Medical Forum / Diseases and Disorders / Prostate Cancer / March 2005
The big question
|
|
Thread rating:  |
Me - 09 Mar 2005 04:54 GMT I would imagine this is probably one of the biggest questions on this group but I 'm gonna ask again. I'm 54, last week had biopsyies PSA is 4.1 , 3+3 and T1c. The surgeon and my gut feeling says cut it out, be gone with it (BTW is that what RRP is)? The radiation guy says my chances are about 90% of no re-occurance IRREGARDLESS OF WHICH METHOD. He says remove it, bombard it or needle radiate it, none of it matters, its all the same in 10 years. So why (he says) why perform that horribly evasive surgery for an identical long range outcome. I start to wonder the same thing myself. The surgeon can exam cells on a removed gland to tell much better just how far the the cancer has advanced, but I wonder, so what! Its too dang late by then, the organs gone right?
I'd love to be rid of the offender. Lack of sex won't kill me. Incontinance is nothing I'm looking forward to but the radiation sounds so unevasive and easy, why would anyone even remotely consider anything else??
Thats my question. Obviously someone favors surgury, or else no one would do it.
Thanks again all who have taken the time to rehash the same ole thing.
Mike
I. P. Freely - 09 Mar 2005 05:53 GMT All the treatments, including radiation, have side effects. Each person will get his own mix of SEs from each treatment's menu. Each perons has his own tolerance for the various SEs. Some treatments' SEs hit immediately and get better with time. Others' SEs start easy and get worse over the years. Some disease scenarios allow several valid choices, others pretty much dictate one treatment. The only initial treatment PROVEN to save lives is surgery. Radiation is improving rapidly, but so is surgery. You need to read several PC books and countless websites to make sense of it all and make your choice..
I.P.
>I would imagine this is probably one of the biggest questions on this group >but I 'm gonna ask again. I'm 54, last week had biopsyies PSA is 4.1 , 3+3 [quoted text clipped - 15 lines] > Thats my question. Obviously someone favors surgury, or else no one would > do it. ckh - 09 Mar 2005 10:59 GMT > I would imagine this is probably one of the biggest questions on this group > but I 'm gonna ask again. I'm 54, last week had biopsyies PSA is 4.1 , 3+3 [quoted text clipped - 16 lines] > > Thanks again all who have taken the time to rehash the same ole thing. good morning Mike,
I took the three-fold path, sometimes called the Rudy Gulliani treatment.
Lupron, External Beam Radiation, then Palladium-103 seeds. There's no long term historic data because the technology is changing so fast.
For example, my books mention external beam, 3D-CRT as a new technology and IMRT as a "future" technology and the next big thing.
I was diagnosed in early 2004. My copy of "Prostate Cancer for Dummies" Lange is (C) 2003.
This book says,
"One new approach is three-dimensional conformal therapy where computers aim extremely targeted beams of radiation at your prostate from different directions, all at the same time."
Lange uses a "Star Trek" metaphor and continues,
"These combined beams can be aimed at the prostate more accurately than the beam used in regular EBRT, so the risk of damaging healthy tissues is lower, and additional radiation can be given more safely.
After Lange discusses 3D-CRT, in one paragraph he says about IMRT,
"Intensity modulated radiotherapy (IMRT) is an even newer form of aiming beams in EBRT. ... This aiming modification (which requires sophisticated computers) helps target higher doses of radiation to the prostate without damaging surrounding organs."
This gave me the impression that IMRT might be available in the future. After all, it's newer than the new approach, 3D-CRT.
Not so.
The Inova Cancer Center used a computer driven IMRT on me. As a software engineer (programmer), I appreciated their command room with its banks of monitors. I snuck a look at the displays. They are practicing 21st Century medicine.
Inova was de-installing their 3D-CRT machine last fall. My rad-doc mentioned that he was eager to upgrade and bring the newest, best technology to his patients.
The (C) 2003 Dummies book calls 3D-CRT "new", Inova was deinstalling it in 2004.
The book gives one paragraph to IMRT as newer than new. Inova used IMRT on me.
This is a slow growing disease. It can take 5, 10 years for the results to be known. The "old" radiation treatments worked well enough to be competitive with surgery and the side effects were relatively mild, affecting a small percentage of patients.
Some rad-patients did suffer serious side effects to the point of requiring colon bypass surgery. Inova said that they have not seen that in the last 10 years.
The problem with the books and studies is this. By the time the studies are done. By the time the books are written and printed, the technology has moved on.
Not one generation but two or more.
So we have "not quite accurate" information in the books and "not quite current information" passed around the Internet.
I'm a recovering rad patient and took the 3 phased approach, 8 months of Lupron, 25 EBRT/IMRT treatments, followed by 97 Palladium-103 seeds.
At 3 and 5.5 months post treatment, I clocked two < 0.1 PSA scores.
While there is no guarentee in life and no one knows what the long term prospects are for the three phase treatment plan, MY opinion is that this is a better approach than the alternatives.
Again, MY opinion. When surgical patients describe their incontenance, groin pain, erectal dysfunction, lengthy recovery, and then recommend surgery as "better", I wonder if it's not cognitive dissonance talking.
"I made this choice, therefore, it must be the right one."
and
"I chose the pain and these side effects, therefore, they must be OK."
I'm not advocating for Rad, and I'm certainly not happy about the Lupron. MY opinion is that Lupron is a deal-with-the-devil.
I blame Lupron for most of my fatigue, ED, joint pain, the low libedo, confusion, hot flashes, diabetes. I've lost upper body strength and can see a fat-band on my tummy.
I can't complain though, as Lupron drove my PSA from 10+ to 1.3, this was pre-IMRT. It also seems to be making hair grow on my head.
I had side effects from the rad, fatigue, getting up 2 and 3 times a night to pee. For the first month post-seeding, I was dosed with Decadron and other pills to keep the flow going.
5 months later, there is still some stinging and I still get up once a night. This week was the first time I felt that I had enough stamina to go on a 1 hour walk up the hills in my neighborhood.
That's my story and MY opinion. It might be worse or better for you.
Mike, whatever you decide, it's your choice. Odds are that you will be "cured" and will have a long, quality life.
Leonard Evens - 09 Mar 2005 15:24 GMT > Again, MY opinion. When surgical patients describe their > incontenance, groin pain, erectal dysfunction, lengthy recovery, and [quoted text clipped - 7 lines] > "I chose the pain and these side effects, therefore, they must be > OK." You point has some validity, but in my case at least, I think I can be relatively objective. My urologist suggested either surgery or radiation as appropriate for a man my age with my particular diagnosis (age 67, T1c, PSA 4.5, Gleason 7=3+4). At my age, as best I could tell, it was really a toss-up. I had several reasons for choosing surgery, some rational and other based on my gut feelings. On the rational side, I learned that the likelihood of bowel problems was higher for radiation, while for a man my age, the likelihood of impotence was higher with surgery. (For a younger man, impotence after surgery would be less likely.) I figured that bowel problems or impotence could be treated, but bowel problems would impact more on my daily life. I also felt the long term prospects after surgery were better understood at the time than those after radiation. On the less rational side, I was one of those who wanted to know the status of my cancer through post-surgical pathology. The greater undertainty following radiation would have been difficult for me to live with. finally, I've always had something of a fear of radiation. Radiation can itself cause cancer, including leukemia, which my father died of relatively young. (In fact, in his case, the most likely cause, if any can be ascribed, was smoking.) I had had several surgeries before, including one for a pilonoidal cyst when I was 16. So I didn't find surgery particularly frightening. I've had dental surgery tha was more painful overall, and a herniated disk I had in 1995 had a much greater effect on my life than my prostate surgery.
I chose surgery, but had I been 5 years older, I probably would have chosen radiation for a variety of reasons I won't go into here.
So I don't find any cognitive dissonance there. A lot of people fear surgery for irrational reasons without looking at it objectively. It may or may not be the best way to proceed but one shouldn't reject it out of hand.
