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Medical Forum / Diseases and Disorders / Prostate Cancer / May 2005Approaching the viod
Well here I am, one week away from my RRP surgery. I've done all the research, and picked the best surgeon I could find. I have explored several topics on my mind through this forum and I really appreciate the feedback you guys have given me. I've taken all of your advice seriously and I have learned so much from your comments. Now the time has come. I know I will never be the same as before and that bothers me a lot. I'm hopeful that the cancer is prostate-contained and that I will be cured. But, that is not my biggest concern. I'm not afraid to die, it will come eventually anyway. Loss of my sexual function will be devastating, but I can probably learn to deal with this. Loss of bladder control is more of a worry. I won't spend an extended period of my life in diapers. Sorry, I just don't want to live that way. Wish me luck, Pete >Wish me luck, More than that. I'll be thinking of you and praying for you. Lots of men have traveled your current path and they are ok. I say you will be too. Take care and keep us posted. Dave Thank you Pete, There are a lot more men walking around today because they made a decision to do something to try to control this disease. There are side effects associated with any treatment protoco;l that we can deal with, whether it be impotence/ incontinence or both. I feel the important thing to keep in mind is that; dead men don't wet their pants or have sex. The last statement may be blunt, but that's the way I am. I wish you the best. Tom > >Wish me luck, > [quoted text clipped - 4 lines] > > Dave > Well here I am, one week away from my RRP surgery. I've done all the > research, and picked the best surgeon I could find. I have explored [quoted text clipped - 14 lines] > Wish me luck, > Pete Pete: I do wish you the very best of luck. I am going through my bowel prep and am about to take my last dose of Phospho-soda and antiobiotics. Then I'll hang around the toilet for a while, try to drink as much as I can (I'd prefer Jack Daniels for my spirits, but suspect that Gatorade would be better for my body) and then I will try to sleep and hopefully sleep late. I check-in to the hospital at 11:30 am andmy robotic is scheduled for 1:30 pm. Like you, I have done a lot of research. I feel that I've picked a top notch surgeon after interviewing four in person and talking to another some distance away. I've lurked here for a few weeks and picked up all kinds of very helpful advice and more importantly some wisdom that only comes from those who have been there and done that and would gladly give back the t-shirt if they could. You have two concerns that I also share. Pete, I don't know you. You don't know me. But, I want to be honest with you because we're both about to go through a life-changing surgery and we both face similar risks. And I know that we both share a mutual desire to live a long life and to enjoy that life. But, what struck me is that you said, "Loss of my sexual function will be devastating," and I simply want to gentlly remind you that your sexual function is certainly going to change. The extent of the change is unknown for you and for me. I do take some solace in the realization that, for me, I am not going to lose my sexual function. I may lose the ability to become erect. I will certainly lose the ability to ejaculate. But, even with those loses I will be able to give and receive pleasure. I should still be able to orgasm. I will still be able to share an intimacy with another woman that I believe can be meaningful. Surveys that I have read of men who have a prostatectomy are pretty clear that the primary quality of life issue is incontinence. Some men don't have that problem from the moment the catheter is removed. Most have some problems and enough men have severe problems that I can't ignore the possibility that I could be incontinent to some extent for the rest of my life. My father died with esophogeal cancer about 15 years ago. He had a catheter when he died, but before that he would wet himself because of the treatment for his cancer once it had spread. The radiation led to incontinence. He was humiliated to have to wear Depends. My heart broke for him as I saw the look in his eyes and heard the pain in his voice about having to wear "diapers" as he called them. He had always been a strong man. He drove a log truck. He was a proud man. It hurt to see how he hurt having to face this reality in his life. My father has been gone now for 15 years. I would give so much to have him with me now. I loved him so much. Of course I never told him that to his face and I do take some comfort in my belief that he does know now in death what I could not tell him life. But, I would want him here now Depends and all. And I know that he would want to be here to see his grandsons and his granddaguhter and the great-grandsons he never knew. I'll bet he would even wear Depends if it meant that he could pick up his great-grandson from preschool as I am privileged to be able to do. Pete, I don't know anything about your life, your family (even if you have one), or the people who love you and whom you love, but for me life is more than Depends. If I have to wear them I will. I began life wearing diapers and a lot of people end their life wearing them. Maybe I will be one. I want you to know that I will be thinking of you in the next week and I will be praying for a successful surgery and that your doctor gives you a leakproof anastamosis to reconnect your urethra and bladder and that your muscles respond to this new challenge keeping you dry as soon as they can! If it takes awhile, I hope you will give it all a chance. A friend of mine just had surgery last week to install a new sphincter to control his urination. The surgeon put in some muscle tissue to give him more control. He has been wet for about two years now. Don't burn any bridges before you come to them! Fred He Loss of bladder control is more of a worry. I > won't spend an extended period of my life in diapers. Sorry, I just > don't want to live that way. Thanks Fred, your advice is helpful and I'm trying for a positive attitude althought its pretty obvious I'm on a negative track right now. Pete Pete, Keep your chin up! I'm going in T1c with my Gleason 3+3 and my first and only PSA of 15.3 and a very small prostate and every time I've sat down with my surgeon he scratches his chin, stares at my chart and says, "You are really puzzling." With your PSA I should see something more here and I don't." Nothing palpable, nothing on the ultrasound, nothing on the Bone Scan, nothing on the CT Scan, but the biopsy found caner in 3 of 6 cores on the left with 25 percent of the tissue cancerous and 3 of 8 on the right for 15 percent. I told him, "Hey, I'm just one of those virile over-sexed pastors you see on the TV in some expose. My prostate is just spittin' out PSA right and left because of my exceptional masculinity and obious appeal to women." He looks at me and shakes his head again and says, "Like I said, you're really puzzling. In more ways than one." Then he laughs. Your Gleason is a notch higher than mine. You're a dozen years older. My PSA is three or so times higher than yours. I read what you wrote questioning why something wasn't done earlier for you. So, have you had a Bone Scan or a CT Scan? I stuck your figures or those that I could cull from your posts into the Sloan-Kettering Prostate Nomogram and our pre-treatment prognosis is similar. You appear to have a little more chance of extra-capsular penetration but we both have similar chances of seminal vesicle or lymph node involvement (both are fairly low). What you can have going for you, what you can control and I am convinced it can help make a difference even in prostate cancer is your attitude and your belief that you are going to be okay. When I work around folks with cancer I always encourage them to try and assume the best until they learn otherwise. Fred > Thanks Fred, your advice is helpful and I'm > trying for a positive attitude althought its pretty > obvious I'm on a negative track right