Dry guys: PLEASE post!

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

loupdemer
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 11/26/2007 1:48 AM (GMT -7)   
I think a lot of us suffering incontinence several weeks or months post-op need to hear from those of you who have been where we are, and are dry now.

A number of people on here have expressed the idea that those whose incontinence has resolved are reluctant to post here, not wanting to make the rest of us feel bad. I think that's probably true. But the fact is we need to know you are out there.

Can we have a sort of virtual show of hands? Let's see how many responses we can generate from those of you who were still leaking at 6 to 10 weeks post-op, but are now COMPLETELY pad free.

If you were one of those few who were dry immediately post-catheter, that's always great to hear, but it seems to me you fall in a somewhat different category.

How many of you were facing disappointment or desperation a couple of months after surgery, but are now totally dry? And how long did it take you?

Thanks
============================
Positive DRE JAN 2007 at age 47
PSA 2.5
Biposy 21 MAR 2007
Diagnosis 01 APR 2007: 2 of 8 cores positive, Gleason 7 (3+4), stage T2a, focus of perinerual involvement
AUG 2007 PSA 3.3
24 SEP 2007 open Radical Prostatectomy, Bilateral nerve sparing
Surgeon: Dr. Martin Gleave, The Prostate Center at Vancouver General Hospital, Vancouver, Canada
Post-op Day 2 (26 SEP) Home from hospital
Day 6: Bowel movements resume, causing painful bladder spasms, Dr. will not prescribe anti-spasmodic
Day 8: Catheter removed, totally incontinent, began taking Cialis
Day 9: Partial erection
Day 11: Nealy normal erection
Day 12: PATHOLOGY: Negative margins, minor cancerous invasion of periprostatic space
Week 3: Dry when lying or sitting
Week 4: Leakage when standing and walking greatly reduced
Week 4: Suspended taking Cialis. Normal erections on demand. Some urine leakage with orgasm.

Post Edited (loupdemer) : 11/26/2007 1:55:57 AM (GMT-7)


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 11/26/2007 3:28 AM (GMT -7)   
Loup,

I've been reading the posts here since March 2007.

A LOT of patients here became continent between weeks 12 and 16 when at week 12 there was little if any control while walking more than 5 minutes.
I had no control at week 11 (not "completely desperate " but I entirely believed it would not change and I had prepared myself mentally to wear pads forever....)
  - and yet I was at zero pads at week 14.  It happens to a lot of RP patients.

I know from looking through posts from long ago that many people regain both Continence and Erectile Function and don't have anymore cancer issues and leave the forum.
We don't hear from them again and there is no evidence they are lurking.
As others have recently pointed out, the nature of this forum is that those that are still here generally still have problems. 

Some that regain their health do stay and try to help where they can.
Several are spouses of now healthy prostrate cancer patients.
I wouldn't dare start a list of these champions for fear of leaving someone out!
Many helped me through my darkest hours and are still here.
As you pointed out, we patients tend not to show our fears, doubts, and nitty-gritty details of our recovery to those around us.  It doesn't help us at all if we make them crazy too!
So we discuss problems here and it skews the appearance of recovery data.
Perhaps your plea will get some lurkers to drop us a note on how they are doing!
If not, you might try to mine more representative data reading old "Journeys."
Though recent comments from bluebird about threads becoming inactive over time concerns me more than a little! 
You probably should scour the net for Scientific Journal Articles.
All the recent research mentioned here is discussing
     - 95% recovery from incontinence at week 16.

I would personally recommend "elevator kegels" for you as they really helped me as I gained more pelvic floor muscle strength and coordination after week 9.  It is not just a vice grip you are building.  It is a recruitment pattern of an array of muscles that take turns supporting and communicating with your unconsciously controlled bladder valve.
(For more discussion of "elevator kegels," look for my thread "Zen and the Art of Symphonic Continence" under Other Topics in the index offered by Bluebird in helpful hints at the topo of the Prostrate Cancer page.)