> I'm not advocating for Rad, and I'm certainly not happy about > the Lupron. MY opinion is that Lupron is a deal-with-the-devil. [quoted text clipped - 13 lines] > a night. This week was the first time I felt that I had enough > stamina to go on a 1 hour walk up the hills in my neighborhood. 5 months after my surgery I had been back to normal in all respects except erections for over 3 months. I was impotent for 18 months, but my wife and I managed a relatively normal sex life by use of a pump. My prospect for potency after radiation were not too much better than after surgery.
> That's my story and MY opinion. It might be worse or better for > you. > > Mike, whatever you decide, it's your choice. Odds are that you will > be "cured" and will have a long, quality life. Wayne Fulton - 10 Mar 2005 17:06 GMT >You point has some validity, but in my case at least, I think I can be >relatively objective. My urologist suggested either surgery or [quoted text clipped - 28 lines] >may or may not be the best way to proceed but one shouldn't reject it >out of hand. Thank you Leonard. I appreciate all your comments here, but the similarity with my own thinking rang a bell this time. I want it out by direct action, and I want to know what actually happened in there.
I made the decision Tuesday, and surgery is scheduled in 3 weeks. I'm scared of the effects of surgery, and I know long term results are still vague, but I was more scared of the other possibilities, of shotgunning without really knowing what was there, and what was actually done to it. I'm sure my view is extremely uneducated, but nevertheless, there it is.
I am 66, and PSA 4.3 sent me to urologist. Then another PSA 4 with free PSA 19 triggered biopsy. Gleason 6=3,3. Only 1 of 12 biopsy samples was positive, so the two values 3,3 isnt clear to me, I suppose the same one area. But the really good news in all this is that early detection does seem quite effective, and really amazing, and seemingly offers a really good chance. Certainly the situation could be much worse.
My father died at age 54 of some cancer that had spread to bone all over. He only lasted four months after first symptoms of pain in his arm. That was 1960 and I dont know the cause, if it was prostate or something else. My sister recently died at 74 of breast cancer. And I've already had thyroid cancer (which if you must have one, it's a good one to choose, it was easy if detected early).
The urologist carefully explained all the choices and the possibilities. I'd never seen such careful unbiasedness. :) Then he sent me off to read a few prostate books first. I think I understand the situation now, but I still feel the least qualified to specify a treatment. I have wondered if it was rational to choose surgery when there were easier methods with similar results. But I have this overwhelming urge to get it out of there.
Wayne
I. P. Freely - 10 Mar 2005 22:11 GMT Easier? They all have downsides, which is why a doc can't/shouldn't dictate a solution. "Similar results"? Not yet proven, unless "similar results" includes "5, maybe 10, year survival") There are too many personal criteria and priorities for the doc to decide unless the case dictates one answer. Right or wrong, I refused my surgeon's advice for post-RP ADT, but I did it by presenting my case in writing to him and the university/VA joint surgery/oncology/urology/endocrinology staff and asking for their feedback. It was three pages of intense, condensed, abbreviated medical facts, trials results, personal criteria, and druthers, discussed by a roomful of specialists on multiple occasions. Result? Not only not one single disagreement, correction, or objection, but several of them said it revealed PC and patient insights they hadn't thought of before.
Where did it come from? Reading the same books you did, carousing PC websites, asking lots of questions right here, and shooting my mouth off a lot here. The latter helps me because I try to be very accurate in what I say here, which requires study, and because incorrect statements get prompt attention from several highly knowledgeable people here who are way ahead of me in years and in the depth of their knowledge.
Once you do understand all sides of the medical issues at the level available from these sources, and have carefully evaluated and listed your (And your family's) criteria and priorities, there is usually no one better qualified than YOU to choose a treatment, especially a first treatment. The exception, and it's common, is people who make decisions based on emotion rather than facts, criteria, and analysis. They're screwed unless they a) get lucky or b) just listen to their medical oncologist, surgeon, AND radiation oncologist.
How about it: are you a right-brain or left-brain type? Do you decide based on emotions or analysis? You sound like the latter, as am I.
I.P.
> I want it out by direct action, > and I want to know what actually happened in there. [quoted text clipped - 35 lines] > > Wayne Wayne Fulton - 11 Mar 2005 05:20 GMT >How about it: are you a right-brain or left-brain type? Do you decide based >on emotions or analysis? You sound like the latter, as am I. Probably left, because I would worry how to answer that question accurately, and I'd wonder if it was science? :)
But I'm not able to compose wise rationalizations about the choice of surgery, so this time may be more emotional. I have read half a dozen books, and of course that greatly helps understanding, but it's still a tough decision.
My urologist says any choice could be correct and appropriate for me, hinting that I'm getting to be an old geezer. I am at an awkward age, 66, and the decision would seem more clear if ten years younger or older. He hid his opinion very well, but if any one suggestion stood out to me, maybe it was for freezing. Which does sound more appealing than radiation, except for even less statistics of long term results. After the biopsy, my internalist that sent me to the urologist was not shy in saying "it has to come out". Seems that way to me too.
I'm plenty scared of surgery, at least about the results, but something must be done, and I liked the alternatives less, as seeming to me possibly less complete in regard to the actual cancer. Side effects are a problem, but cancer is THE problem. And since my PC case appears to be in an early stage, then I dont want to miss my best chance to possibly completely cure it. And to actually get it out and look at it, hopefully to be assured of the success that the statistics imply. I do understand many things can still happen, but it seems best try, at least in my mind. If I do get as far into the future as I plan, I dont want to discover I still have a problem that could have been solved.
I know many others have other opinions, and I hope we are all right.
Steve Kramer - 11 Mar 2005 15:53 GMT Wayne,
We are all sorry to see you have come into our little club. However, most of us would congratulate you on having made an informed decision. I would highly recommend you waste no time on reflection.
Also, do not fear the surgery. You will find that the surgery itself is conducted while you are sound asleep and you will awaken with the extraordinary realization that it doesn't hurt! A month from your surgery, you will look back and realize the bowel cleansing the night before and the catheter are the larger irritations you experienced.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 Seminal Vesicle involvement, 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
> >How about it: are you a right-brain or left-brain type? Do you decide based > >on emotions or analysis? You sound like the latter, as am I. [quoted text clipped - 27 lines] > > I know many others have other opinions, and I hope we are all right. Wayne Fulton - 11 Mar 2005 17:40 GMT >We are all sorry to see you have come into our little club. However, most >of us would congratulate you on having made an informed decision. I would [quoted text clipped - 5 lines] >you will look back and realize the bowel cleansing the night before and the >catheter are the larger irritations you experienced. Thanks Steve. Right, I'm not looking forward to those either. :) But said that way, it seems more bearable. I've had other surgeries, more minor and no big deal really. This one sounds rougher, but I dread the possible side effects more than the actual operation. Nevertheless, it is still great that there is a solution, and the odds are it will turn out great too. I wish I could just get it over with, but the surgery is still more than 2 weeks away, waiting for biopsy healing first I think.
I know I wont be lifting things or mowing the yard for a couple of months, but it isnt clear yet what I can expect the first day home. I've heard I'll be sleeping a lot, but I've also heard up and moving around, to the extent of beginning longer outdoor walks real soon, but not sure how soon?
So I am assuming that it will be reasonable to plan on ten minutes of computer work starting on that first day home? I have to sit somewhere, right? But I've heard sitting is an early issue too.
James A Honeychuck - 11 Mar 2005 18:00 GMT Wayne,
Well are you having standard RRP or laparascopic? (If you already said, sorry I missed it.)
jimhoney standard RRP age 52, cured, no significant aftereffects
>>We are all sorry to see you have come into our little club. However, most >>of us would congratulate you on having made an informed decision. I would [quoted text clipped - 22 lines] > computer work starting on that first day home? I have to sit somewhere, > right? But I've heard sitting is an early issue too. Wayne Fulton - 11 Mar 2005 18:42 GMT >Well are you having standard RRP or laparascopic? (If you already said, >sorry I missed it.) Sorry, I assumed I guess. I should have said, it is the standard RRP.
Steve Kramer - 11 Mar 2005 19:32 GMT > I know I wont be lifting things or mowing the yard for a couple of months, > but it isnt clear yet what I can expect the first day home. I've heard I'll [quoted text clipped - 4 lines] > computer work starting on that first day home? I have to sit somewhere, > right? But I've heard sitting is an early issue too. I planned ahead to have a long recovery. I bought a new Lazy Boy recliner. I set up a table on either side of it for my laptop and some historical references and a couple of novels. I figured I'd be sitting long hours and I was doing a historical website for my company at the time.
