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Medical Forum / Diseases and Disorders / Prostate Cancer / February 2005My Dad's Post-RP PSA Result Not Great - Help Needed
Hello friends! I've been reporting my father's post-RP PSA results on this group for a few years now, so some of you might remember me. The results were good for a long time, but they are not so any more. His latest post-op PSA was 0.16, so I need a few advices from you. Here's my father's brief history: Operated in May of 2000. Gleason = 3+4 (7) PSA= 2.16 Post-op pathology: *No extraprostatic extension found *Two postive surgical margins *No seminal v. involvement *Peri-neural invasion present *No lymph node involvement His post-op PSA results were <0.1 (fluctuating between < 0.02 and = 0.07 for more than four years). However, in September of 2004 my dad's PSA result was = 0.12. The test was repeated in December of 2004 and it showed PSA = 0.16. So, less than 5 years after his radical prostatectomy, my dad seems to have prostate cancer recurrence. His doctor recommends 33 radiation therapies if his next PSA result goes up again. From everything that I've read on the Net this kind of recurrence (4 years after the surgery) probably indicates some kind of local recurrence. I am interested in any experiences, advices, recommendations, approaches, insights that could help me and my family make an informed decision for my father. How long should we wait before a decision for the radiation therapy is made (Does PSA need to be >0.2 for my dad to undergo the radiation treatment?)? What are his chances for another good remission (I won't say "cure")? Any insights and/or experiences (or even links to good articles) are more than appreciated. Thank you very much! Gordan Gordan, My PSA results were .1, .27, and .37 before we decided on radiation. By the time we decided, it was .75. Radiation knocked it down for about a year, then it rose again. But, I was 46 and my cancer is aggressive. Your father is now 60? or almost 60? His PSA has risen to just barely detectable. This tells you that your father's cancer is not my cancer. His is much less aggressive. So, you could make an argument for keeping very close tabs on it and see where it goes. Especially if he's in poor health otherwise, which I don't recall as stated. On the other hand, assuming his last three PSA results show a definite significant rise, and he is in good health and likely to live into his 80s, I think I would go with the radiation. When you have the positive indicators, you might as well attack it while it's still small. It's a close call either way.  SignatureProstate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron (1 mo) 07/21/2003 @ 48 PSA .07 .05 .06 Lupron (4 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non Illegitimi carborundum > Hello friends! > [quoted text clipped - 38 lines] > Thank you very much! > Gordan > Hello friends! > [quoted text clipped - 35 lines] > Any insights and/or experiences (or even links to good articles) are more > than appreciated. I think your doctor is telling you what most urologists believe. The fact that it took over 2 years to start increasing is good. That together with the positive margins suggests that perhaps some cancer was left behind in the local area. He might get another opinion, but it does seem that giving radiation a shot makes sense. Of course, it is possible that the cancer has alread spread to distant sites and might even have done so before the surgery. In that case radiation won't cure him. But there is a good chance he will be fine for quite an extended period of time. Unfotunately, when deciding if radiation is worth the trouble, you can't be certain about anything. You just have to go with the choice with the best odds. > Thank you very much! > Gordan Thanks Steve and Leonard! Yes, my dad is 60 now and in otherwise very good health. Are there any statistics that indicate when it would be best to attack the recurrent cancer? From what I've found, it seems that everything less than 2 (PSA< 2) is good. Also, I see that many doctors don't consider PSA< 0.2 to be classified as cancer recurrence? Why would that be the case? If we have all those ultra-sensitive tests today (that can measure PSAs like 0.001), why do we still rely on old definitions of recurrence? I mean, my dad's increase in the PSA level from 0.06 to 0.12 to 0.16 seems like a very certain recurence (and his doctor thinks so too) even though it's still <0.2. Gordon, since I've been pushed into this club, I have read much in the way of 'modern' documentation of standards and percentages regarding PCa. When I began, it seemed that 'the' standard was just being changed from "4.0" to one of velocity. When I had my first 'recurrence', the medical community was just coming off the "1.0" standard and the "1.0" standard was a recent modification from the "2.0" standard. This huge bowl of knowledge about PCa is growing by leaps and bounds suddenly in the new millennium (actually beginning near the end of the last). What they are finding is that 'velocity' is the real key, both in initial diagnosis and in what we call recurrence (really, recurrence is a failure of the previous treatment to get all the cancer). The debate now, at least among us, is whether or not there is a minimum PSA level under which velocity is no longer a functional indicator. I think here, most of us are coming around to agreeing that velocity counts at .1 and over. BTW, I am not ignoring your request about statistics. Well, maybe I am. I don't believe in them so much when it comes to life and death decisions. When there was only a 33% chance that I had cancer with a PSA of 16, I got the biopsy. When there was only a 33% chance of recurrence when I was at .37, I took the radiation. In both cases, it was proven that I was on the wrong side of the statistics. And, now, using the velocity measure, we would all agree that the .37 after a .27 after a .10 was almost a certain indicator of recurrence. So, don't worry about statistics. They all end up being a reflection of how the question is asked. SignatureProstate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron (1 mo) 07/21/2003 @ 48 PSA .07 .05 .06 Lupron (4 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non Illegitimi carborundum > Thanks Steve and Leonard! > [quoted text clipped - 8 lines] > the PSA level from 0.06 to 0.12 to 0.16 seems like a very certain recurence > (and his doctor thinks so too) even though it's still <0.2. Steve, I agree with you 100% on this one, I believe (and I'd bet that Leonard concurs) that statistics merely represent a view of history painted with a broad brush, useful, to be sure, for predictions in many applications such as insurance underwriting. I think applying statistical data to a medical prognosis is akin to using statistics to pick a winning horse at the track, it may help, but there's no guarantees. Tom > Gordon, since I've been pushed into this club, I have read much in the way > of 'modern' documentation of standards and percentages regarding PCa. When [quoted text clipped - 38 lines] > recurence > > (and his doctor thinks so too) even though it's still <0.2. > ... > From everything that I've read on the Net this kind of recurrence (4 years after the [quoted text clipped - 5 lines] > won't say "cure")? > ... I'm thinking about this as follows: If your Dad's PSA numbers indicate a recurrence, then radiation is the only remaining hope for a cure. If so, then it's better to do it now, before the cancer has more opportunity to grow. I can't think of any benefit to waiting if he's going to need to try it eventually. Waiting only makes sense to me if there's a chance that the elevated PSA does not indicate a recurrence. If your Dad were 85 years old, then it might be a different story. But at 60, it seems to me that the PCa is likely to kill him if he does indeed have a recurrence. I would suggest that your Dad talk to his doctor about whether there is any chance that the elevated PSA does not indicate a recurrence. If there is no such chance (or it's very small) then maybe he can schedule radiation for as soon as possible. Once the decision is made to go with radiation, there may be a delay to get it scheduled. I suggest that your Dad talk to the doctor about getting on hormone therapy during that time. The HT may 1) stop disease progression while waiting for the RT, and 2) make the RT more effective. HT has side effects but, for most of us, they've been bearable. Hopefully, if he does get HT, they won't need to continue it for too long after the RT is finished. Alan "Alan Meyer" <ameyer2@yahoo.com> wrote > > If your Dad's PSA numbers indicate a recurrence, then radiation is > the only remaining hope for a cure. If so, then it's better to do it > now, before the cancer has more opportunity to grow. I can't think > of any benefit to waiting if he's going to need to try it eventually. The following applies to ADT (HT) -- I wasn't researching RT at the time -- but wonder whether RT may fall into the same category as this statement about HT: Major meta-study found no evidence that early adjuvant ADT provides any advantage, even w/rising PSA, I.e., that there's no point in adjuvant (ADT) treatment prior to symptoms. Walsh, the Mayo Clinic, Sloan-Kettering, the ACS, and universities agree (citing failure to prolong life, SEs, QOL, and accelerated refraction). I'd want to know whether that includes RT before rushing into adjuvant RT. > HT has side effects but, for most of us, they've been bearable. Not according to my poll of this group. In it, as reported earlier, of 17 responding, A. 3 described mild SEs (but didn't respond when asked whether their testosterone was indeed suppressed to castrate levels, without which some research indicates they're not getting the benefits), B. 2 describes serious SEs, maybe intolerable to some people, and C. 12, including Alan, described