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Medical Forum / Diseases and Disorders / Prostate Cancer / January 2008Surprising post-RP incontinence information
I had a urodynamics test yesterday. They monitor bladder pressure, fill and empty it via catheter, and stress it while full, all while watching the bladder by continual X-ray and a pressure monitor, in an attempt to determine the cause of lingering limited post-RP continence. The urologist and the nurse performing the test each have 20 years’ experience explicitly in analyzing and improving urinary and sexual performance in post-RP men; both are nationally known. Their expectations and recommendations included some very surprising and enlightening comments relevant to many of us and largely contradictory to what we’re being told, IMO. The dry guy -- the man who doesn’t permanently need pads after an RP -- is rare, for one simple, obvious reason: half the flow control valves are gone. Compound that by removal of one or both of the nerve bundles that control the remaining valve, and we’re lucky to need only a few pads a day. “You mean surgeons lie to patients before surgery about our incontinence odds?”, I asked. “No; patients [lie] to their surgeons *after* surgery”. She explained that the vast majority of men are far more willing to talk candidly about post-op performance with a third party -- the sexual and urinary continence specialist -- than with their surgeon, according to her experience and many studies. IOW, pts are telling their surgeons, “Oh, I’m fine. You did good” but then admitting problems only to subsequent specialist(s). The surgeon chalks up another gold star to his “dry, hard guy list”, contributes another victory to the party line, and promulgates the myths we hear after diagnosis. So what’s the *norm*, the degree of continence we might *expect*, after a couple of years of healing and Kegels post-RP *if* both nerves are spared, according to these practicioners’ literature contributions and research? One to three pads a day, worse if one or both nerve bundles were involved and removed. Bummer. When a man complains to a specialist that he’s extremely incontinent, such as multiple full diapers daily a year post-op, we know the options: artificial sphincter or sling. We all know the many risks, from normal surgical risks to failure to a variety of further plumbing complications maybe requiring further surgeries; no surprises there. The surprise? Their target, their optimal outcome, the best they can legitimately hope for, is … one to three pads a day. IOW, I have no valid complaint. I am already, and have long been, dryer than most RP pts, even those with two intact nerve bundles, even after their successful incontinence surgery. I.E., lower your continence expectations across the board, according to these published experts. I asked them about collagen injections. Their simple answer, “Oh, that doesn’t work for RP patients, period. Too much scar tissue. Not an option.” Other factoids: Urine expulsion with ejaculation is normal. The part of the bladder that restrains urine during ejaculation is removed in an RP. “RP-enhanced orgasms are unusual but clearly observed. Chalk that up in the Win column.” They also said Detrol or other bladder overactivity drugs would be of no use to anyone without bladder overactivity, and the test revealed that my bladder activity was normal. One could experiment with Detrol, but its SEs can be very painful; the test involves no more than a routine catheterization and some extra Roentgens. Their eyebrows shot up when I mentioned that on a GOOD night, I won’t wake up until time to get up, and may void a quart of urine then. “That’s way too much urine. It over-stretches the bladder.” Well, excuuuuuuuse me. It’s not like I was deliberately holding it. Any night I sleep for eight uninterrupted hours also goes in the Win column. And finally, re Kegels: *DO* them. I asked whether just going about one’s day -- home, office, yard, gym, sidewalk, etc. -- while staunching the flow is enough strengthening for the pelvic floor muscles we need. “Definitely not. Just like any other muscle that needs more strength, these need specific strength training.” I nodded and vowed to do them by the book for as long as it takes to know whether I’m wasting my time, and asked how long that may take. “You should know within about six diligent weeks whether Kegels will help significantly.” I presume that’s after full healing, meaning a couple of years post-RP. I.P. Freely And apparently that’s the NORM On Jan 17, 6:20 pm, "I.P. Freely" <fuhgheddabou...@noway.nohow> wrote...snip... > The dry guy -- the man who doesn't permanently need pads after an RP -- > is rare > So what's the *norm*, the degree of continence we might *expect*, after > a couple of years of healing and Kegels post-RP *if* both nerves are > spared, according to these practicioners' literature contributions and > research? One to three pads a day, worse if one or both nerve bundles > were involved and removed. I.P...I read what you wrote, but I just can't believe it, dunno what else to say...ron > I.P...I read what you wrote, but I just can't believe it, dunno what > else to say...ron I hear you, and was almost equally surprised. But I took careful and thorough notes, asked questions when surprised or unclear, and had another set of ears present who confirmed all this point by point. If I were considering an RP or post-RP incontinence tx, I'd sure do some further research in this direction. Maybe adding their names might help to that end. The urologist is C.C. Yang (very impressive curriculum vitae) of the University of Washington. The nurse is D.C. Clowers, whose name appears in many incontinence references. I.P. > On Jan 17, 6:20 pm, "I.P. Freely" <fuhgheddabou...@noway.nohow> > wrote...snip... [quoted text clipped - 9 lines] > I.P...I read what you wrote, but I just can't believe it, dunno what > else to say...ron I also don't believe that almost all men permanently need pads after RP. First note that people who treat men for incontinence after RP see a biased sample. Second, there are independent studies of quality of life issues. For example, I was referred by my urologist to such a study at Evanston Hospital. They asked quite penetrating specific questions, and a man would have to be pretty determined not to admit he was using pads if he were. Third, not all men are that concerned about their surgeons' feeling. I tell my doctor every little thing, whether he is happy about it or not and whether it is significant or not. Fourth, why in the world would men be more willing to talk about impotence then they are about incontinence? I don't use pads except on rare occasions, every few months, when I know I will not be able to find a bathroom when I need one. That actually happens less often now, after surgery, than it did before surgery, but before surgery I would never have thought of the possibility. Not sure what to think of the post and such. I do not feel that "That is the Norm" at least as far as I am concerned. I admit I have a one-sided view of this matter.......me. Anyway, I had RP when 49, and did kiegels prior to the surgery. I lost one set of nerves. I did not leak when the catheter was pulled. I did need to be a bit careful at first for about 2 weeks but after that, I am fine. I admit with a drip here and then after finising, but that is left over............ Anyway, I must not be a part of the norm, and feel that walking, and running were a great help with the entire side effects of the surgery. Oh, and I can and do get great erections, and admit it took 2 years to get there........I do use about 25% of 100 mgs viagra to really pump it up. So, I am happy with my outcome and am very sorry for those who have not done so well. I had RP 1999. anyway, wish I had some answers to this problem for all those suffering. Jloomis >I had a urodynamics test yesterday. They monitor bladder pressure, fill and >empty it via catheter, and stress it while full, all while watching the [quoted text clipped - 81 lines] > I.P. Freely > And apparently that’s the NORM > Not sure what to think of the post and such. I do not feel that "That is > the Norm" at least as far as I am concerned. I admit I have a one-sided [quoted text clipped - 14 lines] > anyway, wish I had some answers to this problem for all those suffering. > Jloomis I know this is all anecdotal, but my experience at age 64 was pretty much the same as John's---even with the one nerve removed. I don't have the holding power I used to have, but I really don't leak. Of the five men I spoke to who had surgery done by our local urologist, only one had permanent incontinence, and he was going to get the surgery for that. Another has a bit of a problem when he has too much alcohol, but that's about it. It would be interesting to know what the experiences of the other posters in the group has been in this regard. My experience