In reality, I came home, sat in the chair, absorbed the adoration of my wife and children and watched a DVD on the new DVD player they had bought me. I went to bed early with a low grade fever and felt drained.
The next day, Christmas Eve, I took two naps and my whole family came over; mom, 5 brothers and sisters, their families (if applicable) and my wife and children. I was tired, but, considering what I'd been through, it was the most special Christmas of my life.
In less than a week, I was down to only one nap each day. I had it with sitting and typing and watching T.V. I went downstairs to my workroom and putzed around.
January 2, I had the catheter removed. Starting January 3, I was driving to the gym every morning, walking two miles on the treadmill.
By Week 4, I was craving to get back work. But, my doc said 6 weeks and, to be honest, I was a little worried about wearing diapers to work.
On the 6th day of the 5th week, I graduated to pads and my doc let me go back to work.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 Seminal Vesicle involvement, 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
Wayne Fulton - 11 Mar 2005 22:30 GMT Thanks Steve, I really enjoyed hearing that account. Encouraging, and maybe it wont be so bad, Driving and walking 2 miles in a week sounds really good. Sounds like there were not so many limitations. I have a recliner, and the wife has a treadmill, so maybe I'm all set. I'm pretty naive however, is that recliner just for ordinary rest purposes, or is it specifically about sitting upright being a problem that early? I've heard of the invalid pillow, I assume doughnut shape, so I assume there is an early problem sitting on the surgery. A short time I hope?
For a few weeks of this experience, I'm hoping to grin and bear it.
It appears I'll need a log book too.
James A Honeychuck - 12 Mar 2005 00:22 GMT I was told no driving for 30 days. Not sure why.
I followed some guidance I read somewhere which said take two walks a day, and the more you let people do things for you, the longer your recovery takes. I was home alone the whole time.
You won't need a special pillow. You can't sit for too long because the catheter presses against the pubic bone. That's a good reminder to get up and move around.
jimhoney
> Thanks Steve, I really enjoyed hearing that account. Encouraging, and maybe > it wont be so bad, Driving and walking 2 miles in a week sounds really [quoted text clipped - 8 lines] > > It appears I'll need a log book too. I. P. Freely - 12 Mar 2005 07:25 GMT I never perceived that, not in my 220-mile ride home from the hospital and not on wooden chairs.
I.P.
> You can't sit for too long because the catheter presses against the pubic > bone. That's a good reminder to get up and move around. I. P. Freely - 12 Mar 2005 07:23 GMT Sitting bolt upright on any chair (uhh, I didn't try a bicycle) was completely comfortable to me long before I left the hospital. No donuts, no recliners, no special pillows, no padded toilet seats, no assistance required with anything from bedtime to shower time to toilet to stairs to meals to picking up a dropped sock from the floor past about post-op Day 4 or 5 . . .getting in and out of the car or van by Day 7 . . . it just wasn't a big deal as long as I didn't rush anything. A badly sprained ankle hurts literally 10 times as much and maybe 10 times as long. The bag itself is zero problem; its problem is the catheter, right where it comes out, and that's an irritating nuisance at most as long as it doesn't get really inflamed. I was walking right past healthy people within a week, until the catheter aggravation said, "What the hell are you DOING? The dang thing comes out in a few days . . . back off and give it a rest." Driving? Not safe until our body is willing to slam on the brakes without any hesitation; weeks, my docs have always said after any kind of trauma or injury involving legs or torso.
If your sex or continence parts are cancerous, you'd better HOPE any treatment you choose destroys those parts. If they're not, RP or RT usually preserves those functions. The SEs of either of those treatments don't even begin to compare to the SEs of the ADT often prescribed with RT, sometimes with RP. After all, ADT SEs START with guaranteeing not only no intercourse, but no INTEREST in sex, and go downhill from there as the months and the SEs stack up.
I.P.
> Thanks Steve, I really enjoyed hearing that account. Encouraging, and > maybe [quoted text clipped - 10 lines] > > It appears I'll need a log book too. Wayne Fulton - 12 Mar 2005 15:03 GMT Thanks guys, it sounds like the recliner/pillow issue wont be much issue then, although I'd guess all cases vary some.
I only had a catheter one time 20 years ago, for 2 or 3 days while I was in a hospital bed, and I still remember that I really wanted it out. I feel sure I'm going to get much better acquainted now. Surgery is going to be an adventure, but anything sounds much better than cancer.
Steve Kramer - 12 Mar 2005 07:28 GMT I needed no invalid pillow. I was most comfortable in a half reclined position. But then, I've always been most comfortable in the half reclined position.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 Seminal Vesicle involvement, 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
> Thanks Steve, I really enjoyed hearing that account. Encouraging, and maybe > it wont be so bad, Driving and walking 2 miles in a week sounds really [quoted text clipped - 8 lines] > > It appears I'll need a log book too. I. P. Freely - 12 Mar 2005 06:44 GMT I was taking hikes around the hospital grounds 4-5 days post-op, and my PC surgery also included donating three feet of colon to the cause. I was doing crunches at 6 weeks. I found sitting supremely comfortable after a few days of 20 hours a day in the sack (because of the dual surgery); the real problem with computer work would have been my morphine though about Day 5-6 -- it REALLY messes with your head. I never had any pain (that's what the drugs are for). I forgot about the surgery by the 6-week point, when the docs said "You're healed; raise hell! Mow the lawn, hit the Bowflex, go dancing". Anyone still tired 5 months after surgery is probably reacting to the anesthesia. I deliberately slept 10 hours a night until I began waking up after 8 hours --- maybe 10 days to 2 weeks post-op, just to aid the healing process.
I.P.
"Wayne Fulton" <nospam@invalid.com> wrote >
> I know I wont be lifting things or mowing the yard for a couple of months, > but it isnt clear yet what I can expect the first day home. I've heard [quoted text clipped - 5 lines] > computer work starting on that first day home? I have to sit somewhere, > right? But I've heard sitting is an early issue too. I. P. Freely - 09 Mar 2005 18:01 GMT > For example, my books mention external beam, 3D-CRT as a new > technology and IMRT as a "future" technology and the next big thing. [quoted text clipped - 6 lines] > This gave me the impression that IMRT might be available in the > future. After all, it's newer than the new approach, 3D-CRT. How do present-tense verbs imply "IMRT might be available in the future"? In fact, the UW/VA team that collectively wrote "Dummies" is a leading center of RT development and a Designated Teaching Hospital in that field. IMRT is also available four miles from my home in my town of 40,000 people in a regional community of 150,000, but its chief radiation oncologist advised me to get surgery instead because the likelihoods of long-term bowel problems were incompatible with my active lifestyle and my stated aversion to chronic bowel problems.
> The "old" radiation treatments worked well > enough to be competitive with surgery and the side effects were > relatively mild, affecting a small percentage of patients. If I were among the 47% of pts who have bowel problems two years post-RT, I wouldn't say they were "mild" or "a small percentage".
> The problem with the books and studies is this. By the time the > studies are done. By the time the books are written and printed, > the technology has moved on. > So we have "not quite accurate" information in the books and "not > quite current information" passed around the Internet. Yup . . . but clinical proof also lags technology by many years, and very often a pt's choices are between new technology and proven technology, a legitmate debate with many personal considerations. Since it takes 10 years to prove survival efficacy and 15 to address the PC mortality surge, chosing between new technology and proven technology is another example of the Hobb's choice that's been around for centuries.
> MY opinion is that [my RT/ADT approach] is a better approach than the > alternatives. That's both anecdotal and highly personal. I don't think many people would be well advised to base a decision on any anecdotal scenario.
> When surgical patients describe their > incontenance, groin pain, erectal dysfunction, lengthy recovery, and > then recommend surgery as "better", I wonder if it's not cognitive > dissonance talking.
> I blame Lupron for most of my fatigue, ED, joint pain, the low > libedo, confusion, hot flashes, diabetes. I've lost upper body > strength and can see a fat-band on my tummy. I've not seen anyone say their approach is "better", or "I made this choice, therefore, it must be the right one", or "I chose the pain and these side effects, therefore, they must be OK." without adding, "in my circumstances and by my criteria". So these claims you cite have eluded my server.