SEs many people would rate as intolerable, given the very limited benefit of HT. Several quit HT because they considered its SEs worse than doing nothing. Not to mention a geriatric psychologist who advises her patients that HT is devastating, that it should be considered primarily by those who dramatically fear death and.or have recurrence symptoms. Bottom line: do a HELL of a lot of serious research before taking the advice of any of us on such crucial issues as PC treatment. I.P. I.P. Freely wrote...snip... > wonder whether RT may fall into the same category as this statement > about HT: Major meta-study found no evidence that early adjuvant ADT [quoted text clipped - 3 lines] > life, SEs, QOL, and accelerated refraction). I'd want to know whether that > includes RT before rushing into adjuvant RT. I.P...There are a number of studies that show adjuvant HT helps with RT efficacy for higher risk patients, for example: 6-Month Androgen Suppression Plus Radiation Therapy vs Radiation Therapy Alone for Patients With Clinically Localized Prostate Cancer A Randomized Controlled Trial; JAMA Vol. 292 No. 7, August 18, 2004; Anthony V. D'Amico, MD, PhD; Judith Manola, MS; Marian Loffredo, RN, OCN; Andrew A. Renshaw, MD; Alyssa DellaCroce, BA; Philip W. Kantoff, MD Phase III trial of long-term adjuvant androgen deprivation after neoadjuvant hormonal cytoreduction and radiotherapy in locally advanced carcinoma of the prostate: the Radiation Therapy Oncology Group Protocol 92-02; J Clin Oncol. 2003 Nov 1;21(21):3972-8; Hanks GE, Pajak TF, Porter A, Grignon D, Brereton H, Venkatesan V, Horwitz EM, Lawton C, Rosenthal SA, Sandler HM, Shipley WU. The abstract of a more relevant paper relating to RT, with or without HT, following RP recurrence is posted below. Again, it suggests an advantage to adjuvant HT, particularly in men with more advanced staging...Best wishes and good health, Ron Radiotherapy after radical prostatectomy: does transient androgen suppression improve outcomes?; International Journal of Radiation Oncology*Biology*Physics, Volume 59, Issue 2 , 1 June 2004, Pages 341-347; Christopher R. King M.D., Ph.D., , *, , Joseph C. Presti, Jr. M.D., , Harcharan Gill M.D., , James Brooks M.D., and Steven L. Hancock M.D.*, Purpose: The long-term biochemical relapse-free survival and overall survival were compared for patients receiving either radiotherapy (RT) alone or radiotherapy combined with a short-course of total androgen suppression for failure after radical prostatectomy. Methods and materials: Between 1985 and 2001, a total of 122 patients received RT after radical prostatectomy at our institution. Fifty-three of these patients received a short-course of total androgen suppression (TAS) 2 months before and 2 months concurrent with RT with a nonsteroidal antiandrogen and an luteinizing hormone-releasing hormone (LHRH) agonist (combined therapy group); the remaining 69 patients received RT alone. Treatment failure was defined after postoperative RT as a detectable PSA >0.05 ng/mL. Clinical and treatment variables examined included: presurgical PSA, clinical T stage, pathologic Gleason sum (pGS), seminal vesicle (SV) involvement, lymph node involvement, surgical margins, pre-RT PSA, prostate dose, pelvic irradiation, indication for postoperative RT (salvage or adjuvant), and time interval between surgery and RT. Minimum follow-up after postoperative RT was 1 year and median follow-up was 5.9 years (maximum, 14 years) for patients receiving RT alone, and 3.9 years (maximum, 11 years) for patients receiving RT with TAS (combined therapy group). Kaplan-Meier analysis was performed for PSA failure-free survival (bNED) and for overall survival (OS). Cox proportional hazards multivariable analysis examined the influence all clinical and treatment variables predicting for bNED and OS. Results: The median time to PSA failure after postoperative RT was 1.34 years for the combined therapy group and 0.97 years for the RT alone group (p = 0.19), with no failures beyond 5 years. At 5 years, the actuarial bNED rates were 57% for the combined therapy group compared with 31% for the RT alone group (p = 0.0012). Overall survival rates at 5 years were 100% for the combined therapy group compared with 87% for the RT alone group (p = 0.0008). For pGS 7, the 5-year bNED rates were 58% for combined therapy and 38% for RT alone (p = 0.0155), and for pGS 8 the 5-year bNED rates were 65% for combined therapy and 17% for RT alone (p = 0.075). The 5-year OS rates for pGS 7 were 100% for combined therapy and 98% for RT alone group (p = 0.106), and the 5-year OS for pGS 8 was 100% for combined therapy and 54% for RT alone (p = 0.04). On multivariable analysis, only SV involvement (p = 0.0145) and the addition of short-course TAS to postoperative RT (p = 0.0019) were significant covariates predicting for bNED and, similarly, approached significance for overall survival (p = 0.0594 and p = 0.0856, respectively). Conclusions: Radiotherapy combined with a short-course TAS after radical prostatectomy appears to confer a PSA relapse-free survival advantage and possibly an overall survival advantage when compared with RT alone. The hypothesis that a transient course of androgen suppression with salvage or adjuvant RT after prostatectomy improves outcomes will need to be tested in a randomized trial. >Subject: Re: My Dad's Post-RP PSA Result Not Great - Help Needed >From: "I.P. Freely" fuhgeddaboutit@noway.not [quoted text clipped - 27 lines] >given the very limited benefit of HT. Several quit HT because they >considered its SEs worse than doing nothing. "Many people would consider intolerable." is not a criterion. Be specific, did -those- 12 consider them intolerable? I have been on leuprolide acetate for 20 months. OF COURSE I am totally impotent and I have some hot flashes, plus I am always tired and my muscles are wasting away- my fore-arms used to look like Popeye's and now they look like pipe cleaners. But none of that in intolerable. I am the life of the party, ask Mike & Mike, Inc. >Not to mention a geriatric psychologist who advises her patients that HT is >devastating, that it should be considered primarily by those who [quoted text clipped - 4 lines] > >I.P. Hello again, guys and thank you for your comments and opinions. It seems that the rising post-RP PSA has indeed created a whole new sub-group of cancer patients, where there is a lot of speculation and uncertainty (among doctors, let alone among patients). From what I have read on the Net, it seems that the odds of beating the cancer/prolonging disease-free interval increase if radiation therapy is combined with a small dose of the hormonal therapy. Perhaps I can ask my father's doctor about this? My father will get his next PSA result on the 22nd of March and I will make sure to go with him and, then, let you guys know what steps we are going to be taking. God, it would have been so much easier without this. Danny, I am sorry your fore-arms are not like Popeye's anymore :o) Popeye is my favourite cartoon character and I even have a great website dedicated to the spinach-chompin' runt. You can also see a picture of my father and myself in the "About Us" section: www.calmapro.com/popeye Thank you very much for all the help. Gordan Nice site, Gordan. SignatureJerryW jweindel at flash dot net 2/11/04 PSA 2.6, Suspicious DRE (age 62) 2/23/04 Biopsy: Gleason 3+4=7, T2a, left lobe 5/18/04 RRP, Path: Gleason 4+3=7, T2c, both lobes 7/13/04 PSA <0.1 10/12/04 PSA <0.1 1/18/05 PSA <0.1 > Hello again, guys and thank you for your comments and opinions. > [quoted text clipped - 26 lines] > > Gordan As I said, several of them did, to the point they quit ADT, preferring fate over the SEs. I.P. "Danny McCarty" <roachable@aol.comneat> wrote > > > "Many people would consider intolerable." is not a criterion. Be specific, did > -those- 12 consider them intolerable? > As I said, several of them did, to the point > they quit ADT, preferring fate over the SEs. You're right I.P., I was one of the patients that didn't like the side effects of HT. But I would still choose HT over death. In my case, the Lupron I took appeared to cause dangerously elevated liver enzymes - which was a major reason why I got off the drug early. The doctors were concerned that the Lupron might kill me before the cancer did. However if my cancer recurs I will try one of the other HT therapies rather than just roll over and die. > Bottom line: do a HELL of a lot of serious research > before taking the advice of any of us on such > crucial issues as PC treatment. Excellent advice. Unfortunately, it's probably good advice concerning doctors' advice too. Second opinions are often warranted. There seem to be radically different opinions among different doctors and they can't all be right. Alan >Subject: Re: My Dad's Post-RP PSA Result Not Great - Help Needed >From: "I.P. Freely" fuhgeddaboutit@noway.not >Date: 1/30/2005 11:38 PM Central Standard Time >Message-id: <0yjLd.253$I62.73@fe07.lga> ;-} "several" is still no good. Numbers, please- redistribute properly among the other categories. On this group, over the last three years, I have discussed the subject with only two persons who preferred "quality of life" over life. >As I said, several of them did, to the point they quit ADT, preferring fate >over the SEs. [quoted text clipped - 5 lines] >specific, did >> -those- 12 consider them intolerable? I reported the first-hand reports from all respondents in the thread, "HT SE Survey Results" beginning Dec 22. More have responded since then, including some who quit because of the SEs. So far the tally of those who quit or recommend quitting or imply they're quitting (interpretation is sometimes subjective, but quitting HT because of its SEs implies "intolerable" to me) runs 5 or 6 of 17. One person's "total PITA" can easily be another's "No way in hell" and yet another's "No big deal"; I'm not going to