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Posted 9/23/2007 11:51 AM (GMT -6)
Still struggling here, trying to get from 1 pad to 0, and I am considering eliminating coffee for a period of time to see if that has an effect. I currently drink around 4 cups a day, sometimes more. I considered dropping coffee before, but my urologist told me I should be able to get to zero pads without eliminating coffee from my diet.

Question #1: How quickly has eliminating coffee worked for anyone out there?

Question #2: Is decaf coffee (*bleah*) just as bad for continence as regular coffee?
____________________

Prostate cancer diagnosed: May 15, 2006 (age 40)
Gleason score: pre-surgery 3+3=6; post-surgery 3+4=7
daVinci radical prostatectomy: July 25, 2006
size of tumor: approx 1.1 inches; negative margins from surgery

- number of pads/day at 3 months after surgery: 3 to 5
- number of pads/day at 4 months after surgery: 1 to 2
- number of pads/day at 6-12 months after surgery: 0 to 1

- 1st post-surgery PSA: 0 (Nov 2006); 2nd post-surgery PSA: 0 (Feb 2007)
- 3rd post-surgery PSA: 0 (May 2007); 4th post-surgery PSA: 0 (June 2007)

The search for timber: took Viagra/Cialis approx. every other day, ErecAid once a day, injections. Peyronie's diagnosed 7/5/07. Now on Cialis, L-arginine and pentoxyfylline, ordered to be celibate for 6 weeks.

- PGE1 batting average: .364 (4 for 11)
- Bimix batting average: .500 (4 for 8)
- Trimix batting average: .500 (1 for 2)

"Lost in the valley without my horses, no one can tell me what my remorse is..."

Posted 9/23/2007 2:08 PM (GMT -6)
I waited until three months post surgery before I went back to drinking coffee. I sure did miss my morning cup, but I didn't want to take a chance on messing up the progress I had made up to that point. I found that it had no effect on my continence at all. I usually find that I have to urinate about one hour after finishing a cup, and that's about what it was when I had a prostate. However, I only drink one or two cups a day.
Age: 49
Diagnosed: March 25, 2007
PSA: 3.0
Biopsy: Gleason 6, 5 out of 12 core samples positive for cancer with <5% on all 5.
DaVinci Surgery: May 21, 2007 at Florida Hospital, Orlando. Surgery took 1 hour and 45 minutes. According to my surgeon, prostate peeled away nicely and everything went text book. Nerves spared.
Pathology Report: Upgraded to Gleason 7 (3+4), Negative margins, seminal vesicles negative, lymph nodes left intact, 15% of prostate involved by cancer.
1st Post-op PSA: <0.01
2nd Post-op PSA: Scheduled September 27, 2007.
Continence: Out of pads 5 weeks post-op. Still have some minor stress incontinence from time to time but it's not an issue.
Erections: Yes! With the assistance of Cialis.
Family History: Father diagnosed with prostate cancer in 1997 at age 67. Prostate removed and has had a <0.1 PSA ever since.

Posted 9/23/2007 6:51 PM (GMT -6)
Hi StricklyInc. While in the hospital and walking around the ward I could smell fresh coffee. That night when my Dr. came by I told him I know coffee is not on the table yet, but I sure would like to have a cup. He told me if if made me feel better go ahead. The nurse heard this and said I'll make you a fresh pot and she brought myself and my wife a fresh cup. After that I have had coffee and have not noticed any more incontinence than normal. I like hot coffee and usually pour half the cup pot when it gets cold. I tried to limit my intake of it at first but noticed it did not make any difference to my dribbling. It just takes time and Kegels. Hope this helps. Luck to you on your recovery.

Mika
Posted 9/23/2007 7:54 PM (GMT -6)
Strickly,

I experimented with coffee not drinking any for a week and then going back to my two of three cups a day. I found that it did not make any difference to my leakage at the time.

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

Posted 9/24/2007 1:53 PM (GMT -6)
Before surgery I was drinking approx. 4 cups a day and I make strong coffee. After my surgery I didn't drink any for approx. 2-3 weeks, but I did have a coke now and then. Now that I started back to work I'm drinking a weaker (which might be normal strength) coffee and only 1-2 cups a day. I did watch my intake so not to mess up my continence progress which I threw the pads out at week 6. 
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! 

Posted 9/24/2007 3:58 PM (GMT -6)
Hi, StrictlyInc
I just got back from a ten day coach tour and drank coffee each morning. I also would drink coffee with each mill. I did wear a small pad each day for protection and there were a couple of times it was necessary to catch the dribble. The coach only stopped every 2 to 3 hours so the pad was necessary for peace of mind. My problem was after sitting for a few hours when I would get up it seemed there was movement of water through the pipe, but there was nothing coming out. I am 6 weeks past surgery. I hope you will continue to improve. Coffe as far as I can tell has not affected my condition. God Bless, Uncle Dan
Age 67
No symptoms, DRE negative
10-06 PSA 5.44 01-07 PSA, 6.47 CT and Bone scan negative
05-07 Biopsies, 2 of 6 positive, Gleason Score (3+4) 7 Stage T1c
08-14 Dr. Dasari - Baptist Hospital, da Vinci RAP, five hours surgery
Hospital 2 1/2 days, 8 -14 to 8 -16
Pathology report Negative margins, Cancer encapsulated,
Lymph nodes 2 R & 1 L - Negative, R & L seminal vesicles - Negative
Gleason changed (4+3) 7 closer to 8 than 6
9-20 Small infrequent leaks, Use pad when out, Sleeping without pad.

