Has anybody's incontinence improved after 9 months?

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cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 3/16/2010 1:29 PM (GMT -6)   
Hi Guys,

There have been several threads here lately about the sling procedure. At what point someone just gives up on his leaking and decides to do it seems to be a very individual decision that has a relationship to his patience, or work requirements, or tolerance to the interference in his quality of life. As a now long term leaker (five months) I am beginning to ask myself how much longer am I willing to put up with this. I also am in contact with several other guys who are going on 6, 7, or 8 months with at least some leaking. We all have basically the same question.....if the odds are that 90% of post-prostatectomy patients get to be pad-free at 12 months, is there really much chance of improvement after 9 months? Does it make any sense to continue hope after 9 months?

So my question here for the veteran leaker brothers is: did anyone who was leaking several pads/day actually improve after 9 months to, say,one light pad or even no pads?

Any responses appreciated,

Steve

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 3/16/2010 2:06 PM (GMT -6)   
It took me 8 months. I was down to 1 or 2 pads in 6 months.

Personal opinion is a year would seem a reasonable cutoff, based on what I read here.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4823
   Posted 3/16/2010 2:18 PM (GMT -6)   
I like to keep bring this up....At my 3 month post surgery visit - my surgeon said he wanted me to be pad free by the next visit in 3 months.
 
He said it a way that made me think I had a choice in the matter. Two days later on Saturday I didn't use a pad and haven't worn one since.
 
Mind you, I was barely a 2 pad a day guy at 3 months..but I think the "Mind over Pad" worked for me. Maybe it can work for you too.
Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 3/16/2010 2:40 PM (GMT -6)   
Wearing tan slacks helps too !
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 3/16/2010 9:01 PM (GMT -6)   
Took me over a year. I used one pad for the last three or four months, more before then. There were three things that I feel helped. Walking a lot. Losing wait. And when I was only a light leaker, I stopped wearing a pad.

Don't lose hope.
Father died from poorly differentiated PCa @ 78 - normal PSA and DRE
5 biopsies over 4 years negative while PSA going from 3.8 to 28
Dx Nov 2007, age 46, PSA 29, Gleason 4+4=8
Decided to participate in clinical trial at Duke - 6 rounds of chemo (Taxotere + Avastin)
PSA prior to treatment 1/8/2008 is 33.90, bounced on 1/31/2008 to 38.20, and down at the end of the treatment (4/24/2008) to 20.60
RRP at Duke (Dr. Moul) on 6/16/2008, Gleason downgraded 4+3=7, T3a N0MX, focal extraprostatic extension, two small positive margins
PSA undetectable for 8 months, then 2/6/2009 0.10, 4/26/2009 0.17, 5/22/2009 0.20, 6/11/2009 0.27
ADT (ongoing, duration TBD): Lupron started 6/22/2009
Salvage IMRT to prostate bed and pelvis - 72gy over 40 treatments finished 10/21/2009
PSA 6/25/2009 0.1, T=516, 7/23/2009 <0.05, T<10, 10/21/2009 <0.05, T<10


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 3/17/2010 4:00 AM (GMT -6)   
I'm at 8 months and still leak 3-4 pads per day. My leaking can be as little as 10 oz per day (250 ml) if i am quiet, or 15 oz (400 ml) if I am active. I'd sure like to know if anyone recoverd naturally from that level.
I recall about 6 months ago another long time leaker was scoped out and found to have scar tissue that was blocking the sphincter causing a leak. His Uro said no amount of kegels or other exercise would have fixed it. The tissue was removed and he was fine.
Does anyone here remember who that was?
Jeff - the leaking one.
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 6=3+3. Bone and C/T scans neg.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (Try cutting down on fluids. Bad idea. I know.)
12/11 5 months: Still 3 pads per day. 400-450ml/day
2/26/10 7 months: Still 3 pads but leak is now 320 ml (5 day avg.)
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05.


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 3/17/2010 8:37 AM (GMT -6)   
I recovered my continence fairly quickly so I cannot share any personal experience but I can tell you what the PA in my urologist's clinic told me. We were talkiing while my penile implant was being activated and I was asking him about how long should men wait before going with some type of intervention. While I was specifically referencing implants he told me that a year for leaking was when they would start suggesting a sling. It depends some on whether the leakage is stress related(coughing, laughing hard, picking something up, etc) or was occurring without any cause. The day of my penile implant surgery my surgeon was also doing two slings and another penile implant.