now. > > Pete Hey Pete, You are on the right track Sex will be fine after RP.. I know....I do it. I had RP in 1999, I was 49. I have sex whenever my wife lets me.... Viagra does work....by the way. Walk, exersize. You are free of cancer, and that is #1 > Well here I am, one week away from my RRP surgery. I've done all the > research, and picked the best surgeon I could find. I have explored [quoted text clipped - 14 lines] > Wish me luck, > Pete > Loss of bladder control is more of a worry. I > won't spend an extended period of my life in diapers. Sorry, I just > don't want to live that way. Pete, I've been in 'em for six months now. I think of 'em as expensive jockey shorts. I give a damn, but they're about the lowest-impact SE I can imagine of the entire SE list. I joke about them with my friends, my homeowners' association meeting . . . anybody and anyplace I think they'll get a laugh or may help someone else quit worrying about 'em or feel less self-conscious about my cancer. I'm athletic, and I spend scores of days each year at the shore with dozens to hundreds of other athletes from 15 to 75, and I'm tellin ya . . . diapers beat a sore leg or something in my eye or no wind (I love to sail) or living in a big city or having a JOB or having IBS or wearing shoes that are too tight ALL to hell. Better yet, the odds of your stayng incontinent are very low. Fuhghedaboutit. You're creating a problem where very little exists. Try this: think about the form of incontinence some RT patients face, and how many years they may have to wait for THAT shoe to drop. That -- and winter -- should make you appreciate your insulated jockey shorts. I.P. >> Loss of bladder control is more of a worry. I >> won't spend an extended period of my life in diapers. Sorry, I just [quoted text clipped - 3 lines] > jockey shorts. I give a damn, but they're about the lowest-impact SE I > can imagine of the entire SE list. > I.P. Pete and Fred I hope the very best for both of you. Pete, I.P. is right about the incontinence and the diapers. I had my RP this past March 24th and have been wearing Depends and pads since the removal of the cath on April 6 and although I wish I didn't have to wear the diapers and pads they become almost second nature to you in a short period of time. Best of luck to you both ! (Jack)ie > > Loss of bladder control is more of a worry. I > > won't spend an extended period of my life in diapers. Sorry, I just > > don't want to live that way. > > Try this: think about the form of incontinence some RT patients face, and > how many years they may have to wait for THAT shoe to drop. There it is again. "some RT patients", "how many years", "THAT shoe to drop". Not real straight about it. There are side effects and factors that drive the very personal and life changing decision of treatment choice. It is silly to let your cognitive dissonance show through. It is unfair to slide in sniggly remarks in the guise of helping a brother. The fact is, the side effects of Rad are significantly less and the odds of no long term problems are better than with the alternatives, even the former "gold standard", even going robotic. The reality is this. This is a life ending disease that can play out as a miserable death. Any treatment choice that is successful is a good treatment. Depending on the luck of the draw, his health, the stage and quality of the disease, Pete has a terrific chance of beating it, better than 90%. He's made his treatment choice as did you, as did I. There is no point to imagineer side effects to the alternatives to reassure anyone that they made the right decision. Any treatment that knocks out the cancer is a good treatment. Some guys, due to age, money concerns, access to specialists and facilities, their health, personal hopes and fears, stage and grade of the disease, will do better with one treatment over another. That decision is their decision, hopefully made in private with consultation with their physician and their immediate loved ones. Not because one or another Internet newsgrope junkie hints at side effects. There it is again. Do we believe "kh" . . . or Walsh, Scardino, Strum, Lange, et.al.? Your call. I.P. "kh" <nospam@nospam.com> , and >> how many years they may have to wait for THAT shoe to drop. > > There it is again. > There it is again. > Do we believe "kh" . . . or Walsh, Scardino, Strum, Lange, et.al.? [quoted text clipped - 5 lines] > > > > There it is again. Lange? Lange? Oh Lange. I have his "Dummies" book and have quoted it. Page 151. Lange's book. "Rectal problems: You may experience a flare up of hemorhoids, rectal burning with bowel movements, diarrhea, or bowel urgency. These symptoms are often temporary and controllable with medications. Permanent rectal problems, which aren't common (occurring in less than 5% of cases) are more likely to occur if you have bowel problems before radiation treatments." My read of Lange, Not . a . problem . for . most . More than 95% of us should be OK. Maybe take a Maalox or Pepto, maybe suffer a weekend of squirts. Less that 5% might have permanent bowel problems. And that less-than-5% likely went into Rad with existing bowel problems. I'm not saying that Rad has a better survival rate. It seems to be about the same. I'm just saying, keep things in perspective. Given that the failure rate of the various treatments such as RP are quoted in the roughly 10% range, my read is a surgical patient is twice as likely to DIE after RP than a Rad patient is to have those, oh-so-scary, permanent rectal problems. (due to treatment failure; granted, it might take several years to happen, but that's waiting for THAT shoe to drop, as in DROP DEAD.) Instead of "fuhgheddaboutit", try, "gettoeverit" sheesh. We're beating CANCER here, not fretting about flatulence. This isn't alt.support.diarrhea.phobia > a surgical patient is > twice as likely to DIE after RP than a Rad patient is to have > those, oh-so-scary, permanent rectal problems. That's not only a misquote, it's just pure fiction. kh, you keep tying to convince us you know more about RT than do the bulk of the books, Urology Dept. Chiefs, and clinical trials. When you DO selectively quote a book, it's consistently the one that attributes fewer and less severe SEs to RT than any other RT discusssion I recall. It seems to have escaped you that my carefully chosen "SOME RT patients" is INTENDED to leave room for "Dummies"' relatively conservative assessment. You even claim to know more than I do about why I chose that reference to help reassure Pete that urinary incontinence is a lesser evil than many other PC treatment SEs. And I haven't even mentioned the recent announcement about RT patients' relatively high colon cancer incidence. It's your call, but I hope you encourage your son to do a lot more research than any one book when his time comes. Rose-colored glasses have left many PC patients of all treatments wishing they had learned more facts up front. I.P. IP you chose the RP because that is what you wanted. My husband chose a combination of RT (IMRT and brachytherapy) because that is what he wanted. He was much more willing to put up with having problems starting his stream then having it flowing freely in diapers. To him diapers were unacceptable. So go right ahead and name all the SE of all the treatments.Just because you find some acceptable and others not, doesn't mean the whole world thinks the way you do. I'm glad you are happy with your RP because it was your choice. My husband would have pulled a trigger if he had to put up with incontinence. So it's a matter of chocolate or vanilla; they are all rocky roads. I do hope if you have a son and he has seen what you have gone through that he will spend some time carefully deciding on his treatment if he ever has to face PC (and in all honesty I do not wish anyone's son PC) and maybe he'll decide the brachytherapy makes much more sense. Bev > > a surgical patient is > > twice as likely to DIE after RP than a Rad patient is to have [quoted text clipped - 18 lines] > > I.P. > IP you chose the RP because that is what you wanted. Wrong. Why on earth would you presume to know why I chose any treatment? What I wanted was