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Medical Forum / Diseases and Disorders / Prostate Cancer / January 2005Kinds of PSA tests
All my post-op PSAs were analyzed using Electrochemiluminescence in the same lab. Now it was suggested to me that I may want to confirm my last reading using an "ultrasensitive" test. What could it be? How widely is it available? > All my post-op PSAs were analyzed using Electrochemiluminescence in > the same lab. Now it was suggested to me that I may want to confirm > my last reading using an "ultrasensitive" test. What could it be? > How widely is it available? The "usual" PSA test has an sensitivity at ~0.1 ng/ml. There are two "ultrasensitive" tests available, the Tosoh, with a threshhold of undetectability of 0.05 ng/ml and the DPC 3rd generation Immulite, with a threshhold of 0.003 ng/ml. My local (Scottsdale, Arizona) lab uses the DPC assay. I believe that any well-equipped lab should have one or the other of the tests on their menu. The advantage of the ultrasensitive assays, per Dr. Strum, is that they give the patient and medic a longer lead time to document changes in status, "especially after radical prostatectomy or during ADT." This can be as long as two years alert time re: possible problems, with the resultant ability to take steps to control them. Whoever suggested it to SY did him a favor. Regards, Steve J PS: I wonder whether poor ol' IP had a problem figuring out this post, which was written in accordance with Usenet protocols as well as simple courtesy. ;-) Thank you, Steve. The reply from the center, where I had my surgery, said, the test manufactured by Beckman/coulter Access that runs on an immulite assay. Is this the second test you're talking about? Still, I wonder how it's relevant to my situation, if I had a two second decimal point change. It would seem that, if one buys into the velocity argument, then it's already conclusive. :( >> All my post-op PSAs were analyzed using Electrochemiluminescence in >> the same lab. Now it was suggested to me that I may want to confirm [quoted text clipped - 26 lines] >which was written in accordance with Usenet protocols as well as simple >courtesy. ;-) On January 27, SY replied to me: > Thank you, Steve. My pleasure. > The reply from the center, where I had my surgery, > said, the test manufactured by Beckman/coulter Access that runs on an > immulite assay. Is this the second test you're talking about? Dunno. "Beckman" is, IIRC, a manufacturer of scientific equipment. But "Immulite" seems to tip us off that it's the ultrasensitive test. > Still, I wonder how it's relevant to my situation, if I had a two second > decimal point change. It would seem that, if one buys into the > velocity argument, then it's already conclusive. :( Sorry, I don't follow. Must have missed something somewhere. Regards, Steve J __ "Never give in--never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy.'' --Sir Winston L. S. Churchill SY, It most certainly is not conclusive. How many times have we seen this on this newsgroup, guys driving themselves nuts with these ultrasensitive tests. I don't have my copy of Dr. Walsh's book with me, but I seem to recall that he cautioned against exactly what you are doing to yourself. Ask that lab to do two separate tests from the same vial of blood. Do you think you'll get the same reading from each? jimhoney > Thank you, Steve. The reply from the center, where I had my surgery, > said, the test manufactured by Beckman/coulter Access that runs on an [quoted text clipped - 33 lines] >>which was written in accordance with Usenet protocols as well as simple >>courtesy. ;-) Thanks, Jim. Does this mean that Walsh isn't a proponent of the velocity argument? To be honest, I'm not quite clear why they recommend this test. If, generally speaking, my operating urologist's recommendation about SRT stands, why would that matter if one has a value down to the third decimal point? As compared to .06, .077, say, is still an increase. I don't get it. >SY, > [quoted text clipped - 46 lines] >>>which was written in accordance with Usenet protocols as well as simple >>>courtesy. ;-) But only if the change is in the PSA, and real data, rather than just an issue of test accuracy or natural, short-term variations. Our testosterone, for example, varies measurably with moment-to-moment (some foods and activities influence it in minutes, for example), daily, weekly, and monthly cycles, so too much accuracy just produces a noisy signal. When my PSA starts rising from 0.006, I plan to request dual assays (repeat measurements on the same blood samples, as Jim suggests) and to use signal-processing/data-smoothing techniques if it appears necessary. Of course, if I decide to delay HT until I see symptoms, a little data noise is just that . . . in the noise. I'd say Walsh is right, that people who actually WORRY about this crap may not be best served by ultrasensitive tests. I.P. > Thanks, Jim. Does this mean that Walsh isn't a proponent of the > velocity argument? To be honest, I'm not quite clear why they [quoted text clipped - 13 lines] > >Ask that lab to do two separate tests from the same vial of blood. Do > >you think you'll get the same reading from each? I think I understand what you're saying. The issue here, however, isn't really an ultrasensitive test, per se, but the meaning of the result. If one buys into the velocity theory, then merely a consecutive series of increases warrants action. If one sees some value as a treshhold, all he needs to know is whether he had surpassed that value or not. In my case, it's sort of both. I had a series of increased values, so, at some point, I asked, "Is there some kind of treshhold in the series, reaching which one has to act?" That's how that > .06 come about. So, now I have to worry about it because I have no desire to go through radiation if it's unnecessary, or even too early. Does it make sense? >But only if the change is in the PSA, and real data, rather than just an >issue of test accuracy or natural, short-term variations. Our testosterone, [quoted text clipped - 10 lines] > >I.P. > I think I understand what you're saying. The issue here, however, > isn't really an ultrasensitive test, per se, but the meaning of the [quoted text clipped - 7 lines] > have no desire to go through radiation if it's unnecessary, or even > too early. Does it make sense? ... Simon, I did some searching on Pubmed. There are a lot of articles about salvage radiation, but hard data seems to be very limited. A number of articles state that it is useful to begin SRT sooner rather than later. However in listing the factors that should cause someone to initiate SRT, it appears that other things besides PSA are taken into account, and there doesn't seem to be a firm agreement on what PSA value is significant. Some articles talk about rising PSA. Some talk about .2 as a cutoff, some use 1.0, some use any rise at all. Some speak of "permanently" rising PSA, presumably indicating that not all apparent rises are real and lasting. All the doctors appear to be more anxious to perform SRT if there are other factors like positive margins, stage T3, or seminal vesicle involvement. Some want to do it even