Not only have I experienced none of your SEs other than ED due to cancer having invaded one of my neurovascular bundles, but 1. I consider your SEs FAR worse than any of the effects of my surgery, 2. Yours may get worse as my SEs get better, and 3. I've never recommended surgery to anyone.
> 5 months later . . . was the first time I felt that I had enough > stamina to go on a 1 hour walk up the hills in my neighborhood. I felt ready and eager to play football a month post-op, and was approved to do so at 6 weeks.
So, Mike, you have a TON of reading ahead of you. This is the most complicated decision you will ever face, and you should let neither ckh's nor my anecdotal circumstances contribute too much to your decision.
I.P.
keith340@webtv.net - 09 Mar 2005 11:43 GMT Hello Mike....I can't speak for the surgery...but call 1800 PROTONS for the info package as well as taking a look at www.llu.edu/proton/....you will be pleased at what you discover...Good Luck!!!
Keith Lundy/So. California 40 Proton Beam Radiation Treatments Loma Linda Univ.Med Ctr..3/03-5/03
Steve Kramer - 09 Mar 2005 14:52 GMT I don't usually correct grammar. And I let the "irrregardless" pass without comment, but you really need to know that "evasive" is tending to shy away from something. You mean "invasive". I point this out because while RRP is indeed invasive, radiation can be said to be evasive -- evading RRP.
You are absolutely correct that this is an oft-asked question. If you were less than 50-years-old, you would get almost no support here for radiation. 54 (just turned 54?) puts you right on the border of "no other alternative" and "the whole gamut of alternatives from which to choose."
The reason I like RP is that the cancer is out. Period. You don't have to rely on the unseen. It's pulled, it's biopsied and if you're a Gleason 6 and no cancer cells are in the margins, you have a reasonably good chance of dying from something else. With radiation, you just never have the comfort level.
I don't think the SEs are much different either in the short term, but radiation can be a cell-destroyer down the road.
Then, you add two developments; robotic laproscopic radical prostatectomy (RLRP) is much less invasive and potentially much more accurate in the cuts being made. But, IMRT is much more accurate in where the destructive radiation is going.
As to your docs; surgeons like surgery. Radiologists like radiation. At your age and with your numbers, if it were me (and I mean only if it were me), I'd select surgery.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 Seminal Vesicle involvement, 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
> I would imagine this is probably one of the biggest questions on this group > but I 'm gonna ask again. I'm 54, last week had biopsyies PSA is 4.1 , 3+3 [quoted text clipped - 18 lines] > > Mike James A Honeychuck - 09 Mar 2005 17:42 GMT I took that as a classic Freudian slip.
If the original poster wants to avoid surgery, then of course his chances are about the same with radiation or surgery.
But I don't like medical situations of any kind, and I wanted a one-time cure. That's what I got with surgery. Steve and makingprogress have both said it better than I can.
jimhoney standard (big incision) RRP age 52, cured, no significant aftereffects
> I don't usually correct grammar. And I let the "irrregardless" pass without > comment, but you really need to know that "evasive" is tending to shy away [quoted text clipped - 23 lines] > your age and with your numbers, if it were me (and I mean only if it were > me), I'd select surgery. Leonard Evens - 09 Mar 2005 15:04 GMT > I would imagine this is probably one of the biggest questions on this group > but I 'm gonna ask again. I'm 54, last week had biopsyies PSA is 4.1 , 3+3 [quoted text clipped - 3 lines] > bombard it or needle radiate it, none of it matters, its all the same in 10 > years. In 10 years you will be 74. I presume you hope to live longer than that. So 10 years is not a long enough time horizon to look at. Unfortunately, although radiation and surgery seem roughly the same for cases like yours for about 10 years (or a little more), there is not a lot of evidence comparing them for longer periods. The trouble is that in the 80s, radiation was not very effective because they had to keep the dose down to avoid damaging surrounding tissues. In the 90s, much more sophisticated methods were developed for focusing the radiation, and it is generally agreed that radiation, with increased doses, is very effective. It may turn out from longer term studies that it is as good as surgery, but all the data isn't in yet. Maybe in 5 to 10 years, all this will be much clearer, but unfortunately you have to decide now.
One thing to keep in mind is that surgery results are more dependent on the skill of the practitioner than radiation results. For example, highly qualified surgeons can maintain potency in men your age in the vast majority of cases without compromising their ability to remove all the cancer. But a less skilled surgeon will have to take out more tissue to be sure he got all the cancer and may not do as well with respect to potency.
Keep in mind that a lot depends on age. Thus, older men may often do better with radiation. So make sure you base your decision on what is likely to happen to men your age with cases similar to yours with the doctors you have available.
> So why (he says) why perform that horribly evasive surgery for an > identical long range outcome. I start to wonder the same thing myself. The > surgeon can exam cells on a removed gland to tell much better just how far > the the cancer has advanced, but I wonder, so what! Its too dang late by > then, the organs gone right? You should ignore advice of this kind trying to push one therapy over another. Of course, each doctor is biased towards thinking what he does is the best way. Surgery is certainly more invasive than radiation, but calling it "horribly invasive" is perhaps an exaggeration, particularly for a man your age. Abdominal surgery is always very serious, but as such things go, I do think, from my experience, that radical prostatectomy is relatively straightforward. The difficult part is making sure all the cancer was taken out and that nerves controlling erections not be damaged any more than absolutely necessary.
> I'd love to be rid of the offender. Lack of sex won't kill me. Incontinance > is nothing I'm looking forward to but the radiation sounds so unevasive and > easy, why would anyone even remotely consider anything else?? You are dwelling on the incision. Each kind of therapy has is own side effects, and while it is hard to compare them directly, they are roughly similar. The point is that for the therapy to be effective, the prostate gland has to be largely destroyed, and that is bound to have a significant effect.
> Thats my question. Obviously someone favors surgury, or else no one would > do it. You really have to take a hard look at the typical side effects of each procedure for a man your age. Don't let words or frightful images of cutting influence you. Be as objective as you can be and try to add up the real life differences as they might apply to someone else. You may still find that in your gut, surgery scares you and radiation doesn't as much. In that case, you might decide to choose radiation, but you will at least understand all the issues.
> Thanks again all who have taken the time to rehash the same ole thing. > > Mike ron - 09 Mar 2005 15:58 GMT Hi Mike...Psychological factors, along with treatment efficacy and morbidity considerations, certainly play a role in treatment selection. Some men don't want to be "cut", some men don't want to be irradiated, and some men want it "out." These feelings get factored into your making a decision that you are comfortable with.
While there are many published studies that claim surgery and various forms of XBRT have similar outcomes over time, these studies use different measures of disease freedom to assess treatment outcome, typically ASTRO for the RT approaches and PSA > 0.2 ng/ml for surgery. An equal number of papers have been published showing that using different measures of freedom from disease skews the analysis and prevents meaningful comparisons of treatment efficacy from being made. One case were a valid apples to apples comparison can be made is between surgery and [seeds + RT]. Here, both treatments use PSA > 0.2 ng/ml as their definition of disease recurrence. Analysis of the comparative data for these two treatment modalities suggests that, for men with your stats ("low-risk" men), biochemical freedom from disease at 10 years is equivalent.
