 tumors
Continent 90% and hopeful
Minor ED - 85% naturally, 95% with Cialis
6 week PSA - "undetectable"

Dirtmover
Regular Member


Date Joined Apr 2008
Total Posts : 158
   Posted 2/1/2011 12:18 AM (GMT -6)   
hello cupcake, recovery is difficult mentally as well as physically, just to give you some good hope , i leaked for about 8 weeks ,and then almost like someone turned the faucett off at 10 weeks i was dry , i still and might always leak alittle after i urinate, but overall i ahve 98 percent total control , good luck guys , your hubby will do well,,,,,,,dirt
Diagnosed November 2007   (43 years old )
PSA 3.9 / Gleason 6 / TC1 6 cores 1 shows 25%
Sugery scheduled 5/29/08 - City of Hope - Dr. Mark Kawachi
 "First show of the day"
 and now for the new ive been waiting for
 FINAL PATH REPORT:gleason upgraded to 3+4 T2c bilateral disease,tumor involvment 5%
extra prostatic extention:absent
seminal vesical invasion :absent
pathological staging:pTNM pT2 ORGAN CONFINED
margins free of carcinoma
usable erections ;6-6-08 with little blue pill
continence; 1 pad a day, dry at night
continence a non issue at 10weeks
 1 year p.s.a. undetectable
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