impose the"intolerable" word on someone else's case, which is why I said "Many people would consider intolerable". My personal criteria have been discussed often and in depth, particularly the part about HT adding a few months of heartbeat in return for years -- if we're lucky -- of SEs some of us consider unacceptable. For my personal criteria, about 14 of the 17 report virtually certain SEs I'm unwilling to accept to gain -- MAYBE -- a few months of heartbeat. You're welcome to add me to your list of people who have chosen QOL over a few extra months -- and even that's debatable -- of heartbeat. I.P. > >Subject: Re: My Dad's Post-RP PSA Result Not Great - Help Needed > >From: "I.P. Freely" fuhgeddaboutit@noway.not [quoted text clipped - 15 lines] > >specific, did > >> -those- 12 consider them intolerable? I don't recall whether I responded to the survey. Put me in the "accepts ADT" column, at least for now. By July, I hope to be in the "accepts IADT" column. Soon after my RRP, I was in the "does not accept RT" column. But, my PSA pushed me there. Then I was in the "does not accept ADT" column until my PSA pushed me into it. Since my Dx, I have been in the "does not accept death" column. The others are just subsets of that decision. However, when the doc comes to me with a 2-month extension and all I have to do is line up the hospice to care for me, I'll be switching to the "accepts death" column. SignatureProstate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron (1 mo) 07/21/2003 @ 48 PSA .07 .05 .06 Lupron (4 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non Illegitimi carborundum > I reported the first-hand reports from all respondents in the thread, "HT SE > Survey Results" beginning Dec 22. More have responded since then, including [quoted text clipped - 38 lines] > > >specific, did > > >> -those- 12 consider them intolerable? "Steve Kramer" <skramer@cinci.rr.com> wrote > > However, when the doc comes to me with a 2-month extension and all I have to > do is line up the hospice to care for me, I'll be switching to the "accepts > death" column. Only slightly facetiously, I've already put myself in that column, since there's not a hell of a lot we can do about it after we fire that initial silver bullet. The rest is essentially palliative, which is certainly worthwhile but doesn't do much to stay the death sentence once the beast reawakens. Accepting that, especially in my case with two death sentences highly likely, makes everything a lot easier, IMO. Classic application of the old saw, "Prepare for the worst and hope for the best". I.P. I have often said here that those of us with terminal prostate cancer have a gift from God. We know what and approximately when and can prepare for it. Most people don't even know the what, yet, and think the when is 100 years off. SignatureProstate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron (1 mo) 07/21/2003 @ 48 PSA .07 .05 .06 Lupron (4 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non Illegitimi carborundum > "Steve Kramer" <skramer@cinci.rr.com> wrote > > > However, when the doc comes to me with a 2-month extension and all I have [quoted text clipped - 12 lines] > > I.P. > I have often said here that those of us with terminal prostate cancer have a > gift from God. We know what and approximately when and can prepare for it. > Most people don't even know the what, yet, and think the when is 100 years > off. Although we don't KNOW mine's terminal, the statistics paint a sufficiently grim picture that I've already changed some priorities and made some decisions (such as avoiding HT until I start getting significant PSA or maybe even PC symptoms). The minute my PSA or a colon cancer test raises a flag, I'll change 'em more. That puts me at least partially in charge, unlike the guy who lets his PC doc dictate every move or the poor schmuck who gets hit by a meteor. And if I escape the odds and live another 30 years, well, most of the changes I'm contemplating and/or making are for the better anyway. I.P. > And if I escape the odds and live another 30 > years, well, most of the changes I'm contemplating and/or making are for the > better anyway. An excellent point. Almost 3 years ago, my onc told me I had a 50/50 chance of living 10 years (May 2012). So, I set in motion that which I needed to assure that I could retire by March 2011, that I would in a condo at death and my wife would not have to worry about outdoor duties, that I would have an easily accessible room for hospice care with a reasonably private place in the lower level for a live-in nurse or assistant to my wife, and be economically equipped to pay off or pay for all the above without worry. My progress, or actually my reaction to treatment, has been so good, I've been given another 10 years (August 2015). But, I can adjust. SignatureProstate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron (1 mo) 07/21/2003 @ 48 PSA .07 .05 .06 Lupron (4 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non Illegitimi carborundum On February 1, Steve Kramer wrote, in pertinent part: > My progress, or actually my reaction to treatment, has been so good, I've > been given another 10 years (August 2015). > > But, I can adjust. ((snert)) Kramer owes me a keyboard! Regards, Steve J __ "Courage is resistance to fear, mastery of fear -- not absence of fear. Except a creature be part coward, it is not a compliment to say it is brave." --Mark Twain Steve, what went wrong with your initial treatment (RP)? Did you have a lymph node involvement? Seminal vesicles involvement? Extraprostatic extension? Do you have systemic disease now or is it still possible to eradicate the beast? Your PSA seems to never have dropped to the undetectable level (< 0.1). Sorry if I ask too many questions. Gordan >I don't recall whether I responded to the survey. Put me in the "accepts > ADT" column, at least for now. By July, I hope to be in the "accepts [quoted text clipped - 10 lines] > "accepts > death" column. Not too many questions. That's what we are all here for. And I should add the answers to my signature, now that I think of it. I had a great post-op biopsy. All good, except seminal vesicle involvement. But, even there, I had positive margins. By my 4th quarterly PSA, I was up from .1 to .27, so we did radiation. By my 4th quarterly PSA, I was up from .15 to .21, so we did Lupron. My 3rd 4-month PSA came up .06, so I'm feeling pretty good about life. I have systemic PSA. There is a very, very slight chance that with sub-tenths of a nanogram that my immune system may kill off the shrunken PCa cells, but highly unlikely. So, I have to accept that I have systemic, ergo 'advanced' PCa. And, it is unreasonable to believe that I can live out my normal expectation (28 more years) before it goes refractive on me. I guess that about sums it up. SignatureProstate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron (1 mo) 07/21/2003 @ 48 PSA .07 .05 .06 Lupron (4 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non Illegitimi carborundum > Steve, > what went wrong with your initial treatment (RP)? Did you have a lymph node [quoted text clipped - 20 lines] > > "accepts > > death" column. A very good friend of ours had a similar experience. He was about 10 years out from his RP when his PSA began to rise. He's had radiation about 4 years ago and now has "undetectable" PSA's. Tell him to go for the radiation. Bev > Hello friends! > [quoted text clipped - 38 lines] > Thank you very much! > Gordan Thanks Beverley! That's very encouraging. Good for your friend. I hope my father experiences the same result, although 10 years is quite different from 4 years... How exactly are they able to pinpoint the exact location of the recurrent cancer? Do they make another biopsy? Gordan >A very good friend of ours had a similar experience. He was about 10 years > out from his RP when his PSA began to rise. He's had radiation about 4 > years > ago and now has "undetectable" PSA's. Tell him to go for the radiation. > Bev They don't, the rising PSA tells them it's back. So they go in a radiate the prostate bed. IN other words they know where the prostate was and they will radiate that area. Today's newer equipment makes pinpointing the radiation much easier. You want him to have the radiation done on a IMRT machine. These machines have something called leaves this allows them to block out certain areas so the radiation only hits where the spots they want it to hit. It is very easy to have done. Your father will just go in pull his pants down and lie on a table while they position him under the equipment. Then he lies there perfectly still for a few minutes. That's it, it takes a few weeks of going each day. It is absolutely painless. It varies from place to place but here they marked my husband with a marker. He had lines and crosses in every color on him. His hips looked as if a child had drawn windows with curtains. They put a tape over his marks as his marks wanted to wash off. Some places will use tiny pin point tattoos. A few men might experience a little bladder or bowel urgency shortly after treatment. My husband had his in the morning before he left for work. He jumped in the car and drove 40 minutes to work and never had a problem. He did like his weekend naps and towards the end of treatment he did go to bed an hour earlier at night. As he said there was a war going on in his body and he knew it. It's just a matter of allowing them to radiate the area from the front, sides and back of the body. Your father will not move - the equipment moves around him. It's really all mathematical calculations programmed into the equipment. To set up, he'll have a cat scan done first and probably an X-ray. Then they will mark him and that's it. The other side effect my husband experienced didn't happen until about the fifth week and he lost his pubic hair. I'll be honest, I teased him unmercifully about