with leakage... Age 56. Robotic surgery Oct 13, 2007 (3 months ago). Nerves spared. Catheter out after 9 days. Leaked allot for the first 2 months. Pretty good doing the Kegels. During the past month, leakage is MUCH less. I use 2 men's size Kotex type pads/day and they are mostly dry when I change them. I leak more when doing lifting and twisting or bending. Erections are not what I would like, but I have hope and glimmers of success. Peter >> Not sure what to think of the post and such. I do not feel that "That is >> the Norm" at least as far as I am concerned. I admit I have a one-sided [quoted text clipped - 24 lines] > about it. It would be interesting to know what the experiences of the > other posters in the group has been in this regard. >> Not sure what to think of the post and such. I do not feel that "That is >> the Norm" at least as far as I am concerned. I admit I have a one-sided [quoted text clipped - 23 lines] >would be interesting to know what the experiences of the other posters in >the group has been in this regard. I leaked badly at first, at least it seemed pretty bad, using 2 to 3 pads a day for the first couple weeks. By about 3 months it was down to one pad a day, then at about 4 months I said "No more pads" for weekends and at 5 months said "no more ever". I do get an occasional squirt that will leave a quarter to half dollar sized wet spot in my shorts but that only happens once or twice a month. I also have overactive bladder but have never "lost it" even when I've been delayed getting to a bathroom as soon as I would have liked although it takes a lot of concentration and leg crossing. I had heard people say alcohol caused problems but even when I have been pretty well lubed with tequila I have not had an accident. I consider my self fortunate and am doing far better then I ever thought I would be as far as the incontinence. I wish I was doing as well in the erection department but even that seems to be working a little better each month and I'm a little past two years from my surgery. I have never leaked a drop. I had RP a litle over 2 years ago at age 51. I lost no nerves. > Not sure what to think of the post and such. I do not feel that "That is > the Norm" at least as far as I am concerned. I admit I have a one-sided [quoted text clipped - 100 lines] >> I.P. Freely >> And apparently that's the NORM I'm surprised - incredulous even. I can see why surgeons might want to put a brighter spin on their success figures re this and that, but why would a patient not want to admit the extent of any failure to their surgeon? Bizarre. Are they stretching the 'norm' to its limit to mean anything >50%? Even that would surprise me. Does this apply just to open RP or to the laparascopic styles also? > I'm surprised - incredulous even. I can see why surgeons might want > to put a brighter spin on their success figures re this and that, but [quoted text clipped - 5 lines] > > Does this apply just to open RP or to the laparascopic styles also? The usual figures for serious long term incontinence requiring intervention are something like 2 percent. Long term stress incontinence is estimated to be a bit higher, 20-30 percent. Laproscopic surgeons claim greater success in the matter, but I'm not sure the research backs them up. > The usual figures for serious long term incontinence requiring > intervention are something like 2 percent. A. Those figures come mostly from surgeons. Dr. Yang's whole point is the distortion of those figures. I wonder what her publications say about the statistics. B. I'm not interested in intervention even on days I soak 2 or 3 pads, yet one pt of my uro demands further surgery because he leaks literally 3 or 4 drops a day. Thus "required intervention" is a very lose term. > Long term stress > incontinence is estimated to be a bit higher, 20-30 percent. Estimated by whom? Is Dr. Yang's professional opinion of no value? Did you Google her curriculum vitae? Who has less reason to distort the percentage of post-RP dry men -- surgeons or the uros who try to dry the leakers up? > Laproscopic surgeons claim greater success in the matter, but I'm not > sure the research backs them up. Bingo. I.P. On Jan 18, 12:11 pm, "I.P. Freely" <fuhgheddabou...@noway.nohow> wrote: > > The usual figures for serious long term incontinence requiring > > intervention are something like 2 percent. [quoted text clipped - 6 lines] > yet one pt of my uro demands further surgery because he leaks literally > 3 or 4 drops a day. Thus "required intervention" is a very lose term. The studies that exist use different approaches. Some use self reporting based on number pads used while others are based on pad weight. 1. Self reporting number of pads used is subjective since same level of incontinence might be regarded as cause for using a pad by one person and not another; however, it does have the advantage that it relates to how bothered the patient is by the incontinence and that could concievably be more important than the objective amount. 2. The second type is objective and seems unlikely to be subject to wrong reporting. See references in link in my prior post for more info. --- The Palpable Prostate http://palpable-prostate.blogspot.com > See references in link in my prior post for more info. I didn't post this to debate it. It's just fresh light on an old topic for others' consideration. I.P. > why would a patient not want to admit the extent of any failure to > their surgeon? Dr. Yang specifically said that was due to our not wanting to disappoint the nice surgeon. We've formed a bond with the man/woman who saved our life, and don't want to make him or her feel guilty, so we suck it up and are not candid with them. But when leaky or limp post-RP men consult with a third party expressly for this new problem, we're much more candid and thorough. When I told her I've told my surgeon everything I've told her, she said that's rare, that studies show very few men do so. Heck, look how many men come here relating very limited exchange of information with their doctors even during critical treatment decision phases. Realize, too, that our very presence here places us in the more communicative cohort. > Bizarre. Uncommunicative men "bizarre"? I'd guess a hundred million U.S. women would snort at that assessment. > Are they stretching the 'norm' to its limit to mean anything >50%? I didn't ask her for statistics. > Does this apply just to open RP or to the laparascopic styles also? Nor did we address that distinction, but because the primary continence problems -- the removal of one sphincter and the bladder neck -- are common to both procedures, and because nerve sparing is a function of the cancer, not the procedure, I'd GUESS it matters little. I.P. >> why would a patient not want to admit the extent of any failure to >> their surgeon? [quoted text clipped - 5 lines] >with a third party expressly for this new problem, we're much more >candid and thorough. I don't doubt it at all because I have done it. I switched from my first uro because I found another who was more willing to be "hands on" with ED issues as well as who seemed more up to date on kidney stone problems. But I didn't tell my first uro any of that, and I'm sure if he was to think of me at all, which is unlikely, he would mainly think that my disappearance is a sign of successful treatment. >> why would a patient not want to admit the extent of any failure to >> their surgeon? [quoted text clipped - 3 lines] >life, and don't want to make him or her feel guilty, so we suck it up >and are not candid with them. I recognise what you're saying here, I wouldn't deny its effect, sometimes we want to say what others want to hear. Might Dr Yang be doing that for her patients? >But when leaky or limp post-RP men consult >with a third party expressly for this new problem, we're much more [quoted text clipped - 4 lines] >phases. Realize, too, that our very presence here places us in the more >communicative cohort. Yet our local poll - admittedly too few respondents - shows overwhelming dryness. (Please! - if you're not dry, do add yourself to the list!). Our presence here might make us Kegel harder while seeking out the best medical help we can find but is usenet-savviness really so potent that it turns a predominantly wet tendency into a dry one? There's an interesting research project for someone looking to make a sensational impact! Do you rule out sensationalism in Dr Yang's efforts? >> Bizarre. > >Uncommunicative men "bizarre"? I'd guess a hundred million U.S. women >would snort at that assessment. Yes, I concede that. >> Are they stretching the 'norm' to its limit to mean anything >50%? > >I didn't ask her for statistics. That should be the next step. > I recognise what you're saying here, I wouldn't deny its effect, > sometimes we want to say what others want to hear. Might Dr Yang be > doing that for her patients? Are you guys (you're not the first to suggest