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Medical Forum / Diseases and Disorders / Prostate Cancer / September 2006what are long term effects of radiation therapy?
i would llike to hear from veterans of radiation therapy. what side effects are you experiencing? i hear there can be rectal leakage. i hear that side effects can show up years after the therapy. is there any recurrance of the cancer? i know there are advantages and dissadvantages but what happens over time? gary On August 29, Gary wrote: > i would llike to hear from veterans of radiation therapy. what side > effects are you experiencing? > Right now, 22 months since completion of IMRT, none that I can relate solely to that tx. > i hear there can be rectal leakage. I had mild and controllable fecal incontinence for a few weeks immediately after tx was completed. This, as I keep repeating, means zero so far as what Gary would experience. > i hear that side effects can show up years after the therapy. And I hear that SEs (exactly what SEs?) are possible but very rare. > is there any recurrance of the cancer? > Anything is possible no matter what tx is selected. > i know there are advantages and dissadvantages but what happens over > time? > There is no way to know. We all deal with this every day. I have had an excellent result three years from dx, but my onc and I are agreed that the wheels could fall off next week. One can test and test and test, as I am doing, and *still* be unsure of the future. There is no help for it, that is just the way things are. Understandably, Gary is seeking certainty. But there is no such thing when dealing with PCa, except the certainty that it will not get better if left untreated. And the certainty that all txs have SEs. One of the choices the patient (pt) must make is which SEs are least objectionable. And even then, he cannot be certain that all or any of the SEs on the list will be experienced *by him* and to what degree. If I recall correctly, I have recommended that Gary study on his own and not rely upon anecdotes on the 'net to select a tx. What works for me might harm him -- and vice versa. Regarding SEs, I hope that Gary will learn from the authoritative Prostate Cancer Research Institute here: http://prostate-cancer.org/education/education.html#side_effects Regards, Steve J "The thing is to expect nothing in particular, but (to) be aware of the lack of enforceable guarantees or enforceable contracts with nature/god/entropy as to the condition or durability of our bodies." -- Brian Brunner, PCa survivor, December 12, 2005 on The Prostate Problems Mailing List Thank you, Brian. A few supplemental notes to my post upthread: (1) There are various types of radiation therapy. I assumed improperly that Gary was inquiring about what is loosely termed "EBRT" or "External Beam RT." If he had a different modality in mind, I ask that he please let us know. (2) The very newest form of "EBRT" is a refinement of IMRT (Intensity Modulated RT) called tomotherapy or IGRT (Image Guided RT) that uses a daily CAT scan for targeting rather than IMRT's BAT (B-mode Acquisition and Targeting: ultrasound). I have recommended two men to a rad onc who uses this modality. One is delighted. As for the other, it is just a couple of weeks since completion and too early to know. (3) I doubt that here is anyone here who is so foolish and/or egotistical as to recommend any particular tx. If that's what Gary wants, it is available but I will not say where. Sorry to recite harsh facts, but all of us have been forced to deal with them. It's now Gary's turn, and everyone will try to be supportive. But the ultimate responsibility for study and preparation is his and his alone. Study, Learn, Take Charge! Regards, Steve J "The thing is to expect nothing in particular, but (to) be aware of the lack of enforceable guarantees or enforceable contracts with nature/god/entropy as to the condition or durability of our bodies." -- Brian Brunner, PCa survivor, December 12, 2005 on The Prostate Problems Mailing List Thank you, Brian. Steve i wonder what the long tem effects will be of all those cat scans they use in tomotherapy gary > A few supplemental notes to my post upthread: > [quoted text clipped - 29 lines] > Problems Mailing List > Thank you, Brian. On August 29, Gary wrote: > Steve > i wonder what the long tem effects will be of all those cat scans they use in tomotherapy > Since they are limited in scope, I doubt that there is any substantial adverse effect. But I'm no expert. Ask the rad onc. Regards, Steve J Maybe years ago (leakage) but I've not heard of it happening now with the new IMRT-type equipment. Some men find hemorrhoids irritated by RT or some urgency (bowel or bladder) right after being radiated (as in a few minutes). But long term - go ask the docs who are doing it and they will tell you "no". I think you had a Gleason 7, so brachytherapy with some sort of EBRT is probably part of the equation if you were to go that route. Radiation (EBRT) has changed considerably from what it once was 20 years ago. That's when they took an aim and shot, and things were damaged in the process, skin burnt, etc. and often there was not enough radiation to the prostate. That is what my father-in-law had for his PC. Today's equipment can hone in on the prostate and deliver a very controlled dose. They talk about leaves on the equipment that allows the radiation to be focused and rounded (I'm not sure I understand what they mean by rounded) so that they do not hit other parts and do significant damage. Recurrence can occur no matter what the treatment. If there is any prostate left behind, from surgery or failure to completely kill the prostate with RT, the prostate can become cancerous again. Also any cancer cells that may have escaped might take years to show up in significant numbers to effect the PSA. Hubby has some problems getting his stream started and takes a pill a day to fix that problem. He has some ED issues but that seems to be resolving itself with help. It's been four and half years and he's doing well. Bev > i would llike to hear from veterans of radiation therapy. what side > effects are you experiencing? [quoted text clipped - 4 lines] > > gary Beverly my gleason is 6. i am interested in imrt. it may be too new to see long term se. i'm not sure how they avoid radiating the nerve bundle. wouldn't that be subject to long term effects? > Maybe years ago (leakage) but I've not heard of it happening now with the > new IMRT-type equipment. Some men find hemorrhoids irritated by RT or some [quoted text clipped - 33 lines] > > > > gary Sorry Gary, I definitely don't want to raise that Gleason score any higher than what it is. A six is good (if you have to have cancer) then let it be a six not a seven! I don't know how they avoid the nerve bundles with EBRT. I know when they place the seeds it is carefully calculated to avoid nerves, the urethra, etc. It's also possible that the nerves can recover quickly from getting zapped. I don't have a medical background but I know that certain cells divide and repair at different rates. The object with IMRT is to catch the cancer cells as they divide, damaging the division and causing them to die. Cancer cells divide quickly. The prostate cells divide at a slower rate so they are less affected my EBRT. I have no idea about the nerve cells. The IMRT is not really new it's the same old radiation but rather how it is delivered is what makes the difference. Bev > Beverly > my gleason is 6. [quoted text clipped - 39 lines] > > > > > > gary ... > i'm not sure how they avoid radiating the nerve bundle. wouldn't that > be subject to long term effects? ... I'm not an expert, but my understanding of the theory of radiation is as follows: Cancerous cells have damaged DNA. It is the damage to their DNA that enables them to become cancerous. Normal genetic controls on cell replication, movement, and cell death are not working right. Cells with damaged DNA are much more subject to further damage than cells that are not damaged. One of the primary causes of cancer is thought to be damage to DNA replication machinery (also coded for in DNA) that corrects errors in DNA. So cancerous cells