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Medical Forum / Diseases and Disorders / Prostate Cancer / October 2005Recurrence after 9+ years
Guys, don't sit back and get too complacent, or listen to *any* doctor who spouts the word "cure" for 5 or 7 years stats. My PCa has just recurred after 9 1/2 years of being undetectable. (I was told by a noted Uro that I could consider it a 'cure' at both those milestones.) Unfortunately, a recurrence after all this time is generally more systemic in nature, as I understand it. 9 1/2 years. They really have no clue, and spout stuff off to new patients just to make them feel good. Stay vigilant. Cancer2x - NSRRP 1996; PSA @Surg 12.0; Post Surg Gleason 3+4=7; Neg Nodes, Neg margins. > Guys, don't sit back and get too complacent, or listen to *any* doctor who > spouts the word "cure" for 5 or 7 years stats. My PCa has just recurred [quoted text clipped - 10 lines] > Cancer2x - NSRRP 1996; PSA @Surg 12.0; Post Surg Gleason 3+4=7; Neg Nodes, > Neg margins. Picked up via PSA I assume? Are you going through all the scans and stuff to figure out where it may be? Let us know what the treatment and your progress is.  SignatureJK Sinrod Sinrod Stained Glass Studios http://www.sinrodstudios.com/ Coney Island Memories www.sinrodstudios.com/coneymemories/ Sorry to hear this bad news, especially after such a long time. What is the plan for further diagnosis and treatment? Have you had a bone scan yet? Do you know for sure about metastases? There has been a lot of postings here that show a 30% chance of reoccurrence for men with even T1c and Gleason of 6, or thereabouts. That is my territory, and I can tell you that it is always in the back of my mind. My next PSA is October 31st, and I am thinking about it, believe me. Good luck to you. Be sure to let us know what treatment you decide on. David S. > Guys, don't sit back and get too complacent, or listen to *any* doctor who > spouts the word "cure" for 5 or 7 years stats. My PCa has just recurred [quoted text clipped - 10 lines] > Cancer2x - NSRRP 1996; PSA @Surg 12.0; Post Surg Gleason 3+4=7; Neg Nodes, > Neg margins. Cancer2x, That really sucks! I guess none of us knows what is on the road ahead. What will you do now? I wish you well on what ever approach you take. Steve U (snip) > ..................My PCa has just recurred > after 9 1/2 years of being undetectable. (I was told by a noted Uro that I [quoted text clipped - 6 lines] > > Stay vigilant. Amen to that, brother. The war does not end until we do. It's as simple as that. I suppose that the next step will be either chemotherapy or ADT, or possibly chemo + adjuvant ADT. The best hope is to stave off the beast until something else lays us low. Regards, Steve J "Never -- never -- never give up! Never go gently. There will be plenty of gentle after we die, so until then -- fight -- control the rhythms and tempo of the dance, even when you have to let the PCa dancing bear lead for awhile -- even when you have to wear the lead suit as you dance -- never let the bear set the rhythm and tempo of your dance with life -- when the bear finally takes control, it will be a very hollow feeling for him, because I will be gone -- dancing in a better place." --E. B. (Burns) Mixon, PCa survivor, June 14, 2005 on The Prostate Problems Mailing List Thank you, Burns. Live long and prosper. If it has taken this long to rear its head, the odds are good that it is a sluggish brute ("indolent" is the word the doctors use). If you luck out and they decide it's localised, you have the option of radiation which may knock it down permanently. If it is systemic, there's a good chance that hormone therapy can keep it knocked down for many years. No need even to start the hormones until the PSA gets up a fair bit. And from comments here, it seems like you may be able to do the hormones intermittently. No guarantees, of course, but plan on living long enough for a cure to be released, or dying of something else entirely. DON'T GIVE UP! SignaturePeter Headland Sorry for the re -occurence. I was never promised, and to this day feel each day is a blessing. Wow...... I never sit back and or complacent.. I get tested, and do have worry. I am going on 6 years...... Does not mean I am cured...... I have Cancer.....I did have it removed, it does not mean that it may come back. No promises in this World. Sorry for your problem, and keep us posted. What a bunch of .............I have many words, but feel that I will keep them to myself. John Loomis RP 49 @ 1999 6 years less than 0.01 Never cured, just thankful for year 6. Wish you the best. John Loomis > Guys, don't sit back and get too complacent, or listen to *any* doctor who > spouts the word "cure" for 5 or 7 years stats. My PCa has just recurred [quoted text clipped - 10 lines] > Cancer2x - NSRRP 1996; PSA @Surg 12.0; Post Surg Gleason 3+4=7; Neg Nodes, > Neg margins. From: cgould@bu.edu (Cancer2x) Guys, don't sit back and get too complacent, or listen to *any* doctor who spouts the word "cure" for 5 or 7 years stats. My PCa has just recurred after 9 1/2 years of being undetectable. (I was told by a noted Uro that I could consider it a 'cure' at both those milestones.) Unfortunately, a recurrence after all this time is generally more systemic in nature, as I understand it. 9 1/2 years. They really have no clue, and spout stuff off to new patients just to make them feel good. Stay vigilant. Cancer2x - NSRRP 1996; PSA @Surg 12.0; Post Surg Gleason 3+4=7; Neg Nodes, Neg margins. =========== damn the luck!!! to be so close, but the battle is not over, by a long shot. i have not heard that the pca is more systemic because of the time involved. maybe i missed something. you