without those things, and some do it routinely without even waiting to see if the PSA rises. I know that none of that is very helpful to you, but I thought I'd pass it on anyway. If you and your doctor do decide to hold off SRT, you might want to get on a schedule of very frequent PSA tests so that you can spot any seriously negative values as early as possible. In my own case, I had a PSA rise in my last test, one year after radiation. My doctor is putting me on monthly tests to try to better understand whether it's a bounce or recurrence - however he also tells me that further therapy, either surgery or repeated radiation, is out of the question. So if it is a recurrence all my options reduce to how I want to do HT. Alan > > I think I understand what you're saying. The issue here, however, > > isn't really an ultrasensitive test, per se, but the meaning of the [quoted text clipped - 46 lines] > > Alan Hi SY, Alan, All, I did not see what your treatment was (RT or RP) but I personally would not get worried at all in the levels you are looking at. I was at 0.04 right after radiation with 6 months of monthly Lupron and Daily Casodex. My PSA went up from there to 0.3 in the first 1 1/2 years and then stopped. I just had a test (it is near 4 years past now) and to be sure I was seeing a real number I also stopped taking Saw Palmetto and Lycopean for the three months up to the test. My PSA went down to 0.2. I would be very happy with a 0.5 as long as it stayed there for the rest of my life. My Dr's are only worried if the number continues to rise every time but don't even start to look at it as a problem until it is going above 0.5 or more. Granted, with RP the threshold would be less, but I would still not worry with such low numbers. Dwight >Subject: Re: Kinds of PSA tests >From: DF [quoted text clipped - 69 lines] > >Dwight Radiation does not kill all the PCa right away- PSA may continue going down for up to two years, as injured PCa cells die off, and then also, some healthy prostate cells may survive. I think this was RP not RT, though, since radiation rarely gets the PSA as low as 0.06 >>Subject: Re: Kinds of PSA tests >>From: DF [quoted text clipped - 77 lines] > prostate cells may survive. I think this was RP not RT, though, since > radiation rarely gets the PSA as low as 0.06 I am guessing, but I wonder if very low values after radiation occur in men who had a combination of HT and radiation. The HT is supposed to make the cancer cells more susceptible to radiation, but if it is continued for a while after the radiation is complete, it would tend to suppress the production of PSA in what remains of the prostate. After it is terminated, the PSA could rise to higher levels as the prostate cells recover, and then it would stay there if no cancer is present. Anyone know anything about this? ... >> Radiation does not kill all the PCa right away- PSA may continue going down for >> up to two years, as injured PCa cells die off, and then also, some healthy [quoted text clipped - 8 lines] > cells recover, and then it would stay there if no cancer is present. Anyone know > anything about this? That is in fact the case. I had HT + radiation. The HT wore off (based on measurements of testosterone level) about 2 months after the end of radiation. My 1 and 3 months PSA tests came back undetectable. However my subsequent PSAs have been higher: 6 months = .8 9 monthe = .6 12 months = .9 Clearly, the HT was holding the PSA very low and it came back after the HT wore off. From what I have been told, PSA lags the recovery of testosterone. At around 2 months post radiation the HT began to wear off, but my 3 month PSA was still undetectable. It took some more months for it to come back. Alan I hope to use the hypersensitive numbers to my advantage, in that they may define PSA DT while my post-RP PSA level is still in the sub-1 or sub-2 level. If the data at those levels are too noisy, we couldn't trust them. If the PSA curve looks valid even at decimal levels, it may actually mean something, and maybe before recurrence gets too big a head start. I.P. > I would be very happy with a 0.5 as long as it stayed there for the rest of > my life. My Dr's are only worried if the number continues to rise every > time but don't even start to look at it as a problem until it is going above > 0.5 or more. Granted, with RP the threshold would be less, but I would > still not worry with such low numbers. I have read studies that have shown the lab error results from the same sample of blood to be approximately 15%. Along with the other causes of small amounts of psa results that can be in the blood, uretha, cowper gland, infections,etc., I believe there is a bit of paranoia when laymen try to interpret the psa results at such a low level. I believe some try to micro manage there prostate cancer understandably out of fear rather than examine it by looking at the big picture. When someone has lived over four years without any (significant) increase in psa, I would really be surprised if recurrence did occur and that it would be (Highly) aggressive when it did. If Sy did ever really show recurrence at this late stage, I'm sure it would be a very slow grower and he would die of other causes before the cancer ever was a problem. If he is gluten for punishment, he could go ahead with hormone or radiation treatment and deal with the side effects for the rest of his life or he could choose to do nothing and have a much better quality of life for his remaining years. My wife is an RN and has worked in Oncology and can relate many sufferings from those that have chosen the radiation and chemo route. Ron S >My wife is an RN and has worked in Oncology and can relate many sufferings >from those that have chosen the radiation and chemo route. > >Ron S So, what does she tell you about the sufferings post-radiation? I noticed you didn't state your age or what your pre-op psa, gleason and stage were and if you had any other underlying health problems. I am not a medical professional myself, only a victim that has read many of the same articles and studies as others have read but sometimes come out with a different opinion. I have read nothing that tells me there is a cure for prostate cancer, however, I have read many opinions of studies of possible and probable cures and of so called short term cure rates of three, five, seven and ten years, etc. If one can remove the prostate while the tumor is 100% contained, then I guess you could call that a cure. However, the challenge is determining if it is contained within the capsule. I see a lot of treatment options directed at controlling the PSA as a marker for controlling the growth of the cancer cells. All the research looks promising for a possible cure sometime in the future, but I see patients being used an monitored the same as a clinical trial would test any new idea. Keep in mind that most of us, due to earliar detection are not dealing with the most aggressive types of prostate cancer and therefore either have it removed or should there be recurrence a year or two down the road, monitor it to determine how aggressive it might be. Usually the longer one goes after surgery without any (significant) increase in PSA , the less likely he has an aggressive cancer. Therefore, it would usually take another eight to ten years or more before any signs would appear and another three to five before death. Most of us probably will die of something else before the cancer harms us. No study yet has shown that radiation or hormone treatment has extended the life of cancer patient beyond the ten to fifteen years that would normally occur had nothing been done. Therefore, one could avoid all the pain and suffering caused by the (treatment Options). For all the studies reported in PubMed about how effective ultrasensitive assays provide for earlier treatment options than standard assays, there is also studies in Pubmed that refute those earliar studies. The problem that laymen have with PSA results is the lack of understanding of what contitues PSA. Most seem to believe that PSA represents the amount of cancer in there blood serum. In fact, when the name Prostatic Specific Antigen was coined, it was thought that was what it measured until later studies showed that it measured other proteins as well. These minute fluctuations in Psa results are probably from these other proteins. With you being a physicion, I think it would be prudent on your part to spend some time on the oncology for with the patients for some insight. There are many unhappy stories. And all situations are different with many different techniques applied but usually with similar outcomes, (pain and suffering). The technology has changed over the years with the same promises but with the same outcome. My wife has been taking care of a gentleman recently that was diagnosed with prostate cancer in his fifties and was given radiation. Don't have the numbers on his cancer but he had no problems for fifteen years. Don't know if the radiation had anything to do with the results or not but five years ago he started bleeding from his bladder. He comes into the hospital routinely for a couple units of blood to keep him going because of the large amount of blood loss. He is told there isn't much they can do for him. The scarring of the bladder from the radiation has been bleeding for almost five years now. I'm sure when he was given the option for radiation, he would have never expected this kind of outcome. The damage from radiation is ongoing for the rest of your life, however it is minimized in most studies and artifically short cure rates are established before the full effects are reached. I believe oncologist believe you will die before the full effects kick in. That's why most radiation is given for those over seventy. As for hormone therapy, my father had his testicles removed as a treatment option. Don't have any of his numbers as this was done in another state and without my knowledge as he lived elsewhere. He died this month at almost ninty-six. It definitly effected his short term memory and caused considerable muscle loss as a result of no testosterone. To sum up, I believe our fear of recurrence causes us to put on blinders and not see the big picture, namely quality of life. Ron S Thank you, Ron. I agree with many of your points concerning the ambiguity of this whole process and, especially, our tenuous, arbitrary decisin-making. It's interesting that I don't know by heart my Gleason score, staging, and the details of my post-op pathology report, never knew. Perhaps, it's indicative of how many physicians are neglectful of their own health, but also of my desire to "forget the whole damn thing." I paid very little attention to my PSA results until they got to 6.3 and my friend-internist suggested that I should consider a biopsy. I went for it absolutely lightheartedly, convinced that it would be negative. It wasn't, but I somehow managed to shrug it off. I went for my surgery as if it was nothing more than another annoying, too early in the morning, meeting. I had very little interest in my post-op PSAs until my last summer email contact with my surgeon and the JAMA article, where he was the first author. I had a single, nominal visit with the local urologist, but didn't feel that we had much to enlighten each other. So, now I unearthed my folder with haphazardly thrown in papers. I was 54 1/2 at the time of surgery, my PSA was 6.3 pre-op, Gleason score was 3+4, stage T1c. I had no other health problems to speak of. The microscopic section of my post-op pathology reports states, "The tumor shows focal extraprostatic extension on two sections, but does not involve surgical margins or seminal vesicles. Right neurovascular bundle was sacrificed. The left, preserved." At the time of surgery, I also had a nerve graft done by a reconstructive surgeon, in hope for future erections. So, I'm almost 59 now. I have more aches and pains, am taking blood pressure and anti-cholesterol pills. So, who the hell knows when I'm going to die and from what. But I hope to have a decent quality of life for whatever time is left. I also have two young kids and I hope to hang on until my youngest graduates from high school and that means another 10 years. >I noticed you didn't state your age or what your pre-op psa, gleason and >stage were and if you had any other underlying health problems. I am not a [quoted text clipped - 62 lines] > >Ron S > So, I'm almost 59 now. I have more aches and pains, am taking blood > pressure and anti-cholesterol pills. So, who the hell knows when I'm > going to die and from what. But I hope to have a decent quality of > life for whatever time is left. I also have two young kids and I hope > to hang on until my youngest graduates from high school and that means > another 10 years. Wow! Siring children at 51 years? I imagine you had a hell of a hard time psychologically when at 54 you're dx'd with PCa.  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 Why would you say this? As I'd described earlier, not at all. I just ignored the whole damn thing. >Wow! Siring children at 51 years? I imagine you had a hell of a hard time >psychologically when at 54 you're dx'd with PCa. Ha! Yeah. Me too. I finally came to terms with it about 1? years post RPP. > Why would you say this? As I'd described earlier, not at all. I just > ignored the whole damn thing. > > >Wow! Siring children at 51 years? I imagine you had a hell of a hard time > >psychologically when at 54 you're dx'd with PCa. There's a rational, and I think sound, middle ground here: ignore it psychologically but beat it to death in terms of researching and making treatment decisions we can accept. Best of both worlds, maybe? The only sleep I've lost to this beast is time staring into this screen and into books . . . and, oh yeah, a couple of midnight diaper changes. Being told that one of my cancers WILL kill me within a few years gives me all that much reason to spend my time productively rather than worrying about it. But that's easy for me to say, I guess, until I start getting symptoms which actually impact my QOL and prove the doctors right. I.P. > Why would you say this? As I'd described earlier, not at all. I just > ignored the whole damn thing. > > > I imagine you had a hell of a hard time > >psychologically when at 54 you're dx'd with PCa. Yup, yup, yup, yup, yup, yup, yup, yup, and yup. I.P. Skating on