and non-cancerous cells both are damaged by radiation, but the non-cancerous cells are more effective in repairing the damage. Their DNA repair capabilities are more intact. By giving radiation doses in small amounts each day over an extended period, the idea is that the cancer cells accumulate damage while the healthy cells keep repairing themselves between doses. Damage to the cancer cells builds up. Damage to the healthy cells builds up much less. Also, damage to DNA is often most dangerous when a cell is replicating its DNA and dividing. The damage can result in still more errors during the replication and division process. Cancer cells replicate. Inappropriate replication is one of the things that makes them cancer cells. With further damage caused by radiation, the cancer cells often die during their attempts to replicate. Nerve cells do not replicate. So the damage they receive from radiation, assuming it doesn't kill them outright (and it shouldn't) doesn't as easily lead to cell death as it does in replicating cancer cells - which are especially vulnerable. In effect, I'm thinking that the nerve cells have more time to recover. That's the theory. In practice, as I understand it, the radiation oncologist is performing a balancing act between adding more radiation to get a surer kill of cancer, and not too much to so as to damage healthy tissue. They also try their best to aim the beams, or the seeds, to avoid as much healthy tissue as possible, but I don't think they can see the nerve cells and I'm not sure they really try to avoid them. Alan > my gleason is 6. > i am interested in imrt. > it may be too new to see long term se. Ta Daaa! > i'm not sure how they avoid radiating the nerve bundle. Therein lies a major fallacy in this thought process: If our nerve bundles are involved in the cancer, we WANT them destroyed. And if we don't go in there with a scope or a hand, how can we KNOW whether they're involved? Better yet, it's my impression that a surgeon's educated hands are a valuable tool in appraising the cancer's extent. > wouldn't that be subject to long term effects? I've forgotten whether ED can be a delayed SE of RT, but bowel problems sometimes are, at rates of occurrence as high as almost 50% by some authors. I'll repeat and extend my research when my PSA starts up again, but it sounds like you need answers sooner. > I wonder what the long term effects will be of all those cat scans > they use in tomotherapy I asked my rad tech this question. He said CTs produce significant radiation, but their findings generally outweigh the risks. Anecdotally speaking, my initial PC met CT saved my life by finding far more threatening colon cancer; more generally the CTs often provide useful treatment decision fodder. I'm more concerned with selecting the "best" tx for cancer I DO have than in avoiding a cancer I MAY POSSIBLY face some day. I.P. > ... >> i'm not sure how they avoid radiating the nerve bundle. [quoted text clipped - 3 lines] > hand, how can we KNOW whether they're involved? Better yet, it's my impression that a > surgeon's educated hands are a valuable tool in appraising the cancer's extent. I'm no expert, but I think that we don't ever want them destroyed. The cancer cells are prostate cells. The nerve cells are neurons. The cancer never invades the neurons. They are two entirely different types of cells. The reason surgeons remove the nerve cells is (apart from lack of skill in some cases) is because the cancerous cells and the nerve cells may be very close to each other and cannot be easily separated by surgical means. The cells are microscopic in size and can't be separated with a scalpel. Radiation doesn't have the same problem. It will hit the nerve and prostate cells equally hard if aimed at them both. However the nerve cells are more resistant to it than the cancer cells. The damage will be less. Whether it's enough less for the nerves to stay alive, repair themselves, and continue to function is another matter. > I've forgotten whether ED can be a delayed SE of RT, but bowel problems sometimes are, > at rates of occurrence as high as almost 50% by some authors. At: http://www.prostatecancerdecision.org/pdfs/side_effects.pdf they report long term problems with diarrhea as aflicting 8% of radiation patients. But I don't know their source of information. Alan > I'm no expert, but I think that we don't ever want [the neurovascular > bundle] destroyed. [quoted text clipped - 4 lines] > the cancerous cells and the nerve cells may be very close to > each other and cannot be easily separated by surgical means. I've heard and read just the opposite. Referees? I.P. One might also have perineural invasion. Ron S. ALAN IF the surgeon sees that the nerves are mixed with the cancer, wouldn't it be wise to have him preserve the nerves,since the cancer cannot be seperated, and leave the cancer for treatment by radiation? gary > > ... > >> i'm not sure how they avoid radiating the nerve bundle. [quoted text clipped - 30 lines] > > Alan Radiation would damage the nerves and may not kill all the cancer cells. High dose will destroy nerves and everything else hit stikes and low dose will probably only destoy 20% of the cancer cells. Ron S. > ALAN > IF the surgeon sees that the nerves are mixed with the cancer, wouldn't > it be wise to have him preserve the nerves,since the cancer cannot be > seperated, and leave the cancer for treatment by radiation? I can't imagine why any sane surgeon would leave behind any operable cancer s/he saw. Those tumors are sitting there pumping PC cells into our blood stream 24/7, and it's anybody's guess when and where they will flourish. Frying accessible cancerous meat involves art, science, and luck; throwing it in the trash is definitive. And even if either or both successfully eradicate that KNOWN threat, we still have to face the threat that one day a wandering PC cell will bite us in the butt -- or a lung or a rib or a brain or . . . I.P. > I can't imagine why any sane surgeon would leave behind any operable > cancer s/he saw. (Presuming, of course, there were no distant and incurable mets.) I.P. On August 31, Mike aka IP Freely wrote, in pertinent part: (ka-snip) > I've forgotten whether ED can be a delayed SE of RT, but bowel > problems sometimes are, at rates of occurrence as high as almost 50% > by some authors. Since, based upon zero, he called me a liar some months ago, I have ignored Mike. He has little of substance or reliability to say, though he is sometimes amusing and his politics are right. But I just cannot let this pass without remark, as it amounts to medical advice to a newby and could result in damage to the latter. Who, exactly, are the "authors," who write that SEs of RT (which RT?) are "sometimes as high as almost 50%"? This is the well-established Usenet demand, "PPOR," which means Provide Proof Or Retract. IOW, having asserted something as a fact, it is the burden of the writer to prove it. Trust me, kids, Mike will neither provide proof nor retract. He will tell me to look it up myself. He has done this before. In fact, I cannot recall a single instance in which Mike has documented his claims. Here's what Dr. Lisa Chaiken and her co-author, who are well established in the PCa community, say: "In summary, reported rates of long-term side effects from 3D-Conformal radiation are 2-3 times those reported with IMRT. In a separate report, Zelefsky et al compared the toxicity from 3D-Conformal vs. IMRT delivery in patients treated to doses of 8100 cGy. He noted that IMRT reduced late Grade 2 rectal toxicity to 0.5% with doses of 8100 as compared to 13% when the same dose is delivered by 3D-Conformal treatment (p=0.0001). Grade 3 rectal toxicity was reported as 0.5% with IMRT compared with 2% with 3D-Conformal, again when doses of 8100 cGy were used with each technique. IMRT manages to maximize dose to high levels, but when compared to 3D-Conformal, IMRT has significantly lower rectal and genitourinary toxicity." See: http://www.prostate-cancer.org/education/localdis/Chaiken_IMRT.html The Zelefsky article cited by Dr. Chaiken is: Zelefsky, M. et al. High dose intensity modulated radiation therapy for prostate cancer: Early toxicity and biochemical outcome in 772 patients. IJROBP 53(5): 1111-6, 2002. IJROBP = International Journal of Radiation Oncology Biology Physics There are other sources, but this will do. Regards, Steve J "What are the facts? Again and again and again -- what are the facts? Shun wishful thinking, ignore divine revelation, forget 'what the stars foretell,' avoid opinion, care not what the neighbors think, never mind the unguessable 'verdict of history' -- what are the facts, and to how many decimal places? You pilot always into an unknown future; facts are your single clue. Get the facts!" --Lazarus Long Steve, the old hands here know I've tried to remain calm, objective, and on-topic the many times you've taken your endless, baseless, deliberate, childish pot shots at me, including the many times you've thumped Strum's bible while denying his findings. I've given you public praise when it's due, which is often. But the newer club members don't know of your mental lapses, your conflicting representations of your ADT SEs, and/or your ad hominem assaults, all established by the archives, and need to know it now because you're beginning to behave like the miscreants whose internet stalking force me to hide my real identity here. I revealed my first name to you as a gesture of good will and faith after you begged for it, and you're now betraying both of those by bringing it up again. Is it any wonder I couldn't trust you with my full identity? I hope that history explains to wide-eyed newbies the tone of this reply to this, your latest misguided missile. > Since, based upon zero, [I.P.] called me a liar some months ago Steve, that is an outright, provable, deliberate lie, and you know (and the archives prove) it. Stop the libelous bullshit, you sick bastard. When I called you a liar the first time, I proved it, explained why I had to use that specific word, and explained why I had to establish that fact rather than just let it go in deference to your once-impressive technical expertise. > But I just cannot let this pass without remark, as it amounts to medical > advice to a newby and could result in damage to the latter. > > Who, exactly, are the "authors," who write that SEs of RT (which RT?) > are "sometimes as high as almost 50%"? As I referenced when I first brought it up and later when you challenged me on it . . . my sources are a dude named Walsh (page 267) and a local clinic by the name of Johns-Hopkins School of Medicine (page 45 of their 2006 Prostate Disorders White Paper), just for starters. My error was in stating that post-RT SE incidence can only APPROACH 50%; one study hit 59% for impotence. A 2003 study referenced in the J-H White Paper (page 47) placed rectal bleeding at 47% at two years post-RT. > This is the well-established Usenet demand, "PPOR," which means Provide > Proof Or Retract. IOW, having asserted something as a fact, it is the [quoted text clipped - 3 lines] > tell me to look it up myself. He has done this before. In fact, I cannot > recall a single instance in which Mike has documented his claims. Steve knows that is not true, as I have extensively and specifically referenced my sources on countless occasions, including my previous mentions of bowel SEs and in past responses to his accusation that I don't provide references. He either has very limited recall or is once again lying. Steve, I no longer care whether your incessant personal vitriol and in some cases outright lies are due to diminished sanity or to failing memory; I've reached the point I'm just not willing to waste my time on them any more. I hope you recover if and when the effects of your ADT dissipate. PLONK. If anyone else REALLY needs to see my response to future attacks from Steve, feel free to quote them in a response; otherwise I just don't care to see his increasingly irrational posts. I also sadly caution people to buy and read their own copy of Strum's ADT SE tome, as Steve is wont to distort it severely -- the fundamental basis of our disagreement. I.P. On September 4, I.P. Freely threw a tantrum and wrote, in pertinent part: > I revealed my first name to you as a gesture of good will and faith > after you begged for it, That is absolutely false. I never asked him for his name, nor did I care. Someone else asked for it. Let him check those archives. > Steve, that is an outright, provable, deliberate lie, and you know > (and the archives prove) it. (snip) If he can prove it, let him try. He won't. >> But I just cannot let this pass without remark, as it amounts to >> medical advice to a newby and could result in damage to the latter. [quoted text clipped - 4 lines] > As I referenced when I first brought it up and later when you > challenged me on it . . . That is absolutely false. > my sources are a dude named Walsh (page 267) and a local clinic by the > name of Johns-Hopkins School of Medicine (page 45 of their 2006 > Prostate Disorders White Paper), just for starters. My error was in > stating that post-RT SE incidence can only APPROACH 50%; one study hit > 59% for impotence. A 2003 study referenced in the J-H White Paper > (page 47) placed rectal bleeding at 47% at two years post-RT. He has missed the point; the subject is fecal incontinence. Maybe he should read the item that I referenced. But he won't. And he has proven me correct: he neither provided proof nor retracted. (snip) > PLONK. Aw, shucks. I guess I'll have to adjust my life, somehow. Maybe stop those constant imaginary attacks. Doesn't take criticism very well, does he? Regards, Steve J "I am under no obligation to respect your beliefs. Respect is earned; it is not an entitlement..." -- Lionel Shriver > On September 4, I.P. Freely threw a tantrum and wrote, in pertinent part: >> Steve, that is an outright, provable, deliberate lie, and you know [quoted text clipped - 3 lines] >> PLONK. > Doesn't take criticism very well, does he? Hey guys, let's all take a deep breath. We are talking about cancer, not baseball. Flame wars don't persuade the other side. Much more seriously, they may discourage some newly diagnosed fellows from hanging around here. Remember how scared we were those first few days? Watching old hands at the PCa game throw verbal turds at each other isn't gonna help these newbiews settle down and figure out how to beat the disease. Most of us have valid e-mail addresses, or can get a for-newsgroups-only addresss from hotmail, gmail, yahoo, etc.; if you are pissed at something we say, fire off an angry e-mail at us personally. But it's almost always possible in a posting to disagree with someone's statement of fact in a reasonably civil way. And if one of us feels like we've been the target of an ad hominem attack, it's simple enough to say so, decline to continue the free-for-all, and steer the discussion back to prostate cancer. Alex On September 6, Alex suggested, in pertinent part: > ....it's almost always possible in a posting to disagree with someone's statement of fact in a > reasonably civil way. > Agreed. Regards, Steve J "No man is an Island, entire of itself; every man is a piece of the Continent, a part of the main; if a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friends or of thine own were; any man's death diminishes me, because I am involved in Mankind; And therefore never send to know for whom the bell tolls; It tolls for thee." -- John Donne > if one of us feels like we've been the target of > an ad hominem attack, it's simple enough to say so, decline to continue the > free-for-all, and steer the discussion back to prostate cancer. I've done exactly that throughout the year or so Steve has continued to lob his missiles. That passive approach didn't work, and now his vendetta is impacting the propagation of accurate PC facts in this forum. I draw the line at that, and am continuously surprised how readily this forum tolerates that, thus encouraging it. Whether Steve drops the vendetta is up to you folks, not to me. I've tried everything I know of in vain, including filtering him temporarily, proving all his accusations false, ignoring his frequent jabs, praising him when due, shouldering aside his ad hominem to focus on the PC topic buried within (when there WAS one), confronting