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Regular Member

Date Joined Aug 2009
Total Posts : 37
   Posted 8/14/2009 1:09 PM (GMT -6)   
Hello all PC survivors and loved ones, my name is Charlie and I'm new to this forum. I heard about it from another forum that I had been visiting that seemed not very active.
Let me tell you a little about my PC journey.
I'm 59. My brother, who is 2 years younger, was diagnosed about 5 years ago, and was one of the first people in the Rochester, NY, area to have DaVinci surgery. My father also had prostate cancer, but was never treated for it. Sadly, he passed 7 years ago at age 77 from another type of cancer.
So I had been dutiful about seeing the urologist twice a year. He always told me that although my prostate was a bit enlarged, there was no suspicion of cancer.
In May I went for my semiannual checkup. My PSA was only 1.4. Nice, right? Well, not so fast. The DRE revealed a "bump" that the doc had not noticed before. Subsequent biopsy showed a number of positive, moderately differentiated spots out of 12 samples. The Gleason score was 6 (3+3).  DaVinci surgery was recommended because:
a. Watchful waiting would not do me much good because my PSA was registering so low. I would need to have a biopsy every six months if I deccided to wait it out.
b. I was healthy enough to tolerate surgery.
c. Radiation now would preclude the possibility of surgery later.
So I went ahead and had the procedure done on June 16. Everything seemed to go well. The catheter was scheduled to be removed on June 26.
On about June 23 (coincidentally my 30th wedding anniversary) I noticed a problem with a bowel movement. Without getting overly graphic about it, let me just say that #2 was oozing from the opening where only #1 is supposed to come out. Needless to say, this was terribly painful and distressing.
My cystogram on June 26 revealed a fistula. Well, now I knew what it was called, but I also knew that it wasn't good. The doctor said that he had seen this only once before, out of hundreds of daVinci's he had done. (How lucky can a guy get?) He recommended a change to a "low-residue" diet, stool softening medication, and the retention of the catheter for another three weeks to allow it to heal on its own. If it didn't heal, he would have recommended sending me to the Leahy Clinic in Boston for bowel repair surgery.
Fortunately, it seems to have healed. The catheter is now just an evil, distant memory. However I continue to struggle with incontinence. I'm using about 6 pads a day, in addition to 1 or 2 Depends.
I'm trying to be patient, but I'm feeling a lot of frustration. I was doing the Kegels faitfully, but have now dropped off somewhat as they don't seem to have any effect. As of yesterday, the doctor says that if things don't improve in a couple of weeks, they have some machine in his office that helps you exercise your pelvic floor, and he would recommend that for me.
Personally, I'm glad to be back at work, although I had to move my cubicle to one closer to the men's room. What I miss most are my four or five weekly trips to the gym. I just don't feel comfortable in a locker room or a public shower.
Thanks for listening. I'm hoping to meet some guys here with similarly interesting stories, and possibly gain some encouragement and insight.
Peace to all,
P.S. There's an error in my profile that lists my age as 66. I'm really 59. I have since fixed the profile. 



Age at diagnosis 66, PSA 1.4
Biopsy 12/08 12 cores, 6 positive
Gleason 3+3=6
CAT scan negative.

DaVinci surgery 6/14/09 Catheter Out 7/17/09
After 10 days, cystogram revealed fistula
Still incontinent two months after surgery.

Post Edited (CharlieTuneA) : 8/14/2009 1:12:51 PM (GMT-6)

Regular Member

Date Joined Sep 2008
Total Posts : 143
   Posted 8/14/2009 1:28 PM (GMT -6)   

Welcome ChalireTunaA,

Sorry you had to join us but you came to the right place. You will find a lot of support here. I, too, have a fistula. My surgeon and radiologist were both concerned about it. Ironically, mnie is doing better after surgery and radiation, at least so far.

Glad you are on the road to recovery.


Bill in San Diego

Age 61 (59 @ Dx) PSA 4.4

Biopsy 5/15/08 Gleason (3+3=6)

Bone scan and pelvic CT: clear

HT - 2 mo Casodex, 3 mo Trelstar

RRP Surgery 9/15/08

Post-OP Gleason 3+4=7, Stage pT2c pN0 MX

SV, perineural margin, 18 lymph nodes, bladder neck: all carcinoma free

Perineural invasion & Distal Margin: Carcinoma present

IMRT adjuvant radiation (35 Treatments) Ended 1/27/09

PSA Tests: (10/13/08) (3/13/09) (7/10/09): all <0.1

Veteran Member

Date Joined May 2009
Total Posts : 2691
   Posted 8/14/2009 1:33 PM (GMT -6)   

If it makes you feel any any better, except for the fistula, you really aren't doing too bad.

You wll read some guys on here who never had any incontinence, but they by far the exception. It seems the average is somewhere around 4 to 6 months, some up to 8 months.

I am 4 months out, and down to 1 pqd. I am hopeful that I will be down to a pantyliner in the next 3 or 4 weeks.

The biofeedback device will be a good exercise to insure that you are doing kegals correctly. They do help initially, but it seems that after 2 or 3 miths, that your body begins doing a constant kegal, exercising itself as it were.

Are you dry at night ? If so, that is a positive sign as well.

Welcome to the forun. Sorry you had to join us, but I think you will find we are a fun grouo, and there is a lot of activiuty here.
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)

Veteran Member

Date Joined Oct 2006
Total Posts : 1210
   Posted 8/14/2009 1:40 PM (GMT -6)   
Hi Charlie,
Welcome to this great club that nobody wants to belong to. There are quite a few guys here that had the  DaVinci procedure done with very good results. Sorry to read that you had a rather serious problem, but glad that it seams to have corrected itself. You're only past surgery a couple of month and the time, for many of us, to regain full continence is much longer. So don't give up hope on that issue and follow your Docs advise. I had the open RRP and found that a lot walking seams to help a lot to regain full continence. It may take you a little longer seeing that you had some rather serious issues and additional procedures done after your DaVinci. Stay positive and don't give up.
All the best to you.

