Leakage in the evenings...thoughts

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IKE-D
Regular Member


Date Joined Jun 2009
Total Posts : 77
   Posted 8/13/2009 1:25 PM (GMT -6)   
Hello Guys,
 
I am making good progress on the incontinence front - very good progress (dry 98% of the time). However, I notice that around 5-6pm most evenings is when some leakage takes place when I am walking about. I feel a bit tired around that time..has anyone else experienced this?  Is this part of the recovery process?
>Age 41 (At Dx-July 05) -Psa during annual physical went from previous 2.8 to 3
>Biopsy by 'primary' Urol Aug 05 - Gleason 6 low grade. 2nd opinion at  Hopkins confirmed Dx
>Chose Active Surv (AS)- modified diet etc.
>Around Oct 07 Psa moved up to 5.5. I decide to treat at Hopkins. Not sure what kind yet. My doctor decided on re-biopsy first.
>2nd Biopsy Dec 07 at Hopkins was NEGATIVE for Pca! Nothing found in 14 cores!
>'Primary' Urologist baffled. Planned a saturated biopsy (22 cores) to settle issue once and for all. I wasn't going to do 22 cores wide awake!
>July 07 - Did MRI just for comfort. Nothing significant found. No spread. I'd live! Still in AS mode.
>July 08 - Saturated Biopsy performed. Cancer confirmed again (of course, you took 22 cores)! Same Gleason score, same grade, similar numbers but Urol says treat very soon! I am thinking not so fast - numbers are same and you told me it means not aggressive! In any case I agreed with Urol that I will go the way of the Seeds. I research seeds more and I don't like it.
>July 08 - Dec 08 I re-lapse back into AS mode but seriously researching/considering treatment options beside surgery - went on to Mass Gen and Georgetown to explore proton therapy and Cyberknife respectively. Anything but Surgery! Both experts who are about my age were unanimous in strongly declaring they will chose surgery 'if they were me'. In addition, I learn that if either if these radiation methods (and seeds too!)  failed, no backup plan (or will be complicated)! I got the message!
>Jan 09. Went back to see my doc at Hopkins. I decide to put my fate in the hands  of the 'Da Vinci Robot' then!
> May 09. Had surgery. some Pain and discomfort but normal. Pathology all clear. Gleason 6 as before. Feeling very lucky. I gambled (based on my numbers and got 4 more years!) on the slow nature of the cancer and took my time. Very happy I finally did it. Hoping for a great recovery of all 'key' functions. Great wife and family helping out.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/13/2009 1:29 PM (GMT -6)   
yes, i experienced the same thing around that time, my doctor said it was normal, the muscles that we control to stay dry get plain tired after all day, and kind of give in a little. Listen to your body and get off your feet more if you can.

david in sc
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


IKE-D
Regular Member


Date Joined Jun 2009
Total Posts : 77
   Posted 8/13/2009 1:50 PM (GMT -6)   
Thanks Dave. That's good to know.
>Age 41 (At Dx-July 05) -Psa during annual physical went from previous 2.8 to 3
>Biopsy by 'primary' Urol Aug 05 - Gleason 6 low grade. 2nd opinion at  Hopkins confirmed Dx
>Chose Active Surv (AS)- modified diet etc.
>Around Oct 07 Psa moved up to 5.5. I decide to treat at Hopkins. Not sure what kind yet. My doctor decided on re-biopsy first.
>2nd Biopsy Dec 07 at Hopkins was NEGATIVE for Pca! Nothing found in 14 cores!
>'Primary' Urologist baffled. Planned a saturated biopsy (22 cores) to settle issue once and for all. I wasn't going to do 22 cores wide awake!
>July 07 - Did MRI just for comfort. Nothing significant found. No spread. I'd live! Still in AS mode.
>July 08 - Saturated Biopsy performed. Cancer confirmed again (of course, you took 22 cores)! Same Gleason score, same grade, similar numbers but Urol says treat very soon! I am thinking not so fast - numbers are same and you told me it means not aggressive! In any case I agreed with Urol that I will go the way of the Seeds. I research seeds more and I don't like it.
>July 08 - Dec 08 I re-lapse back into AS mode but seriously researching/considering treatment options beside surgery - went on to Mass Gen and Georgetown to explore proton therapy and Cyberknife respectively. Anything but Surgery! Both experts who are about my age were unanimous in strongly declaring they will chose surgery 'if they were me'. In addition, I learn that if either if these radiation methods (and seeds too!)  failed, no backup plan (or will be complicated)! I got the message!
>Jan 09. Went back to see my doc at Hopkins. I decide to put my fate in the hands  of the 'Da Vinci Robot' then!
> May 09. Had surgery. some Pain and discomfort but normal. Pathology all clear. Gleason 6 as before. Feeling very lucky. I gambled (based on my numbers and got 4 more years!) on the slow nature of the cancer and took my time. Very happy I finally did it. Hoping for a great recovery of all 'key' functions. Great wife and family helping out.