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, 6/25/07, 1/8/08
No more pads as of 1/13/07
Began injections in April '07
 


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 3/17/2010 3:37 PM (GMT -6)   
Thanks for all the replies. Especially Geebra who said just what we wanted to hear. Have no choice but to continue the waiting game. Darn, I always thought I'd be dry by now.

Steve

kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 3/17/2010 8:48 PM (GMT -6)   
I would wait a year. You never know how your body will heal. Hang in there.
KW
    43 at Dx and Surgery (RRP)
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
     Dec. 2006 – Oct. 2008 Cystoscope, Two Collagen injections,Second Opinion   
    Consultation for Incontinance at OU Medical Center, Bio-Feedback       
    training, Chiropractic, Accupuncture , AdVance Male Sling, Two More Collagen 
    injections, AUS Installed and Activated (Dr. Morey at UT Southwestern Dallas TX)
    All to try to resolve incontinence (using 6-8 Depends Guards a day)

    To Date All PSA's 0.00.

   http://www.healingwell.com/community/default.aspx?f=35&m=721171

    http://www.healingwell.com/community/default.aspx?f=35&m=978691


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 3/18/2010 11:41 AM (GMT -6)   
After 1.5 years, I still leak enough that I want to wear one pad daily - a thin woman's-style pad. I was at the Urologist for my twice-yearly check-up (PSA 0.0) and spoke to him about the leaking and he told me there's no standard answer for this, only statistical data collected by researchers (such as himself). But, my leakage has decreased after the 9-month and 1 year periods . . . and I don't plan to do much else but wait for it to get better, since I now expect to live a longer life (with the cancer removed).

Age:  60 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample (Gleason's 3+3=6)

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci; Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL; Dr. Robert Nadler, Urologist/Surgeon

Post-Op Gleason's:  3+3, Tertiary 4; Margins:  Free ; Bladder & Urethral:  Free

Seminal vesicles:  Not involved; Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%; Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1 light (woman's style) pad per day)

ED: Combination of Cialis and MUSE (alprostadil) once weekly: started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0; 9/09: 0.0; 3/10: 0.0

 


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 3/18/2010 5:41 PM (GMT -6)   
Thank you Mavica for the hopeful reply. If you don't mind, how much were you leaking a 9 mos.?

Steve

bcc
Regular Member


Date Joined Oct 2009
Total Posts : 46
   Posted 3/18/2010 5:53 PM (GMT -6)   
hi i must be mr frustrated after only 1 month thinking i was ok then drinking leaking .pushing leak, sneezing l ,cough l, bend to floor lbarry
PSA Aug 07 was 3, Mid 08, 3.5, mid 09, 7.27

First biopsy july 09 - t2a on left . 11 samples taken from 6 blocks. 4 blocks show positive for adenocarcinoma. 1 block 10%, 3 blocks 5%, overall gleason 3 plus 4. No perineural invasion seen. Seminal vesicles clear.

End Oct 2009, bone scan all clear, MRI shows 6mm lesion on bottom left and rest of gland diffused image. Late Nov 2009, a template biopsy of 32 from 20 sites adenocarcinoma, gleason 3 plus 4 at 10 sites; unfortunately spread over both left and right.had planned hifu treatment but spread of cancer reduced possible benefits.robotic radical undertaken by prof r kirby at the london clinic 16/2/10 in hospital 3 days .cath out 25/2/10.pathlab report -margins clear,gleason now 4/3 .tumor weight 62g tumor vol 1.7. stage now pt3a as carcinom invaded left posterior aspect 2mm .dry at night from when cath out, one or two pads a day depends on drink i think ..post op psa due 1/4/10.april fools day .