Posted 9/24/2007 6:41 PM (GMT -6)
Strictly,
 
After 8-9 weks, I had my major dry up...  5-6 pads to barely wet pad onve a day.  I had drank coffee the whole time (1-3 cups a day) and did not notice any differences on incontinance....  Only when I had to urinate.
 
I was cruising along on the one pad a day (barely wet) and was thinking the last drops would dry up in a week or so...  Didn't worry about it.  Also didn't dry up completely.  At my 3 month PSA test, doctor suggested I just quit wearing pads and see what happens...  I did not really listen to him and continued using one pad a day.  Well, just recently I ran out of pads one day, so decided to go w/o.  Lo and behold, I had a completely dry day!   Should have listened to the doctor earlier... 
 
Anyway, I found myself and kegals "background thinking" about "hollding" due to the lack of the safety net pad. and it worked fine...  Guess I needed the LACK of the security blanket pad to get there...   Maybe our brains/bodies respond better to necessity/discomfort to keep from getting wet than subcontiously lazy and depending on pads...  Anyway, I am now pad free and enjoying it... 
 
I have noticed that if I drink more than 3 glasses of wine in an hour or two (during a once in awhile "party" mode), I will still occasionally get a squirt or two...  This is only because I feel myself in the slighly impaired and would not drive state...  Probably brain losing communication with kegals and sphincter also loosening up...  As long as I pace myself...  like 1 glass per hour (4-5 oz), things are fine.  This is my normal pacing and I have no continance problems at that pace. 
 
I have also gotten good at kegals for sneezing, coughing, and laughing and rarely have squirts during those events
 
And I am still doing daily kegals...
 
God Bless!
 
Ray
 
Age 59 y/o - Last 3-4 years of annual general health checkups - PSA 5-6
3/13/2007 - 12 point biopsy - Left 0/6  Right 1/6 Gleason 3+3 Diagnosed as T1c
4/24/2007 - DaVinci performed at Virginia Mason hospital in Seattle
5/2/2007 - Catheter Out! Final pathology of Gleason 6  T2c Nx Mx,   approx 20% of prostate involved, positive margin, but only at 2 focal points.  
6/28/2007 9 weeks post-op incontinance... Overnite, went from 4-6 soaked pads a day from prev 8 weeks to 2 barely wet pads a day.
7/12/2007 11 weeks post-op  Minimal leakage...  one small pad a day
7/18/2007 First Post-Op PSA...  0.01 !!! 
7/30/2007 ED improved to about 60% erection and "functional". Only using 50mg Viagra generic every 2-3 days.
9/10/2007 Ran out of pads one day and had no dribbles all day...  Now pad free. :-)

Posted 9/24/2007 7:48 PM (GMT -6)
Hi Strictly,
As a 6-8 cup per day coffee drinker, I can understand your problem. I tried to switch to decaf too, I agree with you - YUCK! It may have been just a coincidence, but I did notice an improvement when I switched from regular to Folger's 1/2 Caff. The taste difference wasn't really noticable, and I haven't had the headaches I was getting from the straight decaf (caffine withdrawl, I assume). I drink less these days, 2-3 cups, and I'm sure consuming less caffine is good for me. I'm down to one slightly wet ultra thin pad per day, headed for complete dryness I hope!
Good Luck,
Mike
BTW, I still drink regular coffee when I go out, with no noticeable increase in leakage.
June 2005 - Age 53 PSA 4.8 at regular physical
October 2005 - After several rounds of anti-biotics, PSA 5.2 at Urlogist
November 2005 - Biopsy negative
July 2006 - PSA 5.9 at regular Physical
October 2006 - After several more rounds of anti-biotics PSA 8.1
November 2006 - Second biopsy - Positive
December 2006 - Gleason (3+4=7), Tumor T1c, CT Scan and Bone Scan Negative
January 2, 2007 Robotic Prostatectomy, University of Rochester Medical Center - Tumor confined but larger than thought, only one nerve able to be spared. Margins clear.
February 2007 - Three to four pads a day, no erection with viagara.
March 2007 - Down to two pads a day, had first intercourse with Erecaid pump and bands, otherwise still flat tire.
April 2007 - First Post-Surgical PSA 0.02 and a great relief! Down to one pad a day. Still unable to achive erection without pump.
May, 2007 - Still one pad a day, even try a smaller pad on occasion. Slight improvement on the ED.
July, 2007 - Six Month Post-op: PSA 0.04 still Non-Detectable. One small pad/day for a few drops only! No change in ED.
"If patience is a virtue, I feel like the most virtuous guy on the planet!"

