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Medical Forum / Diseases and Disorders / Prostate Cancer / January 2008Hi again from that nefarious scoundrel: Pops, and a daunting challenge...
Hi folks of this group! Here's a challenge for you - a real conundrum - or so I'm told... For those of you who remember me you will recall that I opted out of active participation in this esteemed group for a very personal and selfish reason. I needed to quit obsessing on my disease and go on with my life, I needed to forget about it between PSA checkups, which were now at 6 month intervals. I seemed well on my way to a cure. Yeh - Sure! You've heard that before... To refresh and update your recollections (as best as I can without all my data in front of me) > Pre-op PSA 16, Gleason 4,3, stage 2b(?) > LRP Feb 2005, contained, neg nodes and vesicles > Pathology: 2 tumors, 1 Gleason 7 - 0.2 mm within wall, one Gleason 5 confined > PSA ~ 2 months later = 2.4 (yikes!!) > PSA 1 month later = 1.2 > CT and bone scans done, prep for EBRT (I still covet my tattoos) ~ 2 months later just before first radiation treatment; PSA < 0.05 > Gave the EBRT team the finger! > PSA 4 months later = <0.05 > PSA 6 months later = <0.05 > PSA 6 months later = 0.08 (there may have been 1 other <0.05 in between) > PSA 3 months later = 0.06 > PSA 4 months later = 0.13 (December 07) > Second opinion garnered > Schedules scans and EBRT prep based on next PSA reading being same or higher, mainly because of the doubling rate > PSA 3 weeks later = <0.05 (early Jan 2008) OK! I suppose I should be happy. MY UROs slap me on the back and say "ain't you lucky"! I'm tempted to give 'em the finger. There's something inside of me generating significant above-the-noise PSA and turning it on and off! They don't have the foggiest, and they tell me my condition, from post op on, is very, very rare (they both never experienced one before). I've contacted Sloan Kettering as a third referral (waiting). I've also contacted a psychic, as I think I may have accomplished mind control over cancer. I could make A LOT of money! I have a scheduled PSA in late February along with a URO visit, per referrals recommendation (he's a 0.2 guy, my primary is a 0.4 guy). I intend to tell HIM what going on with your help! What should I do? I'm a little more that a year away from full SS benefits. Should I tough it out, or cash in now? Should I sell my story to the Star: "Alien Conquers Cancer" (my picture should do the trick)? I gave up drinking - recovering alcoholic - should l order an SoCo Manhattan? Waiting on pins-and-needles for your responses! Pops > Hi folks of this group! > [quoted text clipped - 56 lines] > > Pops Hi Pops...Looks like "the force is with you"! Let me pose a couple of questions and then I'll speculate some; but like you, I've never read about a post-op PSA series quite like yours. Questions: 1. Have all readings been with the same lab? 2. Are the blood samples sent out to a lab like Quest or Mayo, or does your doc have a an actual PSA measuring device in his office (some docs do, and you might expect more variation in such a case)? 3. Did you have severe prostatitis at times prior to your surgery? Thoughts, this is pure speculation, but here goes: A fair amount of prostatic tissue (enough to generate a PSA of 1-2) was left behind after your LRP. Most of it quickly died as a result of its blood supply being cut off by the surgery (this could explain your first 3 results - 2.4, 1.2, <0.05). A sliver of tissue survived, enough to generate a PSA of 0.049 or less (hence your usual result of <0.05). Sometimes it gets infected, perhaps you had prostatis before, or it never healed correctly after surgery and an infection of varying severity remains. As the prostatitis or infection cycles up and down over time, so does your PSA. ...Best wishes and good health, ron > ... > Thoughts, this is pure speculation, but here goes: > A fair amount of prostatic tissue (enough to generate a PSA of 1-2) > was left behind after your LRP. ... Ron, Your speculation puts me in mind of the famous passage from the Sherlock Holmes stories where Holmes says, When all the other explanations have been ruled out then whatever is left, no matter how improbable, must have been it. I'm wondering if there is a way to find out whether, in fact, a fair amount of prostatic tissue was left behind. Are you aware of any scan that can detect that? I seem to recall that someone here reported that they went to a new urologist after PSA failure and the guy said that about 1/3 of the prostate still remained. If he wasn't talking out of his, he must have had some way to tell that. Alan On Jan 10, 6:04 pm, Alan Meyer <amey...@yahoo.com> wrote...snip... > I'm wondering if there is a way to find out whether, in fact, > a fair amount of prostatic tissue was left behind. Are you [quoted text clipped - 6 lines] > > Alan Alan...Good question. Perhaps a color-doppler ultrasound, you'd think it could see 10-20 gms of prostate, but I don't really know...Ron > For those of you who remember me you will recall that I opted out of > active participation in this esteemed group for a very personal and > selfish reason. I needed to quit obsessing on my disease and go on > with my life, I needed to forget about it between PSA checkups, which > were now at 6 month intervals. I seemed well on my way to a cure. Hey, Pete! Glad to see you again. I would insert "pragmatic" where you put "selfish." Everyone here (with one recent possible exception) has problems with PSA fluctuation. And, we all have our limits as to how we view them or react to them. One of our most knowledgeable members has his wife open his PSA results every year. It's all about you and what you can or want to handle. I just wrote a lengthy post summing up why I think surgery patients should be tested only to the first decimal and you are a prime example of why I say that. Had your onc had you on a standard assay you would have seen your PSA bubble up to 0.13 in December and fall back to < 0.1 in January. No angst. No fret. And no advantage to knowing what it really did. > I have a scheduled PSA in late February along with a URO visit, per > referrals recommendation (he's a 0.2 guy, my primary is a 0.4 guy). > Waiting on pins-and-needles for your responses! Keeping in mind always that I am not a doctor, let alone a visionary like Dr. Strum, .... I would forgo the radiation treatment again and then get another PSA in three months (not 30days) and still another three months later. If it doesn't go above 0.1, keep thinking you're cured. You're probably not. Not many of us are if you believe some pundits, but believing you are while routinely getting tested never hurt anybody.  