his new youthful appearance. Because my husband did have his prostate he did experience some prostate swelling and that caused some problems getting his stream started. They do have meds to help with that. But because your dad no longer has a prostate that probably will not happen. No one will know your father is undergoing radiation treatment for PC unless he tells them. Really, it is that simple! Bev (You may email me privately if you have any more questions concerning the RT or if you'd like my husband would talk to your dad on the phone.) > Thanks Beverley! > [quoted text clipped - 11 lines] > > ago and now has "undetectable" PSA's. Tell him to go for the radiation. > > Bev Caveat emptor: don't forget that RT can have SEs, some of which can be serious. My radiation oncologist advised me to get an RP because of them. I.P. > They don't, the rising PSA tells them it's back. So they go in a radiate the > prostate bed. IN other words they know where the prostate was and they will [quoted text clipped - 8 lines] > lies there perfectly still for a few minutes. That's it, it takes a few > weeks of going each day. It is absolutely painless. Years ago they aimed the radiation bean and shot the area. Yes, there were serious side effects! (Skin was burned, bowels were radiated, etc.) That should not happen now using the IMRT equipment. The side effects now of radiation are minor. Bev > Caveat emptor: don't forget that RT can have SEs, some of which can be > serious. My radiation oncologist advised me to get an RP because of them. [quoted text clipped - 16 lines] > > lies there perfectly still for a few minutes. That's it, it takes a few > > weeks of going each day. It is absolutely painless. > Years ago they aimed the radiation bean and shot the area. Yes, there were > serious side effects! (Skin was burned, bowels were radiated, etc.) That > should not happen now using the IMRT equipment. The side effects now of > radiation are minor. Not one of the 6-8 PC books I've read, including one dated 2005, agrees with that. Just as I believed my automatic transmission shop when they said, "Your tranny is perfect (at 245,000 miles); leave it alone", I believed my radiation oncologist when she said just three months ago, "Get surgery; you don't want the SEs of radiation, especially since your bowel and urinary systems are not perfect (urgent urination, rare constipation)". MIRTH is better, but it still isn't perfect. We're talking sub-millimeters between SEs vs no SEs, and that's IF the PC is contained inside the prostate. I don't consider a lifetime of bloody, uncontrollable diarrhea (one of the benefits of PC: I've FINALLY learned how to spell diarrhea), impotence, and a variety of urinary problems "minor". These SEs aren't frequent -- their likelihood ranges from 10% (bowel problems) to 50% (impotence) -- but their severity sure ain't "minor" in my book. I repeat, caveat emptor . . . and don't make any treatment decisions based on advice from strangers or internet forums. I.P. > Bev > > > Caveat emptor: don't forget that RT can have SEs, some of which can be > > serious. My radiation oncologist advised me to get an RP because of them. MIRTH? *M*I*R*T*H*? My typing is bad, but that's my stupid spellchecker at work behind my back. I.P. > MIRTH is > better, but it still isn't perfect. On February 1, I.P. Freely posted: Quoting himself: >>MIRTH is better, but it still isn't perfect. He ranted ;-) > MIRTH? *M*I*R*T*H*? My typing is bad, but that's my stupid spellchecker at > work behind my back. Well, a little mirth is helpful in our situations. And I note that Beverley was using a "bean" shooter. Nevr trest yur spillchucker. Seriously, my IMRT SE's haven't amounted to much. I guess IP is just very sensitive to any risk of any sort of SE's. In the circumstances, I can't criticize him. Regards, Steve J __ "If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away." --Henry David Thoreau (1817-62) > Seriously, my IMRT SE's haven't amounted to much. I guess IP is just > very sensitive to any risk of any sort of SE's. In the circumstances, I > can't criticize him. I just don't think it's fair to tell someone considering RT -- IMRT or otherwise -- that it has only minor SEs, given EBRT's 50% chance of impotence -- which, BTW, may take well over a year to materialize. And even its little old 5-15% chance of permanent uncontrollable bloody diarrhea, let alone cross-mixing of our urine and bowel systems when radiation erodes their barrier, is not likely "minor" to many people. You're welcome to call my concern "sensitivity"; I call it reality, especially considering the number of people right here, let alone in Strum's experience, who weren't told hormone treatment would decimate their energy, weaken and often fracture their hips and spine, exacerbate their diabetes and arthritis, decimate their short-term memory, etc. and may cause many other SEs, some profound. RT doesn't have the same SEs, but it has its own SE profile that can't be declared "minor" until the only alternative is death, and even then that's debatable. Warning to newbies: Anyone who chooses a treatment for any major disease solely from any forum or anyone's personal, anecdotal, experience gets what they paid for . . . if they're lucky. I.P. On February 1, I.P. Freely quoted me: >>Seriously, my IMRT SE's haven't amounted to much. I guess IP is just >>very sensitive to any risk of any sort of SE's. In the circumstances, I >>can't criticize him. And replied in pertinent part: > I just don't think it's fair to tell someone considering RT -- IMRT or > otherwise -- that it has only minor SEs, given EBRT's 50% chance of > impotence -- which, BTW, may take well over a year to materialize. And even > its little old 5-15% chance of permanent uncontrollable bloody diarrhea, let > alone cross-mixing of our urine and bowel systems when radiation erodes > their barrier, is not likely "minor" to many people. If IP intended to imply that I have *ever* told anyone what they individually could expect from IMRT, he is mistaken. I have told those who inquired (1) what is on the list of possible SE's, (2) which of them *I* experienced and to what extent, and (3) that everyone responds differently. (ka-snip) > Warning to newbies: Anyone who chooses a treatment for any major disease > solely from any forum or anyone's personal, anecdotal, experience gets what > they paid for . . . if they're lucky. Exactly correct. And it applies with full effect to IP's opinions as well as mine. Regards, Steve J > On February 1, I.P. Freely quoted me: > > [quoted text clipped - 13 lines] > If IP intended to imply that I have *ever* told anyone what they > individually could expect from IMRT, he is mistaken. Wow! This short-term memory loss and heightened emotional sensitivity business is even worse than represented. It was just four posts -- a few hours hours -- ago, that BEVERLEY, not Steve, described IMRT SEs as "minor", which then became the very object of this curent discussion. Sorry, Steve, but I'm just not going to spend half my time making certain no one can misinterpret my posts. Life was too short for that 30 years ago, it's far shorter now, and even if our posts were 99.44% politically correct, .56% of readers would STILL take offense. Once again: If anyone ever thinks I'm "implying" something, s/he's probably wrong. As an ex military officer and an engineer, I seldom "imply", preferring instead to get out a 2x4 or set of equations and leave no doubts. I generally stick to facts, opinions, questions, and topical issues, try to distinguish among them, and prefer to leave tiptoeing and personalities to others. My size 13 feet fit better in boots than in slippers, and in print, slippers equate to extra pages and hours -- such as this dialogue neither of us has time for -- yet STILL leave room for misinterpretation. I.P. > Warning to newbies: Anyone who chooses a treatment for any major disease > solely from any forum or anyone's personal, anecdotal, experience gets what > they paid for . . . if they're lucky. > > I.P. You go to books for research. You go to doctors for medical advice. You go to newsgroups for support and anecdotal, personal experience. To ignore personal experience, especially multiple persons' experiences, is pure folly. My RPP came with significant SEs. Almost all dealing with the typical functioning of the penis. My RT came with very mild SEs. After almost three years, the after effects are also very mild. And may contribute to continue penis malfunction. My HT came with mild SEs. And has certainly contributed to penis malfunction. 