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 8/13/2009 3:05 PM (GMT -6)   
I'm a month out of surgery and leak worse than an old canoe. I am only dry when horizontal. When I eat dinner, 6:00 pm, I sit down and everythig is fine but the second I stand up, the levee breaks.
I have tried kegeling about 10 -15 seconds before standing and that seems to give me a little more time so I can reach the backyard where I "water the grass". I cannot make it to the bathroom and certainly can't use a toilet without spraying the floor, walls, shower curtain...
PS Guys, if you hear me being arrested for indecent exposure, please vouch for me, okay? I don't want to be put on a S*x Offender list for peeing in my backyard. Believe me, s*x is the farthest thing from my mind!
(Oh what I would give for 98% dry)
Jeff
Age 56. Perfectly healthy with no problems until getting the results of my first routine PSA test on April 8th: 17.8. My GP does not believe in general PSA screening so I did not get results during my 50 year physical.
May PSA: 22.6, 3 weeks later: 23.2.
June 10 Biopsy 7 out of 12 cores positive, Gleason 6=3+3.
Bone scan and C/T scan negative.
----------------------------------------------
7/21/2009 Radical prostatectomy by Da Vinci @ University of Rochester
Left nerve gone, right spared.
----------------------------
7/31/2009: Catheter removed and Pathology report received
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/13/2009 3:40 PM (GMT -6)   
Don't forget the clamp my friend. Ok, maybe baling wire will do it also.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 8/13/2009 4:17 PM (GMT -6)   
Jeff, you said: "I cannot make it to the bathroom and certainly can't use a toilet without spraying the floor, walls, shower curtain... "
Describe what you mean by spraying on the floor, etc. Do you mean it fans out from the head of the penis, that you can't control it or hold it and aim it correctly, or what. Don't believe I've read of anyone else saying this recently.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
22 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix 30/1/20-.10ml 2X week continues
PSA's: .04 each test since surgery


pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 8/13/2009 5:09 PM (GMT -6)   
Hi Jeff,

I had severe incontinence for nearly three months after surgery. As soon as I'd get up I lost it all. I carried a container around that I could use as I got up. It saved me a lot of stress. I started wearing the Afex Incontinence System in March. Since then I've regained continence to the point of using a single pad per day, and it is fairly dry. I'm hoping to be completely dry soon.

Hang in there and with luck you will start seeing improvement soon.

Good luck,
Bob
Age 70, 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
Three PSA tests undetectable, latest July 18


Romeo
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 8/13/2009 5:46 PM (GMT -6)   
I truly think the kegals are key but you cannot overdue it.  I remember when I first had the issue my fear was that it would always be there.  My biggest issue was after I drank alcohol I would sometimes have an issue.  Keep doing the kegals and find out how many and how frequently they work for you.

Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 8/13/2009 5:49 PM (GMT -6)   
The normal process of regaining continence is that it will be longer and longer through the day before your muscles fatigue and you start leaking. So, you are right on schedule. The next plateau will be that you will make it to 8-9 at night. Then before you know it, you will be dry all day unless you do something strenuous. For most guys it is not a gradual process, but one that happens in stages with plateaus. You will feel stuck at a level, but fear not, healing is happening. Then one day, you will notice that you're still dry. It's a great day.
Paul
46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
One year PSA - undectable!

ED Website: www.FrankTalk.org - frank discussions of Erectile Dysfunction - check it out.


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 8/13/2009 5:51 PM (GMT -6)   
James,
My problem is that the millisecond I slide the Depends to the side, I begin spraying. I don't even have time to grab on to my hardware or aim. If it is stuck in the horizontal position it sprays on anything in front of me until I get it under control. The whole event is over in seconds and I do mean all over. Then I have to clean up the mess. Instead of all the effort I have graduated to just doing it outside.
I have tried to stop the stream and can slow it a little. I know it will get better, but the only time I feel "normal" is when I am taking a shower. Sigh.
Jeff
Age 56. Perfectly healthy with no problems until getting the results of my first routine PSA test on April 8th: 17.8. My GP does not believe in general PSA screening so I did not get results during my 50 year physical.
May PSA: 22.6, 3 weeks later: 23.2.
June 10 Biopsy 7 out of 12 cores positive, Gleason 6=3+3.
Bone scan and C/T scan negative.
----------------------------------------------
7/21/2009 Radical prostatectomy by Da Vinci @ University of Rochester
Left nerve gone, right spared.
----------------------------
7/31/2009: Catheter removed and Pathology report received
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX


steph_beer_me
New Member


Date Joined Apr 2009
Total Posts : 14
   Posted 8/15/2009 9:18 AM (GMT -6)   
To the original poster, I'm having the same experience as you.  I'm 2.5 months out of surgery and have progressed to leakage, starting only in the early evening for the most part.  I also leak during moderate to stenuous activity (running, kicking the soccer ball around with my kids, moderate lifting) and when drinking alcohol. 
 