this) so stuck on the party line, so fearful of elevated risk, that you really think two hard-bitten, blunt, no-nonsense pros would compromise their professional integrity and risk their credibilities and careers by concocting scenarios and literature just to appease some old fart who consulted them upon his uro's advice largely out of curiosity about the nature of a relatively minor nuisance? That's not even rational to me. Why would an incontinent man want to hear that he's doomed to attract every dog and repel every woman within a hundred yards for the rest of his soggy life? Why would a continence surgeon tell most prospective pts that they won't benefit from surgery or collagen? Why would two continence experts who presumably enjoy their careers tell their medical school students and international peers that the medical field's mainstream expectations of post-RP continence are all wet? Why would they say the literature backs them up if they couldn't back *that* up, especially when their own careers and reputation are so literature-driven? And last but not least, who the hell are we to say that our lay opinions trump their 50 professional years in the trenches? After all, they not only read the literature, they contribute to it in front of God and Lange (their department head and an RP pt) and everybody. > Yet our local poll - admittedly too few respondents - shows > overwhelming dryness. Actually the tally is 12 not dry, 10 dry, and some of the "not dry" are VERY wet even after "aftermarket" continence surgery. And we don't get to count stress incontinence as "dry", as several here have done, because wet shorts are wet shorts and stress incontinence comprises most RP-induced leakage, including mine. Then there's the issue of selective poll acceptance: we seem to favor our tiny forum polls if we think they support our beliefs (e.g., "most men are dry post-RP"), yet dismiss them if they shake us up (e.g., our ADT SE poll which showed that the vast majority of our ADT pts suffer SEs significantly compromising their QOL). And, of course, as you mention, there's that little matter of sample size. We have 22 self-initiated responses; the VA's sample is drawn from millions of old men, many of whom were exposed to Agent Orange. > Do you rule out sensationalism in Dr Yang's efforts? I'm not ruling out anything, but I AM keeping an open mind, unlike so many others here who seem to be grasping at dry straws in the face of an ill wind. Just as in politics, I want facts, not party rhetoric, and before I make my choices I try to separate the two. >> I didn't ask her for statistics. > That should be the next step. I agree, and I would advise anyone making continence-threatening decisions to do just that. But perhaps even more important is to advise decision-makers that although 60 dry years were awfully convenient, a pad or three a day is such a tiny price to pay for our best shot at a cure that complete (urinary) continence should be a ways down most men's prioritized list of treatment selection criteria, IMO. I.P. >> I recognise what you're saying here, I wouldn't deny its effect, >> sometimes we want to say what others want to hear. Might Dr Yang be [quoted text clipped - 7 lines] >them upon his uro's advice largely out of curiosity about the nature of >a relatively minor nuisance? That's not even rational to me. Uh-oh! I was drawn into this thread because of this key sentence in your opening post:- >The dry guy -- the man who doesnt permanently need pads after an RP -- >is rare," Is this what your hard-bitten pros actually said? Or not? >Why would an incontinent man want to hear that he's doomed to attract >every dog and repel every woman within a hundred yards for the rest of >his soggy life? Why would a continence surgeon tell most prospective pts >that they won't benefit from surgery or collagen? I'm quite prepared to believe it and I didn't argue the point. Please don't invent dispute with me. >Why would two continence experts who presumably >enjoy their careers tell their medical >school students and international peers that the medical field's >mainstream expectations of post-RP continence are all wet? Because it's sensational and cheap at the price when one can define 'wet' as one pleases? >> Yet our local poll - admittedly too few respondents - shows >> overwhelming dryness. > >Actually the tally is 12 not dry, 10 dry, You're brazenly moving the goal-posts. The issue, as you originally broached it, was how many were pad-free. I make that 15 pad-free (including Leonard who didn't say but I seem to remember...), 5 still using at least 1 pad. Taking the liberty of of assuming JerryW's group are 7-1 and exclusive to a.s.c.p. then that brings the tally to 22 to 6. Compare that with your 10 to 12 (not dry!) using the *same* data. That's some stretching! Who's doing it, you or me? >And we don't get >to count stress incontinence as "dry", as several here have done, >because wet shorts are wet shorts and stress incontinence comprises most >RP-induced leakage, including mine. "We don't get to count stress incontinence as "dry"" because you and Yang have decided on a nit-picking notion of what passes as dry? Prior to my surgery and with a prostate closing in on my urethra I had what my GP called 'terminal drip' after taking a pee. "Not uncommon" he said. I'd say my stress leaks now amount to much the same wetting volume as my terminal drip at the time, but pre-RP I would never have said I was wet. We're talking about fluid quantities of the same order of magnitude as groin perspiration after a little effort. Wet shorts/damp shorts/slightly damp shorts/occasionally spotted - but-quickly-evaporated - shorts cover a range of wetnesses with radically different extremes of comfort for the wearers. If Yang insists on ignoring the difference let her do so but to suggest by a catch-all defintion that urinary incontinence is the 'normal' expectation, post-RP, appears to me to be alarmist and over-simplified to the point of absurdity. Those lining themselves up for RP need to understand the breadth of variation. Yang doesn't appear to be helping in this regard. >Then there's the issue of selective poll acceptance: we seem to favor >our tiny forum polls if we think they support our beliefs (e.g., "most >men are dry post-RP"), yet dismiss them if they shake us up (e.g., our >ADT SE poll which showed that the vast majority of our ADT pts suffer >SEs significantly compromising their QOL). Please don't attribute "selective poll acceptance" to me. Much more remarkable is how any of us can twist data out of all recognition to suit our purposes. As to the above, one woman's 'wet' appears to be another man's 'dry'. It's about defintion, not bias. >22 to 6 21 to 6, assuming I double-counted JerryW. > >22 to 6 > > 21 to 6, assuming I double-counted JerryW. 6 out of 27 comes out to 22%, still a lot more than the oft touted 2% "dry". Dave Perry >> >22 to 6 >> >> 21 to 6, assuming I double-counted JerryW. > >6 out of 27 comes out to 22%, still a lot more than the oft touted 2% >"dry". Dave Perry Dave, that's 22% who are using pads. > On Mon, 21 Jan 2008 08:17:40 -0800 (PST), djperr...@sbcglobal.net > wrote: [quoted text clipped - 7 lines] > > Dave, that's 22% who are using pads. Oops. Dave Perry > Uh-oh! I was drawn into this thread because of this key sentence in > your opening post:- [quoted text clipped - 3 lines] > > Is this what your hard-bitten pros actually said? Or not? I quoted them accurately and carefully. How silly of them and me to presume that if a man wets his damned pants now and then, he'll wear a pad only if he's pissing his pants due to urge, rather than stress, incontinence. They and I feel that piss is piss, and we don't want to run around -- ever -- with wet pants. >> Why would an incontinent man want to hear that he's doomed to attract >> every dog and repel every woman within a hundred yards for the rest of [quoted text clipped - 3 lines] > I'm quite prepared to believe it and I didn't argue the point. Please > don't invent dispute with me. Anyone following this thread recognizes that I don't need to invent your disagreement. I just offered the group two experts' position on post-RP incontinence, and you and many others are far more interested in debating the issue with the bird-brained parrot rather than with the source, and without even inspecting *her* sources. And now you're debating the merits and decimal points of a straw poll of 50 non-random people, amany of whom think stress piss smells better and feels dryer in their pants than urge piss, and apparently implying this trumps 50 manyears of professional experience. That's irrational, and is doing decision-makers a significant disservice. And how often do you guys grill this intensely the parrots who have reported hundreds of other articles, findings, reports, etc.? I've told you all I know about these people and their claims; if ya want more, you'll have to do what you always do: call the human sources and research the literature sources. Arguing with parrots strikes me as rather pointless. > Those lining themselves up > for RP need to understand the breadth of variation. Yang doesn't > appear to be helping in this regard. You decide that for the rest of the PC world based on a few sentences from her? I'm wordless. I.P. >> Uh-oh! I was drawn into this thread because of this key sentence in >> your opening post:- [quoted text clipped - 5 lines] > >I quoted them accurately and carefully. However, to date, 24 out of 30 here claim to not "permanently need pads". Far from being "rare" here, it's common, and turns Yang's assertion on its head. Is it an 'a.s.c.p.