100% of the Steve Kramers with PCa were found to have little or no problem handling RT or HT. It's a four-year study I personally performed and I'm writing about it in 2005. On February 1, Steve Kramer wrote, in pertinent part: (ka-snip) > You go to books for research. You go to doctors for medical advice. You go > to newsgroups for support and anecdotal, personal experience. To ignore > personal experience, especially multiple persons' experiences, is pure > folly. (ka-snip) > 100% of the Steve Kramers with PCa were found to have little or no problem > handling RT or HT. It's a four-year study I personally performed and I'm > writing about it in 2005. Well said! Regards, Steve J __ "The world breaks everyone and afterward many are strong in the broken places. But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially. If you are none of these you can be sure it will kill you too but there will be no special hurry." --Ernest Hemingway, author and broken man Yup. But on which source should one most strongly "choose a treatment for any major disease"? I.P. > > Warning to newbies: Anyone who chooses a treatment for any major disease > > solely from any forum or anyone's personal, anecdotal, experience gets [quoted text clipped - 7 lines] > personal experience, especially multiple persons' experiences, is pure > folly. Most strongly? That's is a variable. If one reads the right books, studies, articles, etc. then possibly the research. But, who knows which is right when they first get into their own research. If one has a good and well-informed doc without a shred of bias towards RRP or RT or personal concoctions, then the doc. But, who knows if the doc has been doing his homework? Or if the doc is biased? Or even whether or not he is good. If one has a large group of say 400 people who have experienced PCa and are of all different stages, PSAs, ages, and treatments and these 400 have been discussing and synergistically studying PCa for 3, 4, 5, 6 years.... maybe alt.support.cancer.prostate. But then, who knows which of these 400 are credible and which joined the club barely 3 months ago. The presence of PCa is an indication that a person is a man who has lived long enough to develop some wisdom regarding picking the chafe from the wheat. He should read. He should listen to his doc. He should talk to people who have been there, done that and got the t-shirt. At every step of the way, he should ask questions. And, when he has more questions, he should visit all the stops again. Then he should make a decision. > Yup. But on which source should one most strongly "choose a treatment for > any major disease"? [quoted text clipped - 13 lines] > > personal experience, especially multiple persons' experiences, is pure > > folly. Sorry about the bean shooter. It should have read "beam". LOL I'll take the MIRTH. LOL Bev > On February 1, I.P. Freely posted: > Quoting himself: [quoted text clipped - 24 lines] > however measured or far away." > --Henry David Thoreau (1817-62) There's quite a few myths about radiation and probably the most common one is that the problems will not show up for a year or more. Men who are going to have a problem/side effect it will show up very quickly and then subside. One "long" awaited side effect is on men receiving just radiation for PC and then the ejaculate takes a while to slowly fade away, usually 3-6 months but for some men it will be gone by the end of treatment. The second long term side effect is the possibility of secondary cancer from all the radiation. It is a very treatable cancer that might show up in 30 years. May my husband live long enough to have to worry about that one! As with anything, some men are not candidates for certain treatments. Brachytherapy is a prime example. You might have all the right numbers (PSA, Gleason scores, etc) and the prostate maybe too large or in the wrong position. This is a very good example as to why people need to make educated decisions and then discuss these decisions with their doctors. What is perfect for one person is not for another. But in this case Gordan's dad is facing either radiation which just might kill any remaining PC cells or HT which will only put a lid on them for a short while. As long as his health is good his chances with RT gives him a better edge on ridding his body of PC. Gordan's dad is (if I remember correctly) the same age as my husband, 59. Fifty-nine is not eighty-nine and therefore he needs to be aggressive as possible and give himself a full natural lifetime. Bev > > Years ago they aimed the radiation bean and shot the area. Yes, there were > > serious side effects! (Skin was burned, bowels were radiated, etc.) That [quoted text clipped - 26 lines] > > > serious. My radiation oncologist advised me to get an RP because of > them. Bev...From what I've read, I disagree with a couple of your points. I've interspersed my comments within your post. I'd prefer you to be right on these questions. Let me know if you have supporting info...Best wishes and good health, Ron > There's quite a few myths about radiation and probably the most common one > is that the problems will not show up for a year or more. Men who are going > to have a problem/side effect it will show up very quickly and then subside. Reference? Here's what I've read (abstract below): "Late changes in urinary, bowel and sexual HRQOL may be anticipated following BT and 3-D CRT, with improvements in some domains (e.g. urinary irritation and bowel (BT)) and deterioration in others (e.g. urinary incontinence (BT and 3-D CRT), sexual (3-D CRT) and bowel (3-D CRT))" "Late" can be 4-6 years post-RT. > One "long" awaited side effect is on men receiving just radiation for PC and > then the ejaculate takes a while to slowly fade away, usually 3-6 months but > for some men it will be gone by the end of treatment. The second long term > side effect is the possibility of secondary cancer from all the radiation. > It is a very treatable cancer that might show up in 30 years. May my husband > live long enough to have to worry about that one! 1.4% at 10 years, increasing from 5 to ten years, 15 year data awaited. These secondary cancers were carcinomas of the bladder, rectum, and lung, and sarcomas within the treatment field. The authors note that as RT techniques become more focused, energies delivered tend to increase, the two effects more or less cancel each other out in terms of accuracy of delivery. ("Second malignancies in prostate carcinoma patients after radiotherapy compared with surgery"; Cancer, Volume 88, Issue 2 , Pages 398 - 406, 2000; David J. Brenner, D.Sc. 1 *, Rochelle E. Curtis, M.A. 2, Eric J. Hall, D.Sc. 1, Elaine Ron, Ph.D. 2). American Urological Association Annual Meeting May 8-13, 2004 San Francisco, California, USA Program#/Poster#: 1185 Presentation Title: LONG-TERM OUTCOMES AMONG LOCALIZED PROSTATE CANCER SURVIVORS: HRQOL CHANGES 4 TO 8 YEARS FOLLOWING BRACHYTHERAPY, EXTERNAL RADIATION AND RADICAL PROSTATECTOMY Presentation Time: 5/10/2004 2:10:00 PM Author Block: David C. Miller, Martin G. Sanda, Rodney L. Dunn, Hector Pimentel, Howard M. Sandler, William P. MacLaughlin, John T. Wei. University of Michigan, Ann Arbor, MI, University of Michigan, Ann Arbor, MI Introduction and Objective: Long-term, patient-report HRQOL, as well as HRQOL changes more than 2 years after brachytherapy (BT), 3-D conformal radiation (3-D CRT) and radical prostatectomy (RP) have not been characterized with validated QOL instruments. We sought to evaluate long-term HRQOL changes and outcomes during the transition from early to late survivorship after localized prostate cancer (CaP) therapy. Methods: In 1999, we had used a validated instrument (EPIC) to measure HRQOL in a cohort of 1008 CaP patients (and age-matched control men) at a median follow-up of 2.6 years after BT, 3-D CRT or RP. In the current follow-up study, HRQOL for this cohort was re-assessed at a median follow-up 6.3 years (range 4-8 years). Generalized linear models were used to evaluate differences in HRQOL outcomes between each of the 3 treatment groups and age-matched controls. Results: The overall response rate was 73%. EPIC domain summary scores are summarized in the table. 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) During the follow-up interval, the greatest improvement in HRQOL was for urinary irritative symptoms among BT patients (p<0.001). Nevertheless, long-term urinary irritative summary scores remained better for RP compared with BT (p<0.01) and 3-D CRT (p<0.01). Coincident with an interval decrease in bowel HRQOL among 3-D CRT patients (p<0.01), long-term differences in bowel HRQOL were observed for RP versus 3-D CRT and BT (p<0.01). Conclusions: Long-term HRQOL outcomes vary based on type of therapy. Late changes in urinary, bowel and sexual HRQOL may be anticipated following BT and 3-D CRT, with improvements in some domains (e.g. urinary irritation and bowel (BT)) and deterioration in others (e.g. urinary incontinence (BT and 3-D CRT), sexual (3-D CRT) and bowel (3-D CRT)). In contrast to these late changes in post-BT and 3-D CRT outcomes, post-prostatectomy HRQOL was relatively stable after at least 4 years of follow-up. Stephen, I.P., Beverley, Ron, Steve, and others thank you so much for this insightful and lively discussion. There seems to be a lot of differences in opinion, but that's what discussion groups are for. What is especially good about an open discussion like this is that I manage to gather a lot of info/thoughts/points of view/well-made arguments from different sides (I am not saying I take any info for granted) and now I know exactly what questions to ask my father's doctor when I see him for the first time. I'm certainly going to ask him questions about IMRT, potential side effects like bloody diarrhea, demages to the intestines and bladder, likelyhood of the cancer still being localized vs. distant metastasis, etc. Those are all important questions. I think that if we take into account my father's age (60 - Bev, indeed very close to your husband's age), the potential benefit of the modern radiation treatment (longer remission or (if we are ultra-lucky) "eradication" of cancer) seems to outweigh the potential side effects. Like myself, my dad already has IBS (Irritable Bowel Syndrome - diarrhea and constipation), so intestinal problems/pain are something that he is already used to dealing with (although it wouldn't be quite pretty if it got even more bothersome after radiation). The risk of impotence is bad, but impotence is nothing if his life can be saved, or, at least, prolonged. Also, something I have to keep in mind when we see my dad's doctor is this question of secondary (radiation-induced) cancer. I didn't know about it, so thanks for the info. Now, it may sound weird to you that I am asking all these questions, and not my dad. It's not that he is not intelligent enough to handle these things, it's just that he doesn't speak English very well and we live in Canada where everything is English (OK,...French too :o)). Another thing about Canada: While we are lucky enough to have public health care system and don't have to pay for these major health procedures (surgeries, radiations, etc.), we don't have the benefit of choosing the best