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 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04 10/11/07 Non Illegitimi Carborundum > I just wrote a lengthy post summing up why I think surgery patients should > be tested only to the first decimal and you are a prime example of why I say > that. Had your onc had you on a standard assay you would have seen your PSA > bubble up to 0.13 in December and fall back to < 0.1 in January. No angst. > No fret. And no advantage to knowing what it really did. We shall see. My last three quarterly PSAs were 0.006, 0.015 and 0.030. If my next one is 0.060, we will be justifiably suspicious that I could hit one decimal point the next quarter and the magic 0.2 the following quarter. If so, I will appreciate the heads-up and will start doing more research on SRT, ADT, and newer options. Angst, schmangst. The damned thing's gonna do what it's gonna do no matter what I do. I'm infinitely more concerned about such things as the next election and the next warm windy day and my rising blood glucose than about my next PSA. I.P. > We shall see. My last three quarterly PSAs were 0.006, 0.015 and 0.030. I'm sorry to hear that, IP. With seminal involvement, it was always a probability, but still unfortunate. >> We shall see. My last three quarterly PSAs were 0.006, 0.015 and 0.030. > > I'm sorry to hear that, IP. With seminal involvement, it was always a > probability, but still unfortunate. Unfortunate ... or just noise. It did the same thing a year or two ago, to 0.029, then dropped to something like 0.010 and stayed there. My onc and I figure we'll regard it as meaningful when it continues with something like 0.060 followed by 0.120. At that point I start doing more reading. Currently, I see no validation for SRT or ADT even at 0.200, and I wouldn't begin adjunct tx until a winter anyway: I'm not going to screw up a perfectly good summer with a protocol with a therapeutic ratio as low as those are IN MY PARTICULAR PC CASE. I really hope to skate by until other, newer, better, pending protocols mature. I.P. > I'm not going to screw up a perfectly good summer with a protocol with a > therapeutic ratio as low as those are IN MY PARTICULAR PC CASE. Speaking of which, how are your scans from your other cancer? >> I'm not going to screw up a perfectly good summer with a protocol with a >> therapeutic ratio as low as those are IN MY PARTICULAR PC CASE. > > Speaking of which, how are your scans from your other cancer? I apparently really dodged a bullet there. It's very often quickly fatal because it's almost always discovered too late via a) advanced symptoms or b) lucky unrelated surgery or unrelated but appropriate scans in that region. They believe I'm cured; will declare so if and when I pass one more exam later this year. That's why I say my biggest threat now may be the rising blood sugar; as you know, that's serious stuff even in the short term and even at low levels. I.P. Sorry to hear about the fluctuations I.P. However, your attitude towards this possible problem, or possible non-problem, is eminently sane. Best of luck. Alan > Sorry to hear about the fluctuations I.P. > > However, your attitude towards this possible problem, or > possible non-problem, is eminently sane. Other applicable words might be irrational, fatalistic, blind, brave, foolhardy, etc. I prefer your word, because by most standards a PSA of 0.030 is merely "undetectable". I like the scenario my onc keeps painting as a worst likely case with ever-decreasing odds as my PSA stays low longer: My PSA warrants treatment in a couple of years, I start feeling symptoms in another 6-8 years, it kills me in 10-12. Hell. I never expected to live to 90; another near-decade of windsurfing is an offer I'll jump at ... literally. I've very deliberately done more of what I want to do in my 64 years than most people could in 164, and I'm measurably in better physical condition than most college kids. Bring it on. I.P. > What should I do? I'm a little more that a year away from full SS > benefits. Should I tough it out, or cash in now? I can't help you with the medical part of your questions. I'm also an anomaly my Sloan-Kettering-trained surg onc can't explain, in that I'm not continent. Leak happens. As for early SS, I took it at my earliest option simply because it takes 14 years for waiting to break even and I had a Gleason 8 with SVI and a PSAV > 2.0. If I live 15 more years, you won't hear me complaining about the few bucks the decision cost me. I.P. >What should I do? I'm a little more that a year away from full SS >benefits. Should I tough it out, or cash in now? Pops, that decision on when to start getting SS benefits is a tough one. I retired and started collecting SS at age 64. For me, the ability to enjoy some "early" retirement was much more valuable than the reduction in monthly benefits. And, like I.P. Freely, if I happen to live much longer than I expect, I won't complain about some loss of SS benefits! I'm happy with my decision and enjoying being the master of my day, every day. Be sure to let us know what you decide to do, please? Best wishes to you! Burney RP in 1995 (age 52) RT in 2000 ADT (Casodex) 10/06 - 8/07 burney dot huff at mindspring dot com |
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