the best treatment available for MY case of PC. That happened to be RP (LRP wasn't readily available). > My husband chose . . . whatever . . . because that is what he wanted. Unless EXHAUSTIVE research PROVES (as much as is provable) that two available treatments offer the same combination of benefits and SEs -- and that is extremely unlikely, if not impossible -- why on earth would anyone base their treatment choice on what they "want"? >.Just because you find some SEs acceptable and others not, > doesn't mean the whole world thinks the way you do. Of course not, and I've never implied anyone should. That's why I stick to facts rather than render personal judgements about another's case. All I'm trying to do is 1) encourage people to research the FACTS before acting, 2) present some of those facts as currently held by the field's leaders to alert newbies what's out there, and 3) pointing newbies to some of the sources to lend credibility and aid their own research. . > I'm glad you are happy with your RP because it was your choice. I am "happy" that weeks of research and tests led me and the surgeons, rad onc, and med onc I consulted to one, single, obvious, no-brainer initial treatment for MY SITUATION, so I didn't have to MAKE a choice. (Science, not "choice", led me inequivocably to surgery FOR MY CASE.) I'm further "happy" that hundreds of hours of additional research greatly clarified my adjuvant treatment pros and cons to the point my that choice FINALLY became much simpler, almost to the point of being obvious, and that an interdisciplinary team of pysicians concurred with my facts and conclusions. > it's a matter of chocolate or vanilla; they are all rocky roads. Research identifies the size and location of the rocks just ahead and way down the road, in each possible path, to the extent the facts, statistics, and expert opinions are known. I'd never make a decision this vital until I knew where the cocoa beans and vanilla beans in my ice cream were grown. Anyone who does less is adding avoidable risk to the equation. > I do hope if you have a son . . . > he'll decide the brachytherapy makes much more sense. Surely you're not saying that brachytherapy -- or ANY treatment -- is right for every case of PC? I.P. This is exactly why I chose to try all three. Just to settle these arguments. RRP had short term dehabilitating SEs and one, impotence, that was fairly long term. RT had very mild, very short term SEs which were hardly noticed. HT had some mild, relatively short term SEs and one, sexual apathy, long term. But, the latter makes impotence a lot easier to live with. I have not yet experienced death, but so far, I'd take either of the previous three over death, even a combination thereof.  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 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05 PSA .07 .05 .06 .05 non Illegitimi carborundum > IP you chose the RP because that is what you wanted. My husband chose a > combination of RT (IMRT and brachytherapy) because that is what he wanted. [quoted text clipped - 42 lines] > > > > I.P. Bev.....there is no use trying to reason with someone who has no first hand knowledge about the side effects of RT. He hasn't experienced anything other than an RP. But he does seem to search out all the negatives he can find on RT and HT, which has the effect of scaring the hell out of the newbies and lurkers!! That is what I personally object to!! As for HT side effects, which IP ranted about ad nauseum for months.....he still went ahead and tried it for 30 days with no apparent *horrible side effects*, even if his doctor didn't know he should have taken Casodex for 2 weeks before the shot. Or perhaps he *chose* to experience the testosterone surge. Ron had nothing other than fatigue from his HDR radiation and subsequent EBRT treatments almost 2 years ago.......and has had no *long term side effects* either. But as I said, IP wouldn't know about that because he has never had RT. Personally, I value the opinions of those who have *been there, done that*, rather than someone spouting a bunch of statistics that can be slanted negatively if one wishes to look only at the *down side* of things. I prefer knowing both sides......as you do. Cheers.....Heather > IP you chose the RP because that is what you wanted. My husband chose a > combination of RT (IMRT and brachytherapy) because that is what he wanted. [quoted text clipped - 42 lines] > > > > I.P. Heather, My saintly grandmother once commented, "All the horses a.ses are not between the rails at the race track." Tom > Bev.....there is no use trying to reason with someone who has no first hand > knowledge about the side effects of RT. He hasn't experienced anything [quoted text clipped - 78 lines] > > > > > > I.P. Chuckling to myself here.......your saintly grandmother sounds like a jewel!! And she is so right!! Best....Heather > Heather, > My saintly grandmother once commented, "All the horses a.ses are not between [quoted text clipped - 94 lines] > > > > > > > > I.P. Heather STILL doesn't understand how meaningless anecdotal results are. I.P. > Bev.....there is no use trying to reason with someone who has no first > hand [quoted text clipped - 23 lines] > negatively if one wishes to look only at the *down side* of things. I > prefer knowing both sides......as you do. > Heather STILL doesn't understand how meaningless anecdotal results are. Um, well, just as IP's results are anecdotal, too. Maybe Ron could reasonably say, as does IP, "I am 'happy' that weeks of research and tests led me and the surgeons, rad onc, and med onc I consulted to one, single, obvious, no-brainer initial treatment for MY SITUATION, so I didn't have to MAKE a choice. (Science, not "choice", led me inequivocably to surgery FOR MY CASE.)" As always, YMMV. Regards, Steve J "Judge, and be prepared to be judged." -- Ayn Rand > > Heather STILL doesn't understand how meaningless anecdotal results are. > > Um, well, just as IP's results are anecdotal, too. > > Maybe Ron could reasonably say, as does IP, "I am 'happy' that weeks of > research and tests led me and the surgeons, rad onc, and med onc I > consulted to one, single, obvious, no-brainer initial treatment for MY > SITUATION, so I didn't have to MAKE a choice. (Science, not "choice", > led me inequivocably to surgery FOR MY CASE.)" > > As always, YMMV. Well, actually what you (or was that IP, grin) describe is pretty much how it happened. Urologist, med onc and rad onc all suggested radiation due in a large part to his being 71 and in excellent health, etc. So yes, science and excellent doctors assisted Ron in making the sensible choice. They did not feel it was necessary to put him thru surgery when he had an equal chance with radiation. The trial he was in was coincidental. Sunnybrook was doing the HDR radiation and he fit the parameters, so they asked him if he would like to join it. Cheers....Heather > Regards, > > Steve J > > "Judge, and be prepared to be judged." > -- Ayn Rand Precisely why my results -- extended urinary incontinence but otherwise quick recovery of physical vigor -- mean zip squat to anyone else and thus should not influence anyone. I.P. "Stephen Jordan" <mycroftscj@earthlink.net> wrote I. P. Freely" wrote: >> Heather STILL doesn't understand how meaningless anecdotal results are. > > Um, well, just as IP's results are anecdotal, too. Oh yes she does. Way more meaningful than any of your tirades. Btw....I have asked you before, but you continually take the evasive route..... /quote...... As for HT side effects, which IP ranted about ad nauseum for months.....he still went ahead and tried it for 30 days with no apparent *horrible side effects*, even if his doctor didn't know he should have taken Casodex for 2 weeks before the shot. Or perhaps he *chose* to experience the testosterone surge. /unquote..... Care to explain why you didn't have all those dastardly side effects you keep on about?? Or is it merely we mortals that do. Heather > Heather STILL doesn't understand how meaningless anecdotal results are. > [quoted text clipped - 27 lines] > > negatively if one wishes to look only at the *down side* of things. I > > prefer knowing both sides......as you do. I explained it in detail, luv, in several different threads. Can't help it if you haven't time to read 'em all; who does? I don't have much motivation to spend time with people who resort to ad hominem when their logic breaks down. I.P. > Oh yes she does. Way more meaningful than any of your tirades. > [quoted text clipped - 13 lines] > Care to explain why you didn't have all those dastardly side effects you > keep on about?? Or is it merely we mortals that do. Now, why was I not surprised when you referred to my post as an *ad hominem* whatever.....