doctors, contemplating the best time for a particular treatment, etc. The waiting times are long, doctors are uber-busy, time is precious. Again, thanks a million to everybody who found the time to contribute to this thread and, please, don't mind if I come again and ask more questions. Best, Gordan > Stephen, I.P., Beverley, Ron, Steve, and others (ka-snip) > Again, thanks a million to everybody who found the time to contribute to > this thread and, please, don't mind if I come again and ask more questions. You're very welcome. And welcome to return with further news/questions/whatever. As may have been noticed, discussions can sometimes become a bit grouchy, but I think I'll not be contradicted when I say that everyone here has a brotherly feeling for others who struggle with the Devil Within, and all of us wish the best for each of us. Regards, Steve J __ "Always do right. This will gratify some people & astonish the rest." -- Mark Twain, "Advice to Youth" Hi Gordon..... I haven't been following all of this, but let me add my 2 Canadian cents worth.....see inline. > Stephen, I.P., Beverley, Ron, Steve, and others > > thank you so much for this insightful and lively discussion. >> Now, it may sound weird to you that I am asking all these questions, and not my dad. It's not that he is not intelligent enough to handle these things, it's just that he doesn't speak English very well and we live in Canada where everything is English (OK,...French too :o)). <<<< And the reason Bev and I and a few other women are on here is simply because our husbands either don't know how to use a computer, or would rather that we do the investigating. (as in *private people*) So don't worry about it. >>>>>>>>Another thing about Canada: While we are lucky enough to have public health care system and don't have to pay for these major health procedures (surgeries, radiations, etc.), we don't have the benefit of choosing the best doctors, contemplating the best time for a particular treatment, etc. The waiting times are long, doctors are uber-busy, time is precious.<<<<<<<< I assume you are in Toronto, or have access to Sunnybrook and Princess Margaret. I have to say that while my husband (Ron) was diagnosed just as they were shutting down the hospitals due to SARS, we didn't wait all that long for radiation. He had HDR brachytherapy and 25 EBRT treatments at Sunnybrook. As for Side Effects.....hardly any at all. Just some fatigue. But I wanted you to know that they are doing some marvellous treatments there and that his side effects were nothing. Had he chosen surgery, they were still operating during SARS on serious cases and he would have been in quickly. I can only say that the doctors and nurses that looked after my husband.....and there were many, and at two different hospitals......they were wonderful and caring and the BEST!! With cancer or other serious problems, they move on it!! All the best to you and your Dad.......and do come back and tell us how it goes. Cheers.....Heather (in Brampton) > Again, thanks a million to everybody who found the time to contribute to this thread and, please, don't mind if I come again and ask more questions. > Best, > Gordan Just a follow-up because I was rushing with this last post to beat a deadline. My brother-in-law was diagnosed with Pca 2 months before my husband....he had 42 EBRT radiation treatments at Princess Margaret (during SARS). His side effects were also minimal. The only holdup *we* had was that the CT & Bone scan clinics were shut down due to SARS......and that was a tad nerve-wracking. But those were unusual circumstances, to say the least. Had he needed surgery, the hospitals were still operating, but staying quiet on that. So there would have been no extra wait. As for you and your Dad......I think it is great that you will be asking a lot of questions. Thanks to the folks on here, we did too. We went into this with a lot of good information from the group and from research. We liked and trusted all of our doctors and they didn't pull any punches either. They laid it all out for us. We saw the urologist for the biopsy, an excellent medical oncologist for a second opinion, and then the radiation oncologist.....all of whom recommended (in Ron's case, I will stress) that Ron have radiation because of his age (71).....and his stats. Gleason 7, T2b, and PSA of 10. Just wanted to add that bit because I forgot it in the first post. I didn't realize you were Canadian until your last post and I see you have Rogers, so know you must be close by. All the best....Heather > Hi Gordon..... > > I haven't been following all of this, but let me add my 2 Canadian cents > worth.....see inline. > > > Stephen, I.P., Beverley, Ron, Steve, and others > >>>>>>>>Another thing about Canada: While we are lucky enough to have public > health care system and don't have to pay for these major health procedures [quoted text clipped - 29 lines] > > Best, > > Gordan Gordan, the claims I'm now seeing in this thread which clearly and diametrically contradict the PC books are getting too numerous to go into item by item. I recommend you take little from this discussion other than the FACT that this is the most complicated stuff most of us have ever encountered, and use that fact as motivation to do some serious reading in some serious sources. Unless half a dozen authors with a collective lifetime of PC experience are wrong, you're being misled by some of these posts which sound authoritative. Go to a library or bookstore and do some extensive homework, as most of us have done. No doctor will have the time to give you the information you need to make such a decision. I compressed a year's worth of doctor visits by going around the usual bureaucratic appointment system (my life depended on it), and was never rushed by any of my docs, but still had to spend months studying the books to get enough facts and opinions to make what I feel is a valid decision for my second treatment. Second, realize that many -- one widely published doctor says most -- cases of IBS are self-induced and easily curable as a trend and preventable by the episode. Ask Google for details, but the bottom line is that episodes are very often triggered by insufficient fiber and fluid in one's diet. White bread -- and the VAST majority of supermarket bread IS white bread even if it is brown and labeled as wheat bread -- is one of the worst offenders, as it plugs the intestines (constipation), then passes to release the floodgates (diarrhea), over and over. My IBS of 20 years was virtually ended by this approach, yet even the radiation oncologist whose Beemer payments depend on RT told me "the SEs are too daunting for radiation; get surgery" based on my past -- very mild -- IBS. Post-op, my docs put it even more succinctly: "with your seminal vesicle invasion and Gleason 8, you are not a candidate for RT even with negative margins." Your father's positive margins reduce even further the odds that RT will find and nail his mets (metastases). (But, of course, don't take MY word for it. Read the experts.) And, lastly, realize that your health care system, far from being free, costs you a fortune (you pay twice the income tax we do) AND swamps itself, just as ours (U.S.) will if we go with a similar system. I used our closest system to yours -- our veterans system -- and if I hadn't gotten around/through its red tape, I'd still be pursuing first-treatment ideas rather than being long healed from my surgery. I.P. > There seems to be a lot of differences in opinion, but that's what > discussion groups are for. . . . > I know exactly what questions to ask my father's > doctor when I see him for the first time. > the potential benefit of the modern radiation > treatment seems to outweigh the potential side effects. > Like myself, my dad already has IBS > Canada: While we are lucky enough to have public health care system and > don't have to pay for these major health procedures (surgeries, radiations, > etc.), we don't have the benefit of choosing the best doctors, contemplating > the best time for a particular treatment, etc. The waiting times are long, > doctors are uber-busy, time is precious. I don't keep every piece of info I read so I will direct you to http://www.cooleyville.com/ and tell you to have a good look at many of his links also check the links at http://www.phoenix5.org. Or just go to yahoo or google and type in "brachytherapy" + "prostate cancer" or "radiation therapy" + "prostate cancer" and I'm sure you'll get lots of links. Side effects: From our perspective minor compared to RP. Let's see my husband missed maybe 3 days of work because of doctor appointments in a city 2 hours away. One day for his actual seeding done on a Friday so he was good to go back to work on Monday. Which he did go in but I had my guardian angels there send him back home for an extra day of rest. He had a catheter for the actual seed implant procedure but it was removed in recovery. He's never had any incontinence. In fact he went the opposite way and was one of about 4% who do experience some minor difficulty starting his stream. And a doctor (one of the top brachytherapists/radiation oncologist in the USA) who can still count the number of patients on his two hands now has to include another digit for my husband as one of the men with ED problems. The ED the doctor feels came from a bounce of radiation on bone back out and scarred some penis tissue causing the strangest erection. Which BTW has improved with the use of the pump. (May be if we did "it" more often it would go away?) Oh, and I forgot to mention he was about 10 minutes late for work for 5 weeks while he had his IMRT. His chances of survival are the same if not slightly better than with a RP. I'd call it minor. As for the QOL you posted I read that as BT and 3-D as having less problems than the RP. It is a known fact that many men choose RT over RP because of