My daily goal is to see how long I can go without using a pad.  When I'm at work (desk job) I can usually go until 2pm or so.  Weekends are more challenging as I'm pretty active starting in the morning. 
 
I currrently go through 1 pad per day and depending on my physical activity, it will vary from light to moderately full by days end.  
Age 40
Diagnosed at age 40 (March 2009) as a result of routine physical
Family history - Father diagnosed and treated at 64, one of his brothers at 70, maternal uncle at 60
PSA 19.14 (first PSA), pre-op PSA 3.93 (second PSA)
1st DRE - abnormal - 1cm nodule -  2 subsequent DREs by 2 different surgeons showed some firmness on right side, no nodule
14 biopsy cores - 1/4 positive on left, < 5% malignant, 3/7 positive on right, 10% malignant, 3 cores of nodule showed no malignancy
Gleason 3 + 3 = 6
Cat Scan - negative, believed to be prostate confined
Bone Scan - negative, no distant metastasis
Davinci RP performed 6/1 by Dr. Jean Joseph at Strong Hospital in Rochester
great wife and 3 young children (ages 4, 6, 8)


TheoTeacher
Regular Member


Date Joined Jul 2009
Total Posts : 47
   Posted 8/15/2009 10:13 AM (GMT -6)   

Jeff,

Try sitting at a each all day!  Wear a dark bathing suit - No one knows and you don't care!  At 7wks post surgery I'm dry all night, except if my wife gets frisky.  I'm dry in the morning but have to get to the bathroom every 45 mintues or so. By afternoon and with standing/walking/working I leak more than not leak.  Very frustrating to say the least.  This healing curve the men speak of is not curving fast enough for me!  I'm a teacher and will be back in front of the class in 3 weeks! "Hey teach, you're leaking again!"  I kegel three times a day, 40 reps each time. My hope is by class time I'll be on top of this.


Dad dx at 72 with Pca; RP at 73; Died 11/08 at 88 from Pca met.
3 Uncles have had Pca; 2 deceased from Pca met.
Me: Age 51: Joyfully Married; father of 7!
Routine Physical 11/07 PSA 1.73 DRE normal
Routine Physical 1/09 PSA 2.77 DRE abnormal.
1st Urologist visit 2/09 DRE normal, small - PSA 6.3!
Biopsy 3/17- St. Patty's Day! 3 of 12 cores positive with 5-8% Pca
3+3 Gleason; Visit Johns Hopkins 3/26/09 and decide for surgery.
Lapro RP 6/29/09; discharged 6/30/09
Gleason unchanged 3+3; "larger amount of cancer" than expected.
Organ confined Pca, positive margin as "artifact" of surgery.
All other tissues clear.

"We walk by faith, not by sight."


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 8/15/2009 8:10 PM (GMT -6)   
TheoTeacher The beach is a great idea. I still have some complications with one of my incisions but I see your point. The ocean would feel nice about now. And who's going to complain? The fish? Road trip to Jones Beach. Woohoo!
Age 56. Perfectly healthy with no problems until getting the results of my first routine PSA test on April 8th: 17.8. My GP does not believe in general PSA screening so I did not get results during my 50 year physical.
May PSA: 22.6, 3 weeks later: 23.2.
June 10 Biopsy 7 out of 12 cores positive, Gleason 6=3+3.
Bone scan and C/T scan negative.
----------------------------------------------
7/21/2009 Radical prostatectomy by Da Vinci @ University of Rochester
Left nerve gone, right spared.
----------------------------
7/31/2009: Catheter removed and Pathology report received
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/15/2009 9:28 PM (GMT -6)   
Hi Guys,

From all this talk about Kegels, I thought you should know my story.

When I got the cath out, I did Kegels by the book, right off the instruction sheet the Dr. gave me. I progressed to a point during the first nine months, but still had stress incontinence and problems in the evening as Ike has mentioned.

I talked to my surgeon about the issues nearly one year out of surgery. She said she thought she could get me the rest of the way to "dryness."

She sent me to a local physical therapist at a hospital rehab clinic who has had years of experience treating men and women with urinary incontinence. She uses bio-feedback therapy.

I learned during the first visit, that the generic instruction sheets apply more to those who would get better on their own with the Kegel exercises making it a little quicker.

With the bio-feedback, they can measure the electrical activity of your pelvic floor muscles with accuracy and bring them up to strength gradually as you learn to control and strengthen your muscles.

In a matter of weeks, I had made an incredible amount of progress. I owe a lot to a patient and kind therapist who knows what she is doing.