Keep working on your Kegels and all of us here will hold you in
     - visions of tossing your dry pads.

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?


kdnole
Regular Member


Date Joined Jun 2007
Total Posts : 152
   Posted 11/26/2007 6:00 AM (GMT -7)   
Loup,
 
Keep the faith because things happen in weird ways. I was still wearing pads around 5-6 weeks post cath removal and one day at a soccer match somehow the pad fell out of my underwear and out of may pants there on the sidelines. Well after that I have been pad free! I will say at that point I was only wearing 1-2 thin pads a day but I had no extras with me and we were out for the day. I will also say I have not been doing kegals either and I am still dry with the occasional stress drops/leaks.   
Age 44
PSA 4.8
Gleason 3+3=6
T2
Biopsy - 3 of 12 (2@20% / 1@80%
Da Vinci 7/31/07 @ Duke
2.5 hr. surgery, released from Duke with in 14 hrs.
Saved both nerve bundles. 
Foley out 8/10/08
Positive Pathology Report 
Near left side nerve bundle
New Gleason 7
Oncology visit in the near future for radiation
Back to work 3 weeks following surgery - Sales
 
9/13/07 - 1 Post PSA Undetectable less than 0.1 
 
9/17/07 - Pad Free! 
 
10/11/07 - ED, Trimix injection .2cc Tooo much but it worked. Now on .05cc, 3 times a week
No luck with viagra or pump. 
 
11/19/07 - 5 mth. PSA 0.1 (Ouch)
12/14/07 - 1st Appt. with Medical Oncologist - Radiation here I                 come. (This sucks)  


Grover
Regular Member


Date Joined Jun 2007
Total Posts : 29
   Posted 11/26/2007 6:39 AM (GMT -7)   
Loup,
Welcome to the forum. I was pad free by 10 weeks. I wasnt very good at doing the Kegel exercises on a regular basis post op but I did do them pre op. Maybe that helped. I dont do them anymore and am still dry.
Diagnosed Jan 07
PSA 5.79
Biopsy -12 samples, positive in 4, Gleason 3+3, T1c
Age 59
Surgery (robotic) June 1 2007
Final pathology - fully contained to prostate, <2% , Gleason 3+3
No leaking 2 months after surgery (Yahoo !)
3 month PSA <0.01 (Yahoo again !)


norskie
Regular Member


Date Joined Jan 2007
Total Posts : 376
   Posted 11/26/2007 7:14 AM (GMT -7)   
Loup

I went pad free at 20 weeks post surgery and probably could have started a few weeks earlier but it was a confidence mind set. I didn't leak real bad but would require a pad or two a day and would have some stress incontinence every now and again. As Cedar stated it happened for me really in that 12 to 16 week time frame where I felt that it came around a lot. Good luck in your journey.

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 3-22-07 <.1 Undetectable
2nd Post PSA Blood Test 7/5/07 <.1 Undetectable
3nd Post PSA Blood Test 11-12-07 .2 monitoring
Next Poat PSA Blood Test Scheduled for 1-17-08
Incontenence-Pad free since end of May 07 4 1/2 months post surgery 
ED back to 95% prior to surgery - no medication required.


Ripandburn
Regular Member


Date Joined Aug 2007
Total Posts : 125
   Posted 11/26/2007 9:49 AM (GMT -7)   
I was pad free at 11 weeks. I think the bladder sling that was installed actually helped. I did the kegals for 2 months prior to surgery and I am still doing them 4 1/2 months post surgery. I can say that I always asked myself if it would ever end. I never had more than a squirt or 2 post surgery even when I did leak. Occasionally I will have some stress incontinence, or if I sit wrong, but it is never enough to go through my underwear. I feel that everyone is different with incontinence and ED issues.
51 years old
T1c 3+3=6
DaVinci July 16, 2007
largest cancer .2mm
Bladder Sling installed during prostate removal
nerve sparing with both nerve bundles intact
all cancer contained within prostate nothing near margins
PSA after 6 weeks <0.1 - undetectable
11 weeks post-op - no more pads


maldugs
Veteran Member


Date Joined Jun 2007
Total Posts : 782
   Posted 11/26/2007 4:56 PM (GMT -7)   

