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Medical Forum / Diseases and Disorders / Prostate Cancer / January 2008Incontinence recovery
I had a radical prostatectomy via key hole surgery 12 August 2006. While the op appears to have been very successful re eradicating the cancer, I am still suffering from incontinence. I get thru about 4 pads a day when I am at home but, when I am working, which requires being on my feet teaching for c 10 hours a day, I am lucky to have a pad last for more than 2 hours. My surgeon claims that "his patients" just don't have this problem for so long - which makes me feel it is my fault somehow. I have attended physio and do the excercises. He is now talking about fitting a sling and even going as far as a false sphinctre. I am not keen to go that far until I am convinced I am not going to recover and would therefore appreciate input from anyone with similar experiences. Thanks in anticipation Ian Ian, I had my surgery around the same time and I'm also still incontinent. Although I use only one pad per day, I leak more during any sort of exercise. I do kegels and have done biofeedback, but any improvement is minor. I've gone to an incontinence uro and am going to start with a collagen injection.The success of this procedure is not very high, but it's minimally invasive and worth a shot. The next step will be the Advance Male Sling which is an improvement over the Invance male sling which was attached with screws. The new one is kind of looped thru two small incisions and then fastened with sutures. After a while your body overgrows the suture (which dissolves), and stays in place permanently. It's supposed to be very successful. I'll keep you all up to date. Ed > I use only one pad per day > I've gone to an incontinence uro > am going to start with a collagen injection. > The next step will be the Advance Male Sling > It's supposed to be very successful. I hope you are doing a lot of research to back up what your uro is telling you. The first question my uro asked me when my continence stopped at about my two-year post-op point (the general improvement plateau) at maybe two damp pads a day was, "How do you feel about that level of incontinence?". I shot back in about half a heartbeat, "It beats three pads a day." He then asked whether I was willing to risk further complications in search of an improvement via surgery or collagen. When I answered, "No way", he seemed relieved and expressed agreement with me that it isn't worth the risk at my level of incontinence and tolerance. He then emphasized that it's an open-ended personal call, that any time I change my mind the options are still there and may even increase with time, and that waiting will do no harm. I'll keep evaluating both pads and medical alternatives, but my first medical experiment will be risk-free bladder spasm pills or patch, not invasive mechanical intervention. That's an awfully small, mushy, fragile, sometimes abused chunk of meat there, involving some very vital systems without much room for error or do-overs if anything goes wrong or simply doesn't work as planned. I suggest you compare at least these three factors quite thoroughly, far beyond just one uro's advice: 1. The minor hassle of pads. 2. The high likelihood of simply changing pads every day. 3. The much lower but still appreciable likelihoods of discomfort, pain, blocked flow, or even cascading surgical problems. Then remind yourself that collagen is temporary, must be redone fairly frequently, and can lead to #3 if it shifts. I.P. Freely and it beats the hell out of not peeing > I hope you are doing a lot of research to back up what your uro is > telling you. >. > I'll keep evaluating both pads and medical alternatives, but my first > medical experiment will be risk-free bladder spasm pills or patch, not > invasive mechanical intervention. > Then remind yourself that collagen is temporary, must be redone fairly > frequently, and can lead to #3 if it shifts. > > I.P. Freely > and it beats the hell out of not peeing IP, Thank you for your thoughtful response. Everyone has a differing degree of risk tolerance and it's clear from this and other posts from you, that your risk tolerance is quite low. But I'm not willing to be incontinent for life, if there is a viable alternative. Of course I've done my research. All of us faced with treatment alternatives for PCa do nothing but lots of research. You are quite right. Collagen is temporary --- for most men. but in fact 30% of men or more, are permanently dry after collagen. The following is a quote from Steve Kramer's post of October, 2004: "The use of transurethral collagen injections is potentially more appealing than placement of an artificial sphincter or sling to many men, as it is a simple, low-risk, nonsurgical procedure.[63] (Using a transurethral retrograde approach, bovine collagen is injected submucosally into the urethra, avoiding the external sphincter.) Although overall satisfaction rates have been reported as high as 58%,[64] continence rates are actually somewhat lower, and decrease substantially over time. In one series, 38.7% of patients achieved social continence but only 60.9% maintained it at 1 year, 54.5% maintained it at 18 months, and 42.8% maintained it at 24 months, stabilizing at 45.5% at 30-month follow-up.[65] Of note, when compared with artificial sphincter placement in a retrospective study, after a mean of 19 months of follow-up, significantly fewer patients undergoing collagen injection remained dry (33% vs 2%) or socially continent (42% v 17%), while significantly more patients remained incontinent, requiring more than one pad per day (81% vs 25%).[66] Similarly, patient- reported degree of bother was significantly higher with artificial sphincter placement vs collagen injection.