his ad hominem with facts, and even responding to his ad hominem in kind this time. Until and unless enough of you appeal to him to confine his attacks on me to fact-BASED and fact-REFERENCED complaints, he has proved he'll just keep up the BS. I back up my statements to and/or about him with facts in an attempt to obviate further argument, but as you know and the archives clearly establish, Steve knows his accusations are untrue yet repeats them every several weeks. Alex and I aren't fooled because we've seen his cycle repeat several times; newbies aren't so "fortunate", and thus haven't a clue whether his disproved claims that I make this stuff up are valid. Seems to me others here need to speak up when Steve does this, so newbies have some basis on which to base their first takes and further research. I lost all respect for and quit a huge forum when only a couple of members spoke out against a guy who relentlessly, baselessly, personally attacked many people; by the time the forum wised up and successfully peer-pressured the attackmeister to cease and desist, I and MANY other members, some of them nationally known figures in that forum's arena, were long and apparently permanently gone. The offender is gone and his gang of three have withered, but his legacy of ad hominem so despoiled the group that it will probably never recover its former glory as a large international bunch of friends enjoying their topic . . . all because the group tolerated his ad hominem for too many years. Steve's a very valuable contributor and, as we all do, supports the vast majority of his PC claims with references. But if this forum wants to remain a friendly and valid source of PC data and well-founded opinions, I shouldn't be the only one confronting his other face, the deliberate proved lies and baseless ad hominem. I've seen what that can do; passive tolerance of miscreant behavior encourages it, whether it's on the internet, in our streets and government, or between nations. I've gotten personally involved in all of those at various levels of personal risk; SURELY more of you can type out a few sentences of disapproval when Steve fires off at LEAST his most egregious lying ad hominem. He's obviously not going to stop unless more of you call him on it. Lest anyone else think they risk similar outbursts from me if they post disagreement with or dislike of me, the archives should alleviate that concern. Stavros, Tom, peter*pan, and others who have voiced opposition to me have simply expressed their honest opinions -- to which they're welcome -- of me and/or my message; all I've asked them to do in return is support their claims of what I've said or omitted with quotes from the archives . . . i.e., FACTS. I ask nothing more of Steve, but he has repeatedly and very flatly refused to comply, even when I'm just asking for data from Strum's publications he's so fond of touting and especially when I request proof of his lies about me. The problem will be everyone's but mine, as I plan to filter his posts until someone notifies me that he has posted a substantive challenge to or of me that merits a legitimate response. I'm weary of his proved and repeated ad hominem and disappointed in the group's tolerance of it. If it continues, the outcome will be the decline of Steve's credibility, my credibility if you allow him to continue his baseless character assassination unopposed, and the legitimacy and credibility of this forum. I don't see this as a war between Steve and me (that takes two people, and I don't engage in personal flame wars except as a one-line last-ditch attempt to cover every base before invoking a permanent PLONK *IF* I consider the plonkee worth the effort); I see it as a challenge to this group's willingness to resolve an issue rather than sweep it under the rug until Steve decides to uncover it again . . . and again . . . and again . . . i.e., although many of us lack prostates, we need put our remaining balls to good use. For those who'd rather I just disappeared so Steve would have no target (until someone else challenges his misstatements about SEs or otherwise crosses him) . . . let me ask just one question: Which is more important to you, facts or nice-nice? I.P. On September 6, I.P. (Mike) Freely wrote: (ka-snip) Yet another harangue about his favorite "lying bastard," me. He claims that he has proof of his allegations, has been challenged to present it, and won't. Mainly because he can't. I'm unsure what is the basis of his obsession with me. Can it be love? Naw, I think not. Can it be that he cannot tolerate criticism and thinks it's a personal attack? Could be. But I'm not, like him, able to psychoanalyze someone at a distance. I'm not going to spend a lot of time on him; he is trivial. I have research to do and brothers and sisters in adversity to help. That is *my* obsession. Regards, Steve J Epitaph for a wasted life: "He lived beneath the moon And slept beneath the sun. He lived a life of going to do And died with nothing done." -- Anonymous Just above, I posted a bit on Mike's latest harangue. Forgot to mention this: Note, everyone, that he has failed to respond to my citation of Dr. Chaiken's essay on SEs, particularly that section on rectal toxicity, which was the topic before Mike tried to redirect the debate to me. Think about it. Regards, Steve J Ignore him Steve. I'd say it's a good bet most everyone else does. I read IP's posts, I read Steve J's too and I find value in both. Sometimes we post something we'd like to take back. Sometimes what we post is read very differently from what we intended, by others. We are all in the same leaking boat. We all have the same motivation to help ourselves and help others. We could all be a bit more forgiving of each other. No one here is "evil" or out to hurt others. Let's just try to row in unison so that we all get to shore before the boat sinks...Best wishes and good health, ron >I read IP's posts, I read Steve J's too and I find value in both. >Sometimes we post something we'd like to take back. Sometimes what we [quoted text clipped - 4 lines] >try to row in unison so that we all get to shore before the boat >sinks...Best wishes and good health, ron I agree. However, something I have observed over the years in this group is a tendency for men to justify their own choice of treatment by trashing others. That is absolutely counterproductive. I have jumped ugly on one guy who never ceases to remind all of us who chose radiation how the treatment is ineffective and we're all going to die of cancer. I.P. want us to worry about our bowels coming unglued. People: all of the treatment choices are personal and subjective, according to the stage of the disease and the mind-set of the patient, and they all suck. Do your homework, consult with your family, talk to more than one doctor, choose your poison, then live with it and never look back. If you f**ed up, that's your problem, and you won't make it any better by bringing other people down to your level of misery. My $0.02 Doug Taylor wrote...snip... > I have jumped ugly on one guy who never ceases to remind all of us who > chose radiation how the treatment is ineffective and we're all going > to die of cancer. I.P. want us to worry about our bowels coming > unglued. Ouch! Yes, I remember...that guy was me. When new information appears, I'll often post it. When people ask questions, I try to answer as honestly and objectively as I can, and my answers incorporate data not opinions. I don't go out of my way to "bash" any particular treatment. Ah, and here is a post were I haven't talked about RT being ineffective. I guess I still feel a sting from that post earlier post of yours, that's why I needed to say those few sentences above. When you "jumped ugly" on me, only a few posters provided support for me. I can empathize with IP on that count. Like I.P. suggested, take it off line when it gets personal, and try to sort things out privately. If this were a corporation, IP and SJ would be asked to form a committee and report back in two weeks with an analysis of RT's effects on bowels (or whatever) that they both agree upon. The exercise would probably bring good information forward