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2840
   Posted 3/18/2010 6:30 PM (GMT -6)   
very interesting thread - I am still leaking - stress incontinence - walking up stairs - standing up - bending over - ... walking is fine and going down stairs are fine but frustrating and isolating - sorta stayed to myself and inside doing my work and not getting out - gained more weight than I wanted and waist size - so whole new set of pants for summer - can't wear trackpants forever ...
- at last nights real world PCa support group the main speaker was a doctor from Hamilton, Ontario - associated with McMaster Medical Centre - he stated that if you are a leaker at 6 months -that is what you will be without intervention - such as a sling etc... and he had done over 1000 sling operations as well as ED implants.
-I am willing to wait but not forever - will consider my options in October ( 11 months after surgery - after seasonal work ends - landscape garden sales) -
-still working on it - and as others have said - there is always hope

gentle hugs ( not to squeeze you too hard)
BRONSON
.................
Age: 54 - gay - with spouse, Steve - 59
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - will go for trimix in April when I see doc
Incontinence: 3-5 pads/1-2 clothes changes/day- finally seeing improvement - March 3, 2010 - week 14 after surgery -
location: Peteborough, Ontario, Canada
Post Surgery-PSA: to be announced - April 8, 2010
............


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 3/18/2010 8:18 PM (GMT -6)   
Hi Bronson,

You wrote: "the main speaker was a doctor from Hamilton, Ontario - associated with McMaster Medical Centre - he stated that if you are a leaker at 6 months -that is what you will be without intervention - such as a sling etc... and he had done over 1000 sling operations"

The cynic in me forces me to consider the source here. The speaker makes his living installing slings. Naturally, he will err on the necessity side.

From my own daily measurements I see depressingly little change after 6 months. But, I'm not ready to throw in the towel. (I can't. I need it under my chair.)
I will most likely wait until the one year mark before going for the sling. In the meantime, I'll hope a miracle happens.
Jeff

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 3/18/2010 8:22 PM (GMT -6)   
My thoughts exactly Jeff !
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


leaky
New Member


Date Joined Mar 2008
Total Posts : 15
   Posted 3/18/2010 8:39 PM (GMT -6)   
Hi cocrgolfer,

After several years of leaking and trying several procedures, I've come to believe there must be infinite variables involved. I doubt your future can be predicated on what any of us have experienced. Still I pray the best for your recovery.

Leaky
70 when diagnosed in 10/2004, open surgery 12/2004, margins clear, pre surgery PSA 6.4, 3+4=7, cancer from apex to base left side, 30 gm prostate, right nerves spared, seminal vesicles & lymph nodes (6) removed.

ED & incontinence problems since surgery, life changing & indescribable unless you have experienced it.
Also have edema in both feet and legs, worse in right leg.
Wear thigh high compression stockings and sleep with legs elevated.

Advance male sling 03/2008, AUS and IPP scheduled 10/2008. All work done at UT Southwestern in Dallas.


waterloo
Regular Member


Date Joined Jan 2009
Total Posts : 100
   Posted 3/18/2010 10:13 PM (GMT -6)   

 Hello from dee in bc.

My husband was a least 14 month before he really had control,and that only if he did not drink to many beer's,That was and is still a promblem .Ido belive it dose have something as to what you drink and what you are doing ,shoveling ,golf ect .In time  it will all come together..

  DEIDRE


    My Husband age 54 at diagnosis
   Radical prostateectomy  in Sept 2006
  • Original Gleason 3+4=7 post op 4+3=7
  • Post Op .004
  • May08 psa 0.05
  • July08 psa 0.09
  • Oct08 psa 0.16
  • Jan09 psa 0.24
  • start"s radiation on March 12/09(33) in total
  • July 09 psa 0.4  TESTOSTERONE 15
  • SEPT 09 PSA 0.55  TESTOSTERONE 13 
  • Bone Scan Oct 19 09  CLEAR (YA HOO)
  • dec 09 PSA .52 Testosterone 13
  • March 2010 PSA .7 Testosterone 11


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 3/19/2010 4:30 PM (GMT -6)   
Jeff, a big DITTO on your comment.


Leaky, I agree about the infinite variables involved in this incontinence. However, as you seem to understand very well, the misery of leaking does cry out for some sort of hope, and if some guys get better months after surgery, then it could happen to me and other long term leakers.



BTW, how did you get along with your sling procedure?



Thanks for the kind thoughts,



Steve
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