(attack?). That seems to be your standard answer when someone dares to disagree with you.....particularly females. If you had bothered to read my reply to Steve Jordan, you would know that Ron's treatment was decided in consultation with 3 specialists and was very logical. What part of that logic didn't you understand?? You are getting very tiresome and it is time to killfile youll!! I have neither the time or interest to read your rants anymore. The others can try and remedy the damage you do with your inflammatory posts. Heather > I explained it in detail, luv, in several different threads. Can't help it > if you haven't time to read 'em all; who does? I don't have much motivation > to spend time with people who resort to ad hominem when their logic breaks > down. > I.P. > Now, why was I not surprised when you referred to my post as an *ad > hominem* > whatever.....(attack?). That seems to be your standard answer when > someone > dares to disagree with you.....particularly females. Ad hominem includes name-calling personal attacks on the messenger in lieu of topical debate of the message. Several of you here resort to that when you run out of facts and logic, and now you're implying I'm a male chauvinist bigot. Kindly prove it or stick it in your ear. > If you had bothered to read my reply to Steve Jordan, you would know that > Ron's treatment was decided in consultation with 3 specialists and was > very > logical. What part of that logic didn't you understand?? It was you who told us your decisions were based on the personal experience of a few friends and a doctor, then added more doctors and friends to strengthen your anecdotal support. > You are getting very tiresome and it is time to killfile youll!! I have > neither the time or interest to read your rants anymore. Then don't read them. No one's forcing you to read the facts people so often seek here. > The others can try and remedy the damage you do > with your inflammatory posts. Anyone inflamed by useful facts is in for a bumpy road through life, such as the belief that socialized medicine is free. I.P. The really sad thing is anyone can decide on something and then find all the arguments to support the case. Unfortunately IP never met Martin, who had hundreds of years of medical evidence to support his decision. Yes, hundreds of years!! He was an interesting individual, very intelligent, and had a quick wit to boot. He was a wonderful friend and I admired his convictions. Sadly he lost his battle with PC maybe a little sooner than he would have if he had used conventional methods. But maybe he was spared some of the pain and agony that many suffer towards the end because of his methods, although I do not suggest his methods to anyone. So what does a person do when faced with PC? They start looking for treatment types or they follow what the doctor recommends, which chances are it's a RP recommended by a urologist. So few people actually spend any time researching anything. So John Doe finds out he has PC or thinks he does then he comes out here looking for answers. He listens to what everybody has to say and thinks about all of it. He reads the URL's we give out and hopefully sees both a radiation oncologist and a urologist and listens very carefully to what they say. What IP still doesn't get it is that is often a matter of choice between two equally good treatments. Some men who could be cured with a simple brachy procedure chose RP because they want that cancer out of their body as quickly as possible. There is nothing wrong with that decision. People have the right to make up their own minds for whatever their reasons. If some men want to chance peeing or dribbling in their pants for the rest of their lives - that's fine. It only happens to a very small percentage. But for some men even a dribble for a few months is intolerable. That's fine, too. As the expression goes - chose your poison. What gets to me is when someone decides that they know all the answers and they have all the research to back them up and they try to shove their opinions on everybody. For every case made by these folks most of us can find the research to the opposite. The difference is we have lives and are not sitting at the computer 24/7 so our time is limited. I know what time I have I don't feel like spending it looking up a bunch of facts from some obscure research. I'd much rather enjoy a friendly email, congratulate someone on a great PSA or tell a newbie that he has another option for his PC when I have a few minutes. Sometimes it is not what you say but how you say it. And considering we live in modern countries that value free speech, well, I don't have to agree with what anyone says but I'll defend the right to say it as long as it doesn't do harm. Which sometimes I think it does. Therefore I disagree with about 60% of what IP says but mostly with the way he presents it. Because he presents his slanted view as if it was the only view and the only correct scientific way to do it. I find him supercilious. I have no desire to start a flame war. But this is supposed to be a support group. That tends to mean we provide mainstream information from known authorities and references. We are not trained doctors. We can say "been there, done that". There is nothing wrong with that. Does a biopsy hurt? Ten answers will give ten different experiences but on a scale of 0-10 ten being the worst I think most would answer between 0 and 8. Is that a comfort to someone facing his first biopsy? Probably not but at least he knows it's not a 10. IP would do better to simply state the he has chosen not to have HT because he does not want to be bothered by menopausal symptoms or have his libido taken from him. That's fine. It's his choice. But when he jumps on the bandwagon against RT, as if he is the great authority, my hackles go up. Oh, yeah, colon cancer incidence is higher after RT? Well, clarify that. Yes it can go up after 25 years or so which is why they tend not to use it on younger patients who really might live another 30-40 years. But again this is with old data from when they aimed a wide beam of RT in the general area of the prostate and let her rip. That old RT also burned the skin and created all sorts of problems that just really are not seen today. But he sure can scare off a newbie with his bull. So the rest of us are sitting here trying to defend something that we should not have to defend in the first place. RT works! Brachytherapy works! HT is a viable alternative giving someone many good quality years of living maybe without much sexual desire but that is not necessarily a bad thing. Definitely different, I am sure, for some men but not the end of the world for most and probably a welcomed reprieve for many a wife. Now that I have finished ranting I will go spend some quality time with my husband. Besides it is so much fun getting it to work. Hmm, chocolate, mint, or amaretto - wondering if he wants it with or without whipped cream? Me? I like it sweet and strong with lots of whipped cream. When it is ready I like getting a firm grip on it while slowly licking off all the whipped cream. Then I can just grab it with my lips and gently suck, savoring every last centimeter of it. (Sorry guys, I'm just going to brew a little coffee in his espresso machine with an added kick before calling it quits for the night.) Bev That's the tidewater tease in you coming out, have a good evening. Tom > The really sad thing is anyone can decide on something and then find all the > arguments to support the case. Unfortunately IP never met Martin, who had [quoted text clipped - 84 