the fewer sexual side effects aka most manage to keep their erections. That is not a good reason to choose RT. But if you understand what happens to the prostate that is radiated you will understand that urinary incontinence isn't something that can happen easily. During the actual session some men feel an irritation or a sense of urgency. That's because the prostate is tucked up right against/under the bladder. But there is a big difference between urgency and incontinence. (Years ago on the old equipment men were having their bladder blasted with radiation and therefore had some problems with incontinence during treatment phase.) The second thing is the prostate swells. (It is irritated so it swells.) When it swells think of a yeast donut that rises it swells not just outward but also inward putting pressure on the urethra and the nerves that control the bladder sphincter. This frequently makes urination difficult and painful. Thank goodness meds can control this problem - BUT! men with high blood pressure might not be allowed to take this medication so we are right back to things to discuss with the doctor prior to receiving any treatment. Also Gordan just mentioned IBS which I would think maybe irritated by RT. But that would also depend on what part of the intestines are the problem. And something simple such as a OTC "pink liquid" just might be all that would needed. But it is something that needs to be discussed beforehand. Bev Bev...From what I've read, I disagree with a couple of your points. I've interspersed my comments within your post. I'd prefer you to be right on these questions. Let me know if you have supporting info...Best wishes and good health, Ron >... His chances of survival are the same if not > slightly better than with a RP. I'd call it minor. The IMRT was 25 days for me. I asked for the 1st session in the morning and got 7:00 AM. As Inova's linear accellerator is on my way to the office, I actually gave the company some time. For the seeding, I took 4 days of sick leave. I walked out of the hospital 3 hours after they started. I could have gone to work the next day. I have a desk job so there isn't much difference between working and resting. As I had requested 4 days of leave, I just stayed home. The last 3 months - I've had the side effects from the 2nd 4 month Lupron shot (the four months was up last week), the IMRT 4 months ago, and the 97 Palladium-103 seeds three months ago. These side effects include: Feeling tired - sleeping 9-11 hours a day on weekends and 9 hours during the week. Easily exhausted - I used to walk 2 miles in my hilly neighborhood several times a week. I haven't felt up to it. I normally fly up 3 or 4 flights of stairs. When I do that, I'm drained to the point of gasping for breath and sagging into a chair. This is getting better. Stinging while "going". My standard is, can I write my name in wet concrete? I'm almost there. I can certainly write my name in snow. The 1st few weeks post seeding, I was taking Flomax, Decadron, and Aleve. Even with the drugs, the stream was slow and uncomfortable. At the 1 month radiation peak, there was a hard couple of weeks. I never felt that I was in trouble. They gave me 6 Decadron for "emergencies". I did not use them. Radiation caused ED? The Lupron has erased any interest but the machinery seems to work. > Also Gordan just mentioned IBS which I would think maybe irritated by RT. > But that would also depend on what part of the intestines are the problem. > And something simple such as a OTC "pink liquid" just might be all that > would needed. But it is something that needs to be discussed beforehand. Oh yeah, almost forgot. In this town, the Rad-docs put you on a low-bulk, soft food diet, no raw vegetables, limited well cooked vegetables. I ate a lot of mashed potatoes, canned peas, peanut butter and white bread, roast turkey, pumpkin pie. No beans or spicy foods. No citrus. They put you on Colace to keep things moving. The diet is strict for the 1st month and less so for the next two. For me, the IMRT, Seed route was easy. The major side effect that I can attribute to the radiation is getting up every hour for the 1st 3 hours and then once more about 3:00 AM. I never used to get up to "go". I read about RP and I wonder why folks go that route. Even the "it was easy" stories have me frowning. IMRT+seeds worked for me and I had lighter-than-average side effects. That could be just dumb luck or my age and health, 57 with good strength and stamina. 58 now. I'm not saying that IMRT+seeds will be easy for everyone. My primary-care doc has a patient who is catheterized 3 months after seeding. Things can go wrong. My Uro-doc said that most of his patients are opting for radiation and he expects that percentage to increase. This is a guy who does surgery and spoke for it in our initial meeting. "It's the gold standard, really good chance of a 100% cure." The Rad-doc at Inova was enthusiastic for IMRT+Seeds and cautioned me in two areas: 1) the long-term data wasn't in yet. He was looking forward to it and was contributing his data to the studies. So far, from his data and what he'd seen from other centers, Rad was about to displace surgery as the gold standard. My dad died from a stroke in his early 50's. I'm 58. The 10 year data looks pretty good to me. 2) at 57, my, er, abilities were starting to go "Bob Dole". Post-rad, it would likely be worse. Well, I'll take that chance. Like other rad patients, I'm surprised at the enthusiasm of surgical patients for surgery vice rad . I'm not knocking it but it doesn't match my experience or what I've read, which isn't that much: 1) the Johns Hopkins associated book, something about "and those who love them." Way outa date and pro-surgery. 2) the Prostate Cancer for Dummies (written by a surgeon who had the radical prostate surgery and speaks strongly for it.) 3) "the Prostate Cancer Treatment Book" Grimm, Blasko, Sylvester with a chapter by a rad-doc, Clarke, at the Northern Virginia Inova Cancer Center. The testimonials for surgery, "the catheter was only in a week", "After 2 months, I'm almost pad-free", "after a year, I only squirt when I laugh", and so on, are so differenent from the Rad experience. 6 hours after the surgery, I was pee'ing orange from the Pyridium but there might be some blood in the urine, two or three drops. A day later, I felt that I was shirking because I was on sick leave. Why am I home? I feel pretty good. At one month, I'd have to take a comfort break every 2 hours or there abouts. The guys at the next desks take smoke breaks every hour. They have to leave the building. The men's room is just down the hall. I have no right to complain. At 2 months, I'm still getting up 2 and 3 times a night to "go", what a bother! I bought some "liners" because I thought I might need them. I didn't. I carried them and spare underwear for two months. Of course, the real issue is how effective is the treatment. The rad-doc says he has the same 10-year survival rate as surgery. For me, so far, so good. < 0.1 PSA. Congratulations. Your experience seems to be textbook! I kept my husband very quiet so he didn't throw a seed. He felt fine, tired but fine. He too has a desk job, he's a computer programmer. He's back to being the camel when we travel and I'm still the one looking for potty breaks. Our feelings are about the same as yours on the RP vs RT combo. I agree the docs are now saying if RP is the gold standard then RT is the platinum standard. More and more men are going for RT. The question that does arise is that RT is not for everyone so are they using RT when they shouldn't and the man would do better with the RP?? Bev > >... His chances of survival are the same if not > > slightly better than with a RP. I'd call it minor. [quoted text clipped - 127 lines] > > For me, so far, so good. < 0.1 PSA. > Congratulations. Your experience seems to be textbook! I think I'm doing slightly better than the books say. At 57 I'm at the younger end of the spectrum for Prostate Cancer but I also "look" about 10 years younger than I am. When I first started seeing my primary care doc, I was in my early 40's. He did a BP, took my pulse, got a funny look on his face, and took my BP again. "wha-what's wrong doc?", I said. "I gotta check this again. Are you like, into, conditioning?", he said. "No." "Well, your blood pressure is at the low end of normal and your pulse is slow and steady." then he smiled and said, "My practice is mostly seniors and I'm not used to seeing these numbers." I walk the hills in my neighborhood every day and do a light workout with a "hobby" set of weights. A trivial amount but apparently enough. Presses with 60 pounds, that sort of thing. When BP machines showed up in grocery stores, I tried them and figured that they were all defective because I got numbers like 110/68 pulse 62, "this isn't normal according to the charts. This machine is junk!" At 57, I could still do pushups with one arm. I don't think I can do it now, after 8 months of Lupron. Of course, at 58, I am clocking higher BP, pulse numbers. I also drank quarts of Pepsi, iced tea, coffee, water, so maybe I stretched the drainage canals. Realisticly, I was probably in "average" condition but most of my peers are in horrible shape. So when the docs threw the Lupron, IMRT, and Palladium-103 at me, I did much better than average in comparison to the "average" 60-something, way out of shape, way overweight patient. I also followed the doc's directions to the "T", took every pill, ate only what they advised. > I kept my husband very quiet so he didn't throw a seed. He felt fine, tired > but fine. He too has a desk job, he's a computer programmer. He's back to > being the camel when we travel and I'm still the one looking for potty > breaks. Programmer? I'm a programmer too. S/370 assembly language, MVS, PL/I. C from about 1984. Rexx from 1987. Do some Lotus Notes Domino, backroom