One other factor to consider in your decision making process, and part of what shifts the RT / RP ratio towards RP for younger men is the small, but real, incidence of secondary cancers resulting from RT. Since secondary cancers typically take 10-20 years to manifest themselves, you can see why younger men might be more influenced. There is a good paper documenting this effect ("Second malignancies in prostate carcinoma patients after radiotherapy compared with surgery", David J. Brenner, D.Sc. 1 *, Rochelle E. Curtis, M.A. 2, Eric J. Hall, D.Sc. 1, Elaine Ron, Ph.D., Cancer 2000;88:398-406) and they find the odds of a secondary cancer are around 1 in 70 at 10 years post-RT. BTW, the authors comment upon the effect of more focused beams over time upon secondary cancers and note that as beams become better focused, beam intensity is usually increased. They therefor speculate that the rate of secondary cancers would remain about the same. Other rad oncs that I have spoken to about secondary cancers say the probabilities are in the 3-5% range; again just something you should be aware of given your age...Best wishes and good health, Ron
makingprogress - 09 Mar 2005 16:45 GMT Hi, my husband had a robotic laparoscopic radical prostatectomy 7 weeks ago. He's 59 and diabetic. His PSA was 6.2, he had a Gleason of 3+3, level T2a no seminal vesicle involvement, and negative margins. His tumor was 30% of the right side of his prostate. After a few problems in the first couple of weeks he is doing well. No incontinence, and potency is returning. He is still not 100% as far as energy levels go, but that is getting better, too. Right now if he had to do it all over again, he would still choose surgery. We actually feel fortunate that it was caught now, and removed. For us, the "seeds", and other choices were not controllable enough. I hope this helps you with your decision, and good luck, whatever your choice.
makingprogress - 09 Mar 2005 19:22 GMT I had a PSA of 6.3,a Gleason of 6,and a 1/12 positive biopsy. 3 of my uncles had PC. One had it removed and is fine at 81. 2nd had radiation and it has returned at 79. 3rd seeds at 72. At 59 I chose surgery. The cancer was contained in the prostate 30% of right side. Cancer was T-1 on 1st biopsy T-2 on 2nd . The doc said the chances are good that I won't need anything done later. PSA now undetectable. Weigh your choices, research, and ask many questions of your Dr. Good Luck!
Dave LaCourse - 09 Mar 2005 22:49 GMT >I'd love to be rid of the offender. Lack of sex won't kill me. Incontinance >is nothing I'm looking forward to but the radiation sounds so unevasive and [quoted text clipped - 4 lines] > >Thanks again all who have taken the time to rehash the same ole thing. Why should you worry about lack of sex or incontinance? Today's surgical procedures, if done by a qualified doc, practically guarantee little effect in these areas.
I had an RRP more than 8 years ago at age 59. I've had no problems with incontinance, but my sex life suffered for several months after the operation. However, with a good urologist, this too should be of little concern.
The most important thing is killing that tumor. My psa was a normal 3.4, while my Gleason was 9. The cancer was termed "lethally aggressive." It's gone now, dead, buried, while I live a happy life with my fantastic wife and family and have my psa checked every six months. It's 0.01 after 8 1/2 years.
The method is your decision. However, I know of no one that has had the surgery with re-occurance, while I have two (make that had) friends who went the radiation route and continued to fight the beast for years before dying.
It is an insidious and horrible desease, but it *can* be defeated.
Good luck, and please keep us posted.
Dave
I. P. Freely - 10 Mar 2005 02:59 GMT Unless the cancer has already reached the spots controlling continence and potence.
I.P.
"Dave LaCourse" <dplacourse@pirateaol.com> wrote >
> Why should you worry about lack of sex or incontinance? Today's > surgical procedures, if done by a qualified doc, practically guarantee > little effect in these areas. MH - 09 Mar 2005 23:16 GMT Hi, Mike...
I was 51 at the time of surgery. I looked at all the options and chose what was best *for me*. It was a big deal *for me* to get the cancer *out*! I knew I could have followup radiation if there was a recurrence... if I had started with radiation, I wouldn't have that option, and salvage surgery after radiation is *almost* unheard of. So for me it was surgery. I have no problems at all with incontinence. Erectile function is still a problem ... and I'm now 54. But my PSAs have been undetectable up til now.
I guess I would say to read, read, read... all that you can. Get several opinions. Talk to as many people as you can who have gone through various treatments. Then look at all your options and decide what YOU can be most comfortable with. At that point, go with it... and don't look back!
I wish you well!
MikeH
>I would imagine this is probably one of the biggest questions on this group >but I 'm gonna ask again. I'm 54, last week had biopsyies PSA is 4.1 , 3+3 [quoted text clipped - 19 lines] > > Mike dale.j. - 09 Mar 2005 23:19 GMT > I would imagine this is probably one of the biggest questions on this group > but I 'm gonna ask again. I'm 54, last week had biopsyies PSA is 4.1 , 3+3 [quoted text clipped - 18 lines] > > Mike In ten years you'll be only 64. You might want to ask what about beyond ten.
Dale j.
 Signature Email: dalej2@mac.com
Ron B - 10 Mar 2005 00:15 GMT I'm not posting just to "add posts" to the group total. :-)
I honestly wish that there were no need for this group at ALL...meaning no PC.
I'm to meet with my surgeon for the first time tomorrow and since I have decided that surgery is the way to go...
age 56, PSA 7.2 Biopsy T1c
Gleason 7=3+4
I'm wondering what kind of questions I can come up with.
I'm aware that as a surgeon, Dr. Catalona at Northwestern here in Chicago will strongly lean toward surgery, but after all my reading and research, I agree with that idea as well.
Thus my choice.
Yet, since I'm still scared of all of it, the PC, the anesthesia, the surgery, the after effects, the cath etc....I'm trying to think of some decent questions that aren't just fear based. (Those...I have plenty of
:-) Thanks for any help.
Ron B.
ron - 10 Mar 2005 01:08 GMT Ron B...An extensive list of potential questions can be found at http://www.prostate-help.org/caques2.htm Just pick the ones that are of interest to you...Best wishes and good health, Ron
MH - 10 Mar 2005 01:16 GMT Hi, Ron....
It's very normal to be anxious about all the things you mentioned. When I had my surgery back in 02, I had never had surgery before at age 51. So it was a frightening prospect. But by the time the day came, I was ready. I was much calmer than I expected. And afterwards, honestly, the recovery was NOTHING like I had imagined it to be. It was SO much easier than I had expected. I was up walking that evening... and during the night... and I was released to go home the next day. I had the cath a bit longer than most (about 3 weeks), but within about 6 weeks of having it removed I was dry. So I'm thankful for that.
Questions for your doctor? How long is the usual stay after surgery? How long does he normally wait before removing the catheter? Is there anything that he can recommend that will make the recovery faster/easier? What kind of therapy does he suggest post-op for the recovery of sexual function? Does he prescribe Viagra to be taken everyday for a period of three months post-op, as some docs do, to try to help encourage recovery of function? I'm sure there must be many other things on your mind that you would like answered. This is *your* surgery, so feel free to ask anything you like. Don't worry about how the question will be perceived. If it is on your mind, ask it!!
Take care.... and do keep us posted! I wish you well!
MikeH
> I'm not posting just to "add posts" to the group total. :-) > [quoted text clipped - 24 lines] > > Ron B. Ron B - 10 Mar 2005 01:43 GMT Thanks so much Ron and Mike.
That was a great list of questions. (I had it printed out but didn't even realize it).
Best to all,
Ron B.
anontoall@yahoo.com - 10 Mar 2005 05:33 GMT > (BTW is that what RRP is)? RRP is radical retropubic prostatectomy. Radical means they cut out some adjoining tissues, in particular the semincal vesicles. Retropubic means they cut in the front in the pubic region to get to the prostate in the back -- they used to cut thru the perineum but no longer do that because it means they cut all the nerves, I believe. Cutting in the front the way its done now means they can spare cutting the nerves that control erections.
Regarding choice I cannot tell you what to do. I can just tell you why I chose RRP over radiation. The side-effects (incontinence, ED (erectile dysfunction)) are probably the same, but with radiation they happen later rather than sooner. With RRP you may have ED immediately after but if they spare the nerves, erectile function may return when the nerves heal. With a great surgeon incontinence does not really happen that often. And the big one is, with RRP the cancer is out -- if your stage is T1c that means all the cancer is in the prostate and when they remove it, the cancer's removed. With radiation, the cancer is removed over time. To my thinking, that means it still has time to spread -- I'M NOT A DOC; I COULD BE WRONG; but that's the reason I decided on surgery.
anontoall@yahoo.com - 10 Mar 2005 05:39 GMT >in particular the semincal vesicles that's seminal
Jackie - 10 Mar 2005 10:41 GMT Just found out last month that I have prostate cancer. Went back the first of this month to my urologist and he gave me all the facts that he had gotten from the biopsy and my options which were about ten or so.