and help them bury the hatchet and realize that they are just two guys with honorable intentions...Best wishes and good health, ron >Doug Taylor wrote...snip... >> I have jumped ugly on one guy who never ceases to remind all of us who [quoted text clipped - 7 lines] >that's why I needed to say those few sentences above. When you "jumped >ugly" on me, only a few posters provided support for me. I jumped ugly as a reaction to your "radiation bashing." I didn't do it because I was a mean spirited a-hole; I did it because there is only so much "your radiation treatment was worthless; you're going do die" a guy can take in a supposed support group before he blows up. Support has nothing to do with making other patients feel foolish or miserable, eh? > Like I.P. suggested, take it off line > when it gets personal, and try to sort things out privately. WHOA! That warn't me; I strongly oppose sweeping significant and repeated forum-related problems under the rug. That merely hides them, encourages them, lets them fester, and leaves them wide open for new eruptions. Get 'em out in the open, identify the offenders and/or offenses, provide proof if there's disagreement, and apply peer pressure to achieve a solution. > If this > were a corporation, IP and SJ would be asked to form a committee and > report back in two weeks with an analysis of RT's effects on bowels (or > whatever) that they both agree upon. The arbitrator of our TECHNICAL argument should be the literature, in this case. My claims and references come straight from Strum, the PCRI, Stolz, Walsh, Johns-Hopkins, and comparable sources. The arbitrator of our personal argument should and must be the forum as a whole, and here's the issue: Do you want to allow baseless personal attacks to undermine rational, factual discourse? I've done that to the extent of one deliberately chosen word: "bastard" (I can't prove his ancestry); Steve has done it at least a dozen times over the past year. Make your choice, group. I.P. >Make your choice, group. If I don't like a guy, what he says, or how he says it, I block sender or ignore him. No need to for you to take your marbles and go home to mommy. Certain people are mature enough to regulate by themselves the content of what they read or watch. We don't need governmental controls. Your big problem is your authoritarian personality. Read this for edification: "Conservatives Without Conscience" by John Dean http://www.amazon.com/Conservatives-Without-Conscience-John-Dean/dp/0670037745/s r=1-1/qid=1157731579/ref=pd_bbs_1/103-2544991-1115017?ie=UTF8&s=books > I read IP's posts, I read Steve J's too and I find value in both. > Sometimes we post something we'd like to take back. Sometimes what we [quoted text clipped - 4 lines] > try to row in unison so that we all get to shore before the boat > sinks...Best wishes and good health, ron Very well said Ron. Alan > I read IP's posts, I read Steve J's too and I find value in both. Of course Steve provides valuable input. That's not the issue. The issue is his barrage of baseless personal attacks. > Sometimes we post something we'd like to take back. If you think I regret one word of my carefully written post, guess again. That departure from my character was 1) a deliberately considered final wake-up call to a group skating down a slippery slope towards all those other forums who allow rampant ad hominem and 2) the last idea I've had to put a stop to it in this forum. > Sometimes what we post is read very differently from what we intended, by others. I think there's little doubt about Steve's intent or mine. Steve's purpose regarding me is to destroy my credibility. Mine is to encourage and promulgate factual discourse, including squelching ad hominem IF IT INTERFERES with factual discourse, which Steve's blitzkrieg attempts to do. > We all have the same motivation to help ourselves and help others. Steve has taken on additional, nefarious baggage: personal counterattacks against those who call BS on him, even when they prove their case. If you folks want to choose ad homimen over facts to achieve a fragile peace that harms newbies making tx decisions, you'll have to do it without me. > We could all be a bit more forgiving of each other. If you thought I meant any of the next paragraph, Ron, and if I said it over and over and over, how forgiving would you be, PARTICULARLY if you were trying to help newbies make better tx choices by pointing them to vital facts being misrepresented by others, including their own oncologists? Notice how similar it is to Steve's repetitive diatribe which this forum has tolerated in silence for a year now: "You're a liar, Ron. You repeatedly make up stuff, print it, and refuse to provide any proof of same because it doesn't exist. It renders everything you say completely incredible. Your pathetic attempts to stroke people in pain are obvious, self-serving attempts to cleanse your own guilty soul and relieve your PC anguish." > No one here is . . . out to hurt others. If you can't see that Steve IS repeatedly trying to hurt/ denigrate/ discredit me because he can't handle the truth as defined by Strum and Steve's own denied yet accidentally self-revealed SEs, then you and many others are asking for the same spate of unexpected and sometimes unmanageable SEs you faced before SE awareness hit this forum, including two glaring cases (diabetes and loss of libido) right here right now. If you guys WANT me to leave, you're going about it the right way: favor baseless personal attacks over substantive discourse even when the former impairs the latter. I.P. On September 7, I.P. (Mike) Freely wrote, in pertinent part: > If you think I regret one word of my carefully written post, guess > again. That departure from my character was 1) a deliberately > considered final wake-up call to a group skating down a slippery slope > towards all those other forums who allow rampant ad hominem and 2) the > last idea I've had to put a stop to it in this forum. Well, there ya go. Mike has again revealed his *true* character. And on and on.... > I think there's little doubt about Steve's intent or mine. Steve's > purpose regarding me is to destroy my credibility. Mike has no credibility. None. What I have to say about his craziness is at best supplemental to his own posts. > Steve has taken on additional, nefarious baggage: personal > counterattacks against those who call BS on him, even when they prove > their case. Huh? PPOR. > If you folks want to choose ad homimen over facts to achieve a > fragile peace that harms newbies making tx decisions, you'll have to > do it without me. THAT would be no loss to anyone. (ka-snip) > Notice how similar it is to Steve's repetitive diatribe which this > forum has tolerated in silence for a year now: [quoted text clipped - 4 lines] > attempts to stroke people in pain are obvious, self-serving attempts > to cleanse your own guilty soul and relieve your PC anguish." WHAT?? Does Mike claim that *I* wrote that? If so, it is a despicable lie. (snip more rant) > If you guys WANT me to leave, you're going about it the right way: > favor baseless personal attacks over substantive discourse even when > the former impairs the latter. Well, I have to say that loss of Mike would be no loss. He has nothing to add to our understanding of this killer disease and how to cope with it. This is really really tiresome, but I cannot assume that readers will be objective in their judgments if I remain, as I'd prefer, silent. Regards, Steve J > Ignore him Steve. Great advice, pan*man. That would pretty much eradicate ad hominem from the forum if he would focus on the message rather than the messenger. I.P. <If you guys WANT me to leave, you're going about it the right way> We will miss you... > <If you guys WANT me to leave, you're going about it the right way> > > We will miss you... When the last guy leaves, please turn out the light. As for me, I've had enough of this thread. Today was my 20th of 30 IMRT sessions. So far, I have had zero SEs. Tom > i would llike to hear from veterans of radiation therapy. what side > effects are you experiencing? > i hear there can be rectal leakage. i hear that side effects can show > up years