marginal ice, but at least I'm still skating. > I am not a > medical professional myself, only a victim that has read many of the same > articles and studies as others have read but sometimes come out with a > different opinion. > I have read nothing that tells me there is a cure for > prostate cancer. > If one can remove the prostate while the tumor is 100% contained, then I > guess you could call that a cure. However, the challenge is determining if > it is contained within the capsule. > No study yet has shown that radiation or hormone > treatment has extended the life of cancer patient beyond the ten to > fifteen years that would normally occur had nothing been done. > Therefore, > one could avoid all the pain and suffering caused by the (treatment > Options). > With you being a physicion, I think it would be prudent on your part to > spend some time on the oncology floor with the patients for some insight. > There are many unhappy stories. And all situations are different with many > different techniques applied but usually with similar outcomes, (pain and > suffering). > The technology has changed over the years with the same > promises but with the same outcome. > My wife has been taking care of a > gentleman recently that was diagnosed with prostate cancer in his fifties [quoted text clipped - 3 lines] > however it is minimized in most studies and artifically short cure rates > are established before the full effects are reached. > As for hormone therapy, . . . I believe our fear of recurrence causes us to > put on blinders > and not see the big picture, namely quality of life. "All the doctors appear to be more anxious to perform SRT if there are other factors like positive margins, stage T3, or seminal vesicle involvement." Alan, since I am at the point of deciding whether or not to have SRT, I am very interested in this topic. Everything I've read suggests that, while positive margins are an indicator of local-only disease, which responds well to SRT, seminal vesicle involvement [OK, I'm going to be bold here and establish the acronym SVI for "seminal vesicle involvement"] is an indication of systemic disease and is a strong negative predictor for SRT. I understand that the spongy, vascular nature of seminal vesicle tissue makes it an effective emitter of PCa cells. My urologist sent me an article from Renal & Urology News ostensibly to reinforce my previous decision to have SRT but he forgot that I had SVI. The article stated: "PSA levels above 1.0 ng/mL and seminal vesicle involvement independently predicted failure to respond to salvage radiotherapy." The article also referred to a Sloan Kettering study that concluded that "Gleason grade, lymph node invasion, and seminal vesicle involvement predicted salvage radiotherapy relapse." Positive margins and a long PSADT were positive predictors. Since SRT may very well destroy my remaining potency, I am thinking that I will forgo it. I wish there was some alternative Tx for recurrent PCa. Bill Denton RP 2/12/02 Memphis > [OK, I'm going to be > bold here and establish the acronym SVI for "seminal vesicle > involvement"] > Since SRT may very well destroy my remaining potency, I am thinking > that I will forgo it. Bill, Forgoing SRT, especially with SVI, if your PSA indicates otherwise is a bolder move. Last I recall, your PSA was hovering at the .4 mark. If it has gone up in the last few months, I would give some serious consideration to life over a possible suspension of sex. 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 > "All the doctors appear to be more anxious to perform SRT if there are > other factors like positive margins, stage T3, or seminal vesicle [quoted text clipped - 21 lines] > that I will forgo it. I wish there was some alternative Tx for > recurrent PCa. Bill, I wish I knew what the right thing to do is, and I wish the doctors knew. But I think the doctors are only able to make educated guesses. Nobody seems to know for sure whether anyone will respond to SRT or not. I will say that, if you go on long term HT, libido will become problematic for you. If you think SRT has any chance to cure you, then, even from the point of view of having a sex life, you may be better off with SRT than without it. The best of all possible outcomes would be if the SRT knocked out the cancer while doing minimal damage to your potency. The worst of all would be if the SRT failed to stop the cancer and damaged your potency and or had other negative side effects. I think if it were me, I'd agree with Steve and go for the SRT. But it's a personal decision, not a scientific one. Alan (snip) > I had a series of increased values, so, at some point, I asked, "Is > there some kind of treshhold in the series, reaching which one has > to act?" That's how that > .06 come about. So, now I have to worry > about it because I have no desire to go through radiation if it's > unnecessary, or even too early. Does it make sense? Yup. FWIW, the American Society for Therapeutic Radiation and Oncology (ASTRO) defines PSA failure as being three consecutive increases in PSA level following treatment. Doesn't say how much, so I conclude that it's any amount. That, it seems to me, is where the ultrasensitive PSA test proves its utility; it permits a better focus on the PSA dynamics. It seems to me that the first PSA test that shows an increase from its predecessor should alert one to retest on a shorter schedule; perhaps 30 days. That's what my well-respected med onc has prescribed. Regards, Steve J __ "Everyone is in favor of free speech. Hardly a day passes without its being extolled, but some people's idea of it is that they are free to say what they like, but if anyone says anything back, that is an outrage." --Sir Winston L. S. Churchill But the ultrasensitive PSA test also allows us to overreact to noisy data, precisely why Walsh warns against it. I.P. > the American Society for Therapeutic Radiation and Oncology > (ASTRO) defines [quoted text clipped - 6 lines] > predecessor should alert one to retest on a shorter schedule; perhaps 30 > days. That's what my well-respected med onc has prescribed. > > > (snip) [quoted text clipped - 14 lines] > That, it seems to me, is where the ultrasensitive PSA test proves its > utility; it permits a better focus on the PSA dynamics. That is when radiation was the primary therapy. Usually, the levels following radiation drop to a lowest value, called a nadir, and we hope they stay approximately at that level. But the level is usually high enough that ultrasensitive testing wouldn't be relevant. I've seen some reports of very low levels after radiation, so perhaps this is changing. But I think you have to be careful to qualify any statement of this kind according to the specific details of the treatment. The ASTRO criteria wouldn't necessarily apply for men having had RPs who have ultrasensitive tests. > It seems to me that the first PSA test that shows an increase from its > predecessor should alert one to retest on a shorter schedule; perhaps 30 [quoted text clipped - 10 lines] > that is an outrage." > --Sir Winston L. S. Churchill > FWIW, the American Society for Therapeutic Radiation and Oncology > (ASTRO) defines > PSA failure as being three consecutive increases in PSA level following > treatment. Doesn't say how much, so I conclude that it's any amount. > That, it seems to me, is where the ultrasensitive PSA test proves its > utility; it permits a better focus on the PSA dynamics. I concur wholeheartedly with the definition. However, should their be a caveat as to a minimum under which this definition does not necessarily apply? I doubt very much that anyone has ever proven that velocity in the 100ths of a nanogram range is an indicator of cancer. The size of the cancer, the newness of the velocity theory, the newness of the ultrasensitive tests, et al. all go against this being proven. 