She said that she has much better results with women, because women are patient to learn and do the exercises that gradually build up your control. Often men come a couple of times and then say "I got it" and don't go any further. I went through the entire program and I am very grateful for it.

Let me know if you need more info.

Best regards,

Barry
Da Vinci LRP July 31, 2007… 54 on surgery day
PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate
6th PSA 06/09 still less than 0.1


IKE-D
Regular Member


Date Joined Jun 2009
Total Posts : 77
   Posted 8/16/2009 7:23 AM (GMT -6)   
Thanks to you all for your feedback. very useful.

regards
>Age 41 (At Dx-July 05) -Psa during annual physical went from previous 2.8 to 3
>Biopsy by 'primary' Urol Aug 05 - Gleason 6 low grade. 2nd opinion at  Hopkins confirmed Dx
>Chose Active Surv (AS)- modified diet etc.
>Around Oct 07 Psa moved up to 5.5. I decide to treat at Hopkins. Not sure what kind yet. My doctor decided on re-biopsy first.
>2nd Biopsy Dec 07 at Hopkins was NEGATIVE for Pca! Nothing found in 14 cores!
>'Primary' Urologist baffled. Planned a saturated biopsy (22 cores) to settle issue once and for all. I wasn't going to do 22 cores wide awake!
>July 07 - Did MRI just for comfort. Nothing significant found. No spread. I'd live! Still in AS mode.
>July 08 - Saturated Biopsy performed. Cancer confirmed again (of course, you took 22 cores)! Same Gleason score, same grade, similar numbers but Urol says treat very soon! I am thinking not so fast - numbers are same and you told me it means not aggressive! In any case I agreed with Urol that I will go the way of the Seeds. I research seeds more and I don't like it.
>July 08 - Dec 08 I re-lapse back into AS mode but seriously researching/considering treatment options beside surgery - went on to Mass Gen and Georgetown to explore proton therapy and Cyberknife respectively. Anything but Surgery! Both experts who are about my age were unanimous in strongly declaring they will chose surgery 'if they were me'. In addition, I learn that if either if these radiation methods (and seeds too!)  failed, no backup plan (or will be complicated)! I got the message!
>Jan 09. Went back to see my doc at Hopkins. I decide to put my fate in the hands  of the 'Da Vinci Robot' then!
> May 09. Had surgery. some Pain and discomfort but normal. Pathology all clear. Gleason 6 as before. Feeling very lucky. I gambled (based on my numbers and got 4 more years!) on the slow nature of the cancer and took my time. Very happy I finally did it. Hoping for a great recovery of all 'key' functions. Great wife and family helping out.


Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 8/17/2009 2:43 AM (GMT -6)   
I am not sure if Kegels exercise is always the answer as you know I had open surgery in Thailand I have been to see the doctor 3 times since the operation not once as the doctor mentioned anything about Kegels and he tells me that he as a 95% continence record and half of the other 5% got a good level of continence back The way he treated me when taking out the catheter I tend to believe him he gave me a couple of tissues and told me to drink lots and come back in a couple of hours which scared me but with the aid of the tissues I kept dry I have not done any Kegels and I am at the stage of normally only squirting a couple of times a day normally late afternoon I think that it reminds me to concentrate because I am normally dry till the next afternoon my catheter was removed 10 days ago
 
 
Age 64 From UK now in Thailand Baby boy born 2/14/2009
 First PSA was showing 9.73 on 1/21/09.   on 5/7/09 PSA 9.78  Free PSA 0.83   Free:Total  PSA 0.08 
1/28/09 Biopsy carried out 12 core results show no adenocarcinoma
5/15/0924 Core biopsy results Gleason'S Grade 3+2=5
Involving approx 30% of one out of 12 cores on each side no perineural or angiolymphatic invation identified
One side PIN High Grade Bone scan clear 
Open surgery 7/27/09
Prostate Gland weighting 34 grms
Gleason upgraded to 3+3 Tumour not closeto prostatic capsule Seminal Vesicles not involved by Tumour 6 Lymph Nodes negative for Malignant cells
 


Romeo
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 8/17/2009 11:25 AM (GMT -6)   
One thing I forgot to mention about the kegals is that the frequency and duration varies by person.  If you do to many you fatigue the muscles and it cause you another problem.  I suggest doing them every other day and then gradually stop or slow down significantly.
 
PSA 4.7 August 2008
PSA 4.7 September 2008 retest
Biopsy late September 2008 6 of 12 positive and gleason 8
DiVinci radical laposcopy surgery November 3, 2008
Nerve spariing surgery.  left side not touched and right side partly disturbed
results of pathology report, cancer contained in capsule in one area
gleason reduced to 7
seminal vessicles and lymph nodes clear
regained full control of bladder with no leakage in about April 09
erections coming back in April 09 and improving
PSA January 09 <.1
PSA April 09 <.1
PSA July 09 <.1
 
 

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