[66] " While there can be be effects, something less than 10% of men experienced worse incontinence or retention. Most side effects were transitory. I'm certainly a realist in all this. I don't expect this to work, but it could and with little risk. In a paper published in the Journal of Urology, September, 2005, Dr. O. Lenaine Westney, program director of Division of Urology at The University of Texas says, " If the incontinence is determined to be mild, collagen is a reasonable first option." If this doesn't work ,I'll go from there. In my mind, doing something is better than doing nothing. As far as "risk free" bladder spasm pills, if you mean Vesicare or Detrol LA, I've tried both and all they did was constipate me. Apparently, they're only useful for urge incontinence, not stress incontinence. > The following is a quote from Steve Kramer's post of October, 2004: I do not question the veracity of the information, but I did not say it. Maybe a thread that I started or in which I participated.  SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04 10/11/07 Non Illegitimi Carborundum > > The following is a quote from Steve Kramer's post of October, 2004: > > I do not question the veracity of the information, but I did not say it. > Maybe a thread that I started or in which I participated. Steve, Sorry, you're absolutely correct. It was, in fact, from Neil Simpson posting a very long abtract from Report to the Nation on Prostate Cancer 2004. You responded to the post. Ed >> > The following is a quote from Steve Kramer's post of October, 2004: >> [quoted text clipped - 6 lines] > Cancer 2004. > You responded to the post. No problem, Ed. I only hope my response was half as intelligent as the article. > IP, > Thank you for your thoughtful response. Everyone has a differing > degree of risk tolerance and it's clear from this and other posts from > you, that your risk tolerance is quite low. Only if the therapeutic index -- the expected ratio of benefit to harm -- is low. I have VERY little to gain and a great deal to lose from such things as invasive incontinence treatments and asymptomatic ADT. I'll do a lot more collagen research before deciding to try it, and just wanted to make sure you did so. > Of course I've done my research. All of us faced with treatment > alternatives for PCa do nothing but lots of research. We've seen that to be an incorrect assumption. I assume the opposite until proven wrong, because a) a significant minority come to this forum having done little to none, some with dire consequences by the time we hear from them, b) many men come here not yet knowing -- because they've done no research -- that their doctors are incompetent, and c) incorrectly assuming new pts are knowledgeable can doom them to significant mistakes. Notice the contradiction in these two statements: > 30% of men or more, are permanently dry after collagen. and > 38.7% of patients achieved social continence but ... > stabilizing at 45.5% [of those]at 30-month follow-up. 45% of 39% = 18 %, not 30%. In addition, it is regarded as temporary, as described in this quote: "Duration of Effectiveness: Collagen is absorbed over time, so injections generally need to be repeated every six to 18 months." from http://adam.about.com/reports/000050_13.htm , among others. > As far as "risk free" bladder spasm pills, if you mean Vesicare or > Detrol LA, I've tried both and all they did was constipate me. > Apparently, they're only useful for urge incontinence, not stress > incontinence. That's a concern I have with the Detrol LA I just picked up today for a trial run. I'll take pads over constipation any time. OTOH, your bottom line validly overrides virtually all the above considerations, within personal limits on the word "viable": "I'm not willing to be incontinent for life, if there is a viable alternative". I.P. > Ian, > I had my surgery around the same time and I'm also still incontinent. [quoted text clipped - 12 lines] > I'll keep you all up to date. > Ed Ed I had the collagen without any appreciable change and it is looking more and more like I will be going for the sling so I would appreciate any updates from you. Regards Ian > it is looking > more and more like I will be going for the sling Have you had a urodynamics exam? Google it for details, but essentially they plumb and wire your bladder so they can pump water in and out and map such parameters as bladder pressure, sphincter signals, and leak rates to determine what percentage of your leakage is due to bladder vs sphincter vs nerve problems. This helps them identify a more informed plan of attacking the problem. The procedure is no more invasive than a catheterization; you walk in with no prep, read a magazine or shoot the breeze during the test, discuss the results, walk out with a better plan of attack, and drive home. I get mine in a couple of weeks. Isn't 17 months pretty early post-op to give up on Kegels and healing and dive into more surgery? I.P. > I had the collagen without any appreciable change and it is looking > more and more like I will be going for the sling so I would appreciate > any updates from you. Regards Ian- Hide quoted text - > > - Show quoted text - Ian, I had the collagen injection on Dec. 1, 2007. The bottom line is no real improvement, but there is change. The first week after the injection was pretty much the same as before the injection. The next two weeks showed dramatic improvement, including my driest day yet, 11 grams (1/3 ounce). But then it got dramatically worse including my single worst day ever, 555 grams (18 ounces +). This was during the holidays (spicy foods) and particularly intensive exercise after the holidays. Bottom line was average 119 grams during 5 weeks previous to collagen and 107 grams after collagen, not statistically significant. I can usually get away with one pad at that level. I see the Uro on Tuesday and we'll see. It doesn't seem like another injection is warranted, although most of the literature suggests more than one injection is necessary. I also want to see how many Advance sling procedures he's done and what his results were. Did you have more than one injection? I'll let you know results of Uro visit. Ed > It doesn't seem like another > injection is warranted, although most of the literature suggests more > than one injection is necessary. My reading indicates that collagen injection is *expected* to