-thing'? Kegels? The usenet gene? Researching and seeking out the best medical skills? Or is Yang not conscientiously counting the continent? >>> Why would an incontinent man want to hear that he's doomed to attract >>> every dog and repel every woman within a hundred yards for the rest of [quoted text clipped - 6 lines] >Anyone following this thread recognizes that I don't need to invent your >disagreement. A double whammy. Not only do you invent dispute, you apparently also need to invent support for your denial of it! I'll tell you this again. I didn't and don't presume to disagree with anyone about anything relating to collagen or surgery for incontinence - I don't know the first thing about it. OK? Your question, 3 paras up, very clearly implies otherwise. Kindly keep to the issue. > I just offered the group two experts' position on post-RP >incontinence, and you and many others are far more interested in >debating the issue with the bird-brained parrot rather than with the >source, and without even inspecting *her* sources. We don't have access to the source and, in any case, the parrot assures us, above, it has quoted her verbatim. My concern?; If the parrot keeps squawking, someone here might believe it. > And now you're >debating the merits and decimal points of a straw poll of 50 non-random >people, Decimal schmecimal. We could even halve our tally and we'd still have a result so far out of Yang's orbit that, frankly, far from being non-random, one could wonder if we actively conspired to unite in a.s.c.p. expressly to rubbish her figures!! 'Non-random' doesn't even begin to explain away the yawning chasm between her results and ours. But should you have any idea what that special 'a.s.c.p.-thing' might be, don't keep it to yourself. >amany of whom think stress piss smells better and feels dryer in >their pants than urge piss Fascinating but irrelevant. You think an important commonality here is our nose for distinguishing stress piss from urge piss!? While you're prattling on about the quality of the piss, I'm trying to get you to comprehend the *only* thing that matters - the QUANTITY of it. There's a world of difference between 1 cc and 1000 ccs. Forget bouquet, forget tactility, forget dry...just think **pad**. Those risking the odd millilitre now and then are not likely to wear pads. That and that alone is the central issue. Call them 'wet' if you must, call them incontinent if it pleases you but **they**are**not**wearing**pads**. End of. >and apparently implying this trumps 50 >manyears of professional experience. I'm implying *this* study could be fatally flawed. If it is - and many are - consider it trumped. >That's irrational, and is doing >decision-makers a significant disservice. Hah!! Not even a fraction of the disservice you're rendering in worrying those at the sharp end - prospective RP patients, some of whom might be poised on a hair-line balanced decision between RP and RT - that they have a future, a near-certain prospect, of permanently needing pads. >And how often do you guys grill this intensely the parrots who have >reported hundreds of other articles, findings, reports, etc.? How often does a parrot defend the seemingly indefensible with such determination yet complete absence of reason? That's a dangerous mix for those looking for information. Most other studies even if they spring a little surprise aren't usually as readily testable as this one, and in any case, we've learnt to expect inconsistencies. Face it, Yang's result is quite exceptional - "rarely pad-free post-RP" totally overturns our own observation yet you seem bent on undermining the usefulness of our survey while having us swallow hook, line and sinker what I strongly suspect to be sensational and careless. *That* has the potential to be a disservice in spades. > I've told >you all I know about these people and their claims; if ya want more, [quoted text clipped - 8 lines] >You decide that for the rest of the PC world based on a few sentences >from her? I'm wordless. Ohhhh, cut the melodrama, we're all tiny specks, I'm deciding nothing for anyone... ...and it's not about a few sentences... just the one... (please don't add any more of your own!) >>>> The dry guy -- the man who doesn’t permanently need pads after an RP -- >>>> is rare," [quoted text clipped - 6 lines] > gene? Researching and seeking out the best medical skills? Or is Yang > not conscientiously counting the continent? I haven't been here for a bit but allow me toss my dry undies into the mix. I had the RRP in March 2000 and was bone dry, including a lack of sporadic stress incontinence, by mid-May. I didn't even use a full pack of Depends before switch to a safety net composed of "winged" maxi pads. I never had a problem with incontinence before the Dx and Tx and even now I can, as my wife says, "can hold more water than a camel." Different strokes for different folks/surgeons. So now it's 25 out of 30. FWIW, I have five good friends who are all members of the PCa club. Of those five, only one is still using a pad. Of course, we can't count him since he had his surgery the first week of December<g> rosbif whined: > We don't have access to the source There's this really neat web source called "Google"; you should try it some time. It took three clicks: http://depts.washington.edu/uroweb/directory/bios/yang.html I suggest that if you contact her, don't open your inquiry with "I took this little straw poll of 30 dudes online, and it proves your life's work means nothing". I.P. >rosbif whined: ..:-) .... 'Say What?' and 'youcan' are added to the poll which comes out now at 26 out of 32. >> We don't have access to the source > >There's this really neat web source called "Google"; you should try it >some time. ..said the pusher. It's a kind of opium and my habit is bad enough. >It took three clicks: >http://depts.washington.edu/uroweb/directory/bios/yang.html > >I suggest that if you contact her, don't open your inquiry with "I took > this little straw poll of 30 dudes online, and it proves your life's >work means nothing". I doubt it's her life's work, lol! Some medical pros are notorious for their shoddy maths. (An all-time favourite in these parts is 'Professor' Sir Roy Meadow. Eye-watering scandal.) Your continual scoffing shows you've completely failed to grasp the key point; our sample of 32 is amply large enough to be confident that at least one of the following is true:- Her assertion is incorrect. Her assertion is incorrectly reported. Those polled on a.s.c.p. have not told the truth. Subscribers to a.s.c.p. are atypical of the large population to the extent that the two almost polar-opposite results can be reconciled. If it's the last of those four, then it must completely undermine the relevance of all large-scale stats to those attending this forum. My stake - every last penny of it - is on one of the first 2. >I had a urodynamics test yesterday. << Snip >> Thanks a bunch, I.P. This was, IMHO, your greatest contribution to date (and remember the I was impressed with your early ADT work, so I am not being sarcastic.). For the first time in my post operative life, I now know that having to use a pad just in case makes me awful lucky considering I lost an entire prostate, including both nerves. While it doesn't help the fact, it certainly makes me feel better about it somehow. I'm also one of those that is surprised by I.P.'s report. I had LRP 4 1/2 years ago with one nerve bundle spared. I was using pads for about 3 1/2 mos. Haven't needed anything since. I just had an ultra-sound of the bladder and kidneys Tuesday and drank 32 oz. of water one hour prior and didn't leak with it. Looks like a lot of use here are exceptions to the norm. Ron S. -- Message posted using http://www.talkaboutsupport.com/group/alt.support.cancer.prostate/ More information at http://www.talkaboutsupport.com/faq.html >I'm also one of those that is surprised by I.P.'s report. I had LRP 4 1/2 >years ago with one nerve bundle spared. I was using pads for about 3 1/2 [quoted text clipped - 4 lines] > >Ron S. I'll add my name to that list. I wore pads for less than two weeks and did my Kegels and have not had any incotinence issues. The only time I feel like I may leak is amazingly, if I blow my nose too forcefully.. go figure. My most pressing SE is periodic bouts of a weak stream, even though I know my bladders full and that I could put out a four alarm fire. Sitting helps but I cannot correlate anything to why this comes and goes....  