after the therapy. is there any recurrance of the cancer? > i know there are advantages and dissadvantages but what happens over > time? My radiation treatments were in Dec.2003-Jan.2004. I had some short term side effects, including aggravated hemmorhoids and urinary retention causing me to need to urinate frequently. Today, I still experience more rectal irritation that I think I used to. My potency also seems to be less than it was, though I'm getting older too. On the whole, I'd have to say that my subjective quality of life is pretty close to what it was before treatment. As for recurrence of the cancer, the best thing to do is try to look at statistics - though they vary wildly depending on who's statistics you read. My personal view is that well done radiation and well done surgery both produce similar outcomes. But there is a lot of dispute about that. Difficult as it is to get good statistics, anecdoctal evidence is no alternative. You will find men on this newsgroup who have failed surgery, failed radiation, or failed both. Some people argue that radiation can contribute to secondary cancers many years later. From what I understand of the science of cancer, I believe that is probably true and might be a factor for younger men in their choice of treatment. But I'm not aware of any solid data to quantify the risk and I'm not sure it's a risk that has a high enough probability to worry about. My choice of radiation over surgery had a lot to do with the caliber of the radiation oncologists I consulted as compared to the surgeon. However I also worried that the side effects, including long term side effects, of surgery would be worse than for radiation. Some men agree with that judgment. Some think it's the other way around. Even experts disagree. So here we are. We can choose to be zapped or choose to be sliced. It's a great choice isn't it? Alan > I also worried that the > side effects, including long term side effects, of surgery > would be worse than for radiation. > > Some men agree with that judgment. Some think it's the > other way around. Even experts disagree. And for good reason: it IS, as you say, a judgment, not cold science. My pads and ED are minor nuisances; a life revolving around immediate toilet access due to bowel problems would be devastating for me. I.P. Hi Gary...Here's a link to the PubMed search page. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi You can go there, type in a few keywords and read abstracts of papers that can answer any questions you pose. It is a very useful resource. You can then go to a library (or go on-line depending on the specific journal) and read the full text of any interesting abstracts. As to your specific questions: > i would llike to hear from veterans of radiation therapy. what side > effects are you experiencing? > i hear there can be rectal leakage. i hear that side effects can show > up years after the therapy. One of the better studies (it is current, sampled around 700 men, was authored by university radiologists, health science faculty and surgical faculty, and studied side effects out to 6 years post-treatment) of side effects over time is the work of Miller, et. al. J Clin Oncol. 2005 Apr 20;23(12):2772-80; Long-Term Outcomes Among Localized Prostate Cancer Survivors: Health-Related Quality-of-Life Changes After Radical Prostatectomy, External Radiation, and Brachytherapy; Miller DC, Sanda MG, Dunn RL, Montie JE, Pimentel H, Sandler HM, McLaughlin WP, Wei JT. This paper references and builds from their earlier paper that performed a similar side effect comparison roughly 2 years after treatment. You'll see that side effects do change significantly over time for many men. I've posted a Table from this paper in this NG before, I'm sure it can be found upon searching. > is there any recurrance of the cancer? All treatments have failures. From my reading of the literature it seems (but of course I may be wrong) that for low-, medium- and high-risk patients, seeds plus XBRT yields results similar to surgery. Other monotherapies lag behind these results for medium- and high-risk men. These comparisons are based upon biochemical failure or mortality studies. If by "recurrence" you mean secondary cancers caused by external radiation, these do occur. One of the better studies is Brenner's work which suggests such secondary cancers occur on the order of about 1 in 70 men treated. This study has gone out to 10 years post-treatment; numbers may increase further in the next 10 year interval. Cancer, Volume 88, Issue 2 , Pages 398 - 406; 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. 2 The full text can be obtained at Dr. Brenner's homepage http://www.columbia.edu/~djb3/#top BTW, some might say that the secondary cancer rates will go down due to more focused beam targeting. For an interesting treatment of this subject that suggests otherwise see Int J Radiat Oncol Biol Phys. 2003 May 1;56(1):83-8; Radiation-induced second cancers: the impact of 3D-CRT and IMRT; Hall EJ, Wuu CS. Finally a few other things to consider in your decision making process. 1) A good rad onc will administer an AUA test to assess any lower urinary tract issues. If you score poorly, RT in contra-indicated. 2) RT doesn't kill cells, it makes them abnormal so that other processes will kill them, if the tumor mass is dense (hypoxia, no oxygen) or if P53 is defective (mutated), RT may fail. It may be wise to have your DNA ploidy and p53 measured if you're considering the RT path, especially if you are in the high-risk grouping. 3) If you have diabetes mellitus, RT can cause complications. Discuss these issues with your radiologist...Best wishes and good health, ron >i would llike to hear from veterans of radiation therapy. what side > effects are you experiencing? [quoted text clipped - 4 lines] > > gary Nick posted a link on another thread that, among other things, has specific numbers on side effects. Whether they are accurate or not is impossible to say. The web page does not cite any sources. See: http://www.prostatecancerdecision.org/treatment_choices/side_effects.htm or for a more readable version: http://www.prostatecancerdecision.org/pdfs/side_effects.pdf for their comparison of side effects of watchful waiting, surgery, EBRT, and brachytherapy. They're showing fewer side effects from EBRT than from brachytherapy. But they don't cite sources. It's impossible to say whether this data is valid or not. Alan Gary, What do you consider a long term? I had Brachy in Spring of 2002 and IMRT is Summer of 2002. Only side effect is covered with Flomax. I believe that the reason that I still take it is that it is convenient. As fas as re-occurence, I can not help you. My primary treatment whether it was radiation or surgery would not have mattered. My PSA really never came down after primary treatment. Its undectable today after six months of trial chemo in the last half of 2003. PSA at Brachy was 6.8, Gleason 3+4. PSA at conclusion of IMRT was 9.0. Gourd Dancer >i would llike to hear from veterans of radiation therapy. what side > effects are you experiencing? [quoted text clipped - 4 lines] > > gary Chemo and Eligaard that is.... :) > Gary, > [quoted text clipped - 21 lines] >> >> gary Gary, I had the same numbers as Gourd Dancer; PSA 6.7 ,Gleason (3+4)=7 and I chose surgery and it's been 3yrs. and 2 months and I'm still undetectable. Only side effect is smaller penis but it still works. No Flomax or Chemo. You might also note that you haven't received any replies for long term side effects, that being 10+ years. Ron S. >> ... >> I had Brachy in Spring of 2002 and IMRT is Summer of 2002. Only side effect is covered >> with Flomax. I believe that the reason that I still take it is that it is convenient. >> ... Suggestion: Try gradually reducing the amount of Flowmax you take. If you take two pills a day, try one. If one works for you, try one every other day. You may be able to wean yourself off the drug or, if not, at least reduce the amount you have to take. It makes sense to clear this with your doctor, but I always figure that the fewer drugs we take, the better off we are. >> As fas as re-occurence, I can not help you. My primary treatment whether