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 >> FWIW, the American Society for Therapeutic Radiation and Oncology >> (ASTRO) defines [quoted text clipped - 9 lines] > cancer, the newness of the velocity theory, the newness of the > ultrasensitive tests, et al. all go against this being proven. For radiation patients, who still have a prostate, there is likely to still be some PSA and some natural variation in PSA. My current rad onc claims that natural variation in PSA can be as much as 30% from day to day based on such factors as recent sex or other stress to the prostate. The ultrasensitive tests therefore seem to be poor indicators of real underlying change. Of course it's different for RP patients who shouldn't have a prostate and shouldn't have PSA. Alan > I think I understand what you're saying. The issue here, however, > isn't really an ultrasensitive test, per se, but the meaning of the [quoted text clipped - 7 lines] > have no desire to go through radiation if it's unnecessary, or even > too early. Does it make sense? Right. I forgot about the radiation alternative. That seems to me to be a more reasonable choice. But the crucial question is what you lose by waiting, even in that case. So you need to find out from your doctor whether the rate of increase as shown by ultrasensitive testing can distinguish between likely local recurrence and distant recurrence. You also need to find out how important it is to start radiation early. Walsh, at least in 2000, reported on evidence that it doesn't hurt much to wait. >>But only if the change is in the PSA, and real data, rather than just an >>issue of test accuracy or natural, short-term variations. Our testosterone, [quoted text clipped - 10 lines] >> >>I.P. >> I think I understand what you're saying. The issue here, however, >> isn't really an ultrasensitive test, per se, but the meaning of the [quoted text clipped - 14 lines] > recurrence. You also need to find out how important it is to start radiation early. > Walsh, at least in 2000, reported on evidence that it doesn't hurt much to wait. I haven't got a citation here, but I recall reading studies on Pubmed indicating that early SRT is more likely to work than later SRT. So I wouldn't wait too long to make a decision. Simon, I know this is a terribly difficult decision to make. You're caught between the proverbial rock and the hard place. Best of luck to you whatever you decide to do. Alan > I think I understand what you're saying. The issue here, however, > isn't really an ultrasensitive test, per se, but the meaning of the [quoted text clipped - 7 lines] > have no desire to go through radiation if it's unnecessary, or even > too early. Does it make sense? Makes perfect sense to me. Though radiation is about the easiest treatment I've gone through for anything in my life, it does have some later SEs that should prevent someone from just throwing themselves into it. 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 Yes, he is a proponent of the velocity argument. But your readings are so infinitesimally small that you must consider the margin of error, and question whether your readings show any change at all. All the readings you have quoted are less than 0.1 ng/ml. If I had readings of <0.1 (and I do, but I don't know or care what they are to the second or third decimal point), I would be satisfied with the conventional wisdom that I was cured. jimhoney standard RRP age 52, cured > Thanks, Jim. Does this mean that Walsh isn't a proponent of the > velocity argument? To be honest, I'm not quite clear why they [quoted text clipped - 53 lines] >>>>which was written in accordance with Usenet protocols as well as simple >>>>courtesy. ;-) > Thanks, Jim. Does this mean that Walsh isn't a proponent of the > velocity argument? If you look in Walsh's book, you will see he is quoting an expert on the matter, Daniel W. Chan, at Hopkins, who, Walsh says, is an internationally recognized expert on the subject. It isn't that they don't consider velocity important, but that they don't believe those very low levels can be reliably measured for clinical purposes. But there are certainly advocates of using the ultrasensitive tests, and they are usually people who believe in starting HT early rather than late. In certain cases, it is my impression that there is some positive evidence in favor of that, but I don't think it is generally accepted by all the experts that it is the best policy in general. Note that Wlash's book was written in 2000, so it is possible that he and his colleagues at Hopkins have modified their views somewhat since then. > To be honest, I'm not quite clear why they > recommend this test. If, generally speaking, my operating urologist's > recommendation about SRT stands, why would that matter if one has a > value down to the third decimal point? As compared to .06, .077, say, > is still an increase. I don't get it. If you have enough measurements, you may be able to detect a significant rate of increase in spite of the measurement noise. In certain cases, at least, there may be an argument for starting HT as soon as possible, although I think that is still controversial. If you aren't going to do that, then it is not clear to me why you would want to do the ultrasensitive testing, except perhaps just for the additional information. That would have to be balanced against the anxiety in the patient about small changes from test to test. You should ask your doctor just how he would determine that there is a steady increase, above the noise level, and just what he would recommend in that case about further treatment. If he would recommend HT, ask him why he thinks it would be necessary then rather than waiting for clinical symptoms. Finally, you might also try to get another opinion from a doctor who has a different take on things. That way you can try to figure out just what is important to you. Do you want to try to kill the thing off or slow it down, knowing that it may or may not work, or are you more concerned about the side effects of HT and are willing to wait for the PSA to rise to a much higher level before starting it? Unfortunately, the science here is not entirely clear, so you have to make your choice on the basis of uncertain information. >>SY, >> [quoted text clipped - 46 lines] >>>>which was written in accordance with Usenet protocols as well as simple >>>>courtesy. ;-) "Leonard Evens" <len@math.northwestern.edu> wrote > > If you have enough measurements, you may be able to detect a significant > rate of increase in spite of