Incontinence, Impotence & Back Pain

Have you experienced these problems?
0
Incontinence - 0.0%
0
Impotence - 0.0%
1
Incontinence + Back Pain - 100.0%

 
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DrJohn
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/1/2009 7:59 AM (GMT -7)   
I had a prostatectomy with lymph node removal (gleason 7) exactly one year ago. My PSA was normal but my GP found a hard node on the right lobe and ED had been a problem for about a year prior to the DRE. The biopsy confirmed her suspicions that I had prostate cancer (I'm still very grateful!). The good news is that my PSA nidal was zero so the cancer had not invaded my body beyond the nodes. The bad news is that my incontinence continues at a rate of 1-2 pads per day. Living in Toronto, the winter cold reduced my control even further resulting in a few accidents and kegel exercises don't seem to address the problem. Also, I have experienced severe pain in my lower back and right groin since the surgery. Incontinence is not a great aphrodisiac but even with Viagra and MUSE, my ability to sustain an erection is limited. I'm reluctant to go to the needle until I get the incontinence under control. Statistically, I may be part of that 1-2% of men who have to adjust to these issues. However, I'm a very active and fit 58 year-old psychologist with no other health issues so this is frustrating for both me and my doctors. I'm visiting my urologist again this afternoon. Any thoughts, similar stories or suggestions?

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 5/1/2009 9:59 AM (GMT -7)   
Hello DrJohn...welcome to HealingWell. I think that most men that go through surgery will experience to some degree what you are mentioning. The part about the back pain...that could be many things unrelated to cancer, however I would consult your doctor on that to be certain. I am only out from surgery for about 7 months now...and I am still with one pad a day, but I am improving. The ED is about where you are at right now and I have read that it can take a couple of years for some of us.

Only suggestion would be on the incontinence is that if it is causing issues, then certainly talk with your uro about implants or a sling. Several here have had those installed with very good success and will chime in shortly.

On the ED...I haven't thought about the needle route, but others have and I don't think that incontinence will effect the outcome one way or another. But let those that do use the injections tell you more.

Best of luck to you in your recovery...and again welcome to this wonderful site
You are beating back cancer, so hold your head up with dignity
 
Les
 
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 April 2009 .06


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25353
   Posted 5/1/2009 12:50 PM (GMT -7)   
Welcome Dr. John, glad you found us but sorry you need us. My open surgery is coming on 6 months behind me. If I were using pads at the point in time you are, I would definitely want to sit down with my dr. and see what else could be done within reason. On the ED front, plenty of well experienced men here that use pumps, ED drugs, and injectables, I was one of the rare ones, and haven't had any ED since coming off 2 months plus of being on a catheter, with only one side nerves being spared, can't explain it, but it's working on its own. Still getting use to dry ejaculations, but they are starting to become but a memory now, the longer lasting and deeper feeling "O's" are more than making up for that part. You are among friends and comrades here, Dr., so keep us posted, perhaps we will needy your services too! lol. Good luck to you.

David in SC
Age 56, 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
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


DrJohn
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/1/2009 2:28 PM (GMT -7)   
Thanks for the great support, insights and encouragement. It took me a considerable amount of time to reach out because, frankly, I'm used being on the giving side of the relationship! Actually, I went to a psycho-therapist after my surgeon got defensive about all of my questions. I wasn't questioning his competency but my anger at the situation probably caused him to feel that way; he referred me to the therapist because "it couldn't do any harm" and, frankly, it would have been pretty arrogant of me if I didn't go! After a couple of sessions, I realized that I wasn't ready to settle for the new normal like I was being counseled to do at least not without exhausting all of my options. There is no doubt that I'm angry. Not all of the time and it's only apparent when I drop the shields as they used to say in Star Trek! My wife of 37 years has been outstanding, patient and, as always, my best friend so after she coaxed me, I made an appointment with another urologist. I saw him today and we are doing a procedure on May 15th to determine if my bladder is properly situated. A cystoscopy in March confirmed that the bladder function was normal and I had a CT Scan last month. The ED challenge is on hold until we sort out the incontinence and the urologist put me back on Detrol. Thanks again. This is a great resource and I actually feel better for signing on and hearing your stories.

