New member introduction

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Arch
Regular Member


Date Joined Jun 2010
Total Posts : 192
   Posted 6/29/2010 3:17 PM (GMT -6)   
greetings everyone,
 
I came across this forum about a montha ago and have decided to post after reading some useful information. I had my RRP surgery May 18, had the catheter removed 10 days later and am progressing slowly with improvements in most areas. I have however suffered from fairly severe muscle spasms in the area between my rectum and scotum, these have eased in the last couple of weeks but still plague me when I squeeze prior to standing. I still have a dull pain in the bottom when sitting and leak urine freely when standing.
The urine leakage is my real issue, its now 5 weeks since the catheter was removed and I still use about 8 pads a day (medium absorbancy). I seem to be able to hold most urine while lying and sitting but leak constantly upon standing. If I go for a 2 mile walk I fill a pad up, is this something that will correct with time? I've been doing the kagels religiously in sets of 10, perhaps 6 to 8 times per day, also drink at least 6 glasses of water per day as recommended by the continence clinic.
ED seems to be coming along, with stimulation in the shower I achieve maybe 60-70% erection but not firm enough to do anything with...I assume this is OK for 6 weeks post surgery and am encouraged.
 
I'm wondering iof the muscle spasms are interfering with the urine control...anyone else had this experience.
 
thanks for the generous sharing of personal situations.
 
Age 56
PSA 3.5 and 4.75 Jan 10
Biopsy positive both sides 2/5 per side May 2, 2010
Gleason 3/4
RRP May 18, 2010
nerve sparing procedure
Lymph nodes and vas deferens clear
catheter out May 28, 2010
ED maybe 70% but not "stuffable", no drugs or apparatus
Continence, 8 pads per day, down from an initial 10-12 when catheter removed
 

Post Edited (Arch) : 6/29/2010 6:39:09 PM (GMT-6)


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 6/29/2010 3:37 PM (GMT -6)   
Hi Arch...welcome here to HealingWell

For the most part you sound like you are on the normal recovery from surgery. Some of the muscle spasms maybe in part related to the Kegals you are doing. Like any muscle, you can overwork the muscles and they will become tired and cramp up. Strenghtening those muscles will take time, so just keep at it.

For what it is worth, it took about 7 months before I could go without a pad. Each day will get better with some set-backs along the way. More of two steps forward and then a step backwards...regardless it was progress.

ED progress may take a little longer, however you seem to being doing pretty good with only a few weeks out. One thing, don't expect to be like it was before surgery. That won't happen, close maybe, but not the same.

Good luck and ask all the questions you want. Thanks for the post.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009     .06
                   6 month Apr 2009     .06
                   9 month Jul  2009     .08
                 12 month Oct 2009     .09 
                 18 month April 2010   .19


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1211
   Posted 6/29/2010 3:53 PM (GMT -6)   
Hi Arch and welcome to our little club. Sorry that you have to be here, but glad that you found us.
You're fairly early in the recovery process and are progressing at a fairly 'normal' pace. There is a wide range of archiving continence among us guys, but a good average is probably around 2-3 month after catheter removal. Some are dry sooner; some later; a few have more problems becoming continent. Ed seems to take a bit longer for most of us, but here again, the time seems to vary from patient to patient.
You seem to be doing quite well. Just take it easy for a few more weeks and give your body a chance to heal from this major surgery.
All the best to you in your recovery.

Magaboo
Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
Open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 sessions - 66 Grays) on the 19th Dec., 08.
PSA in Jan., 09=0.05; July 09=<0.04; JAN 10=<0.04


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 6/29/2010 4:43 PM (GMT -6)   
Arch, welcome!

I don't think you need to worry about the pain, but checking with your doctor is always a good idea.

On being dry, my opinion is that you'll be as dry as a desert in a year --- and likely far sooner than that, but I can't say when. I remember leaking like there was no tomorrow and sure I'd be wetting for the rest of my life. But, bit by bit, the fawcet started to turn down, and then off. Nice!

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 test again less than 0.02
PSA on Jan 8 less than 0.02
PSA on April 9 less than 0.02 
 
  


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/29/2010 6:30 PM (GMT -6)   
Welcome aboard, Arch

I would agree with the other posters, you are still doing pretty good early in your recovery from a very major and complex surgery. Yes, both the incontinence and the ED can be frustrating to deal with.

As far as the keagals go, moderation is the better choice. If you overdo them, its counter productive and you tire out the very muscles you are trying to help, and thus have the appearance of making the problem worse, or at the least, ineffective. This gets true as the day wears on.

Good luck.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


fertree
Regular Member


Date Joined Jun 2010
Total Posts : 118
   Posted 6/29/2010 7:19 PM (GMT -6)   
Hi Arch,


I had my surgery 10 days before you, and understand your frustration. I am in the same (leaky) boat. The urine leakage is exactly as you describe, although I don't have muscle spasm. I also don't follow a rigorous Kegle exercise program. Unfortunately, I had nerve bundles removed, so I don't even think about erections, which gives me the opportunity to think solely about the incontinence issue! Everyone says to be patient, but that's not in my psyche. On the bright side my first PSA test was less than.01. Hang in there. It beats the alternative!
Gus

Drums
Regular Member


Date Joined Mar 2010
Total Posts : 134
   Posted 6/29/2010 7:37 PM (GMT -6)   
Arch,
My Kegel instructions were to do three sets during the day. One set in the morning standing, in the afternoon sitting, and in the evening laying down. A set is: 10 contractions held 1 second each, and then 10 contractions held 10 seconds each.
 