lines] > espresso machine with an added kick before calling it quits for the night.) > Bev > (Sorry guys, I'm just going to brew a little coffee in his > espresso machine with an added kick before calling it quits for the night.) > Bev -gulp- No need to apologize. I found it "bracing and invigorating". -- off the Lupron for 3 months here. > The really sad thing is anyone can decide on something and then find all > the > arguments to support the case. That would be sad. That's one of the reasons I emphasize facts and logic so heavily in my life and in my posts here, in an attempt to prevent myself and others from making that mistake. > So what does a person do when faced with PC? They start looking for > treatment types or they follow what the doctor recommends, which chances [quoted text clipped - 9 lines] > carefully > to what they say. That's why I try to encourage that 100%. > What IP still doesn't get it is that is often a matter of choice between > two > equally good treatments. What Bev apparently still doesn't get is that further research usually reveals inequalities between treatments for an individual PC case, including both benefits and undesirable effects. Digging up those inequalities makes decisions easier and more valid, treatments more effective, and/or SEs more tolerable, according to each individual's criteria. It took me weeks/months of study to find statistics, name-brand expert statements, and clinical trials with enough claims and data to lead me to my RP/adjuvant ADT decisions. If exhaustive research had STILL produced a tie, the strong poll tilt in this group towards early adjuvant ADT SEs I chose not to risk would probably have broken the tie. > Some men who could be cured with a simple brachy > procedure chose RP because they want that cancer out of their body as > quickly as possible. There is nothing wrong with that decision. Unless it is the wrong medical choice when they want the RIGHT medical choice. Adequate facts usually point to a right choice, and in different PC cases it may be any of the many options available. The minute I became aware that I was beginning to favor "getting that beast out of my body", I recognized that as an emotional choice and bent over backwards to examine the FACTS of all the other options more thoroughly. > People have the right to make up their own minds > for whatever their reasons. Yup. But when they seek help in making choices, we are remiss if we just recommend a specific treatment because 'It's my favorite", "I chose treatment #2 a month ago and I'm cured", or "My brother in law got a Transmogrified Trivarian Obtusion for his PC and has no SEs at all . . . as long as you don't count being too tired to lick an envelope." Who the hell is any of us to recommend any treatment just because we "liked" it? Even the most-accused arrogant a.s here doesn't recommend any specific treatment; he prefers to alert people to facts and sources and let them make up their own minds. What a concept! > What gets to me is when someone decides that they know all the answers and > they have all the research to back them up and they try to shove their > opinions on everybody. I agree. I hate it when I see someone do that, and often counter with facts to convince newbies they shouldn't rely on Tales of the Forum, any PC patient's opinions, or even One Doc's Opinions for their life's decisions. Opinions are food for thought, not salvation. > For every case made by these folks most of us can > find the research to the opposite. That's why I asked this group about so many of my findings when I was in the decision mode; I wanted to find and resolve those conflicts. The help I got here, years of experience at this kind of SOMAIFOACS (figure it out; a tip follows) research, and the advice of a bunch of specialists resolved those conflicts FOR MY CASE. Some cases of PC require a huge effort to select the proper treatment; other cases quickly rule out most options and leave one obvious choice, a majority fall between those extremes. > The difference is we have lives and are > not sitting at the computer 24/7 so our time is limited. I know what time > I > have I don't feel like spending it looking up a bunch of facts from some > obscure research. That's how I felt, too . . . until I realized my life was at stake and could be profoundly affected by how much time I spent SOMAIFOACS. That's when I went 16/7, and it paid off immensely. > I'd much rather enjoy a friendly email, congratulate > someone on a great PSA or tell a newbie that he has another option for his > PC when I have a few minutes. That's another approach to the most important decision of our lives, and to the effort we're willing to put into helping another pt get past, "Congratulations; you've just joined the club no one wants to be in". > Sometimes it is not what you say but how you say it. Please elaborate. I'd love to understand how I can present facts in some way that irritates fewer people, as long as it doesn't require padding those facts in paragraphs of sugar coating. > I disagree with about 60% of what IP says but mostly with the way he > presents it. Because he > presents his slanted view as if it was the only view and the only correct > scientific way to do it. I find him supercilious. I present facts from the leading PC sources in the world primarily when someone a) asks for information, b) reveals an alarming lack of information that may harm them, or c) presents potentially harmful DISinformation within the scope of my focussed research. The only people I scorn (now that you brought the term up) are those who advise newbies to make life's big decisions on The Tales of The Forum, and who "disagree with about 60% of what [the world's experts] say" just because they hear it from me, even if it's in the form of direct, unslanted quotes. > I have no desire to start a flame war. Don't sweat the flames; I forfeit that game to others here. > But this is supposed to be a support group. >That tends to mean we provide mainstream information > from known authorities and references. THEN WHY ALL THE COMPLAINTS WHEN I DO EXACTLY THAT, and why no argument when Tom vehemently denies the admissibility of information in a support group? > IP would do better to simply state the he has chosen not to have HT > because > he does not want to be bothered by menopausal symptoms or have his libido > taken from him. That's fine. It's his choice. Simply stating my choice and a couple of words of explanation would provide no valid decision guidance to anyone else OR to me because it doesn't include the facts, criteria, and process involved in my decision. Without those, it's merely a useless, incomplete anecote. That's why I've stated all of that in so many ways, posts, words, and threads. > But when he jumps on the bandwagon against RT, Show us one place I've done that. > as if he is the great authority, Again, show us any evidence of that. Every one of you has access to all the materials and experts I parrot in attempts to refute Tales of The Forum; you're welcome to check my sources any time you like. (BTW, how many of you question Ron's cold, hard, facts?) > Oh, yeah, colon cancer incidence is higher > after RT? Well, clarify that. That study result was posted here by others last month. Did you question it then? > RT works! Brachytherapy works! Show me one time I've ever said or hinted otherwise. > HT is a viable alternative giving someone many good quality years of > living Show us one trial that backs that statement up for adjuvant -- especially early adjuvant -- HT. Is it any wonder why I am not interested in taking the time to sugarcoat the facts and opinions I advance here? Curtis and Ron lays 'em out without question, but let I.P. state a fact, and he's an arrogant a.s. Folks, my skin's only a couple of inches of kevlar-reinforced concrete. It does have its limits, so I may blow up and get snide now and then. I MAY apologize, but not likely, as I take 10 times what I dish out, so I have little sympathy. I.P. IP, I didn't have to look very far to see: "Try this: think about the form of incontinence some RT patients face, and how many years they may have to wait for THAT shoe to drop." What