the measurement noise. In certain cases, [quoted text clipped - 3 lines] > ultrasensitive testing, except perhaps just for the additional > information. How about for estimating PSA DT while the post-treatment PSA is still very low? I'd be a lot more inclined to follow my doctor's advice for early adjuvant HT -- if he could show me any proof it does much good -- if my PSA clearly showed a DT < 12 months, even if it went .006, .012, .024, .048, etc. I'd surely rather catch it at ultrasensitive levels that wait 'til my PSA sez "1, 2, 4, 8, who'm I gonna assassinate?" I.P. Leonard, I reread what you said yesterday, from where I excerpted below, and have given it a bit more thought. I think the issue isn't in measuring down to the third decimal. The second decimal, and maybe even the first, may be sufficient at the moment, as long as there is no laboratory error, of course. The issue is in what these numbers mean in terms of deciding on what to do with them. The vast majority, if not all, published papers in medicine report results as significant, meaning "statistically significant." That is very different from "clinical significance" and that's what usually is not known to anybody. And that is exactly what people like you and me need to know to make intelligent decisions. >It isn't that they >don't consider velocity important, but that they don't believe those >very low levels can be reliably measured for clinical purposes. > Leonard, I reread what you said yesterday, from where I excerpted > below, and have given it a bit more thought. I think the issue isn't [quoted text clipped - 11 lines] >>don't consider velocity important, but that they don't believe those >>very low levels can be reliably measured for clinical purposes. I agree. Studies apparently showed that the increase in risk of heart attack and stroke was (statistically) significantly higher in people using VIOXX than in people using a placebo. But that doesn't mean that for a specific patient, the increase in risk would be "clinically" significant. The patient may have serious gastric problems when using the simpler NSAIDs and find that VIOXX really helps without such problems. She may also not be at special risk for heart disease or stroke. Indeed, she might find her physical activity severely limited if she can't use VIOXX, and that might actually increase her risk of cardiovascular disease more than the VIOXX would. For that patient, VIOXX might be an appropriate therapy. (You may have deduced I have a specific person, a friend, in mind.) VIOXX should be made available for a limited number of patients for which it is acceptable. The mistake was pushing it as a universal substitute for the less expensive, older NSAIDs. That resulted from economic considerations, not the best health policy. Now the manufacturer is going to pay a price for its ill conceived policy. It's a tricky thing, in that, from the public health point of view, FDA has to act on the basis of merely statistical significance. But, as you said, whether there is a danger to any given patient, nobody knows that. >Studies apparently showed that the increase in risk of heart >attack and stroke was (statistically) significantly higher in people [quoted text clipped - 13 lines] >health policy. Now the manufacturer is going to pay a price for its ill >conceived policy. Walsh's book is over 5 years out of print. These new tests have been used the last 4 years. I agree with Steve Jordon of having the Ultrasenstive test that he explained in his last post. Tom B in PHX > SY, > [quoted text clipped - 46 lines] > >>which was written in accordance with Usenet protocols as well as simple > >>courtesy. ;-) Nope. It's those endless, multi-page regurgitations ending in a buried 'Me, too" or "Thanks" that violate both common sense and published netiquette. But, really . . . I had just read the question 10 seconds earlier; I have no problem remembering it that long even at my age, and prefer to have the option, rather than the obligation, to scroll through a long post again. Maybe if and when I decide HT is more inportant than a memory I'll believe bottom-posting makes sense under a long regurgitation. If top-posting is good enough for Newsweek's "Perspectives" page, it's good enough for me. I.P. "Stephen Jordan" <mycroftscj@earthlink.net> wrote > > PS: I wonder whether poor ol' IP had a problem figuring out this post, > which was written in accordance with Usenet protocols as well as simple > courtesy. ;-) Guys, thank you very much for the info and your opinions. Last night, I lied and bed and couldn't sleep, all kinds of thoughts running through my head. Perhaps, a special irony of my situation is that I'm, myself, a physician. No, not a urologist, oncologist, or radiologist, but I've been in and around medicine for the last 33 years. And so, for good or ill, I know how physicians think. What patients hear in our offices and what they sometimes so blindly rely on is, more often than not, a matter of personal experience and opinion, partially digested information, non-critical reading of literature, conversations with colleagues, and all sorts of other not quite strictly scientific stuff. The miracle is that it works so often, more often, perhaps, because of the patients' own factors than because of our knowledge and recommendations. So, in my professional life, I was endlessly surprised how trusting patients are, how much they rely on what "my doctor said". One would think that, in comparison, I'm in a privileged position. I studied statistics and methods of critical reading of research papers, so one would think that I can go to the actual sources and make my own conclusions. Well, yes and no. In my career, I've read a multitude of studies of varied methodological quality, but even the best of them cannot give a clear answer, clear recommendation to a particular, single individual. As many of you here know, the results are presented as probabilities, applicable to groups rather than to specific individuals. And even then they so often contradict one another. So, I get tired of trying to find "the right answer" when there is none. And, finally, just like my and my colleagues patients, I feel like I want to find some authority figure to whom I can delegate my decision-making and entrust my future. Let them decide. Let them take over. Super-sensitive test? Okay. It's worthless? Okay. >.06? Okay. Wait until 1.0? Okay. SRT? Okay. No SRT? Okay. So what if they don't know the right answers? Neither do I. Nobody does. So, I'm tired. Give me an authority figure, a Daddy, a Mommy, whom, I can convince myself, I can blindly trust. > Guys, thank you very much for the info and your opinions. Last night, > I lied and bed and couldn't sleep, all kinds of thoughts running [quoted text clipped - 34 lines] > does. So, I'm tired. Give me an authority figure, a Daddy, a Mommy, > whom, I can convince myself, I can blindly trust. Well, as you know, a doctor who treats himself has a fool for a patient. Aside from that, I guess you have to find some physician whom you trust for other reasons and let him (or her) look objectively at the situation and give you advice and choices. Then make your choice and live with it. There is no