it was >> radiation or surgery would not have mattered. My PSA really never came down after >> primary treatment. Its undectable today after six months of trial chemo in the last >> half of 2003. >> >> PSA at Brachy was 6.8, Gleason 3+4. PSA at conclusion of IMRT was 9.0. I looked up your previous posts and see that you got six months of chemo and two years of ADT, starting July, 2004. Have they stopped the ADT now? I guess the real test will be when the testosterone comes back, which could take another couple of months. It looks like, even if the PSA starts to rise again, it's not because the cancer has adapted to the therapy. If it does come back, I presume you can take more shots of chemo, ADT, or both, and knock it back again. It sounds like you've got an excellent doctor who is really trying to think things out, hit the cancer hard, but not just blindly give you drugs forever. Best of luck with it. Please do keep us informed. Alan Gary Miller wrote: > i would llike to hear from veterans of radiation therapy. what side > effects are you experiencing? I still remember the 10 Electro Commandments taught in ET school at Treasure Island, ca. 1957. One stated: Beware of radiation and radioactive devices, lest thee glow in the night and frustrate thou wife. Sorry folks, couldn't resist that. nick penned: I still remember the 10 Electro Commandments taught in ET school at Treasure Island, ca. 1957. One stated: Beware of radiation and radioactive devices, lest thee glow in the night and frustrate thou wife. Sorry folks, couldn't resist that. ======> hi nick - i believe this will was the saying as i use to teach it. ~ curtis Trifle not with radioactive tubes and substances lest thou commence to glow in the dark like a lightning bug and thy wife be frustrated nightly and have no further use for thee except for thy wages. knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." http://community.webtv.net/PALMER_ENT/doc Curtis Plmer wrote: > ======> hi nick - i believe this will was the saying as i use to teach > it. [quoted text clipped - 4 lines] > glow in the dark like a lightning bug and thy wife be frustrated nightly > and have no further use for thee except for thy wages. OH! YES! That sounds like it. After 49 years it was a bit difficult remembering the exact words. (Darn, time flies. It'll be 50 years next summer that I attended ET school.) But I remembered the warning - if not the words- during my 26 years as an ET in the Naval Reserves. From: CALIFORNIA_CHIEF@PEOPLEPC.COM (NICK) OH! YES! That sounds like it. After 49 years it was a bit difficult remembering the exact words. (Darn, time flies. It'll be 50 years next summer that I attended ET school.) But I remembered the warning - if not the words- during my 26 years as an ET in the Naval Reserves. ====>hi nick - give me a private email and we can compare notes and swap sea stories. :) were you in nam? ~ curtis knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." http://community.webtv.net/PALMER_ENT/doc > ====>hi nick - give me a private email and we can compare notes and > swap sea stories. :) were you in nam? Google (which I'm using right now) truncates addresses. Youl will have to send an e-mail first, then I'll have your address. >i would llike to hear from veterans of radiation therapy. what side > effects are you experiencing? > i hear there can be rectal leakage. i hear that side effects can show > up years after the therapy. is there any recurrance of the cancer? > i know there are advantages and dissadvantages but what happens over > time? I had EBRT. I prepared for it by walking 3-5 miles a day, 3-5 days a week. When I started treatments, I went to bed one hour earlier every night and I drank gallons of water and I continued walking through the 35 treatments. By the end, I had minor incontinence that dissipated rapidly. I had minor burning in my urine that dissipated within a day or two. I had minor diarrhea that dissipated in a week or two. I had hemorrhoids that lasted for months. Occasionally, the hemorrhoids come back for a visit to remind me of an otherwise uneventful time in my life. However, I fully expect radiation deterioration in my bowels and/or urethra if I live long enough.  SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 Non Illegitimi Carborundum I had my EBRT some 2 1/2 years ago (after a RRP with a extracapsular G9) and had no SE at the time from that,BUT after 18 mths when regrowth occurred the rejoin of the Uretha to the Bladder caused a astimatic stricture. The top of the uretha was healing itself and closing. The surgeon re-opened the opening and told me that to prevent the recurrence if the stricture I had to force the opening to remain open. IE to use a catheter (self applied on a daily basis for the rest of my life (now 56) He could not re-operate as the region remained like mush after the EBRT and the sphincter can only handle so much abuse before it stops completely. If that happened it is a catheter for life. Artificial sphincters may not take if the area is mush. So a serious SE is bossible (not probable) if you have your EBRT after RRP. Best wishes Hank PSA 2000 / 2003 3.28 7.8 8.7 9.4 Biopsy Oct 02 inconclusive But poss G7 Jun 03 Gleason 8 Staging estimated at T1 RPP 1 Sep 03 Gleason 4+5=9 Biopsy Extensive adenocarcinoma; Multifaceted; Extensive perennial invasion Catheter out 16 Sep 03 and DRY 2nd opinion that a Gleason 9 is virulent and Radiation & HT in interim is scheduled EBRT Feb 04 04 to Apr 04 HT Lucron 14 Oct 03 and 16 Mar 04 (lasting 4 months ea) PSA Jun/04 <00.1 PSA Sept/04 <00.1 and no Testosterone (reading of 1.1) PSA Dec/04 <00.1 and Testosterone returning (now 12.5 of normal range of 8/27) Oct 05 Astimatic stricture PSA today <.01 > PSA Jun/04 <00.1 > [quoted text clipped - 6 lines] > > PSA today <.01 That's fantastic, Hank!!! Are you sure of the decimal? SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 Non Illegitimi Carborundum > I had my EBRT some 2 1/2 years ago (after a RRP with a extracapsular G9) and > had no SE at the time from that,BUT after 18 mths when regrowth occurred the [quoted text clipped - 10 lines] > > So a serious SE is bossible (not probable) if you have your EBRT after RRP. One more reason I'm gonna demand some proof SRT will hit and probably cure my cancer when my PC returns. The aftereffects of surgery aren't even in the same galaxy as your experience, IMO. I.P. Hi Gary, I just completed my 39th treatment and have only 3 left. I'm 54 years old. I had a PSA of 36.8 and Gleasons of 9's and 10's in 8 samples. Gs of 8's and one 7 in the rest. They took the whole prostate out. They had started ADT a month before that. I'm on ADT still today. I had a real sore rectum after 18-20 treatments, but they gave me some "proctofoam" to administer as needed. It cleared up virtually all pain. I started having to urinate often at around 30 treatments with burning in the penis, but not bad enough to make me clinch my teeth. I have acheived 1 (one) erection(small maybe 3 1/2") since RP by using Cialis, but have no.....absolutely none.....interest in sex. I don't know if it's RT or ADT. I started into this disease with a very cavalier attitude towards it. I realize now that I probably won't have to worry about social security. I've bought books by DR.s Scardino, Sturm, Walsh, and others. Read many web sites, talked to doctors and mostly read great posts here. This group has been fantastic, although some of the most informed ones sling "verbal turds" (thanks Alex, love that one) at each other. I have been guilty myself of being drawn into "group moods?", off -topic posts and making a jack-a.s of myself.