Guest guest Posted August 8, 2009 Report Share Posted August 8, 2009 I need to ask your help with a reality check. I've been diagnosed for about 2 months, T1c, PSA 5.7, Gleason 6, neg. bone scan, 87% Partin, undecided re: next step. I had the microwave thermotherapy as well as a Lupron shot to prep me for the next step. I hate the Lupron effects but I REALLY hate what I assume is the result of the microwave and/or catheterization. I'm quite incontinent several weeks after having the catheter removed. My uro cavalierly stated I have an infection and put me back on Cypro. That was over a week ago, and there's been no change. The blood that I was seeing in the urine has gotten a bit better, but there are still traces. For those of you who have been catheterized and/or microwaved, is this typical 5-6 weeks later? I'm getting scared. I know there's a healing process involved, but this has dragged on for a long time. I've also changed my thinking re: the next step to external beam from brachytherapy to avoid future catheterization. May or may not make sense; I hate to make such a vital decision based on what should be such a trivial concern. Tom Lauterback Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2009 Report Share Posted August 8, 2009 Alan: I have the feeling you're spot on. If this were an infection, surely I would have seen some improvement from going back on Cipro (antibiotic). Sounds like time for a new urologist. Thanks for your thoughts. Best of health to you. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan Meyer Sent: Saturday, August 08, 2009 1:44 PM To: ProstateCancerSupport Subject: Re: Reality Check > I've also changed my thinking re: the next step to external > beam from brachytherapy to avoid future catheterization. May or > may not make sense; I hate to make such a vital decision based > on what should be such a trivial concern. Tom, I don't know the answer to your questions, but I have a few thoughts about them. First off, from what I have read, the outcomes for external beam radiation and brachytherapy are about the same. As far as I know (and you need to consult a real radiation oncologist to get a more knowledgeable opinion), you won't hurt your chances of cancer control by switching to EBRT if that's what you wish to do. I've had both. They both have side effects. However the EBRT is particularly easy to take. Normally there would be no incisions, no catheter, no anesthetics, no hospital stay. If something goes wrong, for example if the radiation causes the prostate to swell and block the urethra, a catheter could be required. But I think that happens rarely. I was almost at that point after one of my HDR brachytherapies, but not after any of the external beam treatments. As for your incontinence, that may be due to a botched TUMP rather than a botched catheter. It might be time for you to consult a different urologist than the one you've been seeing. I hate it when doctors refused to admit that they may have done something wrong and just gloss over the problem and push you out the door - probably fearing that you'll sue them if they admit to having messed anything up. When you see a new doctor he'll probably take the same attitude as a professional courtesy to his colleague ( " No, I don't think he screwed up. It was just bad luck. " ) I do think it's important to find out what's really causing your incontinence. Infection seems less likely than damage from the TUMP to me. People get urinary tract infections all the time without becoming incontinent. It bothers me that the doctor gave you antibiotics in this case, but what do I know? In any case, I think it would be very valuable to find out what has gone wrong with your sphincter before subjecting it to possible further damage from radiation. Best of luck for the future. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 : Microwave therapy, also known as TUMP, is transurethral microwave of the prostate. I was railroaded into having it to prepare me for brachytherapy, which I'm no longer considering. The whole idea was preventing urinary retention after the brachy. My uro really put the fear of God into me about not being able to urinate after brachytherapy. Perhaps the down payment on his yacht was due. I don't know. But the bottom line now is pretty ugly. I'm impotent, probably from Lupron, and incontinent. And I'm regretting much of what I've done to try to fight this beast. Even the bone scan seems premature (it was negative). I go on Medicare in December, so I have some time to slow down and take a breath, but, for example, I don't seem to be able to find out if I could wait for two years for proton beam therapy to be available in this area. I'd prefer that to IMRT, which is the road I seem to be going down now. I'm a T1c with a PSA of 5.7 and a 3+3 Gleason. Partin 67%. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of cpcohen1945 Sent: Saturday, August 08, 2009 8:39 PM To: ProstateCancerSupport Subject: Re: Reality Check Tom -- > > I need to ask your help with a reality check. I've been diagnosed for about > 2 months, T1c, PSA 5.7, Gleason 6, neg. bone scan, 87% Partin, undecided re: > next step. > > > > I had the microwave thermotherapy as well as a Lupron shot to prep me for > the next step. I hate the Lupron effects but I REALLY hate what I assume is > the result of the microwave and/or catheterization. What is " microwave thermotherapy " ? That's new to me. > I'm quite incontinent several weeks after having the catheter removed. My > uro cavalierly stated I have an infection and put me back on Cypro. That was > over a week ago, and there's been no change. The blood that I was seeing in > the urine has gotten a bit better, but there are still traces. For those of > you who have been catheterized and/or microwaved, is this typical 5-6 weeks > later? I'm getting scared. I know there's a healing process involved, but > this has dragged on for a long time. It's not typical for surgery patients. After the catheter is removed (one week to three weeks after surgery, depending on the doctor) most patients don't bleed much, if at all. [i didn't bleed at all, but did get a urinary stricture -- a whole different problem.] And most surgery patients (not all!) recover reasonable continence within a month. If your bladder sphincter has been destroyed, removed, or damaged, that might account for the incontinence. > I've also changed my thinking re: the next step to external beam from > brachytherapy to avoid future catheterization. May or may not make sense; I > hate to make such a vital decision based on what should be such a trivial > concern. I _think_ that external beam patients sometimes have urinary problems that require catheterization. Check with your doctor, and online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Tom -- This TUMP seems to have done you some real damage. I understand your reluctance to have any more surgery. I agree -- it's probably the Lupron that's causing ED. No procedure that you've had would have destroyed either your erectile nerves, or erectile tissues. Mulhall has some serious warnings about the effect of Lupron on erectile tissue. Essentially, " No erections --> tissue damage " . You might want to discuss that with your doctor. Injections or Viagra (or both) might be a good idea. Urinary strictures are a known side-effect of brachytherapy, and they sem to be more common than the doctors admit (what else is new?). They're usually handled by inserting a catheter, according to men in my local support group. No treatment for prostate cancer is easy. We had a " patient panel " at my support group last week, and _everybody_ who had treatment had been through some tough times. The one person who didn't have treatment has no idea what his PSA level is; I suspect it's pretty high. He doesn't track it. Your cancer sounds like it's pretty low risk (unless the tumor is large). So you could wait until the effects of the TUMP settle down, before starting treatment. If by " Partin " you mean there's a 67% chance of the cancer being organ-confined, that seems low to me (with your Gleason score and PSA). If it's right, and you have a 33% chance of the cancer being out of the prostate _right now_, I'd say you shouldn't wait two years before treatment. But you can continue to track your PSA level, and maybe have another biopsy in a year. I wonder what your PSA doubling time is? PCa treatment is a crap shoot, .. . . you don't know the odds, .. . . and you can't avoid playing. Sorry to wander -- (who is just an unqualified amateur and fellow-sufferer) > > : > > > > Microwave therapy, also known as TUMP, is transurethral microwave of the > prostate. I was railroaded into having it to prepare me for brachytherapy, > which I'm no longer considering. The whole idea was preventing urinary > retention after the brachy. My uro really put the fear of God into me about > not being able to urinate after brachytherapy. Perhaps the down payment on > his yacht was due. I don't know. But the bottom line now is pretty ugly. I'm > impotent, probably from Lupron, and incontinent. And I'm regretting much of > what I've done to try to fight this beast. Even the bone scan seems > premature (it was negative). I go on Medicare in December, so I have some > time to slow down and take a breath, but, for example, I don't seem to be > able to find out if I could wait for two years for proton beam therapy to be > available in this area. I'd prefer that to IMRT, which is the road I seem to > be going down now. I'm a T1c with a PSA of 5.7 and a 3+3 Gleason. Partin > 67%. > > > > Tom Lauterback > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 : Good observations all. But I'm confused about the Partin. I was told that it's never higher than 80%, so I thought I was on pretty solid ground with 67%. Not so? The catheter, in my mind, is the enemy, especially after what I've been through. I just got off the phone with an old friend who went through brachytherapy 7 years ago, actually the person who predisposed me to brachy. He pointed out that I'm focused on the wrong problem, cancer vs. quality of life, and I wonder how many of us that applies to. We're scared to death of " The Big C " and just want it out or gone at all costs, whereas we can go through a botched procedure like I've apparently gone through (TUMP) and still stay focused on the radiation/RP/whatever to cure the cancer and not the damage done by the botched procedure. I'm guilty of staying focused on the ultimate step and unfocused on the fact that my quality of life is zero now and may not get any better. Time for a new urologist and/or oncologist. Crap shoot indeed. And the " house " seems to have a huge advantage. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of cpcohen1945 Sent: Monday, August 10, 2009 4:45 PM To: ProstateCancerSupport Subject: Re: Reality Check Tom -- This TUMP seems to have done you some real damage. I understand your reluctance to have any more surgery. I agree -- it's probably the Lupron that's causing ED. No procedure that you've had would have destroyed either your erectile nerves, or erectile tissues. Mulhall has some serious warnings about the effect of Lupron on erectile tissue. Essentially, " No erections --> tissue damage " . You might want to discuss that with your doctor. Injections or Viagra (or both) might be a good idea. Urinary strictures are a known side-effect of brachytherapy, and they sem to be more common than the doctors admit (what else is new?). They're usually handled by inserting a catheter, according to men in my local support group. No treatment for prostate cancer is easy. We had a " patient panel " at my support group last week, and _everybody_ who had treatment had been through some tough times. The one person who didn't have treatment has no idea what his PSA level is; I suspect it's pretty high. He doesn't track it. Your cancer sounds like it's pretty low risk (unless the tumor is large). So you could wait until the effects of the TUMP settle down, before starting treatment. If by " Partin " you mean there's a 67% chance of the cancer being organ-confined, that seems low to me (with your Gleason score and PSA). If it's right, and you have a 33% chance of the cancer being out of the prostate _right now_, I'd say you shouldn't wait two years before treatment. But you can continue to track your PSA level, and maybe have another biopsy in a year. I wonder what your PSA doubling time is? PCa treatment is a crap shoot, .. . . you don't know the odds, .. . . and you can't avoid playing. Sorry to wander -- (who is just an unqualified amateur and fellow-sufferer) > > : > > > > Microwave therapy, also known as TUMP, is transurethral microwave of the > prostate. I was railroaded into having it to prepare me for brachytherapy, > which I'm no longer considering. The whole idea was preventing urinary > retention after the brachy. My uro really put the fear of God into me about > not being able to urinate after brachytherapy. Perhaps the down payment on > his yacht was due. I don't know. But the bottom line now is pretty ugly. I'm > impotent, probably from Lupron, and incontinent. And I'm regretting much of > what I've done to try to fight this beast. Even the bone scan seems > premature (it was negative). I go on Medicare in December, so I have some > time to slow down and take a breath, but, for example, I don't seem to be > able to find out if I could wait for two years for proton beam therapy to be > available in this area. I'd prefer that to IMRT, which is the road I seem to > be going down now. I'm a T1c with a PSA of 5.7 and a 3+3 Gleason. Partin > 67%. > > > > Tom Lauterback > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 : Good observations all. But I'm confused about the Partin. I was told that it's never higher than 80%, so I thought I was on pretty solid ground with 67%. Not so? The catheter, in my mind, is the enemy, especially after what I've been through. I just got off the phone with an old friend who went through brachytherapy 7 years ago, actually the person who predisposed me to brachy. He pointed out that I'm focused on the wrong problem, cancer vs. quality of life, and I wonder how many of us that applies to. We're scared to death of " The Big C " and just want it out or gone at all costs, whereas we can go through a botched procedure like I've apparently gone through (TUMP) and still stay focused on the radiation/RP/whatever to cure the cancer and not the damage done by the botched procedure. I'm guilty of staying focused on the ultimate step and unfocused on the fact that my quality of life is zero now and may not get any better. Time for a new urologist and/or oncologist. Crap shoot indeed. And the " house " seems to have a huge advantage. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of cpcohen1945 Sent: Monday, August 10, 2009 4:45 PM To: ProstateCancerSupport Subject: Re: Reality Check Tom -- This TUMP seems to have done you some real damage. I understand your reluctance to have any more surgery. I agree -- it's probably the Lupron that's causing ED. No procedure that you've had would have destroyed either your erectile nerves, or erectile tissues. Mulhall has some serious warnings about the effect of Lupron on erectile tissue. Essentially, " No erections --> tissue damage " . You might want to discuss that with your doctor. Injections or Viagra (or both) might be a good idea. Urinary strictures are a known side-effect of brachytherapy, and they sem to be more common than the doctors admit (what else is new?). They're usually handled by inserting a catheter, according to men in my local support group. No treatment for prostate cancer is easy. We had a " patient panel " at my support group last week, and _everybody_ who had treatment had been through some tough times. The one person who didn't have treatment has no idea what his PSA level is; I suspect it's pretty high. He doesn't track it. Your cancer sounds like it's pretty low risk (unless the tumor is large). So you could wait until the effects of the TUMP settle down, before starting treatment. If by " Partin " you mean there's a 67% chance of the cancer being organ-confined, that seems low to me (with your Gleason score and PSA). If it's right, and you have a 33% chance of the cancer being out of the prostate _right now_, I'd say you shouldn't wait two years before treatment. But you can continue to track your PSA level, and maybe have another biopsy in a year. I wonder what your PSA doubling time is? PCa treatment is a crap shoot, .. . . you don't know the odds, .. . . and you can't avoid playing. Sorry to wander -- (who is just an unqualified amateur and fellow-sufferer) > > : > > > > Microwave therapy, also known as TUMP, is transurethral microwave of the > prostate. I was railroaded into having it to prepare me for brachytherapy, > which I'm no longer considering. The whole idea was preventing urinary > retention after the brachy. My uro really put the fear of God into me about > not being able to urinate after brachytherapy. Perhaps the down payment on > his yacht was due. I don't know. But the bottom line now is pretty ugly. I'm > impotent, probably from Lupron, and incontinent. And I'm regretting much of > what I've done to try to fight this beast. Even the bone scan seems > premature (it was negative). I go on Medicare in December, so I have some > time to slow down and take a breath, but, for example, I don't seem to be > able to find out if I could wait for two years for proton beam therapy to be > available in this area. I'd prefer that to IMRT, which is the road I seem to > be going down now. I'm a T1c with a PSA of 5.7 and a 3+3 Gleason. Partin > 67%. > > > > Tom Lauterback > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Tom, Not too sure that the ‘house’ has a huge advantage, at least not for most men. I wrote a piece aimed at helping men to try and calculate their individual odds. I called it The Elephant In The Room and its at http://www.yananow.net/elephant.htm If you haven’t read it you might find it useful. All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Tom Lauterback Sent: Tuesday, 11 August 2009 8:04 AM To: ProstateCancerSupport Subject: RE: Re: Reality Check : Good observations all. But I'm confused about the Partin. I was told that it's never higher than 80%, so I thought I was on pretty solid ground with 67%. Not so? The catheter, in my mind, is the enemy, especially after what I've been through. I just got off the phone with an old friend who went through brachytherapy 7 years ago, actually the person who predisposed me to brachy. He pointed out that I'm focused on the wrong problem, cancer vs. quality of life, and I wonder how many of us that applies to. We're scared to death of " The Big C " and just want it out or gone at all costs, whereas we can go through a botched procedure like I've apparently gone through (TUMP) and still stay focused on the radiation/RP/whatever to cure the cancer and not the damage done by the botched procedure. I'm guilty of staying focused on the ultimate step and unfocused on the fact that my quality of life is zero now and may not get any better. Time for a new urologist and/or oncologist. Crap shoot indeed. And the " house " seems to have a huge advantage. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of cpcohen1945 Sent: Monday, August 10, 2009 4:45 PM To: ProstateCancerSupport Subject: Re: Reality Check Tom -- This TUMP seems to have done you some real damage. I understand your reluctance to have any more surgery. I agree -- it's probably the Lupron that's causing ED. No procedure that you've had would have destroyed either your erectile nerves, or erectile tissues. Mulhall has some serious warnings about the effect of Lupron on erectile tissue. Essentially, " No erections --> tissue damage " . You might want to discuss that with your doctor. Injections or Viagra (or both) might be a good idea. Urinary strictures are a known side-effect of brachytherapy, and they sem to be more common than the doctors admit (what else is new?). They're usually handled by inserting a catheter, according to men in my local support group. No treatment for prostate cancer is easy. We had a " patient panel " at my support group last week, and _everybody_ who had treatment had been through some tough times. The one person who didn't have treatment has no idea what his PSA level is; I suspect it's pretty high. He doesn't track it. Your cancer sounds like it's pretty low risk (unless the tumor is large). So you could wait until the effects of the TUMP settle down, before starting treatment. If by " Partin " you mean there's a 67% chance of the cancer being organ-confined, that seems low to me (with your Gleason score and PSA). If it's right, and you have a 33% chance of the cancer being out of the prostate _right now_, I'd say you shouldn't wait two years before treatment. But you can continue to track your PSA level, and maybe have another biopsy in a year. I wonder what your PSA doubling time is? PCa treatment is a crap shoot, .. . . you don't know the odds, .. . . and you can't avoid playing. Sorry to wander -- (who is just an unqualified amateur and fellow-sufferer) > > : > > > > Microwave therapy, also known as TUMP, is transurethral microwave of the > prostate. I was railroaded into having it to prepare me for brachytherapy, > which I'm no longer considering. The whole idea was preventing urinary > retention after the brachy. My uro really put the fear of God into me about > not being able to urinate after brachytherapy. Perhaps the down payment on > his yacht was due. I don't know. But the bottom line now is pretty ugly. I'm > impotent, probably from Lupron, and incontinent. And I'm regretting much of > what I've done to try to fight this beast. Even the bone scan seems > premature (it was negative). I go on Medicare in December, so I have some > time to slow down and take a breath, but, for example, I don't seem to be > able to find out if I could wait for two years for proton beam therapy to be > available in this area. I'd prefer that to IMRT, which is the road I seem to > be going down now. I'm a T1c with a PSA of 5.7 and a 3+3 Gleason. Partin > 67%. > > > > Tom Lauterback > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Tom, Not too sure that the ‘house’ has a huge advantage, at least not for most men. I wrote a piece aimed at helping men to try and calculate their individual odds. I called it The Elephant In The Room and its at http://www.yananow.net/elephant.htm If you haven’t read it you might find it useful. All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Tom Lauterback Sent: Tuesday, 11 August 2009 8:04 AM To: ProstateCancerSupport Subject: RE: Re: Reality Check : Good observations all. But I'm confused about the Partin. I was told that it's never higher than 80%, so I thought I was on pretty solid ground with 67%. Not so? The catheter, in my mind, is the enemy, especially after what I've been through. I just got off the phone with an old friend who went through brachytherapy 7 years ago, actually the person who predisposed me to brachy. He pointed out that I'm focused on the wrong problem, cancer vs. quality of life, and I wonder how many of us that applies to. We're scared to death of " The Big C " and just want it out or gone at all costs, whereas we can go through a botched procedure like I've apparently gone through (TUMP) and still stay focused on the radiation/RP/whatever to cure the cancer and not the damage done by the botched procedure. I'm guilty of staying focused on the ultimate step and unfocused on the fact that my quality of life is zero now and may not get any better. Time for a new urologist and/or oncologist. Crap shoot indeed. And the " house " seems to have a huge advantage. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of cpcohen1945 Sent: Monday, August 10, 2009 4:45 PM To: ProstateCancerSupport Subject: Re: Reality Check Tom -- This TUMP seems to have done you some real damage. I understand your reluctance to have any more surgery. I agree -- it's probably the Lupron that's causing ED. No procedure that you've had would have destroyed either your erectile nerves, or erectile tissues. Mulhall has some serious warnings about the effect of Lupron on erectile tissue. Essentially, " No erections --> tissue damage " . You might want to discuss that with your doctor. Injections or Viagra (or both) might be a good idea. Urinary strictures are a known side-effect of brachytherapy, and they sem to be more common than the doctors admit (what else is new?). They're usually handled by inserting a catheter, according to men in my local support group. No treatment for prostate cancer is easy. We had a " patient panel " at my support group last week, and _everybody_ who had treatment had been through some tough times. The one person who didn't have treatment has no idea what his PSA level is; I suspect it's pretty high. He doesn't track it. Your cancer sounds like it's pretty low risk (unless the tumor is large). So you could wait until the effects of the TUMP settle down, before starting treatment. If by " Partin " you mean there's a 67% chance of the cancer being organ-confined, that seems low to me (with your Gleason score and PSA). If it's right, and you have a 33% chance of the cancer being out of the prostate _right now_, I'd say you shouldn't wait two years before treatment. But you can continue to track your PSA level, and maybe have another biopsy in a year. I wonder what your PSA doubling time is? PCa treatment is a crap shoot, .. . . you don't know the odds, .. . . and you can't avoid playing. Sorry to wander -- (who is just an unqualified amateur and fellow-sufferer) > > : > > > > Microwave therapy, also known as TUMP, is transurethral microwave of the > prostate. I was railroaded into having it to prepare me for brachytherapy, > which I'm no longer considering. The whole idea was preventing urinary > retention after the brachy. My uro really put the fear of God into me about > not being able to urinate after brachytherapy. Perhaps the down payment on > his yacht was due. I don't know. But the bottom line now is pretty ugly. I'm > impotent, probably from Lupron, and incontinent. And I'm regretting much of > what I've done to try to fight this beast. Even the bone scan seems > premature (it was negative). I go on Medicare in December, so I have some > time to slow down and take a breath, but, for example, I don't seem to be > able to find out if I could wait for two years for proton beam therapy to be > available in this area. I'd prefer that to IMRT, which is the road I seem to > be going down now. I'm a T1c with a PSA of 5.7 and a 3+3 Gleason. Partin > 67%. > > > > Tom Lauterback > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Thanks, Terry. I haven't, but I'm going there now. By " The House, " I meant the medical establishment who deal with PCa. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Terry Herbert Sent: Monday, August 10, 2009 6:32 PM To: ProstateCancerSupport Subject: RE: Re: Reality Check Tom, Not too sure that the ‘house’ has a huge advantage, at least not for most men. I wrote a piece aimed at helping men to try and calculate their individual odds. I called it The Elephant In The Room and its at http://www.yananow.net/elephant.htm If you haven’t read it you might find it useful. All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Tom Lauterback Sent: Tuesday, 11 August 2009 8:04 AM To: ProstateCancerSupport Subject: RE: Re: Reality Check : Good observations all. But I'm confused about the Partin. I was told that it's never higher than 80%, so I thought I was on pretty solid ground with 67%. Not so? The catheter, in my mind, is the enemy, especially after what I've been through. I just got off the phone with an old friend who went through brachytherapy 7 years ago, actually the person who predisposed me to brachy. He pointed out that I'm focused on the wrong problem, cancer vs. quality of life, and I wonder how many of us that applies to. We're scared to death of " The Big C " and just want it out or gone at all costs, whereas we can go through a botched procedure like I've apparently gone through (TUMP) and still stay focused on the radiation/RP/whatever to cure the cancer and not the damage done by the botched procedure. I'm guilty of staying focused on the ultimate step and unfocused on the fact that my quality of life is zero now and may not get any better. Time for a new urologist and/or oncologist. Crap shoot indeed. And the " house " seems to have a huge advantage. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of cpcohen1945 Sent: Monday, August 10, 2009 4:45 PM To: ProstateCancerSupport Subject: Re: Reality Check Tom -- This TUMP seems to have done you some real damage. I understand your reluctance to have any more surgery. I agree -- it's probably the Lupron that's causing ED. No procedure that you've had would have destroyed either your erectile nerves, or erectile tissues. Mulhall has some serious warnings about the effect of Lupron on erectile tissue. Essentially, " No erections --> tissue damage " . You might want to discuss that with your doctor. Injections or Viagra (or both) might be a good idea. Urinary strictures are a known side-effect of brachytherapy, and they sem to be more common than the doctors admit (what else is new?). They're usually handled by inserting a catheter, according to men in my local support group. No treatment for prostate cancer is easy. We had a " patient panel " at my support group last week, and _everybody_ who had treatment had been through some tough times. The one person who didn't have treatment has no idea what his PSA level is; I suspect it's pretty high. He doesn't track it. Your cancer sounds like it's pretty low risk (unless the tumor is large). So you could wait until the effects of the TUMP settle down, before starting treatment. If by " Partin " you mean there's a 67% chance of the cancer being organ-confined, that seems low to me (with your Gleason score and PSA). If it's right, and you have a 33% chance of the cancer being out of the prostate _right now_, I'd say you shouldn't wait two years before treatment. But you can continue to track your PSA level, and maybe have another biopsy in a year. I wonder what your PSA doubling time is? PCa treatment is a crap shoot, .. . . you don't know the odds, .. . . and you can't avoid playing. Sorry to wander -- (who is just an unqualified amateur and fellow-sufferer) > > : > > > > Microwave therapy, also known as TUMP, is transurethral microwave of the > prostate. I was railroaded into having it to prepare me for brachytherapy, > which I'm no longer considering. The whole idea was preventing urinary > retention after the brachy. My uro really put the fear of God into me about > not being able to urinate after brachytherapy. Perhaps the down payment on > his yacht was due. I don't know. But the bottom line now is pretty ugly. I'm > impotent, probably from Lupron, and incontinent. And I'm regretting much of > what I've done to try to fight this beast. Even the bone scan seems > premature (it was negative). I go on Medicare in December, so I have some > time to slow down and take a breath, but, for example, I don't seem to be > able to find out if I could wait for two years for proton beam therapy to be > available in this area. I'd prefer that to IMRT, which is the road I seem to > be going down now. I'm a T1c with a PSA of 5.7 and a 3+3 Gleason. Partin > 67%. > > > > Tom Lauterback > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Thanks, Terry. I haven't, but I'm going there now. By " The House, " I meant the medical establishment who deal with PCa. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Terry Herbert Sent: Monday, August 10, 2009 6:32 PM To: ProstateCancerSupport Subject: RE: Re: Reality Check Tom, Not too sure that the ‘house’ has a huge advantage, at least not for most men. I wrote a piece aimed at helping men to try and calculate their individual odds. I called it The Elephant In The Room and its at http://www.yananow.net/elephant.htm If you haven’t read it you might find it useful. All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Tom Lauterback Sent: Tuesday, 11 August 2009 8:04 AM To: ProstateCancerSupport Subject: RE: Re: Reality Check : Good observations all. But I'm confused about the Partin. I was told that it's never higher than 80%, so I thought I was on pretty solid ground with 67%. Not so? The catheter, in my mind, is the enemy, especially after what I've been through. I just got off the phone with an old friend who went through brachytherapy 7 years ago, actually the person who predisposed me to brachy. He pointed out that I'm focused on the wrong problem, cancer vs. quality of life, and I wonder how many of us that applies to. We're scared to death of " The Big C " and just want it out or gone at all costs, whereas we can go through a botched procedure like I've apparently gone through (TUMP) and still stay focused on the radiation/RP/whatever to cure the cancer and not the damage done by the botched procedure. I'm guilty of staying focused on the ultimate step and unfocused on the fact that my quality of life is zero now and may not get any better. Time for a new urologist and/or oncologist. Crap shoot indeed. And the " house " seems to have a huge advantage. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of cpcohen1945 Sent: Monday, August 10, 2009 4:45 PM To: ProstateCancerSupport Subject: Re: Reality Check Tom -- This TUMP seems to have done you some real damage. I understand your reluctance to have any more surgery. I agree -- it's probably the Lupron that's causing ED. No procedure that you've had would have destroyed either your erectile nerves, or erectile tissues. Mulhall has some serious warnings about the effect of Lupron on erectile tissue. Essentially, " No erections --> tissue damage " . You might want to discuss that with your doctor. Injections or Viagra (or both) might be a good idea. Urinary strictures are a known side-effect of brachytherapy, and they sem to be more common than the doctors admit (what else is new?). They're usually handled by inserting a catheter, according to men in my local support group. No treatment for prostate cancer is easy. We had a " patient panel " at my support group last week, and _everybody_ who had treatment had been through some tough times. The one person who didn't have treatment has no idea what his PSA level is; I suspect it's pretty high. He doesn't track it. Your cancer sounds like it's pretty low risk (unless the tumor is large). So you could wait until the effects of the TUMP settle down, before starting treatment. If by " Partin " you mean there's a 67% chance of the cancer being organ-confined, that seems low to me (with your Gleason score and PSA). If it's right, and you have a 33% chance of the cancer being out of the prostate _right now_, I'd say you shouldn't wait two years before treatment. But you can continue to track your PSA level, and maybe have another biopsy in a year. I wonder what your PSA doubling time is? PCa treatment is a crap shoot, .. . . you don't know the odds, .. . . and you can't avoid playing. Sorry to wander -- (who is just an unqualified amateur and fellow-sufferer) > > : > > > > Microwave therapy, also known as TUMP, is transurethral microwave of the > prostate. I was railroaded into having it to prepare me for brachytherapy, > which I'm no longer considering. The whole idea was preventing urinary > retention after the brachy. My uro really put the fear of God into me about > not being able to urinate after brachytherapy. Perhaps the down payment on > his yacht was due. I don't know. But the bottom line now is pretty ugly. I'm > impotent, probably from Lupron, and incontinent. And I'm regretting much of > what I've done to try to fight this beast. Even the bone scan seems > premature (it was negative). I go on Medicare in December, so I have some > time to slow down and take a breath, but, for example, I don't seem to be > able to find out if I could wait for two years for proton beam therapy to be > available in this area. I'd prefer that to IMRT, which is the road I seem to > be going down now. I'm a T1c with a PSA of 5.7 and a 3+3 Gleason. Partin > 67%. > > > > Tom Lauterback > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Excellent article, Terry. Thanks again. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Terry Herbert Sent: Monday, August 10, 2009 6:32 PM To: ProstateCancerSupport Subject: RE: Re: Reality Check Tom, Not too sure that the ‘house’ has a huge advantage, at least not for most men. I wrote a piece aimed at helping men to try and calculate their individual odds. I called it The Elephant In The Room and its at http://www.yananow.net/elephant.htm If you haven’t read it you might find it useful. All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Tom Lauterback Sent: Tuesday, 11 August 2009 8:04 AM To: ProstateCancerSupport Subject: RE: Re: Reality Check : Good observations all. But I'm confused about the Partin. I was told that it's never higher than 80%, so I thought I was on pretty solid ground with 67%. Not so? The catheter, in my mind, is the enemy, especially after what I've been through. I just got off the phone with an old friend who went through brachytherapy 7 years ago, actually the person who predisposed me to brachy. He pointed out that I'm focused on the wrong problem, cancer vs. quality of life, and I wonder how many of us that applies to. We're scared to death of " The Big C " and just want it out or gone at all costs, whereas we can go through a botched procedure like I've apparently gone through (TUMP) and still stay focused on the radiation/RP/whatever to cure the cancer and not the damage done by the botched procedure. I'm guilty of staying focused on the ultimate step and unfocused on the fact that my quality of life is zero now and may not get any better. Time for a new urologist and/or oncologist. Crap shoot indeed. And the " house " seems to have a huge advantage. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of cpcohen1945 Sent: Monday, August 10, 2009 4:45 PM To: ProstateCancerSupport Subject: Re: Reality Check Tom -- This TUMP seems to have done you some real damage. I understand your reluctance to have any more surgery. I agree -- it's probably the Lupron that's causing ED. No procedure that you've had would have destroyed either your erectile nerves, or erectile tissues. Mulhall has some serious warnings about the effect of Lupron on erectile tissue. Essentially, " No erections --> tissue damage " . You might want to discuss that with your doctor. Injections or Viagra (or both) might be a good idea. Urinary strictures are a known side-effect of brachytherapy, and they sem to be more common than the doctors admit (what else is new?). They're usually handled by inserting a catheter, according to men in my local support group. No treatment for prostate cancer is easy. We had a " patient panel " at my support group last week, and _everybody_ who had treatment had been through some tough times. The one person who didn't have treatment has no idea what his PSA level is; I suspect it's pretty high. He doesn't track it. Your cancer sounds like it's pretty low risk (unless the tumor is large). So you could wait until the effects of the TUMP settle down, before starting treatment. If by " Partin " you mean there's a 67% chance of the cancer being organ-confined, that seems low to me (with your Gleason score and PSA). If it's right, and you have a 33% chance of the cancer being out of the prostate _right now_, I'd say you shouldn't wait two years before treatment. But you can continue to track your PSA level, and maybe have another biopsy in a year. I wonder what your PSA doubling time is? PCa treatment is a crap shoot, .. . . you don't know the odds, .. . . and you can't avoid playing. Sorry to wander -- (who is just an unqualified amateur and fellow-sufferer) > > : > > > > Microwave therapy, also known as TUMP, is transurethral microwave of the > prostate. I was railroaded into having it to prepare me for brachytherapy, > which I'm no longer considering. The whole idea was preventing urinary > retention after the brachy. My uro really put the fear of God into me about > not being able to urinate after brachytherapy. Perhaps the down payment on > his yacht was due. I don't know. But the bottom line now is pretty ugly. I'm > impotent, probably from Lupron, and incontinent. And I'm regretting much of > what I've done to try to fight this beast. Even the bone scan seems > premature (it was negative). I go on Medicare in December, so I have some > time to slow down and take a breath, but, for example, I don't seem to be > able to find out if I could wait for two years for proton beam therapy to be > available in this area. I'd prefer that to IMRT, which is the road I seem to > be going down now. I'm a T1c with a PSA of 5.7 and a 3+3 Gleason. Partin > 67%. > > > > Tom Lauterback > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Excellent article, Terry. Thanks again. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Terry Herbert Sent: Monday, August 10, 2009 6:32 PM To: ProstateCancerSupport Subject: RE: Re: Reality Check Tom, Not too sure that the ‘house’ has a huge advantage, at least not for most men. I wrote a piece aimed at helping men to try and calculate their individual odds. I called it The Elephant In The Room and its at http://www.yananow.net/elephant.htm If you haven’t read it you might find it useful. All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Tom Lauterback Sent: Tuesday, 11 August 2009 8:04 AM To: ProstateCancerSupport Subject: RE: Re: Reality Check : Good observations all. But I'm confused about the Partin. I was told that it's never higher than 80%, so I thought I was on pretty solid ground with 67%. Not so? The catheter, in my mind, is the enemy, especially after what I've been through. I just got off the phone with an old friend who went through brachytherapy 7 years ago, actually the person who predisposed me to brachy. He pointed out that I'm focused on the wrong problem, cancer vs. quality of life, and I wonder how many of us that applies to. We're scared to death of " The Big C " and just want it out or gone at all costs, whereas we can go through a botched procedure like I've apparently gone through (TUMP) and still stay focused on the radiation/RP/whatever to cure the cancer and not the damage done by the botched procedure. I'm guilty of staying focused on the ultimate step and unfocused on the fact that my quality of life is zero now and may not get any better. Time for a new urologist and/or oncologist. Crap shoot indeed. And the " house " seems to have a huge advantage. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of cpcohen1945 Sent: Monday, August 10, 2009 4:45 PM To: ProstateCancerSupport Subject: Re: Reality Check Tom -- This TUMP seems to have done you some real damage. I understand your reluctance to have any more surgery. I agree -- it's probably the Lupron that's causing ED. No procedure that you've had would have destroyed either your erectile nerves, or erectile tissues. Mulhall has some serious warnings about the effect of Lupron on erectile tissue. Essentially, " No erections --> tissue damage " . You might want to discuss that with your doctor. Injections or Viagra (or both) might be a good idea. Urinary strictures are a known side-effect of brachytherapy, and they sem to be more common than the doctors admit (what else is new?). They're usually handled by inserting a catheter, according to men in my local support group. No treatment for prostate cancer is easy. We had a " patient panel " at my support group last week, and _everybody_ who had treatment had been through some tough times. The one person who didn't have treatment has no idea what his PSA level is; I suspect it's pretty high. He doesn't track it. Your cancer sounds like it's pretty low risk (unless the tumor is large). So you could wait until the effects of the TUMP settle down, before starting treatment. If by " Partin " you mean there's a 67% chance of the cancer being organ-confined, that seems low to me (with your Gleason score and PSA). If it's right, and you have a 33% chance of the cancer being out of the prostate _right now_, I'd say you shouldn't wait two years before treatment. But you can continue to track your PSA level, and maybe have another biopsy in a year. I wonder what your PSA doubling time is? PCa treatment is a crap shoot, .. . . you don't know the odds, .. . . and you can't avoid playing. Sorry to wander -- (who is just an unqualified amateur and fellow-sufferer) > > : > > > > Microwave therapy, also known as TUMP, is transurethral microwave of the > prostate. I was railroaded into having it to prepare me for brachytherapy, > which I'm no longer considering. The whole idea was preventing urinary > retention after the brachy. My uro really put the fear of God into me about > not being able to urinate after brachytherapy. Perhaps the down payment on > his yacht was due. I don't know. But the bottom line now is pretty ugly. I'm > impotent, probably from Lupron, and incontinent. And I'm regretting much of > what I've done to try to fight this beast. Even the bone scan seems > premature (it was negative). I go on Medicare in December, so I have some > time to slow down and take a breath, but, for example, I don't seem to be > able to find out if I could wait for two years for proton beam therapy to be > available in this area. I'd prefer that to IMRT, which is the road I seem to > be going down now. I'm a T1c with a PSA of 5.7 and a 3+3 Gleason. Partin > 67%. > > > > Tom Lauterback > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 > This TUMP seems to have done you some real damage. I > understand your reluctance to have any more surgery. > > I agree -- it's probably the Lupron that's causing > ED. No procedure that you've had would have destroyed > either your erectile nerves, or erectile tissues. > Mulhall has some serious warnings about the effect of Lupron > on erectile tissue. Essentially, " No erections --> > tissue damage " . > > You might want to discuss that with your doctor. > Injections or Viagra (or both) might be a good idea. Tom, It is sometimes claimed that there can be atrophy in the blood vessel network that provides the blood for erections if a person never has erections. I don't know if that's true or not, and don't know if there have been any serious studies of the problem. However, I agree with . I wouldn't think it could hurt to attempt to get erections. When I was on Lupron I had zero interest in sex. I could look at a beautiful woman and wonder why such a sight ever got me excited. However I did attempt to have sex from time to time, mainly for my wife's benefit, so she would feel that she still had a husband and he still loved her in a physical way. To my great surprise, after working at it for 10-15 minutes, I found myself getting interested, aroused, and able to have both erections and intercourse. So, I recommend that you try it, even if you have no inclination. You too might be surprised. > If by " Partin " you mean there's a 67% chance of the cancer > being organ-confined, that seems low to me (with your > Gleason score and PSA). If it's right, and > you have a 33% chance of the cancer being out of the > prostate _right now_, I'd say you shouldn't wait two years > before treatment. But you can continue to track your > PSA level, and maybe have another biopsy in a year. I > wonder what your PSA doubling time is? Like , I too wonder what the Partin percentage means here. However I would like to add one supplement to his advice. While you're on Lupron, your cancer will be largely suppressed. In effect, your treatment has already begun. I _think_ (I'm no expert on this) that this gives you additional time both to recover from the botched TUMP, and to make your decision about the best course of action, without worrying much about the cancer growing while you wait. This too is a question for the next doctor you see. Best of luck. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 > This TUMP seems to have done you some real damage. I > understand your reluctance to have any more surgery. > > I agree -- it's probably the Lupron that's causing > ED. No procedure that you've had would have destroyed > either your erectile nerves, or erectile tissues. > Mulhall has some serious warnings about the effect of Lupron > on erectile tissue. Essentially, " No erections --> > tissue damage " . > > You might want to discuss that with your doctor. > Injections or Viagra (or both) might be a good idea. Tom, It is sometimes claimed that there can be atrophy in the blood vessel network that provides the blood for erections if a person never has erections. I don't know if that's true or not, and don't know if there have been any serious studies of the problem. However, I agree with . I wouldn't think it could hurt to attempt to get erections. When I was on Lupron I had zero interest in sex. I could look at a beautiful woman and wonder why such a sight ever got me excited. However I did attempt to have sex from time to time, mainly for my wife's benefit, so she would feel that she still had a husband and he still loved her in a physical way. To my great surprise, after working at it for 10-15 minutes, I found myself getting interested, aroused, and able to have both erections and intercourse. So, I recommend that you try it, even if you have no inclination. You too might be surprised. > If by " Partin " you mean there's a 67% chance of the cancer > being organ-confined, that seems low to me (with your > Gleason score and PSA). If it's right, and > you have a 33% chance of the cancer being out of the > prostate _right now_, I'd say you shouldn't wait two years > before treatment. But you can continue to track your > PSA level, and maybe have another biopsy in a year. I > wonder what your PSA doubling time is? Like , I too wonder what the Partin percentage means here. However I would like to add one supplement to his advice. While you're on Lupron, your cancer will be largely suppressed. In effect, your treatment has already begun. I _think_ (I'm no expert on this) that this gives you additional time both to recover from the botched TUMP, and to make your decision about the best course of action, without worrying much about the cancer growing while you wait. This too is a question for the next doctor you see. Best of luck. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 I'm afraid you're right, Alan. I'm just not healing. If anyone knows of a reliable urologist in the NW burbs of Chicago, I'd appreciate a recommendation. The Lupron has played hell with me, but I expected that. I'm sure my testosterone is as low as it can get. Good suggestions re: ED. The way Partin was explained to me (of course, the urologist lied about many other things) was that there's a 67% chance that the cancer is contained in the prostate, and that percentage never gets higher than 80%. Does this ring true? I thought I was doing pretty well according to Dr. Partin and his tables. I did have a bone scan early on, which was negative, showing no evidence of cancer spreading to the bones. But, yes, it would indicate a 33% chance of spread. I'm realizing that I've been rushed through this process and that time is on my side, at least relative to other cases about which I've read on the support group sites. The lesson to be learned is that one should worry about quality of life rather than being rushed to get the cancer cut out or otherwise subdued. I've been rushing, for perhaps no good reason, and I guess I'm paying the price for my haste. One of the gaps in my knowledge is my PSA doubling time. Seems my PSA has fluctuated over the years, including many years of BPH before the PCa diagnosis. So, I can't share this bit of info. Getting info from my urologist has been like pulling teeth. I'm sure he'd rather have me do everything he says without asking questions. Again, I'm paying the price for not questioning. I hope there are lessons to be learned here for those of you who are newly diagnosed. It's a crap shoot, and the " House " (urologists, oncologists, etc.) have a huge advantage, I think. They're trading on our fears once we hear the " C " word. We have to be our own advocates and manage our own care and ultimate resolution. I hope I'm not learning this lesson too late. Thank to all who've been supportive. Hope I can return the favor. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan Meyer Sent: Monday, August 10, 2009 10:48 PM To: ProstateCancerSupport Subject: Re: Re: Reality Check > This TUMP seems to have done you some real damage. I > understand your reluctance to have any more surgery. > > I agree -- it's probably the Lupron that's causing > ED. No procedure that you've had would have destroyed > either your erectile nerves, or erectile tissues. > Mulhall has some serious warnings about the effect of Lupron > on erectile tissue. Essentially, " No erections --> > tissue damage " . > > You might want to discuss that with your doctor. > Injections or Viagra (or both) might be a good idea. Tom, It is sometimes claimed that there can be atrophy in the blood vessel network that provides the blood for erections if a person never has erections. I don't know if that's true or not, and don't know if there have been any serious studies of the problem. However, I agree with . I wouldn't think it could hurt to attempt to get erections. When I was on Lupron I had zero interest in sex. I could look at a beautiful woman and wonder why such a sight ever got me excited. However I did attempt to have sex from time to time, mainly for my wife's benefit, so she would feel that she still had a husband and he still loved her in a physical way. To my great surprise, after working at it for 10-15 minutes, I found myself getting interested, aroused, and able to have both erections and intercourse. So, I recommend that you try it, even if you have no inclination. You too might be surprised. > If by " Partin " you mean there's a 67% chance of the cancer > being organ-confined, that seems low to me (with your > Gleason score and PSA). If it's right, and > you have a 33% chance of the cancer being out of the > prostate _right now_, I'd say you shouldn't wait two years > before treatment. But you can continue to track your > PSA level, and maybe have another biopsy in a year. I > wonder what your PSA doubling time is? Like , I too wonder what the Partin percentage means here. However I would like to add one supplement to his advice. While you're on Lupron, your cancer will be largely suppressed. In effect, your treatment has already begun. I _think_ (I'm no expert on this) that this gives you additional time both to recover from the botched TUMP, and to make your decision about the best course of action, without worrying much about the cancer growing while you wait. This too is a question for the next doctor you see. Best of luck. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 I'm afraid you're right, Alan. I'm just not healing. If anyone knows of a reliable urologist in the NW burbs of Chicago, I'd appreciate a recommendation. The Lupron has played hell with me, but I expected that. I'm sure my testosterone is as low as it can get. Good suggestions re: ED. The way Partin was explained to me (of course, the urologist lied about many other things) was that there's a 67% chance that the cancer is contained in the prostate, and that percentage never gets higher than 80%. Does this ring true? I thought I was doing pretty well according to Dr. Partin and his tables. I did have a bone scan early on, which was negative, showing no evidence of cancer spreading to the bones. But, yes, it would indicate a 33% chance of spread. I'm realizing that I've been rushed through this process and that time is on my side, at least relative to other cases about which I've read on the support group sites. The lesson to be learned is that one should worry about quality of life rather than being rushed to get the cancer cut out or otherwise subdued. I've been rushing, for perhaps no good reason, and I guess I'm paying the price for my haste. One of the gaps in my knowledge is my PSA doubling time. Seems my PSA has fluctuated over the years, including many years of BPH before the PCa diagnosis. So, I can't share this bit of info. Getting info from my urologist has been like pulling teeth. I'm sure he'd rather have me do everything he says without asking questions. Again, I'm paying the price for not questioning. I hope there are lessons to be learned here for those of you who are newly diagnosed. It's a crap shoot, and the " House " (urologists, oncologists, etc.) have a huge advantage, I think. They're trading on our fears once we hear the " C " word. We have to be our own advocates and manage our own care and ultimate resolution. I hope I'm not learning this lesson too late. Thank to all who've been supportive. Hope I can return the favor. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan Meyer Sent: Monday, August 10, 2009 10:48 PM To: ProstateCancerSupport Subject: Re: Re: Reality Check > This TUMP seems to have done you some real damage. I > understand your reluctance to have any more surgery. > > I agree -- it's probably the Lupron that's causing > ED. No procedure that you've had would have destroyed > either your erectile nerves, or erectile tissues. > Mulhall has some serious warnings about the effect of Lupron > on erectile tissue. Essentially, " No erections --> > tissue damage " . > > You might want to discuss that with your doctor. > Injections or Viagra (or both) might be a good idea. Tom, It is sometimes claimed that there can be atrophy in the blood vessel network that provides the blood for erections if a person never has erections. I don't know if that's true or not, and don't know if there have been any serious studies of the problem. However, I agree with . I wouldn't think it could hurt to attempt to get erections. When I was on Lupron I had zero interest in sex. I could look at a beautiful woman and wonder why such a sight ever got me excited. However I did attempt to have sex from time to time, mainly for my wife's benefit, so she would feel that she still had a husband and he still loved her in a physical way. To my great surprise, after working at it for 10-15 minutes, I found myself getting interested, aroused, and able to have both erections and intercourse. So, I recommend that you try it, even if you have no inclination. You too might be surprised. > If by " Partin " you mean there's a 67% chance of the cancer > being organ-confined, that seems low to me (with your > Gleason score and PSA). If it's right, and > you have a 33% chance of the cancer being out of the > prostate _right now_, I'd say you shouldn't wait two years > before treatment. But you can continue to track your > PSA level, and maybe have another biopsy in a year. I > wonder what your PSA doubling time is? Like , I too wonder what the Partin percentage means here. However I would like to add one supplement to his advice. While you're on Lupron, your cancer will be largely suppressed. In effect, your treatment has already begun. I _think_ (I'm no expert on this) that this gives you additional time both to recover from the botched TUMP, and to make your decision about the best course of action, without worrying much about the cancer growing while you wait. This too is a question for the next doctor you see. Best of luck. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 .... > If anyone knows of a reliable urologist in the NW burbs of > Chicago, I'd appreciate a recommendation. .... I never met the man and don't know where his offices are in Chicago, but there's a doctor Gerald Chodak who has produced some nice videos on prostate cancer and is somewhere in the Chicago area. Here's his website: http://www.prostatevideos.com/ I once wrote to him questioning one of the statements he made in a video and he took the time to write back and explain why he thought he was right. It was a very reasonable explanation. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 .... > If anyone knows of a reliable urologist in the NW burbs of > Chicago, I'd appreciate a recommendation. .... I never met the man and don't know where his offices are in Chicago, but there's a doctor Gerald Chodak who has produced some nice videos on prostate cancer and is somewhere in the Chicago area. Here's his website: http://www.prostatevideos.com/ I once wrote to him questioning one of the statements he made in a video and he took the time to write back and explain why he thought he was right. It was a very reasonable explanation. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Thanks again. He's at Northwest Community Hospital, only 15-20 miles from here in Arlington Heights. Thanks again. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan Meyer Sent: Tuesday, August 11, 2009 9:08 AM To: ProstateCancerSupport Subject: RE: Re: Reality Check .... > If anyone knows of a reliable urologist in the NW burbs of > Chicago, I'd appreciate a recommendation. .... I never met the man and don't know where his offices are in Chicago, but there's a doctor Gerald Chodak who has produced some nice videos on prostate cancer and is somewhere in the Chicago area. Here's his website: http://www.prostatevideos.com/ I once wrote to him questioning one of the statements he made in a video and he took the time to write back and explain why he thought he was right. It was a very reasonable explanation. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Thanks again. He's at Northwest Community Hospital, only 15-20 miles from here in Arlington Heights. Thanks again. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan Meyer Sent: Tuesday, August 11, 2009 9:08 AM To: ProstateCancerSupport Subject: RE: Re: Reality Check .... > If anyone knows of a reliable urologist in the NW burbs of > Chicago, I'd appreciate a recommendation. .... I never met the man and don't know where his offices are in Chicago, but there's a doctor Gerald Chodak who has produced some nice videos on prostate cancer and is somewhere in the Chicago area. Here's his website: http://www.prostatevideos.com/ I once wrote to him questioning one of the statements he made in a video and he took the time to write back and explain why he thought he was right. It was a very reasonable explanation. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Tom -- I've just checked my numbers (PSA 8.0, Gleason 3+3, T1c) on this site from s Hopkins: http://urology.jhu.edu/prostate/partintables.php which has " 2001 " Partin tables, and I get: .. . . Organ confined: 81 (79-83) .. . . Extraprostatic extension: 18 (16-19) .. . . Seminal Vesicle Invasion: 1 (1-2) .. . . Lymph Node Invasion: 0 (0-0) So your 67% isn't bad. You might try the s Hopkins site, and see if their numbers are different. There's also a good set of nomograms on the MSKCC website: http://www.mskcc.org/mskcc/html/10088.cfm The catheter I had in, for three weeks after surgery, was certainly not a friend. It hurt, and it gave me bladder spasms. And I suspect that it scarred my urethra and made it close up, months later. But the catheters that I insert every other day, to avoid another urinary stricture, are definitely " on my side " . As you say (in another post), it's important to deal with your current situation. The most important thing I learned from my local support group is: .. . . " I have prostate cancer " is _not_ the same as " I'm dying " . You have time to think and consider the options carefully. Another uro's opinion would be worth having. Hardly any doctor will say: .. . " _I_ did a bad job " , but some doctors are willing to say: .. . " I would have done it differently " and work on fixing the problem. > > : > > Good observations all. But I'm confused about the Partin. I was told that > it's never higher than 80%, so I thought I was on pretty solid ground with > 67%. Not so? > > The catheter, in my mind, is the enemy, especially after what I've been > through. > > I just got off the phone with an old friend who went through brachytherapy 7 > years ago, actually the person who predisposed me to brachy. He pointed out > that I'm focused on the wrong problem, cancer vs. quality of life, and I > wonder how many of us that applies to. We're scared to death of " The Big C " > and just want it out or gone at all costs, whereas we can go through a > botched procedure like I've apparently gone through (TUMP) and still stay > focused on the radiation/RP/whatever to cure the cancer and not the damage > done by the botched procedure. I'm guilty of staying focused on the ultimate > step and unfocused on the fact that my quality of life is zero now and may > not get any better. Time for a new urologist and/or oncologist. > > > > Crap shoot indeed. And the " house " seems to have a huge advantage. > > > > Tom Lauterback > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Tom -- I've just checked my numbers (PSA 8.0, Gleason 3+3, T1c) on this site from s Hopkins: http://urology.jhu.edu/prostate/partintables.php which has " 2001 " Partin tables, and I get: .. . . Organ confined: 81 (79-83) .. . . Extraprostatic extension: 18 (16-19) .. . . Seminal Vesicle Invasion: 1 (1-2) .. . . Lymph Node Invasion: 0 (0-0) So your 67% isn't bad. You might try the s Hopkins site, and see if their numbers are different. There's also a good set of nomograms on the MSKCC website: http://www.mskcc.org/mskcc/html/10088.cfm The catheter I had in, for three weeks after surgery, was certainly not a friend. It hurt, and it gave me bladder spasms. And I suspect that it scarred my urethra and made it close up, months later. But the catheters that I insert every other day, to avoid another urinary stricture, are definitely " on my side " . As you say (in another post), it's important to deal with your current situation. The most important thing I learned from my local support group is: .. . . " I have prostate cancer " is _not_ the same as " I'm dying " . You have time to think and consider the options carefully. Another uro's opinion would be worth having. Hardly any doctor will say: .. . " _I_ did a bad job " , but some doctors are willing to say: .. . " I would have done it differently " and work on fixing the problem. > > : > > Good observations all. But I'm confused about the Partin. I was told that > it's never higher than 80%, so I thought I was on pretty solid ground with > 67%. Not so? > > The catheter, in my mind, is the enemy, especially after what I've been > through. > > I just got off the phone with an old friend who went through brachytherapy 7 > years ago, actually the person who predisposed me to brachy. He pointed out > that I'm focused on the wrong problem, cancer vs. quality of life, and I > wonder how many of us that applies to. We're scared to death of " The Big C " > and just want it out or gone at all costs, whereas we can go through a > botched procedure like I've apparently gone through (TUMP) and still stay > focused on the radiation/RP/whatever to cure the cancer and not the damage > done by the botched procedure. I'm guilty of staying focused on the ultimate > step and unfocused on the fact that my quality of life is zero now and may > not get any better. Time for a new urologist and/or oncologist. > > > > Crap shoot indeed. And the " house " seems to have a huge advantage. > > > > Tom Lauterback > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 : I get 83...16...1...0. Very interesting. I was told the Partin never goes above 80%, but I was told a lot of things, like proton beams are only good for pediatric cancers (since he didn't have access to proton beam therapy), cryosurgery is not available in the US, etc. Lotsa lies being told every day, I'm sure. And even more sins of omission than of commission. E.g., I'm not going to mention something that I can't do for you, even though that may be exactly what you need. Everyone should try the s Hopkins link (it takes all of ten seconds) and compare your results to those from your urologist. I'd ask the urologist to explain any discrepancies. But then, my graduate degree is not an MD. Poor planning on my part. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of cpcohen1945 Sent: Tuesday, August 11, 2009 9:43 AM To: ProstateCancerSupport Subject: Re: Reality Check Tom -- I've just checked my numbers (PSA 8.0, Gleason 3+3, T1c) on this site from s Hopkins: http://urology.jhu.edu/prostate/partintables.php which has " 2001 " Partin tables, and I get: .. . . Organ confined: 81 (79-83) .. . . Extraprostatic extension: 18 (16-19) .. . . Seminal Vesicle Invasion: 1 (1-2) .. . . Lymph Node Invasion: 0 (0-0) So your 67% isn't bad. You might try the s Hopkins site, and see if their numbers are different. There's also a good set of nomograms on the MSKCC website: http://www.mskcc.org/mskcc/html/10088.cfm The catheter I had in, for three weeks after surgery, was certainly not a friend. It hurt, and it gave me bladder spasms. And I suspect that it scarred my urethra and made it close up, months later. But the catheters that I insert every other day, to avoid another urinary stricture, are definitely " on my side " . As you say (in another post), it's important to deal with your current situation. The most important thing I learned from my local support group is: .. . . " I have prostate cancer " is _not_ the same as " I'm dying " . You have time to think and consider the options carefully. Another uro's opinion would be worth having. Hardly any doctor will say: .. . " _I_ did a bad job " , but some doctors are willing to say: .. . " I would have done it differently " and work on fixing the problem. > > : > > Good observations all. But I'm confused about the Partin. I was told that > it's never higher than 80%, so I thought I was on pretty solid ground with > 67%. Not so? > > The catheter, in my mind, is the enemy, especially after what I've been > through. > > I just got off the phone with an old friend who went through brachytherapy 7 > years ago, actually the person who predisposed me to brachy. He pointed out > that I'm focused on the wrong problem, cancer vs. quality of life, and I > wonder how many of us that applies to. We're scared to death of " The Big C " > and just want it out or gone at all costs, whereas we can go through a > botched procedure like I've apparently gone through (TUMP) and still stay > focused on the radiation/RP/whatever to cure the cancer and not the damage > done by the botched procedure. I'm guilty of staying focused on the ultimate > step and unfocused on the fact that my quality of life is zero now and may > not get any better. Time for a new urologist and/or oncologist. > > > > Crap shoot indeed. And the " house " seems to have a huge advantage. > > > > Tom Lauterback > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 : I get 83...16...1...0. Very interesting. I was told the Partin never goes above 80%, but I was told a lot of things, like proton beams are only good for pediatric cancers (since he didn't have access to proton beam therapy), cryosurgery is not available in the US, etc. Lotsa lies being told every day, I'm sure. And even more sins of omission than of commission. E.g., I'm not going to mention something that I can't do for you, even though that may be exactly what you need. Everyone should try the s Hopkins link (it takes all of ten seconds) and compare your results to those from your urologist. I'd ask the urologist to explain any discrepancies. But then, my graduate degree is not an MD. Poor planning on my part. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of cpcohen1945 Sent: Tuesday, August 11, 2009 9:43 AM To: ProstateCancerSupport Subject: Re: Reality Check Tom -- I've just checked my numbers (PSA 8.0, Gleason 3+3, T1c) on this site from s Hopkins: http://urology.jhu.edu/prostate/partintables.php which has " 2001 " Partin tables, and I get: .. . . Organ confined: 81 (79-83) .. . . Extraprostatic extension: 18 (16-19) .. . . Seminal Vesicle Invasion: 1 (1-2) .. . . Lymph Node Invasion: 0 (0-0) So your 67% isn't bad. You might try the s Hopkins site, and see if their numbers are different. There's also a good set of nomograms on the MSKCC website: http://www.mskcc.org/mskcc/html/10088.cfm The catheter I had in, for three weeks after surgery, was certainly not a friend. It hurt, and it gave me bladder spasms. And I suspect that it scarred my urethra and made it close up, months later. But the catheters that I insert every other day, to avoid another urinary stricture, are definitely " on my side " . As you say (in another post), it's important to deal with your current situation. The most important thing I learned from my local support group is: .. . . " I have prostate cancer " is _not_ the same as " I'm dying " . You have time to think and consider the options carefully. Another uro's opinion would be worth having. Hardly any doctor will say: .. . " _I_ did a bad job " , but some doctors are willing to say: .. . " I would have done it differently " and work on fixing the problem. > > : > > Good observations all. But I'm confused about the Partin. I was told that > it's never higher than 80%, so I thought I was on pretty solid ground with > 67%. Not so? > > The catheter, in my mind, is the enemy, especially after what I've been > through. > > I just got off the phone with an old friend who went through brachytherapy 7 > years ago, actually the person who predisposed me to brachy. He pointed out > that I'm focused on the wrong problem, cancer vs. quality of life, and I > wonder how many of us that applies to. We're scared to death of " The Big C " > and just want it out or gone at all costs, whereas we can go through a > botched procedure like I've apparently gone through (TUMP) and still stay > focused on the radiation/RP/whatever to cure the cancer and not the damage > done by the botched procedure. I'm guilty of staying focused on the ultimate > step and unfocused on the fact that my quality of life is zero now and may > not get any better. Time for a new urologist and/or oncologist. > > > > Crap shoot indeed. And the " house " seems to have a huge advantage. > > > > Tom Lauterback > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Also interesting, using the MSKCC nomogram, I get 87% probability of organ confined disease in the current model, but only 67% probability in the historical model, probably where my urologist got the 67% he reported to me. Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of cpcohen1945 Sent: Tuesday, August 11, 2009 9:43 AM To: ProstateCancerSupport Subject: Re: Reality Check Tom -- I've just checked my numbers (PSA 8.0, Gleason 3+3, T1c) on this site from s Hopkins: http://urology.jhu.edu/prostate/partintables.php which has " 2001 " Partin tables, and I get: .. . . Organ confined: 81 (79-83) .. . . Extraprostatic extension: 18 (16-19) .. . . Seminal Vesicle Invasion: 1 (1-2) .. . . Lymph Node Invasion: 0 (0-0) So your 67% isn't bad. You might try the s Hopkins site, and see if their numbers are different. There's also a good set of nomograms on the MSKCC website: http://www.mskcc.org/mskcc/html/10088.cfm The catheter I had in, for three weeks after surgery, was certainly not a friend. It hurt, and it gave me bladder spasms. And I suspect that it scarred my urethra and made it close up, months later. But the catheters that I insert every other day, to avoid another urinary stricture, are definitely " on my side " . As you say (in another post), it's important to deal with your current situation. The most important thing I learned from my local support group is: .. . . " I have prostate cancer " is _not_ the same as " I'm dying " . You have time to think and consider the options carefully. Another uro's opinion would be worth having. Hardly any doctor will say: .. . " _I_ did a bad job " , but some doctors are willing to say: .. . " I would have done it differently " and work on fixing the problem. > > : > > Good observations all. But I'm confused about the Partin. I was told that > it's never higher than 80%, so I thought I was on pretty solid ground with > 67%. Not so? > > The catheter, in my mind, is the enemy, especially after what I've been > through. > > I just got off the phone with an old friend who went through brachytherapy 7 > years ago, actually the person who predisposed me to brachy. He pointed out > that I'm focused on the wrong problem, cancer vs. quality of life, and I > wonder how many of us that applies to. We're scared to death of " The Big C " > and just want it out or gone at all costs, whereas we can go through a > botched procedure like I've apparently gone through (TUMP) and still stay > focused on the radiation/RP/whatever to cure the cancer and not the damage > done by the botched procedure. I'm guilty of staying focused on the ultimate > step and unfocused on the fact that my quality of life is zero now and may > not get any better. Time for a new urologist and/or oncologist. > > > > Crap shoot indeed. And the " house " seems to have a huge advantage. > > > > Tom Lauterback > > > Quote Link to comment Share on other sites More sharing options...
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