This routine made sense to me since it stressed the sphincter muscle in different positions and gave it periods of rest. Just like any other muscle, it needs to be worked, but there also needs to be some recovery time.
Age 52 at diagnosis, father died of PCa
 
PSA: 10/16/09 - 2.8; 1/11/10 - 3.8
Biopsy 11/25/09, 11 core samples - HG PIN on right side
Biopsy 2/17/10, 11 core samples - left side, adenocarcinoma, Gleason 6, one core at 5%
Notified of dx on 3/12/10 (27th wedding anniversary) via phone by the nurse! (dropped this Uro!)
MRI 3/17/10 and bone scan, 3/23/10, indicate: gland volume is 27mL, PCa is confined to prostate, seminal vesicles and vas deferens are unremarkable.
 
RALP conducted 19 May 2010 by Dr. Lee at U. Penn Presbyterian
Pathology report on 10 Jun 2010: Gleason 6; gland involvement by carcinoma < 2%; tumor in peripheral zone on BOTH sides; no capsular, extracapsular extension, lymph node, or seminal vesical involvement; and no positive margins.
 
Incontinence: first four days after catheter removal - only1-3 pads/day (but urethra was inflammed); 2d week (after inflammation) - 8-10 pads/day (sometimes more!); 3d week - 4-6 pads; 4th and 5th weeks - 3-4 pads. Of course, all this depends on how much I stand and it gets worse later in the day.
 
ED: started the pump the 4th week after the catheter removal. Four sets, twice a day per instructions. Not as fun as it sounded.


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7084
   Posted 6/29/2010 9:03 PM (GMT -6)   
Arch,
Sorry you're here, but welcome all the same.
Drums described the Kegel routine similar to mine - 3 sets of 10 rounds - hold 10 seconds, release 10 seconds. Morning, noon, night, one set each. Walk a half mile or so with each set.

I went to 5 sets, and it was like opening the faucet up again, backed down to 3, things got tolerable again.

I am 8 months from DaVinci, at least one pad, sometimes two per day. I was at 7-8 per day for about 4 months, then dropped to three, now ...

But not leak free in any definition of the phrase yet.

Timm
Regular Member


Date Joined Feb 2010
Total Posts : 83
   Posted 6/29/2010 9:23 PM (GMT -6)   
Arch
 
   Da Vinci  4/14 down to about 2 pads a day. It's always that morning 2 mile walk that wipes out the first pad, they say your suppose to hold a 50% kegle when walking, I can not do that, going to try those stand up kegles another member mentioned. You can over due the exercises and cause yourself pain, in the area you described. When doing your kegles, instead of counting off 1-1000- 2-1000 I use a stop watch now, it seems to go alot faster and the pain and hemriods went alway, also I hold it down to 5 sets a day.
  
   I"m about a month ahead of you and I do see approvement, so hang in there, I keep telling myself this is the grunt it out part of are trip, things could be alot worst. You sound like your doing great.     Good Luck -   Tim
58 yrs.
PSA 6.94  12/10
Bio. 8 of 12 cores pos. 2/1
Gleason   3+4=7
Da Vinci    4/14
Tumor volume  9%
Extraprostatic extension- within margins
Margins    clear
T2c NO Mx
PSA. 6wks. post sugery .01


Arch
Regular Member


Date Joined Jun 2010
Total Posts : 192
   Posted 6/29/2010 10:34 PM (GMT -6)   
I'm pleasantly surprised by the number of responces I received to this initial post, not only were there more than I had expected but a number were in very similar timeframes and enduring almost the same frustration I'm experiencing. Many thanks to all who responded...it seems I may be overdoing the Kagels excercises. I've had a return of pelvic and penis spasms today so I think I'll cut back on the squeezes for a few days.
 
 
many thanks to all who shared their story, I'll keep you updated on my progress and hopefully see enough improvement in my own situation to eventually provide support to others.
 
Arch
 
 
Age 56
PSA 3.5 and 4.75 Jan 10
Biopsy positive both sides 2/5 per side May 2, 2010
Gleason 3/4
RRP May 18, 2010
nerve sparing procedure
Lymph nodes and vas deferens clear
catheter out May 28, 2010
ED maybe 70% but not "stuffable", no drugs or apparatus
Continence, 8 pads per day, down from an initial 10-12 when catheter removed
 
 
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, September 23, 2018 6:39 PM (GMT -6)
There are a total of 3,005,915 posts in 329,282 threads.
View Active Threads


Who's Online
This forum has 161809 registered members. Please welcome our newest member, DragonM.
272 Guest(s), 7 Registered Member(s) are currently online.  Details
Psilociraptor, M. Lowe, cashlessclay, Mark FW, 61Impala, RobLee, iPoop