(warning: for real...ADT, RT, RP, can affect mental acuity.) Like now, I'm just rambling, back to SE's. Fatigue like I didn't know existed, muscle softness, and penis receding. I don't know which tx caused what. Depression(no wonder?) On the bright side, I end RT on 09/11/06. ADT should start wearing off on or about 09/21/06. There's nothing currently left to cut out, so I should feel better soon......for a little while. David > i would llike to hear from veterans of radiation therapy. what side > effects are you experiencing? [quoted text clipped - 4 lines] > > gary The ADT is killing your sex drive. Talk to your doc about the burning sensation, he might give you a Rx that will help with that. Bev > Hi Gary, > I just completed my 39th treatment and have only 3 left. I'm 54 years [quoted text clipped - 36 lines] > > > > gary > "dave481" >> I'm on ADT still today. >> >> I have no.....absolutely none.....interest in sex. I don't >> know if it's RT or ADT. That's got to be one of the most blatant, criminal, arrogant, incompetent examples I've ever seen of a physician hiding devastating, guaranteed treatment SEs from a patient. Dave, the loss of the sex drive is hardly even a SIDE effect of ADT; it's the INTENDED effect when it's done to dogs, bulls, etc., except that it's done with a knife rather than drugs to animals because they're not given a choice. I.P. > > "dave481" > >> I'm on ADT still today. [quoted text clipped - 10 lines] > > I.P. IP, Yea, that guy is gone and I have a new one. The first physician (a uro) hardly told me a thing except,"you've got cancer, it's aggressive and we have to operate." I went around for weeks after that day thinking,"damn, this is just like geting married, they sure don't tell you everything at first!" I'll be the first to admit that I didn't know what to ask until after the fact. I'd never heard of Gleasons, but once I did, understood that fast action was required in my case. I guess he was ok as a surgeon, I'm probably 99.9% continent, but, 100% impotent also. I had Eligard 06/30/06. I think it wears off in 84-86 days after administered. I have 2 more rads. Be through Monday. Hopefully we can " watch and wait" now. I see my new uro on Tuesday. Thanks David >> "dave481" >>> I'm on ADT still today. [quoted text clipped - 8 lines] > dogs, bulls, etc., except that it's done with a knife rather than drugs to > animals because they're not given a choice. Criminal? Arrogant? Incompetent? The same thing that feeds prostate cancer feeds the sex drive. Where's the deceit? SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 Non Illegitimi Carborundum >>> "dave481" >>>> I'm on ADT still today. [quoted text clipped - 10 lines] > Criminal? Arrogant? Incompetent? The same thing that feeds prostate > cancer feeds the sex drive. Where's the deceit? In not warning a pt that ADT will destroy his sex drive. Makes me wonder whether the doc mentioned any of its other SEs . . . is he being treated or trained to prevent osteoporosis or gynaecomastia or fatigue? Even if a tx is a sole and totally necessary option, a doctor should inform and prepare the pt for it. Any doc who doesn't is one cold-hearted SOB, and, given the often-avoidable effects of osteoporosis -- including crippling in many cases and death in some cases -- damn right it's criminal if he's not receiving treatment and training to offset it. I.P. > Fatigue like I didn't know existed, muscle softness, and penis > receding. I don't know which tx caused what. Depression(no wonder?) > On the bright side, I end RT on 09/11/06. ADT should start wearing off > on or about 09/21/06. There's nothing currently left to cut out, so I > should feel better soon......for a little while. Dave, I think fatigue is a side effect of both radiation and of ADT. I would combat it with a combination of extra sleep and extra exercise. In my own case, the radiation and ADT slowed me down considerably, but I had enough reserves from lots of exercise that it mostly cut into my reserves and left me with more than enough energy for daily living. ADT wears off at different rates for different men. In my case, I had a "30 day" dose followed by a "90 day" of Lupron. I'd say the total effect lasted more like 180 days than 120 days. So don't expect immediate changes, but maybe sometime in October your testosterone will begin to slowly rise and, if your pattern is like mine, it will get back to normal around the end of November or so. Alan > > Fatigue like I didn't know existed, muscle softness, and penis > > receding. I don't know which tx caused what. Depression(no wonder?) [quoted text clipped - 20 lines] > > Alan Alan, I'm sure the exercise does help, and I haven't stuck with it. I don't gues I have to train for a marathon, I do try to just walk fast at least a mile or two every day. I'm sure I should increase a litle each week. Thank-you for the input. May non-detectable PSA plague you forever-:) David > I have > acheived 1 (one) erection(small maybe 3 1/2") Braggard!!! :-) > Like now, I'm just rambling, back to SE's. > Fatigue like I didn't know existed, muscle softness, and penis > receding. I don't know which tx caused what. Depression(no wonder?) > On the bright side, I end RT on 09/11/06. ADT should start wearing off > on or about 09/21/06. There's nothing currently left to cut out, so I > should feel better soon......for a little while. Sounds apart par for the course. I only suffered 35 treatments and was just getting into the SEs you mention. However, the were all temporary. I remember my treatments ended July 3 and I brought in a 'flag' cake for the great staff in radiology. SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 Non Illegitimi Carborundum > > I have > > acheived 1 (one) erection(small maybe 3 1/2") [quoted text clipped - 13 lines] > I remember my treatments ended July 3 and I brought in a 'flag' cake for the > great staff in radiology. Steve, funny what we CAN brag about these days-:)) A flag cake sound cool. I was thinking flowers, but they're both married, and.....well, I guess I'm like the dog chasing the car.....catch it.....then what/-:) Thanks for the reply David > -- > PSA 16 10/17/2000 @ 46 [quoted text clipped - 8 lines] > Casodex added daily 07/06 > Non Illegitimi Carborundum >i would llike to hear from veterans of radiation therapy. what side >effects are you experiencing? >i hear there can be rectal leakage. i hear that side effects can show >up years after the therapy. is there any recurrance of the cancer? >i know there are advantages and dissadvantages but what happens over >time? Chiming in a bit late. I'm 3 years post IMRT, age 52 at treatment, age 55 now. Sexual potency, libido, and enjoyment definitely affected adversely. The negative effects increased gradually from nothing immediately post treatment to not so hot a year or so later. However, Vitamin V is 100% effective for the ED. As far as bowels, no leakage or incontinence, although I seem to have an extra BM daily. Zero urinary incontinence or problems. Life goes on and we'll see what happens when the 10 year date comes along as far as recurrence. > i would llike to hear from veterans of radiation therapy. what side > effects are you experiencing? > i hear there can be rectal leakage. i hear that side effects can show > up years after the therapy. is there any recurrance of the cancer? > i know there are advantages and dissadvantages but what happens over > time? I'm hardly long term. Seeded and beamed up the wazoo in late 2004. As most, I had urinary urgency the first month or two and was getting up several times a night to pee. That problem faded by the 6th month. Since then, my stream is slower than it was but I can hit the wall from 5 feet away and can slam off the stream if I want. There was a stinging or burning at first. These symptoms reasserted themselves in the 1 1/2 year to 2 year period. I can drink 20 ounces of water and sleep through the night. When I get up in the morning, I have maybe 10 minutes and I REALLY have to go. No rectal issues of note. I was regular before and if anything, I'm more regular now, going once a day in the morning and perhaps again in the late afternoon. I'm sure there were changes but no more than my normal variation. I have erections without using Vitamin-V but they are slightly better with chemical assists. Orgasms are "adequate" but not quite as thrilling as before. I dribble about a quarter teaspoon of fluid as opposed to vigorously spurting a tablespoon. I had 8 months of Lupron and my libido has not quite recovered from that. I remain hopeful that things will improve, especially the orgasms. I expect that my libido will never be what it was but then, I am 2 years older and almost 60. -kh |
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