Post Edited (Mike A) : 9/25/2007 6:28:50 AM (GMT-6)

Posted 9/25/2007 4:28 AM (GMT -6)
Hi Jackcc,

I'm most interested in your comment that arginine helps bulk up the area associated with urine control. I took some of this for a month earlier on after reading that it may be useful for ED. I did not notice any change at all to either my continence or my ED, so I stopped taking it. I will start again however based on your experience.

The tablets I have are these http://www.nicemuscle.com/nitrix-80717.htm. They contain 3000mg of L-Arginine Alpha Keto-Glutarate (AAKG) [whatever all that is]. I note that they are used by body builders.

Are you aware of any studies that link arginine with continence recovery? If it works, it would be a heaven sent solution. Any side effects of the arginine? How long before you noticed the effect on your incontinence?

Berb
59 years old
Da Vinci surgery Jan 10, 2007, nerves spared, no cancer detected outside prostate
Pre surgery PSA 8, Gleeson 3+4=7, T1C, 3 out of 12 biopsies had cancer
Complication 1: urine favoured drain tube over catheter, extra time in hospital, catheter in for 2 weeks
Complication 2 - urinary tract infection - Citrobacter (hospital bug), 6 weeks antibiotics cleared up
Complication 3 - fungal growth on genitals (candida albicans) probably from antibiotics
Post surgery PSA tests: all undetectable
Incontinence (as at Aug'07): no pad changes at night, 8 pads per day, diagnosed bladder neck stenosis

Posted 9/26/2007 6:13 AM (GMT -6)
Hey Strickly,

My experience is that excessive coffee (more than one cup) and alcohol use (any type) definitely affects continence. I continued to drink 3 or 4 cups a day for about three months after surgery but finally decided to cut back and it made a profound difference in my incontinence. I went from about 5 pads per day to two rather quickly. I am now 5 months out from my robotic surgery and am almost completely continent. I still wear a pad for a safety blanket but rarely have any leakage detectable. I am almost ready to take the depends out of the underwear and go it alone!!! Of course everyone is different, I am sure there are many on this site that say coffee or alcoholic beverages have no consequence on their incontinence but I am not in that group...good luck and there is light at the end of the tunnel. Jwb
age: 61
PSA 4.57 - Positive DRE
Biopsy 3-19-07 - Gleason 4+4=8
Negative bone scan 3-20-07
DaVinci 4-24-07
Catheter out 5-01-07
post op pathology:
positive margin left side of prostate
left seminal vesicle involved (both removed)
No lymph node involvement
New gleason score 9
T3B....radiation consult on 5-9-07.
June 5, 2007 1st psa post surgery 0.62
June 27, 2007 second psa post surgery 0.59
June 27, 2007 started Lupron injection (24 mos)
September 6, 2007 scheduled to be marked and prepped for radiation therapy.
Start IMRT therapy on September 13, 2007.

Posted 9/26/2007 7:14 AM (GMT -6)
I think moderation is the key. I'm 18 weeks post surgery and have one cup of coffee in the morning and since it's still quite warm here in Florida, sometimes an iced coffee in the afternoon. As far as alcohol, I can drink a glass or two of wine in the evening and again, no problems. Sometimes I think I have better control now than I did with an enlarged, cancerous prostate!
Age: 49
Diagnosed: March 25, 2007
PSA: 3.0
Biopsy: Gleason 6, 5 out of 12 core samples positive for cancer with <5% on all 5.
DaVinci Surgery: May 21, 2007 at Florida Hospital, Orlando. Surgery took 1 hour and 45 minutes. According to my surgeon, prostate peeled away nicely and everything went text book. Nerves spared.
Pathology Report: Upgraded to Gleason 7 (3+4), Negative margins, seminal vesicles negative, lymph nodes left intact, 15% of prostate involved by cancer.
1st Post-op PSA: <0.01
2nd Post-op PSA: Scheduled September 27, 2007.
Continence: Out of pads 5 weeks post-op. Still have some minor stress incontinence from time to time but it's not an issue.
Erections: Yes! With the assistance of Cialis.
Family History: Father diagnosed with prostate cancer in 1997 at age 67. Prostate removed and has had a <0.1 PSA ever since.

Posted 9/26/2007 8:26 PM (GMT -6)
I find that caffeene does make a difference in my leaking. I drink nothing but water at work during the day. Maybe one soda or ice tea in the evening.

Another thing that hit me hard was taking a Diovan for blood pressure. I had been on it before surgery and quit taking it afterward. Work is a little stressfull the last couple of weeks and I could tell my pressure was up a little. I took one Monday night and on Tuesday I leaked like crazy. about 3 or 4 pads more than normal. I guess I will just have to deal with the work stress another way!

Good Luck All,
KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
   

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