SignaturePSA @ 45 yrs. = 4.7 02/06/2007 Biopsy 03/16/2007 G7(3+4),T1c RLRP 06/12/2007 G7(3+4),T2cN0M0 Neg margins PSA 07/16/2007 = <0.1 PSA 09/12/2007 = <0.1 PSA 12/18/2007 = <0.1 > I drank 32 oz. of water one hour prior and > didn't leak with it. I can wake up in the morning with a full bladder, do a variety of exercises as a sphincter test without thinking about continence, cough hard, pass gas, walk up and down the stairs, all with a dry pad, THEN void a measured 1,000-1,200 ccs -- a huge quantity of urine. But that's no guarantee I'll stay dry all day, especially as my sphincter muscles tire. I leak more when relatively empty than when full. I.P. >> I drank 32 oz. of water one hour prior and >> didn't leak with it. [quoted text clipped - 7 lines] > >I.P. Wow, that's a huge amount. The most I've ever held is 500ml and that's rare. Most times I pee it's between 150 and 250 ml . >>> I drank 32 oz. of water one hour prior and >>> didn't leak with it. [quoted text clipped - 9 lines] > Wow, that's a huge amount. The most I've ever held is 500ml and > that's rare. Most times I pee it's between 150 and 250 ml . My (measured) norm runs 500-700 cc; I often hit a liter if I'm sleeping well or when my catheter fails to work -- as they always have -- after any catheterized surgery. FORTUNATELY, I wake up and walk into the bathroom first in the former case. UNFORTUNATELY, the damned nurses flat refuse to believe my catheters are blocked until I drag my butt out of bed, dance around and/or mess with the catheter, and ultimately manage to flood my bag with way over a liter -- which they ALSO refuse to believe, figuratively. I once had to go to an ER to get the catheter out so I could pee after my RP, and the next day I called a nurse and had her talk me through removing yet another blocked catheter, which, at my surgeon's blessing, I never replaced. I.P. Freely Which beats the hell out of not peeing. I had an open RP in March of 2005. Catheter out in 10 days. Leaked for a few months and used pads. Then I stopped...except for Leonard's fine explanation of the 'just the tiny bit of urine left in the system.' The 'no matter how you jump or dance, the last few drops go in your pants' thing. I hung on to John Loomis who after a year and a half or so...he woke up with an erection. At almost 3 years...I don't have spontaneous erections...but can have fine orgasms...and Levitra (not the others that I have used every day or so from day ONE after surgery)...seems to help. The 'medical thinking' has changed about erections. They used to say that 18 months was the limit, and if you didn't have erections by THEN...you won't. However...they have increased that to 3 years. I found out also that even if you have both nerves spared...but they needed a few extra stitches here or there...things can be altered. Each man is anatomically different...the 'numbers' may be constant...but the anatomy of the prostate and bladder can vary. I found that I had only ONE seminal vesicle instead of two. Who knew? :-) Best to all, Ron B. Chicago >> I had a urodynamics test yesterday. > [quoted text clipped - 8 lines] > prostate, including both nerves. While it doesn't help the fact, it > certainly makes me feel better about it somehow. Same here. I can stop wondering what I'm doing wrong (very little), wondering whether some form of intervention is in the cards some day (not unless the floodgates open), wondering whether Kegels will help (they should, and six diligent weeks should answer the question). But a more universal question remains unanswered: why such a huge disparity in continence statistics? If I were considering an RP or incontinence intervention, I'd be reading Dr. Yang's pubs in detail. I.P. >>I had a urodynamics test yesterday. > [quoted text clipped - 8 lines] >prostate, including both nerves. While it doesn't help the fact, it >certainly makes me feel better about it somehow. Steve, has your pad use, "just in case" ever actually turned out to be needed? I stopped using pads even though it meant I left some pretty big spots on my underwear from time to time for the first few months. I felt that getting rid of the safety net would force me to control it. > Steve, has your pad use, "just in case" ever actually turned out to be > needed? I stopped using pads even though it meant I left some pretty > big spots on my underwear from time to time for the first few months. > I felt that getting rid of the safety net would force me to control > it. Oh, yeah. I still have a pretty active job and I still do quite a bit around the home, or with my truck, or at my son-in-law's bakery, etc. If I so much as pick up a file box the wrong way, I sometimes wish the whole rest of the day that I hadn't forgotten my pad. And, when I do forget and squirt just a little, that wetness is like a magnet. I end up leaking all day until I get into a dry pad or dry shorts. > If I > so much as pick up a file box the wrong way, I sometimes wish the whole rest > of the day that I hadn't forgotten my pad. And, when I do forget and squirt > just a little, that wetness is like a magnet. I end up leaking all day > until I get into a dry pad or dry shorts. That would be enough for me to wear pads every day. I see no downside to them for a man who isn't bone dry all the time. I.P. >> If I so much as pick up a file box the wrong way, I sometimes wish the >> whole rest of the day that I hadn't forgotten my pad. And, when I do [quoted text clipped - 3 lines] > That would be enough for me to wear pads every day. I see no downside to > them for a man who isn't bone dry all the time. This was in response to a question about me saying I wear them "just in case." I almost never forget to put one on. >> If I >> so much as pick up a file box the wrong way, I sometimes wish the whole rest [quoted text clipped - 6 lines] > >I.P. For me it's would have a major downside because of the way my penis points, it's just not comfortable with a pad. >>> If I >>> so much as pick up a file box the wrong way, I sometimes wish the whole rest [quoted text clipped - 8 lines] > For me it's would have a major downside because of the way my penis > points, it's just not comfortable with a pad. Alas, mine doesn't point. It's way too content to just lay wherever I place it and conform to its environment. It is rather non-descript until it's allowed out for work or play, at which point gravity and/or blood flow awaken it to no longer resembles a one-eyed, freshly-killed toad. I.P. I will speculate a little: Most RP patients are older. People of that generation tend to be more deferential to authority figures such as surgeons. So maybe they really don't want to "make a fuss". This group is self-selecting to be more technically literate and questioning than the population at large. So members would have fewer inhibitions laying it on the line to their surgeons. But all that said, the percentages of contributors here reporting incontinence seem to tally with the generally-accepted figures. So add me to the list of people who is struggling to the data provided to IP. -- Peter Headland > The dry guy -- the man who doesn't permanently need pads after an RP -- > is rare, for one simple, obvious reason: half the flow control valves > are gone. Compound that by removal of one or both of the nerve bundles > that control the remaining valve, and we're lucky to need only a few > pads a day. There have been many studies on this. The range of outcomes from these studies tends to be that 80% - 100% of patients regain continence within a year or two (and most far before that) depending on the study and definition of continence. See: http://palpable-prostate.blogspot.com/2007/02/post-rp-urinary-incontinence.html --- The Palpable Prostate http://palpable-prostate.blogspot.com > There have been many studies on this. The range of outcomes from these > studies > tends to be that 80% - 100% of patients regain continence within a > year or two (and > most far before that) depending on the study and definition of > continence. Maybe someone with more time and motivation can track down this study and see whether it sheds any light: Urol Oncol. 