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 5/1/2009 3:00 PM (GMT -7)   
DrJohn, glad to hear you are doing so well (yes, you are, actually...lol)

As to incontience and sex, you may or may not have discovered by now that it is possible to leak, spray or otherwise lose urine during sex, especially during orgasm. If that is your concern, then there's ways to help matters. Using a penis ring (silicone and sized small enough to clamp off the penis to hold the urine in) is a favorite item for several of men here. For just small amounts of urine, a condom worked for some. Also, the injections , by the nature of how they activate the penis, can help hold back the urine during sex. I had that problem for a while, but I learned just what I needed to do during sex, basically I needed to clamp down on the muscles and hold in, rather than follow the natural urge to push out during sex and particularly during orgasm, therefore holding the urine in. It took a little while and a few failures, but it is doable. Like the piano, it takes practice, practice , practice to perfect...lol
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- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2455
   Posted 5/1/2009 4:42 PM (GMT -7)   
Dr. John,
Sorry that you are here. Incontinence has been a problem for me as well. I had my catheter removed Feb 17th and I still have to use one pad a day. I seem to be making small improvements but those last few drops don't seem to go away. As far as ED, I had both nerve bundles removed. I've been using the pump but so far, I haven't had an erection that lasts long enough for intercourse and that takes the fun out of it. I did get a prescription for Trimix but haven't had the courage to get it filled. Many guys on this forum seem to use it and are happy with it.
Age: 67
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
Dx 12/30/08
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09
Surgeon: Dr. Randy Fagin, Austin TX.
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Bilateral 10-20% involved
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
seminal vesicles clean
Lymph nodes: not dissected
1st PSA test 4/7/09 result <0.1


DrJohn
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/4/2009 5:48 AM (GMT -7)   
Hi Ed, during the meeting with my urologist last week, he said that I may have a problem with where my bladder (and urethra) has settled so I'm scheduled for a procedure on the 15th to determine if I'm a candidate for the "sling". The explanation about why I don't have control makes sense and the reports of success with the sling are quite impressive. The day surgery procedure is not too invasive but first we have to see if that's the problem. There have been a number of good ideas on the forum about how to control incontinence during sex. Thanks for your thoughts!

SkyDaver
Regular Member


Date Joined Jul 2008
Total Posts : 72
   Posted 5/6/2009 8:49 AM (GMT -7)   
Dr. John, I was having problems with leakage, averaging over 100ml/day (the number of pads varied as well, with activity often causing problems as things shifted around). I had a urodynamics test (I think that is checking what amount the bladder can hold, and at what pressure) and a cystoscopy (which I was very nervous about, but was painless) to check for sphincter function. My urologist said I was a good candidate for the sling (be sure that your doc is referring to the AdVance Male Sling, and NOT the InVance sling!)

I had it done, and I am completely dry.

I just answered a question on the thread where I described the whole process; you should be able to find it on the first page of the topics now. SkyDaver's AdVance Sling Journey, or something like that.

Good Luck!
51 yrs old at diagnosis & surgery
Biopsy 6/20/2007, 2 of 10 cores positive, 9%, Gleason 3+3, PSA 2.5, up from 2.0 previous year.
DaVinci robotic at Duke Univ. Medical Center 10/3/2007 both nerves spared
post surgical PSA tests all < 0.1
AdVance Male Sling 08/25/2008 at Duke Univ. Medical Center


SkyDaver
Regular Member


Date Joined Jul 2008
Total Posts : 72
   Posted 5/6/2009 9:01 AM (GMT -7)   
Here's the topic I started on my experience with the sling: SkyDaver's AdVance sling journey
51 yrs old at diagnosis & surgery
Biopsy 6/20/2007, 2 of 10 cores positive, 9%, Gleason 3+3, PSA 2.5, up from 2.0 previous year.
DaVinci robotic at Duke Univ. Medical Center 10/3/2007 both nerves spared
post surgical PSA tests all < 0.1
AdVance Male Sling 08/25/2008 at Duke Univ. Medical Center


DrJohn
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/6/2009 12:17 PM (GMT -7)   
Thanks SkyDaver! I had the cystoscopy and all was good with the mechanics but the pain and incontinence continued. Strangely, when I'm sleeping (and horizontal) there are no leakage issues or, at least, much less. I have a urodynamic test scheduled for May 15 and the urologist is already talking about the sling. Why not the InVance sling? I'm on Detrol at the moment and that has eased the discomfort somewhat. I have an upcoming business trip to Qatar in June and my confidence is a little shaky so I hope that there is a solution on the horizon.

John

SkyDaver
Regular Member


Date Joined Jul 2008
Total Posts : 72
   Posted 5/6/2009 2:01 PM (GMT -7)   
The InVance sling works by actually compressing the urethra, and the big problem, IMO, is that the sling arms are anchored with bone screws.

The AdVance sling seems to hold the bladder in place so it doesn't flop around (this is a computer geek speaking, not an anatomy specialist). The arms are held in place in the muscle tissue; I think they're held by scarring.

I don't know if you could get the surgery done in time for your trip
51 yrs old at diagnosis & surgery
Biopsy 6/20/2007, 2 of 10 cores positive, 9%, Gleason 3+3, PSA 2.5, up from 2.0 previous year.
DaVinci robotic at Duke Univ. Medical Center 10/3/2007 both nerves spared
post surgical PSA tests all < 0.1
AdVance Male Sling 08/25/2008 at Duke Univ. Medical Center

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