Hi everyone, I was dreading the incontinence when the catheter was pulled out, my Urologist said that 95% of his patients were continent after a few weeks, so that was reassuring, when the catheter was removed, I only dribbled a very small amount, but went home with a pad anyway, had a few dribbles over the next week, and one day after wearing a pad all day and not wetting it, I decided not to wear one. The first venture out without a pad was a nervous experience, I had the sensation of wetting myself but nothing was there.

Since then I am pad free, and apart for a few accidents have been continent since the first few days, I do find that doing Kegels now, aggravates the area, so don't do them anymore, and I am dry, I am about to start 36 treatments of Radiation therapy, and have been told that one of the side effects COULD be that incontinence comes back for a while, .......hope not!

Regards Mal.


age 67 PSA 5.8 DRE slightly firm Rt
Biopsy 2nd July 07 5 out of 12 positive
Gleason 3+4=7  right side tumour adenocarcinoma stage T2a
RP on 30th July,
Post op Pathology, tumour stage T3a 4+3=7, microcsopic evidence of capsular penetration, seminal vessels, bladder neck, free of tumour, lymph nodes clear, no evidence of metastatic malignancy, tumour does not extend to the apical margins.
Post op PSA 0.5 26th Sept. next PSA 26th Oct. seeing Radiation Onocologist 31st Oct. PSA 0.5 23rd October. Starting radiation treatment on 5th Dec


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1209
   Posted 11/26/2007 6:09 PM (GMT -7)   

Hi loupdemer,

Took me 57 days from catheter removal to the first day without a pad. I was 70 years old at the time, but in relatively good shape other than for the cancer. I did (and still do) my kegels regularly and walked for at least 30 minutes every day. ED has been my only lingering after effect until quite recently, but with the help of 50 mg Sildenafil that has pretty much resolved itself. So, it took me about one full year to go from operation date to full recovery, but I feel better now then I did before this dreaded cancer hit me.

Now, the only downside to this whole disease are the stressful times when my 3 monthly PSA test results are due.

Hope your recovery will be swift and complete.

All the best to you.

Magaboo


Born Sept., 1936
PSA 7.9
Stage T1C
Gleason's Score 3+4=7
Open RP 28 Nov 06
Catheter out 15 Dec 06
Dry since 11 Feb 07
1st PSA result on 15 March 07 = 0
2nd PSA result on 15 June 07 = 0
3rd PSA result on 12 September 07 = 0
 


Ken S
Regular Member


Date Joined Nov 2006
Total Posts : 120
   Posted 11/26/2007 6:53 PM (GMT -7)   
Hi loupdemer,

I was pad free after about 4 months but having positive margins I started radiation treatments a month later. As maldugs alluded to, during and after radiation treatments incontinence did return. I've been wearing one pad a day since (treatment ended 6/14/07) most of the time I'll have a couple of "spots" the size of half dollars. The other day I was shoveling some gravel for a couple of hours and my pad was half soaked, the worst it's been since last Jan./Feb.
Age 54 (2006)
PSA - 2005 - 3.2, 2006 - 3.7
Biopsy 8/06, Gleason 6 (3+3), T1c
Radical Retropubic Prostatectomy 11/3/06
Post-Op Biopsy, still Gleason 6 (3+3),
T2c, right apical margin positive
CT Scan 1/07, tumor discovered on right
kidney (unrelated to PCa)
Partial Nephrectomy 3/9/07
IMRT (37 Treatments) started 4/23/07
PSA 11/07 - less then 0.01


anniea
Regular Member


Date Joined May 2007
Total Posts : 234
   Posted 11/26/2007 10:37 PM (GMT -7)   

Hi Loupdemer,

Rick was dry at 4 months but in the last 3 weeks he has had some leaking. I try to watch for patterns and at first I thought it was when he was tired but then it started happening early in the day and we can't see any pattern as to why. He has continued to do his kegels all along but it just happens sometimes 2 to 3 times a week. Hang in there I'm sure it will get better.