2003 Mar-Apr;21(2):93-100. Related Articles, Links Treatment decision-making by men with localized prostate cancer: the influence of personal factors. Berry DL, Ellis WJ, Woods NF, Schwien C, Mullen KH, Yang C. School of Nursing, University of Seattle, Department of Urology, University of Washington Medical Center, Seattle, Washington, USA. donnalb@u.washington.edu OBJECTIVES: For many men with localized prostate cancer, there is no definite answer or unequivocal choice regarding treatment modality. This high-stakes treatment decision is made in the context of great uncertainty. The purpose of this study is to systematically document meaningful and relevant aspects of treatment decision-making reported by men with localized prostate cancer. METHODS: Focus groups and individual interviews were conducted with 44 men who were within 6 months of a diagnosis of localized prostate cancer. Using content analysis and grounded theory analytic techniques, major aspects and processes of men's treatment decision making are identified and described. RESULTS: The participants reported their experiences beginning with influential personal history factors, followed by detailed descriptions of information gathering and the important influence of expected treatment outcomes and other individuals' cancer histories and/or shared opinions. Twenty of the 44 (45%) participants relied heavily on the influence of another's opinion or history to finalize a decision, yet only 10 of the 44 (22.7%) reported this individual to be their physician. A common process, "making the best choice for me" was explicated. CONCLUSION: Clinicians assume that men are making rational treatment decisions based on reliable information, yet this study documents a different reality. Patient education about medical therapies and the patients' own medical factors is not enough. A clinic visit dialogue that brings personal factors to the conversation along with medical factors can guide a man to making his "best choice" for localized prostate cancer. Publication Types: * Research Support, U.S. Gov't, P.H.S. PMID: 12856636 [PubMed - indexed for MEDLINE] I.P. > Maybe someone with more time and motivation can track down this study > and see whether it sheds any light: [quoted text clipped - 4 lines] > Treatment decision-making by men with localized prostate cancer: > the influence of personal factors. That paper is about how patients make treatment decisions prior to treatment whereas this thread is about incontinence outcomes after treatment. --- The Palpable Prostate http://palpable-prostate.blogspot.com >> Maybe someone with more time and motivation can track down this study >> and see whether it sheds any light: [quoted text clipped - 8 lines] > treatment whereas this thread is about incontinence outcomes after > treatment. Don't most men's top two treatment selection criteria include a continence projection? Wouldn't you want all the continence data you could find if you were choosing a treatment? Don't you thnk it revealing and alarming that so many newbies choose treatments based on their buds' advice rather than their uros' and oncs' advice? Might you place more faith in continence failure rates presented to post-RP specialists than in a surgeon who's trying to sell you his services based on his continence projection claims? Isn't it important that so many surgeons define "dry" as getting by on only one pad a day? Heck, I don't even soak one pad in an intensive 5-hour, whole-body gym session ... as long as I don't look at a trampoline. I.P. > >> Maybe someone with more time and motivation can track down this study > >> and see whether it sheds any light: [quoted text clipped - 12 lines] > continence projection? Wouldn't you want all the continence data you > could find if you were choosing a treatment? You would want relevant data but not irrelevant data on a different topic. > Don't you thnk it revealing > and alarming that so many newbies choose treatments based on their buds' [quoted text clipped - 5 lines] > soak one pad in an intensive 5-hour, whole-body gym session ... as long > as I don't look at a trampoline. >>>> Maybe someone with more time and motivation can track down this study >>>> and see whether it sheds any light: [quoted text clipped - 11 lines] > You would want relevant data but not irrelevant data on a different > topic. If you don't consider incontinence expectations relevant to treatment choice, I suspect you're in a minuscule minority. Quoting the abstract: "The purpose of this study is to systematically document meaningful and relevant aspects of treatment decision-making reported by men with localized prostate cancer." That's why I started the thread, as incontinence expectations relate directly to initial and follow-on treatment decisions. I.P. > Their eyebrows shot up when I mentioned that on a GOOD night, I won't > wake up until time to get up, and may void a quart of urine then. > "That's way too much urine. It over-stretches the bladder." > > Well, excuuuuuuuse me. It's not like I was deliberately holding it. Any > night I sleep for eight uninterrupted hours also goes in the Win column. I too sleep through the night, always have. What I find interesting is that when I wake up with the full bladder, I don't leak a drop until after I empty the thing. I can put on clothes, move my wife's car outside the gate so the dogs won't escape when she goes to work, scrape ice off the windshield, come back inside and the whole time not drip a drop. If I urinate first, I dribble the whole time. As for telling tall tales to the doctor, I can relate to that. I recall telling my doc that I was using 2-3 pads/day when I really knew 4-5 was the norm. A few months later, saying 1-2 when I was using 3-4. I think I was focusing on the one or two days when I indeed needed only 1-2 and forgetting about all the others when I needed more. I was treating the low pad days as the norm and the others as "temporary regressions" on the road to total continence. At the 18 month mark to the day, the time when everyone will be as continent as they're going to get, I actually left the house pad-free. I drove to the Post Office, went into a store and did some shopping. No major problems, a little too damp though in the underwear upon returning home. Had I gone more than a few blocks of walking however, things would have been much worse. Also, had I gone directly to my doctor later that day I would probably have said "Good news, no pads." The point is, I wasn't intentionally fibbing to my doctor, I really believed what I was saying and thinking, blinded by my belief that things were better than they really were. Also, I used to sleep without a pad but after two or three episodes of peeing the bed while dreaming of urinating I now wear a pad. Some wacko psychological thing since I hadn't done that pre-op since I was about six years old nor have I done it while wearing a pad. Maybe I need a psychiatrist more than a urologist. Incidently, my wife works in both hospitals and nursing homes and has seen many patients who had in the past been treated for prostate cancer. The pad wearers far exceed the 2% often quoted here and in the literature. Granted, some of these folks date back to pre-nerve sparing days but most don't. Dave Perry > I too sleep through the night, always have. What I find interesting > is that when I wake up with the full bladder, I don't leak a drop > until after I empty the thing. I can put on clothes, move my wife's > car outside the gate so the dogs won't escape when she goes to work, > If I urinate first, I dribble the whole time. Same here. I have always leaked more when relatively, maybe almost completely, empty. > scrape ice off the windshield I vaguely remember doing that as a kid. I quit it >40 years ago when I discovered that hot water melts ice. Haven't scraped since then, and haven't damaged a windshield yet; haven't even seen an existing chip or crack propagate. Physics beats manual labor ALL to hell. > after two or three episodes of peeing the bed while > dreaming of urinating I now wear a pad. Some wacko psychological > thing I'm always relieved to awaken fully, dry, after dreaming that I've been peeing for 20 minutes. I'm sure the full bladder triggers the dream rather than vice versa. > Incidently, my wife works in both hospitals and nursing homes and has > seen many patients who had in the past been treated for prostate > cancer. The pad wearers far exceed the 2% often quoted here and in > the literature. If I had heard my opening post data from any old family physician, without solid substantiation, I'd never have printed it here. But Yang (Claire C.) and Clowers (Diane C.) have been wallowing, writing, publishing, and lecturing in this stuff professionally since the 1980s and are very highly praised by their peers. Their claims warrant our consideration, IMO. I.P. > > after two or three episodes of peeing the bed while > > dreaming of urinating I now wear a pad. Some wacko psychological [quoted text clipped - 3 lines] > peeing for 20 minutes. I'm sure the full bladder triggers the dream > rather than vice versa. 