shoe? And where did you come up with that little tidbit? Here's the real scoop. Some RT patients feel an urgency, urinary or bowel, right after EB this is normal. It can effect the bowels or the bladder. The area is stimulated by the EB. If there is going to be some sort of a problem it is going to show up right away as in within minutes/hours of leaving the table. There is not going to be something showing up months or years later except for an itty-bitty chance of a radiation induced cancer due to the amount of radiation concentrated in one area. We have been told by several doctors that this particular cancer is successfully treatable and anyone who has had EB should be monitored for this cancer after about 20 years. Yes, there are a whole lot of different personalities out here. I think we are now up to two MD's, a half dozen PhD's and quite a few master degrees, at least two CPA's and a few clergy. This is not a stupid group of people. Some of these guys I consider to be very wonderful friends. As the expression goes "You'll always be my best friend because you know too much!" and it is true. Some of these guys kept me glued together when I suspected my husband had cancer and then it was determined that it was cancer, these men all had RP's except for one who was in the advanced stage of PC. These men helped me find the information we needed to make a decision. They provided all the been there done thats. Not one ever said anything negative about RT. A few might have held their breath when I said my husband wanted brachytherapy but they were there to support us. We've joked and teased on and off this group. We've shared other things in our lives. Some are Republicans and some are Democrats, there are a variety of faiths and some non-religious folks, there is a variety of skin colors, huge differences in financial positions and everyone is coping with the fact that they (or a spouse) have prostate cancer because prostate cancer doesn't care who you are - only that you are a male. And the vast majority out here have had RP's. But in spite of our differences there is a huge amount of respect between most all of the participants. I think that you will find that most of the people out here have spent a chunk of the life researching and reading to make sure that they would have a life when they discovered PC. I realize that you are still fighting for your life. So I will make a serious suggestion - get off the internet and spend what life you have left with the people you love and love you. Go do something wonderful and fun while you still can do it. I promise that the rest of us will keep the newbies informed on the various options for PC treatment, we've been doing it for years. Maybe it won't be exactly to your standards but we'll manage somehow. Bev > IP, I didn't have to look very far to see: > "Try this: think about the form of incontinence some RT patients face, and [quoted text clipped - 8 lines] > the EB. If there is going to be some sort of a problem it is going to show > up right away as in within minutes/hours of leaving the table. This has been discussd at great length recently. A buncha guys, such as Walsh, and a buncha uro depts such as Johns-Hopkins disagree 100% with you. I. P. Walsh and the other uro's at Hopkins are busy perfecting their surgical techniques. Talk to the guys who are perfecting the radiation techniques. End of this conversation for me. Bev > > IP, I didn't have to look very far to see: > > "Try this: think about the form of incontinence some RT patients face, and [quoted text clipped - 13 lines] > > I. P. > > IP, I didn't have to look very far to see: [quoted text clipped - 9 lines] > the EB. If there is going to be some sort of a problem it is going to show > up right away as in within minutes/hours of leaving the table. I had bowel issues the week after the IMRT treatment started. It was probably the flu or similar but I wonder if reading about symptoms can cause them or sensitize you to them. During the 2nd weekly IMRT debrief (the Rad doc spends 15 minutes each week checking on vitals and watching for side effects.) I mentioned the problems I was having. He said, "it's really too soon for any problems, if anything happens, it's after the 3rd or 4th week." Wise guy that I am, I asked him, "Do you think the all-you-can-eat Chili and beer-fest had anything to do with this?" But yeah, 25 sessions of IMRT was easy. Some urinary urgency towards the end but you'd have to watch for it to notice it. Another funny, I was chatting it up in the waiting room with an older guy, 70'ish, maybe 80. I asked him, "do you have any problems?" He didn't, he said, "No, I only get up once or twice a night to pee." I realized that I had just told the doc, "I'm having side effects, I'm getting up once a night to pee." I.P.....Thank God for free speech....we all the right to agree or disagree....post your statements and move on...... Keith Lundy/So. California 40 Proton Beam Radiation Treatments Loma Linda Univ.Med Ctr..3/03-5/03 > I.P.....Thank God for free speech I believe speech which is false and harmful is not free. > we all have the right to agree or disagree Sure -- if we let PC newbies (people still making treatment decisions) know we're disagreeing with peer-reviewed facts published by several recognized authorities. > post your statements and move on...... I'd love to . . . if folks would stop contradicting the literature and spouting ad hominem at people who discuss it, apparently (from their statements) because blunt facts scare or anger them and/or science (e.g., statistics) mystifies them. If this were alt.knitting.coasters or ford.v.chevy, or if everyone here was in their third salvage treatment phase, personal atacks wouldn't bother me. But it frosts my a.s, and I'd feel cowardly if I remained silent, when people risk newbies' futures by denying or actively campaigning against the presentation of important, peer-reviewed, and/or widely accepted facts with references so newbies can verify them, make medically sound decisions, and optimize their therapeutic index (ratio of benefits to side effects). Palliative platitudes are important to some people, but they don't resolve newbies' treatment dilemmas. If overly (IMO) sensitive people resent my using facts (e.g. "the other shoe") to lend meaning and depth to palliation, that's tough; empty platitudes are about as credible as empty compliments. Which is more important . . . the longevity and/or QOL of newbies or the feelings of people who would deny others the benefits of facts which affect our lives? If we ignore inaccurate or illogical counterattacks after someone parrots experts and statistics, don't you think newbies might actually BELIEVE those counterattacks and suffer unnecessary consequences, as some say they have ("If only I'd known . . . ")? Doesn't that concern you? IMO, one of our missions should be to reduce the PC confusion and contradiction to that between experts, rather than let additional confusion introduced by us laymen go unchallenged. For example, all it takes to change my mind and my tune, get my apologies, stifle the acrimony, AND help me and other newbies is this: challenge my claims with weightier facts and references, as I've asked for many times, rather than ad hominem. If they do that, we all win, so I won't give a RA if they add comments about my ancestry or personality. I.P. Maybe it's because I haven't had my coffee yet, but damn you're pissing me off. You do a great job of arguing your points with facts. But, then you go and say something so obtuse that I wonder if you have a 14-year-old at home commandeering your keyboard. Let me say it slowly... This is a SUPPORT newsgroup. It is ALL anecdotal. There are no books here. There are no research papers. While there is the occasional citation, it is not nearly the best vehicle for research. Neither Strumm nor Walsh have chosen to pop in with their supposed empirical data. It is a group of people relating to each other their experiences so that the others, especially NEWBIES, may know what to expect and how to make decisions about the rest of their lives. Next time you to one of your archive searches, search on phrases like, "you guys saved my life," "you guys are great," "I was lost," etc. You'll find that all but the most arrogant, pompous a.ses have attributed to this newsgroup a considerable amount of MEANING to anecdotal results. 