From the biopsy he told me that my Gleason was 6 (3+3) and that the cancer was on both sides of the gland. He showed me a graph of the cancer and how it would be inside the prostate but he emphasized that the core samples were very small and that his estimation that the cancer comprises about 5% of the total gland. I asked him if he thought the cancer had escaped the gland and he was very positive it had not given the Gleason score combined with a pre-biopsy psa of 3.3. I had had a biopsy with six core samples taken in Jan. 2003 that showed 'atypical cells' but was told that it was definitely not cancer at that time. My psa at that time was 2.7. Other events kept me from following up until this past month.
Since my oldest brother had prostate cancer and died in 2003 (along with my girlfriend whom I was a caregiver for as she fought and lost her battle with lung cancer) I decided that I wanted to have surgery instead of any of all the other options that he presented.
I have had an increasing problem with hip pain and my concern is that the cancer has spread but I am not sure if such pain would be from the cancer or from some problem with my back. When I mention this concern to my urologist he said that he believed that given my relatively low psa and the Gleason score he was confident that my pain was from my back.
I am 53 and suppose to have surgery on the 24th to remove my prostate. Given my psa and the Gleason score, assuming that it is correct, what is the likelihood that my hip pain has anything to do with the cancer? I know that no one can give a definite answer but I am really looking for some opinions on the likelihood that this could be the cause. Thanks.
(Jack)ie
ronju99 - 10 Mar 2005 12:17 GMT Mike, I think one of the most important questions of all that you could ask is who will (Really) be doing the surgery. Dr. Catalona or one of his interns. Often at teaching hospitals the expert supervises the intern that does the actual surgery and you have no way of really knowing who has there hands on you. One reason that this is important is because an intern probably will take longer to do the procedure, therefore you will be under anesthesia longer than necessary. The effects are not often mentioned, but they can have long term effects on your system so you want to get the procedure over as soon as possible to eliminate those side effects. That's why RRP has an advantage over LRP. I had LRP and was under 10 1/2hrs. and lost 5 pts. of blood. You never know what your perticular situation might be. They don't always turn out to be a piece of cake as some advertise.
Ron S
Ron B - 10 Mar 2005 13:47 GMT Hi Ron,
That's a good question.
I sure will ask.
Thanks,
Ron B.
Me - 10 Mar 2005 19:03 GMT 10 1/2 hours? Good God just when I started to finally lean towards surgery! I need to talk to one more doctor today before I decide. I heard they might be able to take care of an old hernia at the same time. My options are limited with Kaiser unless I spend a lot of money
> Mike, > I think one of the most important questions of all that you could ask is [quoted text clipped - 12 lines] > > Ron S James A Honeychuck - 10 Mar 2005 19:14 GMT C'mon Ron, admit that you nearly set a record at 10 1/2 hours and 5 pints of blood.
More typical is three or four hours and no transfusion.
jimhoney
> 10 1/2 hours? Good God just when I started to finally lean towards > surgery! [quoted text clipped - 18 lines] >> >>Ron S I. P. Freely - 10 Mar 2005 21:41 GMT You're asleep, so the 10 hours is the docs' problem, not yours. "Heard"? What do your docs say? I proposed to my independent PC and colon cancer docs that they team up and remove both at the same time. Their eyes lit right up, and I could hear the wheels turning: "Wow! Something new and different for a change" and "Maybe there's a paper in this!". I'm sure my HMO also thouight, "We can save $10-20,000!". Don't know or care how long I was in surgery, but I lost no blood to speak of and was playing and working hard physically and comfortably at the magic 6 weeks when abdominal incisions are designated as safe from harm.
I.P.
> 10 1/2 hours? Good God just when I started to finally lean towards > surgery! > I need to talk to one more doctor today before I decide. I heard they > might be able to take care of an old hernia at the same time. > My options are limited with Kaiser unless I spend a lot of money James A Honeychuck - 10 Mar 2005 13:47 GMT Jackie,
The likelihood your hip pain is from metastatic prostate cancer is about one percent or less.
http://urology.jhu.edu/prostate/partintables.php
Prepare to be cured on the 24th!
jimhoney standard RRP age 52, cured, no significant aftereffects
> Just found out last month that I have prostate cancer. Went back the first > of this month to my urologist and he gave me all the facts that he had [quoted text clipped - 29 lines] > > (Jack)ie ronju99 - 10 Mar 2005 21:33 GMT What I'm saying is you have know real idea what will happen when they roll you in the operating room. There is no question that if they had RLRP at the time that I had to make a decision, I would have tried that route. I have no faith at all in radiation as an option for locally confined prostate cancer. I will not patronize those that do. It is foolhardy to recommend an unproven treatment option to anyone that hopes to live more than 10 years. IMRT has only been around for a couple years. Like all the other Great radiation treatments that have come an gone without any proven success, I would not be willing to bet my life on another unproven one that's in the pipline. I truly feel sorry for the ones that have chosen radiation based upon the hipe that I've seen on websites and from some in this newsgroup. I anquish at those that post here about how wonderful there experience has been only a few months following treatment. Knowing that they haven't a clue of what's in store for them further down the road. If you want to do this support group a service, solicit responses from REAL long term suvivors of radiation treatment from 10 15+ years. That is if you can fine very many. My above post was only to emphasixe the importants of who really is going to be doing the surgery. I really don't believe mine would have been as long as it was had I had an experience surgeon and team doing the work. As I've stated in the past, there weren't many experienced surgeons in the field when I had mine done and I hoped by going to IU Medical Center in Indianapolis and having a student of Dr. Catalonia that I might get lucky. However that didn't happen. I don't believe I was necessarily an exception to the rule. My case was not unusal. I was healthy an not that much overweight. I'm 6"2" 230# and fairly fit. Still am healthy but not quite as fit but normal otherwise. I believe 100% in surgery for localized prostate cancer for any healthy individual under 70 and for some over 70 if they expect to live to be at least 90 because of health and genetics. I just believe we dont emphasize the importance of knowing who really is doing the surgery as it can make a very big difference in the outcome and recovery stage. Ron S
Jackie - 11 Mar 2005 09:38 GMT I hope that you are correct and thanks for the reply especially since I should have put my question in it's on subject group. Didn't mean to 'jump' into this one like I did. Thanks also for the web site link.
I am very much prepared to be cured on the 24th but just wish it was already here and didn't have to wait. Again thanks for the reply and encouragement.
(Jack)ie
> Jackie, > [quoted text clipped - 42 lines] >> >> (Jack)ie ckh - 11 Mar 2005 12:27 GMT > Just found out last month that I have prostate cancer. Sorry to welcome you to the club.
> I have had an increasing problem with hip pain and my concern is that the > cancer has spread but I am not sure if such pain would be from the cancer or > from some problem with my back. I have pains all over but I'm 58 and my joints are going. The pains and creaks started when I was 50.
> I am 53 and suppose to have surgery on the 24th to remove my > prostate. The books say that you should recover quickly and have a full cure.
Good luck and keep us informed as to your progress.
Steve Kramer - 11 Mar 2005 15:41 GMT > I am 53 and suppose to have surgery on the 24th to remove my prostate. > Given my psa and the Gleason score, assuming that it is correct, what is the > likelihood that my hip pain has anything to do with the cancer? I know that > no one can give a definite answer but I am really looking for some opinions > on the likelihood that this could be the cause. Nonesense. I will give you a definite answer and will stake my unprofessional medical reputation on it!
Your hip pain is not caused by your cancer. Your Gleason could be 3+3 and you could still have mets, I suppose. But, your PSA would not be 3.3 if you had mets. let alone mets on the hip, let alone mets that caused pain. Combined with the 5% in-gland PCa and your biopsy of January 2003, I guarantee the only relationship between your hip and your cancer is your brain. Most of us have experienced these almost psychosomatic paranoid thoughts.
Get your surgery. It will very likely be a cure for you.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 Seminal Vesicle involvement, 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
Jackie - 12 Mar 2005 02:36 GMT Thanks for all the comments and opinions. They do help. As far as the pain being some 'psychosomatic paranoid thoughts' that I thank I can live with.
Again thanks for the support.