'Fraid not. For fifty-five years, more or less, I never wet the bed, full bladder or not. More recently sleeping while padded never wet the bed, full bladder or not. Send me to bed now though without pad and the risk of bed-wetting is quite high - three times over a span of a few months. Sounds psycho to me. > > scrape ice off the windshield > > I vaguely remember doing that as a kid. I quit it >40 years ago when I > discovered that hot water melts ice. Haven't scraped since then, and > haven't damaged a windshield yet; haven't even seen an existing chip or > crack propagate. Physics beats manual labor ALL to hell. Physics did crack my windshield although it was from washing the dust off a warm windshield with a garden hose. Existing chip grew at the speed of light, or at least within the blink of an eye, into a crack that covered the whole width of the glass. Maybe the ice offers some temporary protection while everything heats up somewhat. No matter though, heating the water and carrying it to the car is more bother than the thin film of ice that accumulates only occasionally in our more balmy coastal clime. I only mentioned it in my first post since an ice scrape this morning was still fresh in my mind. Dave Perry > heating the water and carrying it to the car is more bother > than the thin film of ice that accumulates only occasionally in our > more balmy coastal clime. I've lived in upstate NY and northern Utah, and Canada is just 3-4 hours away from where I live now. Those spots are icy enough. But the REAL ice storms were in northern Alabama, where a night of drizzle at 32 degrees often leaves a centimeter of ice on a windshield. In those climates, filling a milk jug or two from the hot water tap is effortless compared to the alternative. Yes, we had hot tap water even in Alabama. ;-) Your garden hose experience doesn't surprise me. Your cool water contracted the warm surface, placing the surface glass under tension. My warm water induces surface expansion, placing it in compression. Yes, folks, we know this is unrelated to PC. OTOH, it does relate to almost every one of you, and I hope it saves some of you a lot of hassle. I.P. >> Their eyebrows shot up when I mentioned that on a GOOD night, I won't >> wake up until time to get up, and may void a quart of urine then. [quoted text clipped - 38 lines] > the literature. Granted, some of these folks date back to pre-nerve > sparing days but most don't. How do you know that the people she sees consitutue a random sample from the entire population of men who have been treated for prostate cancer? To settle a question like this, you need to study the entire population. I'm reminded of the story of how at a meeting of a prostate cancer support group, someone asked how many men were no longer impotent. One man raised his hand. From this the paricipants concluded that impotence was the rule until someone pointed out that most of the men who had regained potent=cy weren't attending such meetings. they were home having sex. Similarly, if you attended a meeting of AA, you might conclude that virtually everyone in this country is an alcoholic. > Dave Perry >I.P. Freely >And apparently thats the NORM I.P., I certainly don't doubt what you say the Doc and Nurse told you; but, that's not consistent with my experience and what I've learned from talking with other RP patients. I have some small leakage - no more than a few drops - when squatting or lifting (stress), or when I'm really tired. I've not used pads since a few weeks after surgery. (It's been too long ago to remember exactly.) I feel lucky and I'm sorry you and others have more problems. But, what they are saying just doesn't sound "right" to me. Take care and best wishes. Burney RP in 1995 (age 52) RT in 2000 ADT (Casodex) 10/06 - 8/07 Latest PSA - 0.13 burney dot huff at mindspring dot com > I.P., I certainly don't doubt what you say the Doc and Nurse told you; > but, that's not consistent with my experience and what I've learned > from talking with other RP patients. A little arithmetic implies these two have analyzed, diagnosed, treated, and/or lectured to something approaching 100,000 pts and peers. Their careers depend on their credibility, and in no small part to the fact that their boss, Paul Lange, and many of their peers, are also PC patients. A researcher isn't likely to publish dozens of peer-reviewed studies with hundreds of co-authors unless their peers trust them. I.P. >patients. A researcher isn't likely to publish dozens of peer-reviewed >studies with hundreds of co-authors unless their peers trust them. > >I.P. I.P, my only point was that it seems clear that most of us in this group have trouble believing Dr. Yang's assertion that most patients have significant (whatever that means) incontinence problems and lie to their Docs about it - resulting in bad data. Dr. Yang does have an extensive curriculum vitae. For anyone who is interested, here's the url. http://depts.washington.edu/uroweb/print/cv/yang_cv.pdf As for your point about a researcher not being likely to publish dozens of peer-reviewed studies.......... According to his curriculum vitae, Dr. Yang currently holds non-tenured assistant and adjunct professor positions (in urology and neurology) at the University of Washington. Do you think the old saying about "publish or perish" no longer applies to non-tenured faculty? RP in 1995 (age 52) RT in 2000 ADT (Casodex) 10/06 - 8/07 Latest PSA - 0.13 burney dot huff at mindspring dot com > As for your point about a researcher not being likely to publish > dozens of peer-reviewed studies.......... [quoted text clipped - 4 lines] > saying about "publish or perish" no longer applies to non-tenured > faculty? You omitted the rest of my sentence: "A researcher isn't likely to publish dozens of peer-reviewed studies *with hundreds of co-authors unless their peers trust them*." I.P. I was just striving for brevity. I did not mean to leave out anything for malicious reasons. I believe my point is still valid. A non-tenured professor, especially at a research institution, had damned-well better publish if he (or she, as in this case) doesn't want to perish (lose their job). And, academia is full of non-tenured professors/researchers who are eager to publish. Best wishes. Burney PS - I had the impression you lived on the other side of the Cascade Curtain. Do you come all the way over to this side to see Dr. Yang, or was I wrong about on which side of the state you live? BH >> As for your point about a researcher not being likely to publish >> dozens of peer-reviewed studies.......... [quoted text clipped - 10 lines] > >I.P. RP in 1995 (age 52) RT in 2000 ADT (Casodex) 10/06 - 8/07 Latest PSA - 0.13 burney dot huff at mindspring dot com > I was just striving for brevity. I did not mean to leave out anything > for malicious reasons. I know that. Your sterling character gelled some time ago. > PS - I had the impression you lived on the other side of the Cascade > Curtain. Do you come all the way over to this side to see Dr. Yang, > or was I wrong about on which side of the state you live? You're right. But I got and get all my treatment in Seattle due the complexity of the dual prostate/colon surgery and the team of doctors I found there. The fact that it hasn't cost me a cent is just icing on the cake. It's an easy 3-hour trip as long as Snoqualmie Pass is open. I.P. >> I.P., I certainly don't doubt what you say the Doc and Nurse told you; >> but, that's not consistent with my experience and what I've learned [quoted text clipped - 8 lines] > > I.P. Sorry. I looked at her CV, and while it is respectable, it is not particularly impressive. Also, I couldn't find any of the papers which clearly involved the issue we are debating here. While number of papers is not necessarily a guarantee of wisdom, with that as a criterion, either Peter Scardino or Patrick Walsh have much, much longer CVs. Moreover, each is highly respected as a biomedical scientist. I doubt very much that she has seen hundreds of thousands of patients who have had RPs. > While number of papers is not necessarily a guarantee of wisdom, with > that as a criterion, either Peter Scardino or Patrick Walsh have much, > much longer CVs. Moreover, each is highly respected as a biomedical > scientist. Yep ... and their specialty is surgery. Yang's and Clowers' specialty is impotence and incontinence, and Yang said studies support her claim that guys with post-RP problems tell their third-party pts more than they tell their surgeons. Stranger things have happened than gurus being successfully contradicted. Google Lorenzo's Oil and helicobacter pylori for familiar examples. And would you co-author papers with an uncredible coworker? > I doubt very much that she has seen hundreds of thousands of patients > who have had RPs. I'm sure you're right. That's why I said something quite different: "A little arithmetic implies these two have analyzed, diagnosed, treated, and/or lectured to something approaching 100,000 pts and peers." 