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 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05 PSA .07 .05 .06 .05 non Illegitimi carborundum > Heather STILL doesn't understand how meaningless anecdotal results are. > [quoted text clipped - 27 lines] > > negatively if one wishes to look only at the *down side* of things. I > > prefer knowing both sides......as you do. Another long one, folks, but there's a lot of food for thought here for anyone with decisions to be made. > damn you're pissing me off. > You do a great job of arguing your points with facts. I just report and use facts. You CHOOSE to get angry about it. > But, then you go and say something so obtuse that > I wonder if you have a 14-year-old at home > commandeering your keyboard. Nope. I just PEE like a 14 YO. > Let me say it slowly. > This is a SUPPORT newsgroup. It is ALL anecdotal. That issue was raised, discussed, and literally voted on last month. Sanity and rational thought won because some people welcome SUBSTANCE. > There are no books here. There are no research papers. While there is > the > occasional citation, it is not nearly the best vehicle for research. Of course not, as I have also pointed out. But it's a GREAT place for those who need: a. Awareness that research is necessary, including b. Facts to illustrate the range of treatment benefits and SEs available, to provide c. Motivation to pursue the research plus d. Pointers to where to begin their research. e. i.e., SUPPORT in making crucial decisions. > It is a group of people relating to each other their experiences so that > the > others, especially NEWBIES, may know what to expect and how to make > decisions about the rest of their lives. Anyone, PC newbie or old-timer, who forms expectations of treatment results or SEs, makes PC treatment decisions, or trains himself to make important decisions based on anedotes in general will make many bad decisions in his life. FACTS based on FAR larger data bases are a MUCH more valid foundation for such decisions, and proper application of those facts to one's own situation, supplemented by rational analysis, will lead to many far more valid decisions. > Next time you do one of your archive searches, search on phrases like, > "you > guys saved my life," "you guys are great," "I was lost," etc. Isn't that great? But don't you think many of those comments refer to people whose lives were made better by INFORMATION, such as: a. Awareness that research is necessary, including b. Facts to illustrate the range of treatment benefits and SEs available, to provide c. Motivation to pursue the research plus d. Pointers to where to begin their research. e. i.e., SUPPORT in making crucial decisions? Which is more likely to extend a life by 30 years or at least make the next 10 years FAR more pleasant . . . a) facts that improve the soundness of a critical decision or b) telling someone, "Oh, you're fine. You'll live for 30 more years" or "Try MY treatment. It has no SEs"? > all but the most arrogant, pompous a.ses We "pompous a.ses" have never understood why so many people have SO much trouble comprehending the utility of science. Everyone from scientists to the staunchest technophobes benefit from it every day. It's even more puzzling why so many articulate people have to resort to ad hominem every time they encounter a belief system or an idea different from their own. Despite their self-proclaimed tolerance, their behavior demonstrates exceptional INtolerance. Their vehement opposition to any form of support different from their feel-good well-wishes -- such as data which can save lives and/or avert SEs -- just isn't rational, and is a major disservice to those needing help in making decisions. Do you think the only treatment a broken leg needs is a pain pill, that setting the fracture and casting it is not SUPPORT? > have attributed to this newsgroup a considerable amount > of MEANING to anecdotal results. Let me say it slowly, based on the above, on the REST of this long-beaten-to-death horse, and on a lifetime of studying and using science every day: anecdotes HAVE virtually no inherent meaning in the formulation of sound decisions, by definition, compared to large valid statistical bases of data. That's not an opinion or a right-brain or left-brain position; it's not debatable. It's simply a fact, a definition, subject to "what ifs" but generally true. We're very fortunate to have such a large body of PC statistics compared to many other ailments; ignoring them in favor of feel-good hearty-ho's is an irrational waste of good data. Feel-good stuff helps us -- Ta Daaaa -- FEEL better; facts can, in many cases, CURE us. Well-wishing is great stuff for many people -- especially for people who have no other options left -- but it doesn't provide the SUPPORT needed by those trying to choose a cancer treatment that best suits their cancer and their personal benefit and risk criteria. Any rational, analytical person with remaining options wants information and a treatment protocol that will maximize his benefits and minimize his SEs, according to his criteria, for 30-40 years, not just well-wishes that make him feel better for a few minutes. It is stupefying, unconscionable, and the epitome of arrogance that you and Tom and Heather are so adamant about denying anyone that kind of SUPPORT. This is a SUPPORT group, not solely a last resort for hearty-ho's for dying PC patients with no options or decisions remaining. You guys give 'em the anecdotes and well wishes for palliative encouragement, others will give 'em FACTS and pointers to more data that may prolong their lives or even CURE them with minimal backlash. Together both teams can provide full, rounded, thorough SUPPORT to those who come here seeking it. I.P. I.P. 1. For starters, let's make it simple; don't blame others for opinions or statements that are mine or may be attributed to me; they may agree or disagree with my views and/or opinions, but I am not speaking for them, nor they for me. 2. In a previous post, you questioned my opinion regarding Veterans benefits because I said something about you living on the Govt.tit all your life.Well, let me tell you something BUD! I don't question benefits to these guys one bit. As one who did two tours in country on Uncles payroll and 30 mos. as a civil engineer working for a civilian contractor in Saigon, I think you are out of line. 3. If this annoys you, sorry (this is a family channel) 4. I still think that you're an opinionated, disgruntled PIA that belongs within the rails of the racetrack (despite what Gram said) Have a nice day , Tom > Another long one, folks, but there's a lot of food for thought here for > anyone with decisions to be made. [quoted text clipped - 108 lines] > > I.P. > I.P. > 1. don't blame others for opinions or > statements that are mine Never did that. Read. > 2. you questioned my opinion regarding Veterans benefits > because I said something about you living on the Govt.tit all your > life.. . . I think you are out of line. I made no accusation; I asked how we were SUPPOSED to intepret your comment because I could see no other interpretation than denigration of veterans' benefits. How is asking for clarification "out of line"? Besides, what gives you the right to presume and proclaim (falsely) that I've depended on the gov for my education and income? > 3. If this annoys you, sorry (this is a family channel) > 4. I still think that you're an opinionated, disgruntled PIA that belongs > within the rails of the racetrack (despite what Gram said) Can't any of you guys stay on track? The forum's topic is CANCER, not personalities. I explain in detail why facts are so vital to making treatment decisions and all you guys can do is make personal jabs? I.P. > Another long one, folks, but there's a lot of food for thought here for > anyone with decisions to be made. Somehow, I knew an apology for you poor behavior wasn't forthcoming. But, alas, I have had my coffee and I