be repeated on a regular basis, just like botox. Each new injection carries the risk of infection, misplacement, and/or migration. I don't weigh my wet pads, but my leak rate has to range from 3-5 ounces some days to quarts on others, depending on what, exactly, I'm doing. I might simply soil a pad in an intense 3-hour gym session, yet overflow the biggest man-diaper Depends makes in an hour of windsurfing, both of which leak rates beat all to hell that classic euphemism for failure, "complications" (i.e., additional problems requiring cascading invasive additional medical procedures with new risks of further "complications". There are two systems I really, truly do NOT want "complications" in, and both of them are in my shorts. Pads are just nuisances; cascading treatments, especially if they involve an O.R, are "complications". I've got some real soul-searching to do if my cancer returns, given that SRT very definitely qualifies as "taking it in the shorts" and is so unlikely to help us G-8, SVI, negative-margin relapses. I.P. > I had a radical prostatectomy via key hole surgery 12 August 2006. > While the op appears to have been very successful re eradicating the [quoted text clipped - 11 lines] > am not going to recover and would therefore appreciate input from > anyone with similar experiences. Considering my informal take on their ratio of problems to great success, I'd do a LOT of research on the topic first, with books, literature, and, of course, right here. My surgeon is also floored that I'm not continent, especially after three years. I'm not as leaky as you, but do need pad or three a day. I sent him the following e-mail recently: "I think my incontinence has increased slightly over the last several months. A year ago I noticed leaks primarily only after a physically hard day, and even then could usually stop a dribble with a Kegel if I perceived it before it saw the light of day. Now I sometimes notice more leaks and wetter pads earlier in the day. In answer to your obvious question … no, I’m not doing Kegels regularly. That’s an extremely hard habit to make and maintain because it provides no observable feedback, results, or endorphins like whole-body exercise does. And shouldn’t my pelvic floor muscles be getting stronger rather than weaker, considering my continence in the gym and my conscious successful use of them when I feel and avert a leak? About the only time I can’t stop a perceptible dribble is when I’m physically exhausted AND feel urgency despite a relatively empty bladder (trampolines and windsurfing aside). There seems to be little correlation between urgency and fullness, especially in the wee wee (hee, hee) hours of the morning. I’m usually awakened in the middle of the night by strong urgency bordering on discomfort, only to void a nominal amount of urine (I’m convinced I’m voiding completely). Much less often, I sleep all night, awaken naturally, get up feeling full but comfortable, then void a very large amount despite minimal urgency. Ditto daytime, when noticeable discomfort and urgency may lead to only a modest quantity of urine, or a huge quantity may follow no urgency or discomfort. Again, little correlation. I’ve not had the extreme, often painful urgency I had for a few months the summer I was diagnosed, requiring and responding well to a transdermal patch (oxybutynin, if I recall correctly) for strong bladder overactivity. But could mild bladder overactivity be a likely contributor to the poor correlation, false fullness alarms, slightly increased leakage, and my incontinence in general? Might an experiment with a low dose of some bladder overactivity treatment tell us something useful? If so, does it make sense to try that before my next appointment?" His response was A) agreement that it sounds very much like bladder overactivity/spasms and B) a prescription for the appropriate bladder drugs. Googling <bladder overactivity> will lead you to a great deal of information on symptoms and comparisons of the various bladder overactivity drugs and delivery formats. Maybe that information will light a bulb over your head. I.P. Freely but thank God P doesn't stand for Poop > > I had a radical prostatectomy via key hole surgery 12 August 2006. > > While the op appears to have been very successful re eradicating the [quoted text clipped - 67 lines] > > - Show quoted text - Thanks for your response. Everything you descrbe sounds very familiar. I was given extensive exercise by a reputably tough physio and am trying to stick to them but am almost reaching the conclusion that I am over working the muscles causing a short term exacerbation of my problems. Still - nil desperandum. Thanks again Ian > I had a radical prostatectomy via key hole surgery 12 August 2006. > While the op appears to have been very successful re eradicating the [quoted text clipped - 11 lines] > am not going to recover and would therefore appreciate input from > anyone with similar experiences. There are some notes on incontinence recovery that summarize and point to studies that have been done on this here: http://palpable-prostate.blogspot.com/2007/02/post-rp-urinary-incontinence.html In the studies 94% of patients had overcome incontinence after one year. There is one study by Walsh referred to in the Endotext reference in which average times to continence were 18 months. The studies may not all be directly comparable due to different definitions of continence but perhaps it gives you a guideline. Surgical technique is undoubtedly very important so if your surgeon rarely experiences incontinence periods of one year that it makes it less likely that you will regain continence without further treatment. There are also some notes on incontinence after RP here: http://palpable-prostate.blogspot.com/2007/02/urinary-incontinence.html As pointed out in those notes incontinence after RP is usually stress incontinence but if you have urge incontinence then the treatments are completely different. --- The Palpable Prostate http://palpable-prostate.blogspot.com |
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