2 people (Yang and Clowers) X 50 years collective experience X 10 pts a day X 5 days/wk X 50 weeks/yr = 250,000. Add their decades of lecturing locally and nationally on the subject. Heck, maybe they HAVE reached "hundreds of thousands of pts and peers" relevant to their specialty. You guys are examining the lichens rather than the redwoods in the forest. The message is not a publication count, nor a poll of outspoken internet people, nor (at this level of examination) a meta-analysis of the continence literature, nor an examination of Walsh's (whom many are eager to dismiss as a knife-happy buzz saw when the subject of radiation or chemistry arises) expertise. The message is twofold: 1. Two incontinence experts claim their experience and the literature generate and support their professional opinions that the party line is misleading. 2. People making treatment choices should be aware of the controversy. I don't think anyone here has the right or the expertise to dismiss these experts' opinions without at the very least examining whatever literature Yang and/or Clowers have seen AND being privy to their combined 50 years' experience. To do so may unduly bias a new patient's choices. I.P. >> While number of papers is not necessarily a guarantee of wisdom, with >> that as a criterion, either Peter Scardino or Patrick Walsh have much, [quoted text clipped - 37 lines] > combined 50 years' experience. To do so may unduly bias a new patient's > choices. You seem to be rejecting the opinions of Scardino and Walsh "because they are surgeons". You often hear this canard. But both these men work with diverse groups of colleagues who are knowledgeable about different aspects of prostate cancer and its treatment. They collaborate with such people in their research. To suggest that no one in such a group would be aware of sources of bias in such studies is to ignore the reality of the way biomedical research is done. The clinical experience of specialists in the treatment of incontinence is not too relevant. About the only insight they might have to add is that the patients they see, who represent a highly biased sample of the total population of men treated for prostate cancer, usually tell them that they didn't tell their surgeons the truth about how much trouble they were having. This suggests the possibility that incontinence is underreported, but it certainly doesn't establish it as a fact and it gives us no quantitative guide about how common that is. As to their qualifications to examine the literature is concerned, I don't see how their experience gives them any special insight in the matter. If anything, it might bias their view of the subject. If you could give some references in the biomedical literature which deal specifically with the issue of underreporting of incontinence, I would be happy to look at them. Until we see something specific, we are just making noise. > I.P. > You seem to be rejecting the opinions of Scardino and Walsh "because > they are surgeons". I'm neither rejecting nor adopting them or Yang/Clowers. I'm just parroting other experts' claims for readers' consideration. The only rejection I see here is of this new (to us) paradigm. > You often hear this canard. Yes, we do, and each time we see it I point out exactly what you do: > But both these men > work with diverse groups of colleagues who are knowledgeable about > different aspects of prostate cancer and its treatment. They > collaborate with such people in their research. To suggest that no one > in such a group would be aware of sources of bias in such studies is to > ignore the reality of the way biomedical research is done. I've made that point repeatedly in past discussions, but now that it supports the party line, it's somehow more acceptable? > The clinical experience of specialists in the treatment of incontinence > is not too relevant [to incontinence]. That is a stunning and seemingly arrogant statement. > About the only insight they might have to add is > that the patients they see, who represent a highly biased sample of the [quoted text clipped - 3 lines] > underreported, but it certainly doesn't establish it as a fact and it > gives us no quantitative guide about how common that is. So the literature they study, teach, write, and/or present for peer scrutiny is inconsequential? Certainly I'd agree men who soak their diapers are a biased sample; why would a dry man complain to his uro or to a continence specialist about incontinence? The only facts I presented is that these highly experienced, peer-praised pros made these claims and say they're based on their experience and supporting literature. > As to their qualifications to examine the literature is concerned, I > don't see how their experience gives them any special insight in the > matter. You're implying that any of us is better qualified to research the literature than continence practicioners, teachers, and researchers? Does not your experience as a mathematician give you special insights into things mathematical, especially over mathematical laymen such as, oh, say ... physicians? > If anything, it might bias their view of the subject. So on a flimsy "might", we should dismiss their claims without even looking for and at their evidence? Gee, I don't see anyone disputing Steve Kramer's oft-repeated mantra that PC should be cured by 2015. "Might" there be a bias in this group's perceptions of its own members? > If you could give some references in the biomedical literature which > deal specifically with the issue of underreporting of incontinence, I > would be happy to look at them. You can find them as easily, probably mor so, than I, and I have no reason to take the time. > Until we see something specific, we are just making noise. Precisely. So on what basis do so many of this group say these two specialists are wrong? I.P. It took me 6 months to go without a pad. After 5 1/2 years I only have stress leakage, like when bending to tie my shoes. I almost always sleep through the night. I can tell you that I don't have the old discomfort associated with needing to go... it's kind of like, I just have a kind of full feeling that it's time. I don't do Kegels either. SignatureJK Sinrod www.MyConeyIslandMemories.com >I had a urodynamics test yesterday. They monitor bladder pressure, fill >and empty it via catheter, and stress it while full, all while watching [quoted text clipped - 81 lines] >I.P. Freely >And apparently thats the NORM I can't factually argue with what your doctors are telling you but it just doesn't sound right to me based on the relatively small number of men I've met and talked with about these issues. I can't help but wonder if part of what they are saying is meant to soften the impact of them not being able to find a way to help solve your issue. I'm also left scratching my head about their comment regarding Detrol and it's side effects. I've got overactive bladder and have tried almost every overactive bladder medice on the market and detrol seems no worse or better then any of them and neither deetrol or any of them have given me painful side effects, just some constipation at times. My uro has been gently pushing me to have the urodynamics done to pin down what's going on with my bladder - I'm glad to see a couple posts suggesting having it done is not an ordeal. Still, when I ask him what he will do differently once we run the tests the only answer is that we'll have a better idea of what's going on. Yeah, but will it lead to any treatment we haven't already tried??? If not, it's just an academic exercise. > I can't help but > wonder if part of what they are saying is meant to soften the impact > of them not being able to find a way to help solve your issue. I don't think these experienced pros are setting the prostatectomy world and their reputations on their ears for my sake. > I'm > also left scratching my head about their comment regarding Detrol and > it's side effects. That was my comment and my experience, not theirs. Abdominal pain is a documented SE of overactive bladder meds, and I was doubled over for a week -- 2-3 days on Detrol plus 3-4 more to recover after I quit the stuff. It's something we IBS patients have experienced for decades -- colon spasms accompanying constipation. > My uro has been gently pushing me to have the urodynamics done to pin > down what's going on with my bladder - I'm glad to see a couple posts > suggesting having it done is not an ordeal. Not at all. A couple of deep breaths as they thread the catheter in, and that's it ... until that first post-procedure pee pee, which stings a bit. > Still, when I ask him > what he will do differently once we run the tests the only answer is > that we'll have a better idea of what's going on. Yeah, but will it > lead to any treatment we haven't already tried??? If not, it's just > an academic exercise. What it does is tell you and your docs what the problem is and thus what may help. I already knew that Detrol helped a little but sometimes hurt me a lot, but if the test had revealed bladder overactivity, I'd have tried the Oxybutinin patch again; it calmly and effectively resolved the bladder overactivity I had before my PC diagnosis. I.P. |
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