Best wishes

Diana


Rick & Diana
6-30-06  PSA 2.54
1-22-07  PSA 4.98
1-26-07  PSA 5.09
Diag: 2-14-07 Gleason 8 Stage T1c PSA 5.09
Bone Scan 3-1-07 Clear
3-6-07 Triple Spinal Fusion (due to old back injury)
Radical retropubic surgery 4-2-07  Post surgery Gleason 9 Stage T3a Positive margins
4-29-07 PSA 0.02
6-9-07   PSA 0.02
7-6-07   PSA 0.03
8-1-07   CT Scan & Chest X-Ray   Clean
 9-26-2007 PSA 0.07
11/1/07 PSA 0.1


loupdemer
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 11/26/2007 10:47 PM (GMT -7)   
Thank you guys. The info you are sharing in this thread is exactly what those of us still going through early days need to know. Especially, Cedar Chopper, the way you summarized things is very very helpful. Thank you all.
============================
Positive DRE JAN 2007 at age 47
PSA 2.5
Biposy 21 MAR 2007
Diagnosis 01 APR 2007: 2 of 8 cores positive, Gleason 7 (3+4), stage T2a, focus of perinerual involvement
AUG 2007 PSA 3.3
24 SEP 2007 open Radical Prostatectomy, Bilateral nerve sparing
Surgeon: Dr. Martin Gleave, The Prostate Center at Vancouver General Hospital, Vancouver, Canada
Post-op Day 2 (26 SEP) Home from hospital
Day 6: Bowel movements resume, causing painful bladder spasms, Dr. will not prescribe anti-spasmodic
Day 8: Catheter removed, totally incontinent, began taking Cialis
Day 9: Partial erection
Day 11: Nealy normal erection
Day 12: PATHOLOGY: Negative margins, minor cancerous invasion of periprostatic space
Week 3: Dry when lying or sitting
Week 4: Leakage when standing and walking greatly reduced
Week 4: Suspended taking Cialis. Normal erections on demand. Some urine leakage with orgasm.


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 11/28/2007 10:47 AM (GMT -7)   
loup,
Cedar is right is that it normally tales 12 to 16 weeks to become dry. I actually became dry twice. At 8 weeks after catheter removal I stopped wearing pads. I would get a drop or two on my underwear at times but that was all. Then about a month after that I began painting and fixing up a house I bought to rent to my daughter. Apparently all of that activity caused something to change as my perineum started aching and I began leaking when exerting. I went back to a very light pad and wore that for about a month. Then within a couple of days the aching stopped and so did the leaking and I have been dry ever since.

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
Began injections in April '07
Undetectable PSA on 6/25/07


Hagrid
Regular Member


Date Joined Sep 2007
Total Posts : 60
   Posted 11/28/2007 7:14 PM (GMT -7)   
I went almost 5 years using about 4 to 6 pads a day. This was due to the removal of the neck of my bladder. I fought the depression, the stress, the accidents, and finally had enough. I had an AUS installed, and have been vitually completely dry since. No more worries, no more accidents. And I'm saving a fortune on pads.
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
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 11, 2017 12:30 PM (GMT -7)
There are a total of 2,904,049 posts in 318,715 threads.
View Active Threads


Who's Online
This forum has 158118 registered members. Please welcome our newest member, yoho.
393 Guest(s), 14 Registered Member(s) are currently online.  Details
NicHostetler, Psilociraptor, Kct, yoho, eldonkey, 1000Daisies, Laugh and live, NiceCupOfTea, ASAdvocate, cb7, Chrissy01, Szabo246, Village Crazy Lady, Traneboy