other way. In decision theory, where there is no clearly preferable way to go, it turns out that it is perfectly rational to flip a coin. None of us can actually do that when faced with prostate cancer, so we find out what we can, we ask everyone who might know, and then eventually something strikes our fancy, and we use that to make the choice. It may just be an emotionally satisfying way to figuratively flip a coin, but it does settle the matter. Thanks, Leonard. The problem with people like me is that it's so hard for us to get off of our high "scientific" horse, to think that we know how things really are and should be--even though we really have no reason to see ourselves on that horse, in the first place--and just be content with what the rest of the world is. We also tend to define good physicians not as "good doctors", but as competent technicians, so once we admit that all "technics" are far from perfect, we don't have much left to go on. >Well, as you know, a doctor who treats himself has a fool for a patient. > [quoted text clipped - 10 lines] >an emotionally satisfying way to figuratively flip a coin, but it does >settle the matter. > > Guys, thank you very much for the info and your opinions. Last night, > > I lied and bed and couldn't sleep, all kinds of thoughts running [quoted text clipped - 49 lines] > an emotionally satisfying way to figuratively flip a coin, but it does > settle the matter. Well put by Leonard. For myself I made the decision after reading Dr. Walsh's book, Guide to Surviving Prostate Cancer. The path was so logical that I could not ignore it. My BIG problem tonight is the hic-ups. I rarely get them but when I do it's very frustrating. For now I will leave you to concentrate on my problem. Dale J. SignatureEmail: dalej2@mac.com > I've read a multitude > of studies, but even the best of them [quoted text clipped - 4 lines] > So, I get tired of trying to find "the right answer" when there is > none. . . . I want to find some authority figure to whom I can delegate my > decision-making and entrust my future. Let them decide. Let them > take over. . . . Give me an authority figure > whom I can convince myself, I can blindly trust. I found such an authority figure. My urologist/surgeon/oncologist recommended, and other urologists concurred, even insisted, that he should be the one person to decide my cancer treatment and my fate. So far I trust this person more with my own bottom line than I do any of the several physicians I've consulted and the dozens I've read. Every fresh study or internet source he finds lends increasing support to his original inclination months ago, which increases my faith in his credibility in my case. He's also readily accessible to you, as he lives in your neighborhood. He's apparently a Frenchman, as his name is "Moi". I.P. Feely On January 28, I.P. Freely responded to Dr. SY: Quoting him: "So, I get tired of trying to find "the right answer" when there is none. . . . I want to find some authority figure to whom I can delegate my decision-making and entrust my future. Let them decide. Let them take over.. Give me an authority figure whom I can convince myself, I can blindly trust. IP wrote: > I found such an authority figure. My urologist/surgeon/oncologist > recommended, and other urologists concurred, even insisted, that he should [quoted text clipped - 6 lines] > > He's apparently a Frenchman, as his name is "Moi". IP is right. I most sincerely wish that we could rely absolutely upon our medics always to do the right thing. It would certainly simplify my struggle, and I suspect that my brothers here feel much the same. But the awful fact is that we cannot. And some of us have friends who are on the way to a hellish existence because they do so rely upon their medics and *will not* listen to reason nor learn about their disease. So some -- not enough -- of us read and study and take command of our situations. And some of us try as best we might to help our brothers who are suffering. We must examine with a critical eye what our medics do and what they propose to do. The decision regarding the next steps is ours and ours alone, whether we want or seek the responsibility or not. It is an unfortunate fact IMO that some medics fail to fulfill our expectations of professional competence. They must then be discharged. There is no reason to consider their feelings; how many consider ours? We have hired these workmen/women to provide an expert service. If they fail to do so, they must go. Of course, if we have not studied and learned about our enemy, we may not know that our medic fails to meet the standard of competence. Now my latest: I sent to my rad onc a copy of Dr. Strum's response to my Prostate Digest posting on p2p (Physicians to Patients), requesting his comment. He refused to read it. He was patronizing and offensive. This confirms his arrogance, about which I had heard from other patients. Therefore, having taken command of my case, I have fired him. I don't have to put up with this crap, and I won't. As Dr. Strum says, "MD does not mean 'Medical Diety.'" Regards, Steve J __ "You must pay for conformity. All goes well as long as you run with conformists. But you, who are honest men in other particulars, know that there is alive somewhere a man whose honesty reaches to this point also, that he shall not kneel to false gods, and, on the day when you meet him, you sink into the class of counterfeits." -- Ralph Waldo Emerson I agree with you, but I didn't have competence in mind. Where in medicine there are fairly proven facts, it's relatively simple to determine if the physician is competent or not. I had in mind something more like the initial treatment for PC dilemma, where one goes to a surgeon and hears the surgery recommendation, fueled by quite a bit of data (as it is) and a pretty deep conviction. Or one goes to a radiologic oncologist and hears a different recommendation, fueled by another set of data and no less deep conviction. And it's not that one or the other is wrong or incompetent. Similarly, with my own dilemma at the moment. I have no reason to doubt the authors of the 2004 JAMA paper on SRT. But then to the "early SRT treatment", comes the follow-up question, "How early?," and then we're back to the tea leaves. How is one to decide, keeping in mind the long-term prognosis? And how does the unclear benefit of "early" weighs against the possible, more short-term side effects of radiation? So, as you can see, it's back to square one, pie-in-the- sky. On Fri, 28 Jan 2005 23:57:38 GMT, Stephen Jordan >I most sincerely wish that we could rely absolutely upon our medics >always to [quoted text clipped - 41 lines] >him, you sink into the class of counterfeits." >-- Ralph Waldo Emerson That's why my doctors recommended that I -- and I did -- consult all three specialties. The vote for RP in my case was 4:0 -- surgical oncologists, radiation oncologists, medical oncologists, and moi -- in favor of RP. That's what I call a no-brainer. My far tougher dilemma concerns adjuvant therapy, yet once again -- so far -- no experts strongly oppose my heavily-researched choice. Much of this PC business really is a personal CHOICE, not a medical mandate. I.P. > I