(Jack)ie
>> I am 53 and suppose to have surgery on the 24th to remove my prostate. >> Given my psa and the Gleason score, assuming that it is correct, what is [quoted text clipped - 4 lines] > opinions >> on the likelihood that this could be the cause. , I
> guarantee the only relationship between your hip and your cancer is your > brain. Most of us have experienced these almost psychosomatic paranoid > thoughts. > > Get your surgery. It will very likely be a cure for you. ckh - 11 Mar 2005 12:27 GMT
> Regarding choice I cannot tell you what to do. I can just tell you why > I chose RRP over radiation. The side-effects (incontinence, ED [quoted text clipped - 8 lines] > spread -- I'M NOT A DOC; I COULD BE WRONG; but that's the reason I > decided on surgery. Now I understand the surgical bias that some have.
Incontinence is MUCH less after Rad compared to Surgery. It's not that it starts later; it's that it almost never happens. That's what the books say.
Lange, in my (C) 2003 Dummies book says about incontinence after Rad,
"1 percent to 3 percent of all patients. Only rarely (less than 1 percent of cases) is it permanent."
He's going by old data, the EBRT standard and not 3D-CRT and definitely not IMRT.
I'm not sure that Rad itself is the cause. You take a bunch of 65 year olds, give 'em a catheter, run a cystoscope up to their bladder, how many of them will be dripping pee after that? Could it be 1 to 3 %?
When Lange talks about incontinence after surgery, he doesn't directly quote the percentages but hints at 5-10% as the mark of a good surgeon. So what are the numbers for an "average" surgeon?, a bad surgeon? 20%, 30%?
Seems inappropriate to compare good numbers in the case of surgery with overall numbers in the case of Rad. I realize that Lange isn't doing it directly but he is setting it up so that we do that.
ED after rad is a real problem but even here, the "just wait, it'll happen later than surgery and be as bad." is not quite accurate.
According to Lange, Rad's ED numbers
"may still be as high as 20 percent to 40 percent" (page 151)
Again, discussing surgery, he doesn't use the same direct phrasing but says about selecting a surgeon,
"if his personal success rate is lower than 40 percent, consider seeing another urologist."
But here's another problem. When talking about Rad, Lange is saying 20-40% may have ED.
When talking about surgery, he's saying that a good surgeon, doing nerve sparing, working with a patient whose cancer is capsule bound, should have a success rate of 40% (or better).
He's not using the same terminology:
Rad 20-40% failure. Surgery 40% success.
When you use the same terms as he used with Rad, which is talking about those who walk out with ED, surgery has a 60% failure rate.
Rad 20-40% failure across all cases Surgery 60% failure, good surgeon, nerve sparing, select patient
I can't tell from Lange's prose but there is enough wiggle room that he could be cherry picking the data.
For example, Rad patients tend to be older that surgical patients. This alone should cause ED among Rad to be higher. It's not. ED is lower.
Second, the 40% success rate for a good surgeon applies only to cases where nerve sparing was attempted.
Of course, that's only if the patient is a candidate for "nerve sparing".
Finally about outcomes and certainty - radiation, even focussed radiation like an IMRT, is a zone of destruction thing. Your statement about "time to spread" has validity but it also can mean the converse.
With surgery, they cut here and not there. This is removed and that is not. This is the right thing to do if the cancer is here and not there.
My rad doc mentioned the possibility of microscopic extracapsular extensions. If there is just one of these, unnoticed, in a surgical patient and it's left behind, then over time, the cancer could flare up.
Rad will include these margins in the zone of destruction.
It's wrong thinking to believe that surgery cuts the cancer out, guarenteed.
It does, if the cancer is where they are cutting. There must be some percentage of cases where the cancer has already extended beyond the capsule.
If the cancer is not where they are cutting, then they will miss some of it and over time, the PSA climbs and the patient is looking at salvage.
The above statement may explain why the cancer "comes back" in some surgical patients. The recent report here, that Rad has better long term numbers that surgery, is also consistant with this idea.
In this newsgroup, there's a really strong bias toward braving surgery because it's a certain cure and rad is not. There is a belief that rad patients have similar side effects to surgical patients or will eventually experience the same or worse.
None of that is true.
Surgery is not certain, at least no more so than Rad. There are hints in the literature that Rad produces better results. That's not proven either. I believe that both choices have many more successes than failures and that to the individual, the "odds" work out to be very good, either way.
For side effects, ED, incontinence, ability to return to pre-treatment life, on the whole, Rad wins hands down.
Even Rad+Lupron is still the winner by far. There's been mention in the group about Rad side effects.
My primary complaint is that I've felt tired for 5 months. I'm still working a 10 hour day. I climb stairs.
My other complaint is that I have to pee every couple hours and there is a burning sensation. That's a well documented side effect but not a show stopper.
I'm starting to think that most of my side effects are from the Lupron. In the last month, things have gotten a whole lot better.
In the last week, there's been a big improvement.
Last night, I slept 7 hours without going to pee. This is the first time in 5 months.
I've missed a few days of work. I've taken naps every weekend. With Rad, there is no pain to manage.
I'm not advocating for Rad or surgery. Both options offer a good chance of a cure for the cancer. Both have side effects and in most cases, the side effects can be tolerated, managed, or mitigated.
I'm simply noticing that this group (and the literature) has a surgical bias that is not justified by the numbers.
There're been comments about anesthesia's side effects. If this is a concern, consider that RP is complex surgery and require many hours of heavy anesthesia.
Rad, seed implants are commonly done with a local. Many guys are awake and aware during the entire process. Consequently, there are minimal side effects from the anesthesia.
The choice is a personal one. Either is appropriate threatment. I wouldn't say it's a coin-toss. Look at it from all angles. One might choose surgery because, as some have mentioned, they are not comfortable with the idea of radiation, period.
keith340@webtv.net - 11 Mar 2005 14:01 GMT ckh...your point is well taken...i could not have endured surgery and opted for conformal proton beam treatment which has been around since the 50's...Loma Linda has published the results of their 10 year study...many men who can endure surgery and are under 70 have opted for proton...during my decision making process i met two men in their 70's who were 10 year proton survivors at my local pca support group for all the types of treatment patients...thanks for your candor.
Keith Lundy/So. California 40 Proton Beam Radiation Treatments Loma Linda Univ.Med Ctr..3/03-5/03
Leonard Evens - 11 Mar 2005 15:51 GMT > Now I understand the surgical bias that some have. > [quoted text clipped - 24 lines] > with overall numbers in the case of Rad. I realize that Lange > isn't doing it directly but he is setting it up so that we do that. Serious incontinence after surgery, requiring the continuing use of pads at one year is fairly uncommon. According to Walsh it is just a few percent. Minor stress incontinence is more common, but it is common in older men and women anyway, even without surgery for prostate cancer.
On the other hand, urinary problems other than incontinence sometimes develop after radiation. Bowel problems are more common after radiation than after surgery.
Neither of these side effects, by themselves, should tilt the decision for one method over the other.
> ED after rad is a real problem but even here, the "just wait, it'll > happen later than surgery and be as bad." is not quite accurate. [quoted text clipped - 20 lines] > Rad 20-40% failure. > Surgery 40% success. Your source is not really very helpful. Impotence following treatment is highly dependent on age. Surgeons skilled in nerve sparing technique can avoid permanent impotence in younger men in over 80 percent of their cases. For men over 70, on the other hand, they can rarely do better than 30 percent. If you have access to a skilled surgeon, and you are younger than 60, you shouldn't let any alleged superiority of radiation for impotence bias you. On the other hand, if you are approaching 70 or you are older, radiation will probably be a better bet, even though the odds of being impotent may still be fairly high (50 percent or more).
Keep in mind also that impotence can be treated, and it doesn't mean the end of an active sex life.
Most important of all, in deciding on treatment, what matters most to you is the success rates of the particular practitioners, that are available to you, for men your age with your particular diagnosis. You can't draw useful conclusions from general statistics applying to all patients being treated by all practitioners.
I. P. Freely - 12 Mar 2005 06:29 GMT > On the other hand, urinary problems other than incontinence sometimes > develop after radiation. Bowel problems are more common after radiation > than after surgery. > > Neither of these side effects, by themselves, should tilt the decision for > one method over the other. Lesseee . . . filling one's pants with sterile, more-or-less odor-free urine for a few months, or sh.tting blood, often with little control, for years. I think that would be a major tie-breaker for me.