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 on the 26 Jan., 09, =0.05; 17 July 09=<0.04

Post Edited (Magaboo) : 8/14/2009 1:43:30 PM (GMT-6)

Regular Member

Date Joined Aug 2009
Total Posts : 37
   Posted 8/14/2009 1:43 PM (GMT -6)   
I should add that I seem to be a little dryer at night than during the day. At least when I wake up at 2 am, I can sense that my bladder's full and if I run the the bathroom, I am able to use the toilet.

Age at diagnosis 59, PSA 1.4
Biopsy 12/08 12 cores, 6 positive
Gleason 3+3=6
CAT scan negative.

DaVinci surgery 6/14/09 Catheter Out 7/17/09
After 10 days, cystogram revealed fistula
Still incontinent two months after surgery.

James C.
Veteran Member

Date Joined Aug 2007
Total Posts : 4462
   Posted 8/14/2009 1:44 PM (GMT -6)   
Welcome to the club Charlie. Seems like when I think I have heard of all the ways a procedure can vary, a new one pops up. Glad you overcame the problem and are on a routine path of recovery now.
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

Veteran Member

Date Joined Jan 2009
Total Posts : 2210
   Posted 8/14/2009 1:44 PM (GMT -6)   
Welcome aboard Charlie,
I have to say that is pretty remakable recovering from the fistula as well as you have. Glad no surgery was needed from that problem. Also I can relate to the proximity of the bathroom and the gym, although my workout gym is in my garage. When I go on the road I have to use the restroom as quickly as possible when the urge hits. But your progress has been pretty significant and I know it is frustrating, but hang in there as it will get better. I have said before on here that my healing timetable must be in the hands of someone other than me.
Dx with PCA 12/08 2 out of 12 cores positive
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margins not involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only
 started ED tx 7/17, slow go
Great family

Veteran Member

Date Joined Jul 2008
Total Posts : 966
   Posted 8/14/2009 2:16 PM (GMT -6)   
Hi took me around 8 months before I could go pad free. During those 8 months, I would have spells it seemed I was getting more and more improvement, and then days when I seemed to go backwards and leaked even more. I guess we are all different in recovery, but one thing for sure, don't ever give up hope. At seven months, I was getting really discouraged and was so very frustrated, that I honestly begin to feel that all this surgery stuff just wasn't worth it. ( I know shame on me)

Anyway...good luck moving does get better with time.
You are beating back cancer, so hold your head up with dignity
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

Regular Member

Date Joined Aug 2009
Total Posts : 37
   Posted 8/14/2009 8:02 PM (GMT -6)   
Thanks everyone for the enthusiastic welcome and encouraging words.

I think I'd like to stick around here and learn.

Age at diagnosis 59, PSA 1.4
Biopsy 12/08 12 cores, 6 positive
Gleason 3+3=6
CAT scan negative.

DaVinci surgery 6/14/09 Catheter Out 7/17/09
After 10 days, cystogram revealed fistula
Still incontinent two months after surgery.

Elite Member

Date Joined Oct 2008
Total Posts : 25355
   Posted 8/14/2009 8:10 PM (GMT -6)   
Hello and welcome Charlie. Glad you decided to mosey over here and check us out. Glad you are on the recovery side of things. The incontinence part is quite known to all of us, and there's a thousand stories on how it was handled and how long it took. Hope you seem some continued progress in that area.

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

DS Can
Regular Member

Date Joined May 2009
Total Posts : 195
   Posted 8/14/2009 9:12 PM (GMT -6)   

Welcome, Charlie.

and keep healing.


PSA 01/07 1.2, PSA 01/08 1.9, PSA 01/09 2.5
BIOPSY 02/24/09  PCa DX age 52
Right: 3+3=6, 3/6 cores 10% involved,PNI-Y
Left:  3+3=6, 1/7 cores <5% involved,PNI-N
LARP 04/09/09 nerve sparing. Final pathology:
GS 3+4=7, Margins uninvolved, 2 lymph nodes negative
Catheter out 04/17,1st no-pad day 05/03
25 mg Viagra nightly;100 mg:not ready for prime time
Followup PSA 05/28/09 <0.1

Regular Member

Date Joined May 2009
Total Posts : 476
   Posted 8/14/2009 9:23 PM (GMT -6)   
Welcome, Charlie.

Don't get discouraged, recovery from incontinence takes time, sometimes a long time. Mine took over a year, but I am now dry, not wearing any protection, except when doing heavy work.

Hopefully, you will get there faster - most people do.


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 on 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

Salvage IMRT + 6 Months ADT: Casodex started 6/12/2009, Lupron 6/22/2009, PSA 6/25/2009-0.1, T=516, 7/23/2009-<0.05, T<10, IMRT to start mid-Aug

Regular Member

Date Joined Feb 2009
Total Posts : 216
   Posted 8/14/2009 10:08 PM (GMT -6)   
Hi Charlie do not forget that you have only been off the catheter for 1 month and it all takes time sometimes longer in some people than others
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

Veteran Member

Date Joined Jul 2009
Total Posts : 1267
   Posted 8/14/2009 10:14 PM (GMT -6)   
Hi Charlie, nice to meet you.

On the catheter, I have a theory that with that rubber hose stretching the muscle open that has spent the past 57 years closed 99.9999% of the time, no wonder it's abused and takes time to adjust. And you had a long go with the catheter. Please keep us posted on how you're doing.

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
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"  

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