had in mind > something more like the initial treatment for PC dilemma, where one [quoted text clipped - 3 lines] > fueled by another set of data and no less deep conviction. And it's > not that one or the other is wrong or incompetent. I see Steve's point well, but my comments were intended to apply to even the excellent doctors, simply because they do not walk in our shoes, thus shouldn't make life-determining decisions for us in an issue as indolent as PC. I have no complaints about the past half-dozen doctors I consulted or the whole interdisciplinary university tumor board which discusses my case often, and they agree that only I can decide which means more to me post-RP . . . QOL or a few extra months of heartbeat. In fact, they recommended HT, then gave me a major homework assignment: research it and come back next month with your results and opinions. That implies to me they are well aware of how personal these decisions are, and they reinforced that impression by not taking exception to a single fact, opinion, or conclusion in my very detailed response. As is each of you, I'm unique. With a menu of several treatments and well over a dozen significant probable or possible SEs, the combinations run in the hundreds, so there often IS no "right" answer -- i.e., no answer someone else can dictate to us. I.P. > On January 28, I.P. Freely responded to Dr. SY: > [quoted text clipped - 66 lines] > him, you sink into the class of counterfeits." > -- Ralph Waldo Emerson > So, I get tired of trying to find "the right answer" when there is > none. And, finally, just like my and my colleagues patients, I feel [quoted text clipped - 5 lines] > does. So, I'm tired. Give me an authority figure, a Daddy, a Mommy, > whom, I can convince myself, I can blindly trust. Ohhhhhhhhhhhhh. Well, that would be me. Take to aspirin and write me in the morning. Well, thanks, that's it. You made it so simple. :) >> So, I get tired of trying to find "the right answer" when there is >> none. And, finally, just like my and my colleagues patients, I feel [quoted text clipped - 8 lines] >Ohhhhhhhhhhhhh. Well, that would be me. Take to aspirin and write me in >the morning. I guess you could do a Google search and find the number of posts on RT after RP. It seems to me that RT tends to be done after healing from the RP and there seems to be some question about that and some docs want to wait 6 months and some only wait 3 months. Now we all know that the younger man heals faster than an older man but then other factors such as diabetes would slow the healing time significantly for both age groups. I can't tell anyone what to do. My medical knowledge would fit in a thimble. But if it was my husband who had a RP and had any "outside involvement", anything that would throw doubt on the success of the RP I would want him to have RT as soon as possible. I can't understand how so many men will come back with path reports that say there was some signs of seminal involvement etc and yet the doc does nothing but watch the PSA. Watch it do what - rise? Isn't it better to nail it right then and there? Radiate the prostate bed and catch every last little PC bastard before it manages to slip away to some other part of the body. Lymph nodes look a little bad - then fry them! An ounce of prevention is worth a pound of cure. If the RT doesn't get it then it was already too far along. But if it still is confined in the prostate bed and it can be nailed -then nail it! Radiation today is not what it was 15 years ago or even 10 years ago. They aren't frying things they aren't supposed to fry. And it is easy treatment to undergo. Being an informed patient is probably the best way to make sure you are getting the best care. But the bottom line is; it is your body and people must take charge of their body. Is the risk worth the problem? Is the "cure" worse than the disease? These are simple questions we need to ask ourselves before we take an medication or go through any treatment. Knowing when to react aggressively is always a difficult decision. Ultimately it is the patient's decision to aggressively treat any problem. Everyone wants a magic bullet. Take this pill and all will be cured. It doesn't happen that way. Bev > If it was my husband who had a RP and had any "outside involvement", > anything that would throw doubt on the success of the RP I would want him to > have RT as soon as possible. I can't understand how so many men will come > back with path reports that say there was some signs of seminal involvement > etc and yet the doc does nothing but watch the PSA. I and my wife disagree, but that's just our personal call, explained earlier in great detail (and supported by a radiation oncologist to an extent). My whole medical board advises against post-RP RT for me BECAUSE one seminal vesicle was involved, significantly raising the likelihood of distant micromets of my Gleason 8 bastard and lowering the ratio of benefit to SEs. > Watch it do what - rise? Isn't it better to nail it right then and there? > Radiate the prostate bed and catch every last little PC bastard before it > manages to slip away to some other part of the body. The flip side of that coin is that it often HAS slipped away, undetected, rendering all that radiation and its SEs moot. > An ounce of prevention is worth a pound of cure. But sometimes a ton of SEs doesn't provide a gram of protection. > Being an informed patient is probably the best way to make sure you are > getting the best care. But the bottom line is; it is your body and people > must take charge of their body. Is the risk worth the problem? Is the "cure" > worse than the disease? These are simple questions we need to ask ourselves > before we take an medication or go through any treatment. NOW we're back on the same track. I.P. > Well, thanks, that's it. You made it so simple. :) > [quoted text clipped - 10 lines] > >Ohhhhhhhhhhhhh. Well, that would be me. Take to aspirin and write me in > >the morning. Better yet, take two or more glasses of wine! I can't remember the details of the study saying it was better to have two or more in place of one glass but with a good bottle of with around... <G> Dwight It seems as if this form of cancer is different from any other, in that nobody can tell you for certain what it's going to do to you, if anything. When I was first diagnosed, I read everything on the Internet, and came away knowing less than when I started. My strategy was to pick one line of thought and put my faith in that. Since my HMO is Johns Hopkins and Dr. Walsh there has written a comprehensive book on the subject, and since Dr. Partin is there too (and has taken over as head of the Urology Department), for me the right answer was what those two have written. Their literature, and the J-H surgeon who operated on me, say I'm cured. Their literature says you're cured too. jimhoney > Guys, thank you very much for the info and your opinions. Last night, > I lied and bed and couldn't sleep, all kinds of thoughts running [quoted text clipped - 34 lines] > does. So, I'm tired. Give me an authority figure, a Daddy, a Mommy, > whom, I can convince myself, I can blindly trust.
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