I.P.
ckh - 16 Mar 2005 02:26 GMT > > On the other hand, urinary problems other than incontinence sometimes > > develop after radiation. Bowel problems are more common after radiation [quoted text clipped - 8 lines] > > I.P. There it is again. Any of you Rad patients know what he's talking about?
(I realize that with his colon cancer, I.P. was not a candidate for rad.)
Heather - 16 Mar 2005 04:11 GMT > > > "Leonard Evens" <len@math.northwestern.edu> wrote > > > On the other hand, urinary problems other than incontinence sometimes develop after radiation. Bowel problems are more common after radiation than after surgery.
> > > Neither of these side effects, by themselves, should tilt the decision for one method over the other.<<<<<<<<
> > Lesseee . . . filling one's pants with sterile, more-or-less odor-free urine > > for a few months, or sh.tting blood, often with little control, for years.
> > I think that would be a major tie-breaker for me. > > > > I.P. > > There it is again. Any of you Rad patients know what he's talking > about? No.......Ron had NO bowel problems. Ray (brother-in-law) had NO bowel problems. My neighbour had NO bowel problems. Another neighbour's father had NO bowel problems. That's just 4 of the many I know of.
Here in Canada, men seem to choose to have radiation over surgery more than in the US (which is strictly my personal impression).......so I have quite a few I could ask. But I won't. A tad personal, I should think. Particularly *couched* in IP's terminology. (G).
Heather
Larry Sabo - 16 Mar 2005 17:08 GMT >[snip] > [quoted text clipped - 6 lines] >There it is again. Any of you Rad patients know what he's talking >about? Not me, personally, but a neighbour was influenced to choose RRP over Rad because a close friend of his did have such problems, he told me. No idea if they were rectified [ :o) ] by laser treatment nor whether the story got distorted in the telling.
I had salvage EBRT for 6 weeks ending in Dec'2003 and haven't had any significant long-term problems. Some minor proctitus in the form of mucus discharge during BMs, but I expect that will go away in time. It certainly wouldn't change my mind about radiation, if I could choose over again. Anal fissures brought on by a hard BM during treatment can be blamed on lack of admonition to follow an appropriate diet and use stool softeners as a matter of routine. Even they have pretty much cleared themselves up.
Larry
ron - 11 Mar 2005 17:00 GMT ckh wrote...snip...
> Incontinence is MUCH less after Rad compared to Surgery. It's not > that it starts later; it's that it almost never happens. That's what > the books say. > > Lange, in my (C) 2003 Dummies book says about incontinence after > Rad, Here's some data from a single institution study were QOL factors were compared for seeds, 3D-CRT and RP at a median of 6.3 years post treatment. It also includes age-matched controls. It suggests different outcomes from what your book was stating.
Age-adjusted, Long-term (median 6.3 years) EPIC Domain Summary Scores HRQOL Domain BT 3-D CRT RP Age-matched Control Men Urinary Irritative 81* 84 91 89 Urinary Incontinence 78* 86 80* 92 Sexual 28* 35* 39* 63 Bowel 86* 84* 94 96 Hormonal 87* 89 91 93 Denotes significant change in HRQOL domain score from 2 to 6 years of median f/u (p=0.05) * Denotes significant difference in HRQOL domain score at 6 yrs of median f/u vs. controls (p=0.05)
> ED after rad is a real problem but even here, the "just wait, it'll > happen later than surgery and be as bad." is not quite accurate. see above Table
> Finally about outcomes and certainty - radiation, even focussed > radiation like an IMRT, is a zone of destruction thing. Your [quoted text clipped - 4 lines] > is not. This is the right thing to do if the cancer is here and not > there. Your certainly right about this.
> My rad doc mentioned the possibility of microscopic extracapsular > extensions. If there is just one of these, unnoticed, in a surgical [quoted text clipped - 16 lines] > The above statement may explain why the cancer "comes back" in some > surgical patients. Yes this is all true, but I wonder how many men in this newsgroup who have gone the RT route have actually seen their post-RT dosimetry charts (D90, etc.). Just as the surgeon may leave cancerous tissue behind, RT often has cold spots and if disease was present in that area, then it too remains untreated.
> The recent report here, that Rad has better long > term numbers that surgery, is also consistant with this idea. This is yet another flawed study that uses disparate defintions of disease freedom to compare success. Numerous published papers have pointed out this error and shown that ASTRO gives RT an 8-40% disease freedom advantage.
> In this newsgroup, there's a really strong bias toward braving > surgery because it's a certain cure and rad is not. There is a [quoted text clipped - 4 lines] > > Surgery is not certain, at least no more so than Rad. Few things are certain and surgery is certainly not one of them. I don't know whether surgery is better, the same, or worse than RT. Only in the case of SI+EBRT can we compare the results to directly surgery, and in this case both treatments appear to have similar outcomes.
> There are > hints in the literature that Rad produces better results. That's Reference?
> not proven either. I believe that both choices have many more > successes than failures and that to the individual, the "odds" work > out to be very good, either way. Right on.
> For side effects, ED, incontinence, ability to return to > pre-treatment life, on the whole, Rad wins hands down. see Table above
> I'm simply noticing that this group (and the literature) has a > surgical bias that is not justified by the numbers. There are other PCa discussion groups that are strongly biased towards RT, take a look at PHML. I actually find this one relatively balanced.
> The choice is a personal one. Either is appropriate threatment. I > wouldn't say it's a coin-toss. Look at it from all angles. One > might choose surgery because, as some have mentioned, they are not > comfortable with the idea of radiation, period. Yep, or some may choose RT because they don't wan to be "cut"...Best wishes and good health, Ron
ronju99 - 11 Mar 2005 20:21 GMT 6.3 year comparison. Wow! Yes, we can make radiation look appealing as long as we don't have any non-bias long term studies. Just think! If we didn't do anything for 6.3 year, how would we compare to the ones that chose either of the other options. I bet doing nothing would result in better stats. So let's not compare apples to oranges. We know that radiations effects continue for a long time and the effects will continue to get worse. Because 3D-crt and IMRT are relative new procedures, we can't speculate as to the success of these treatments without real long term studies. It's amazing that no one can see that if any of the Rad treatment options were working as well as they projected they would when they initially came out we wouldn't be discussing this now. What success in the past has given us so much confidence in these latest treatments. It definitly isn't any long term non-bias studies. There aren't any. Nothing comes close to being long term. I don't believe 10 years is long term as I can get better results from doing nothing than what the above fiqures give. Show me real prove that radiation is beneficial in the long term. Ron S
keith340@webtv.net - 12 Mar 2005 00:51 GMT RON...I always walk away with more knowledge from your responses..I am very familiar with Don Cooleys site...I will e-mail you a copy of the 10 yr Loma Linda study as soon as I receive it...I understand about the ASTRO controversy with Loma Linda's findings...
Keith Lundy/So. California 40 Proton Beam Radiation Treatments Loma Linda Univ.Med Ctr..3/03-5/03
I. P. Freely - 12 Mar 2005 06:51 GMT "ckh" <nospam@nospam.com> wrote>
> In this newsgroup, there's a really strong bias toward braving > surgery because it's a certain cure and rad is not. There is a > belief that rad patients have similar side effects to surgical > patients or will eventually experience the same or worse. > > None of that is true. Newbies, the books and trials and universities and hospitals say it IS true. In particular, SEs often increase dramatically and dangerously for up to 15 months --- sometimes for years -- after the initiation of ADT, whether with RP or RT.
Who just agreed with my entire several-page pitch today -- again -- that this is true? The staff who wrote "PC for Dummies", including Lange, which ckh is so fond of quoting.
Believe whomever you like, but realize that much of the rest of ckh's post also contradicts the literature, including even the literature he selectively quotes. Example: his quote of Lange about 1-3% incontinence? That's URINARY incontinence; ckh omitted Lange's comments about rectal problems after RT, which doesn't even address the bowel problems Johns-Hopkins rates at a 47% occurrence rate at 2 years. And unlike the rest of us, ckh is touting a procedure as "winning hands down" when in fact there are many circumstances which that procedure is absolutely not even a contender, as is the case with each tre
|
|