stuff for websites. I wrote a robot that updates class hand-outs, lessons, on a school's websites. It traverses a file tree where the instructors dump their documents and auto-generates the .html. I'm working on a statistics package that will report on downloads and page hits. > Our feelings are about the same as yours on the RP vs RT combo. I agree the > docs are now saying if RP is the gold standard then RT is the platinum > standard. More and more men are going for RT. The question that does arise > is that RT is not for everyone so are they using RT when they shouldn't and > the man would do better with the RP?? I know. The enthusiasm for RP reminds me of the audiophiles and their monster cable. Yes. it has its advantages but you're paying a big price and most of the advantages are likely not there. The "just wait, the side effects for radiation will show up over years." is not in the literature I've seen. I looked at "Prostrate Cancer for Dummies", the authors bend over backward to craft a positive spin for RP and still appear fair and unbiased. Their raw numbers tell a different story. "the risk of impotence is generally lower initially with radiation than with surgery, the risk of permanent impotence may still be as high as 20 percent to 40 percent: Page 151 "Nearly all men will lose all sexual potency after the standard surgery. If both sides of the nerve bundles can be saved, potency is about 40 percent to 85 percent likely, depending on which expert is consulted and the patient characteristics. If only one side of the nerve bundles can be saved, the potency probability drops to about 25 percent to 45 percent." Page 132 This is crafted spin. Normalizing the above numbers from a book that advocates for surgery: Worse case for radiation is 40% (permanently) impotent. Worse case for nerve sparing surgery where both sides are preserved is (100-40) or 60% impotent. Worse case for nerve sparing surgery where one side is preserved is (100-25) or 75% impotent. Without nerve sparing, it's 100% impotent. Best case. Best case for radiation is 20% (permanently) impotent. Best case for nerve sparing surgery where both sides are preserved is (100-85) or 15% impotent. Best case for nerve sparing surgery where one side is preserved is (100-45) or 55% impotent. Without nerve sparing, surgery is 100% impotent. Summary Radiation? 20-40% impotent, permanent. Surgery? both sides: 15-60% impotent one side: 55-75% impotent no sides: 100% impotent Some other issues. This 2003 book discusses 3D-CRT as the emerging standard for radiation and a new device the computerized shutter IMRT. At Northern Virginia's Inova Cancer Center, the standard machine is an IMRT, lead leaf shutters, conformal beam, computer driven. There are other side effects to radiation in the literature. Serious ones such as colon damage. The rad-doc at Inova said that in 10 years, they have seeded and irradiating thousands of patients, they have not had a single case of colon damage. Of course, they spent 2 hours drumming the importance of their protocols, the anti-radiation diet, into us. They also have the latest IMRT equipment. "No raw vegetables" "Do not go to a gastro-enterologist and have a procedure unless he calls us and knows your treatment history." "This machine costs ten million dollars" "We align our lasers every day. We leave nothing to chance." As for "knowing" because they can do a biopsy after the surgery, maybe. The rad-doc at Inova cautioned that if the cancer has already metasticized, the only way to know is when the PSA starts climbing. > The enthusiasm for RP reminds me of the audiophiles and > their monster cable. Yes. it has its advantages but you're paying > a big price and most of the advantages are likely not there. > > The "just wait, the side effects for radiation will show up over > years." is not in the literature I've seen. Ask Google about prostate radiation side effects. Throw out the BS and concentrate on the sites of major universities, hospitals, cancer agencies, and authors you've heard of, like Strum, Walsh, ad infinitim. You'll find that prostate removal is just as valuable as it ever was, and that while RP's SEs tend to clear up with time, RT's tend to worsen. One of the SEs that looks like a tossup early but favors RP after about seven years is death, according to the latest PC book I've read, published in 2005. And ask any PC doc, radiation oncologists included, how often they recommend radiation for Gleason 8-10 pts or pts with even modest, unrelated urinary or bowel hassles. And if a neurovascular bundle is involved, it's gotta go, whether it's via RP, RT, or a cherry bomb. In that case, guess who has a better chance of erections later -- the guy whose nerves are replaced by his sural nerves or the guy with the fried prostate. If they hadn't looked at my seminal vesicles under a microscope, they'd have missed my extra-capsular Gleason 8 cancer. And if RP fails, surgery is no longer a viable alternative. Keep readin'. I.P. IP, Why would anyone who wanted radiation take the word of someone such as Walsh who is so pro RP? I'd much rather take the word of one the top brachytherapy doctors in the world who is shy and never toots his own horn but rather allows other doctors to use his skill and knowledge to write about brachytherapy. Gleason 8-10? If Dx'ed with pretreatment biopsy most doctors will skip all the radiation and RP and go straight to HT. I hate to say this but with those grades on the Gleason at least some of the cows have left the barn. Bev > > The enthusiasm for RP reminds me of the audiophiles and > > their monster cable. Yes. it has its advantages but you're paying [quoted text clipped - 23 lines] > > I.P. > IP, > Why would anyone who wanted radiation take the word of someone such as Walsh [quoted text clipped - 7 lines] > those grades on the Gleason at least some of the cows have left the barn. > Bev Here's a personal story. When I was diagnosed and began exploring treatment options, my close circle second-guessed my choices. I was working with a guy who my primary-care doc called a "top-notch" urologist in the area. I'm near Washington DC. The Uro-doc gave me his 1 hour talk, surgery, rad, watchful waiting which he ruled out, hormones, and so on. He made a strong case for surgery saying that at my staging, age, and physical condition, I would come through it easily and very likely would have a 100% cure. The idea of the week in the hospital, the 4-6 weeks of convalescence, months-years of diapers didn't appeal to me. I have a business partner who went the surgical route. He was one hurting puppy for months. His description of the severing of the urethra and the other mechanical details were equally disheartening. In looking into options, the Uro-doc sent me to a radiation guy at the Inova Cancer center in Alexandria. He said 25 treatments from their linear accelerator followed by Palladium seeds should work for me. I later learned that their IMRT computer driven robot was beyond-the-state-of-the-art in the sense that the two pro-surgery books were describing 3D-CRT as the emerging standard and IMRT was too new to be in their statistics. The Inova rad-doc and his partners are the pro's in this area. Lots of experience, heavy into research, backed up by serious technology, and a staff that is a joy to be around. But, my close circle was biased toward surgery and pressed me to go to Johns Hopkins for the nerve-sparing surgery. "XXXX went there for his surgery." "They're top-notch." "Here's the book that XXXX recommended." "You aren't going to some community hospital where they don't know what they're doing, are you?" In fact the "community hospital" theme came up several times. We had a friend whose son was misdiagnosed at a "community hospital" and ended up in serious trouble. It was an infection or an allergic reaction or something. Well, I went the rad-route at Inova and it was what it was. Exactly as they said. The surprise was the actual seeding. I walked out of their outpatient treatment area under my own power. No courtesy wheelchair to the curb. My driver pulled up and we left. I waved goodbye. Not even a bandaid on my butt. By the next day, I was feeling pretty good. Some of that was from being juiced by the Decadron. Here's the story. XXXX is a famous guy in this area. Two years after the surgery at Johns Hopkins, he's still on pads. He's taking heavy hits of Vitamin-V so that's not exactly a success either. In contrast, I had no trouble with leaks or getting the stream started. It's not perfect, don't misunderstand. Several times, after an hour drive home, I just barely made it upstairs two flights (the garage is in the basement, the bathroom is on the 2nd floor). There is no guarentee from either Rad or Surgery but the stats for side effects favor radiation. In the extreme cases, neither rad nor surgery can do anything. In my experience, Rad is the way to go. The postings here from surgical "successes" about their pads, rashes, leaks, do not convince me otherwise. Now, Lupron is another matter. I did tolerate the 8 months fairly well but I did not want to put up with it much longer. The Lupron did drive my PSA from 10+ to 0.8 so I can't complain about that. My understanding is that either way, in the best hands, there's about a 93% success rate which is defined as cancer-free at the 10 year mark. I'm hoping that the new IMRT machines with their more focussed beams will produce far fewer side effects but it's the luck of the draw. > > > The enthusiasm for RP reminds me of the audiophiles and > > > their monster cable. Yes. it has its advantages but you're paying [quoted text clipped - 23 lines] > > seminal vesicles under a microscope, they'd have missed my extra-capsular > > Gleason 8 cancer. And if RP fails, surgery is no longer a viable I think you mean: "And if RT fails, surgery is no longer a viable" > & |
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