am back to apathetic. > > damn you're pissing me off. > > You do a great job of arguing your points with facts. [quoted text clipped - 105 lines] > > I.P. Steve Kramer" sez > "I. P. Freely" wrote... >> Another long one, folks, but there's a lot of food for thought here for >> anyone with decisions to be made. > > I knew an apology for you poor behavior wasn't forthcoming. Your assessment that presenting facts for those making treatment decisions is "poor behavior" was outvoted by a jury of your peers. As soon as someone provides evidence this behavior is "poor", I'll apologize. I.P. Pete: I understand you concern, but first realize that the odds are in your favor. Most men regain control over the first three months. Guys like me, members of the exclusive "leakers club", are not in the majority. Second, remember that there is a very wide range of "incontinence". When the catheter came out I was truly incontinent. No control at all. That, however, only lasted less than two weeks. Where I am at now is that although I do leak, and must wear pads (Depends Guards), I put on a pad after my morning shower and that usually lasts the entire workday. I keep a couple in my desk at work, and a few in the car. That way if I ever do need a change during the day I have one. In other words I live my life without thinking about it at all. When the doctor told me that at this point I would never get any better, I told him I was fine with where I was at. Of course I would rather be completely dry, but I do not feel like I am seriously impaired. Finally, remember that there are things you can do about the incontinence. There are men here that use a clamp, I have a neighbor that got one a month or so ago and he swears by it. There is a surgery that I think is called the "sling", help me out here guys, that can help. And, ultimately, if nothing else works, there is the artificial sphincter. From what my doctor tells me, men that have had that surgery are very satisfied (although I have heard that even with that there can be some leakage, so investigate that carefully). Don't worry. I expect to see you post here in a month that you threw away your pads. Good luck. > Well here I am, one week away from my RRP surgery. I've done all the > research, and picked the best surgeon I could find. I have explored [quoted text clipped - 14 lines] > Wish me luck, > Pete Best of everything to you Pete and Fred. You're gonna do great. The guys have told you the truth and it will be OK. Ron B. Chicago Pete, all the best with your surgery. As for the diapers (or pads if you prefer), they rapidly become a non-issue. I'm almost 22 months out and still wear a pad that lasts all day. Rarely do I need to use a second one except on warm days when there is more perspiration than pee down there and a change is simply more comfortable. Putting on the pad in the morning is no more an ordeal for me than brushing my teeth or combing my hair. It's just something I do. There is a bright side too. When anyone else says "Stop at the next gas station, I got to go", I just smile - "Don't rush on my account." Also, the pad really fills out those Speedos - pretty impressive at the beach (little do they know). Anyway, the chances are excellent that the pads will be history for you within a couple of months. If not, you'll still do fine. Best of all, the low PSAs will more than make up for the pads. Good luck and keep us posted. Dave Perry > Well here I am, one week away from my RRP surgery. I've done all the > research, and picked the best surgeon I could find. I have explored [quoted text clipped - 14 lines] > Wish me luck, > Pete With that attitude, you will have ED by reason of a self-fulfilling prophesy. jimhoney standard RRP age 52, cured, no significant aftereffects Pete, I have been in your shoes only 6 weeks ago. Most of your routine life will be the same - eventually. You will live a good standard of living Best of luck - "talk" to you soon Reuben >> Well here I am, one week away from my RRP surgery. I've done all the >> research, and picked the best surgeon I could find. I have explored [quoted text clipped - 20 lines] >jimhoney >standard RRP age 52, cured, no significant aftereffects Pete: I was not in any diaper from day 1. No urinary incontinence at all, except for a cough or sneeze very early on, and that was just a few drops. I had robotic surgery 12/14/04. As for sexual side effects, we'll have to wait and see, but everything that I've read said that with nerve sparing surgery it will return. Just have to be patient. I did have good erections before though. I am 53 and in otherwise good shape. You will make it through this. The important thing is to rid yourself of the cancer first, then urinary control, and finally sexual function. You may see that the first two are the easy parts, and having to wait a little while longer for the 3rd act! Good luck! Fred and Pete, You are in my prayers. I vividly remember going totally nuts with worry pre-op. That was 14 months ago. Now I never leak, and my sex life is excellent. Do your Kegels, and don't be afraid to try the shots if you need some help prior to erectile return. Steve U I don't recall your numbers, if you've given them, so I cannot comment your survival concerns (except to say virtually everyone survives RRP for 8 to 13 years). Loss of sexual prowess is hard for a man, but most seem to get it back and some in short order. Loss of urinary control is often the biggest depressor of PCa victims, but, again, virtually all wean themselves off of diapers in short order. 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 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05 PSA .07 .05 .06 .05 non Illegitimi carborundum > Well here I am, one week away from my RRP surgery. I've done all the > research, and picked the best surgeon I could find. I have explored [quoted text clipped - 14 lines] > Wish me luck, > Pete > Well here I am, one week away from my RRP surgery. I've done all the > research, and picked the best surgeon I could find. I have explored [quoted text clipped - 11 lines] > won't spend an extended period of my life in diapers. Sorry, I just > don't want to live that way. I do wish you luck, Pete!! I had my LRP 30 months ago. I was continent 6 weeks after the catheter came out. Sexual function is another story... but what other choice did I have. Any treatment for PCa carries a chance of impotence. But I won't downplay the importance of sexual function.... or tell you that it still doesn't bother me from time to time. But it's getting better as time goes on. Hope you will post after your surgery to let us know how it goes.... and keep posting up until as you feel the need. That's what we are here for! Take care! MikeH ;) > Well here I am, one week away from my RRP surgery. I've done all the > research, and picked the best surgeon I could find. I have explored [quoted text clipped - 14 lines] > Wish me luck, > Pete I remember the time a week before then it was Thanksgiving weekend which followed by my birthday on Dec 2, 02 the big day. It's a distant point in memory now. I'm sure you will find that will be the case with you also. There will be some bumps in the road to recovery, but I think you will find in time everything will be back to better than normal. You are correct, bladder control is paramount. Good luck Pete, Dale j. SignatureEmail: dalej2@mac.com Pete Good luck but not to worry. You've done your homework and made good choices. There is little luck involved and the void will disapear. Don't let the incontinence thing get you down. I'm 4 months after surgery (LRP) and totally continent. Most of us go that way. The ED thing is another matter, about 90% of us loose all or part of our sexual functionality. Me - I'm against taking any drugs that are not absolutely necessary to maintain my life. Viagara, Celebrex, and the rest do not fall into that category so I guess Willie can sleep for as long as he wants. It's a acceptable SE for a cure from cancer. I'm assuming you're having the surgery today. I go back for my 3 month post op PSA test today. That's the next milestone. Here's hoping for a big zero! |
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