didn't post your current psa level that i saw. the way i see it - if this is your first time that your psa was detected, they should be able to do SRT and that should put it back into undetectable again killing anything in the prostate bed. the good news is that enough time has past since your treatment that radiation treatments are getting better than they were before. i didn't like the words my new uro said when i had my appt this week. his comment was, "your psa is zero or less than .04, and your prostate cancer is under control." he did not use the word cure nor did he tell him that i was out of the woods. i left his office feeling a little uneasy, but maybe i need to feel like that, to stay on my toes in order to react quickly, if the psa was to detect something. best of luck, ~ 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 Sorry about your bad news. Can you give us your age and physical condition? You may not have to do anything to treat it as you may outlive it and can avoid the side effects of treatment. It's obviously slow growing. Ron S. > From: cgould@bu.edu (Cancer2x) > Guys, don't sit back and get too complacent, or listen to *any* doctor [quoted text clipped - 33 lines] > > ~ curtis You have been going in for yearly PSA's for 9 plus years and the PSA started going up after 9 plus years? You were at post op neg. margins, and were a G-7? Do you have any other stats or information regarding this recurrence? I wonder how it got restarted after all this time. dalej > 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 SignatureEmail: dalej2@mac.com > You have been going in for yearly PSA's for 9 plus years and the PSA > started going up after 9 plus years? You were at post op neg. margins, > and were a G-7? Do you have any other stats or information regarding > this recurrence? > > I wonder how it got restarted after all this time. *****>> Yes, I have been dilegent about the PSA tests - got 'em every three months for the first 5 years, and every six months thereafter. They just started going up now, after 9 1/2 years. At post-op I was margin negative, Gleason 3+4=7, PSA 12.0 at surgery date. I had recently lost weight (on purpose), and dropped about 30 pounds. Maybe all that fat being released did something, I dunno. I think that it is all just a crap shoot, like I said before. A LARGE number of men recur, regardless of therapy chosen, and RP has a pretty bad track record if you consider that more than 50% of all RPS will fail eventually (Hospital stat). It just sucks, is all I can say. This is why they make scotch. Cancer2x > > You have been going in for yearly PSA's for 9 plus years and the PSA > > started going up after 9 plus years? You were at post op neg. margins, [quoted text clipped - 19 lines] > > Cancer2x Or gin, LOL. I'm going in for my third annual PSA in about a month. After my surgery the doc had me come in for PSA's every three months for the first year then switched me to annual and that's where I'm at now. My PSA at surgery was between 4.7 and 5.5 it fluctuated over a couple of tests. I too had negative margins and a good report all around with a G-6. Wish you good luck and post what's going to happen next. dale j. SignatureEmail: dalej2@mac.com > I had recently lost weight (on purpose), and dropped about 30 pounds. > Maybe all that fat being released did something, I dunno. My Rad oncologist told me that losing a lot of weight quickly is something I did not want to do with prostate cancer. I don't recall why, but for some reason he said it was a bad idea -- and it had nothing to do with the treatment I was undergoing at the time. 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 PSA .07 .05 .06 .05 .08 non Illegitimi carborundum > I think that it is all just a crap shoot, like I said before. A LARGE > number of men recur, regardless of therapy chosen, and RP has a pretty bad [quoted text clipped - 4 lines] > > Cancer2x Nerve sparing at 49 years old and no erections, but did you try all that was available to you to get it going? Why no orgasms? Fun is fun, anyway you can get it. You cite a 50% failure rate? Never heard of such a figure. Maybe I'm naive, but .10 after almost 10 years sounds too close to nothing, rather than something. My brain wants to tell me that it may be more likely an error, or a physiological anomily than a recurrence. Let's hope I'm right. Keep us posted. SignatureJK Sinrod Sinrod Stained Glass Studios www.sinrodstudios.com Coney Island Memories www.sinrodstudios.com/coneymemories > Guys, don't sit back and get too complacent, or listen to *any* doctor who > spouts the word "cure" for 5 or 7 years stats. My PCa has just recurred [quoted text clipped - 10 lines] > Cancer2x - NSRRP 1996; PSA @Surg 12.0; Post Surg Gleason 3+4=7; Neg Nodes, > Neg margins. I think we all understand that the other shoe can always drop. My post surgical pathology was like yours, but with a lower PSA, so I can begin to feel your pain. My urologist, while generally optimistic has never told me "you are cured", although he has suggested that I am no worse off with respect to life expectancy than any other man my age, which is probably true. One of my former colleagues had the same thing happen to him in 1995, 10 years after surgery, and a google search showed that he was still going strong in 2004 at over 80. The upside of this is that, at least according to Walsh, with recurrence that long after surgery, even if it is remote and not local, the chances are pretty good that it will be quite a while before any clinical symptoms of metastatic prostate cancer will occur, even without any treatment. Following that hormone therapy can keep you going quite a while. Depending on your age, this might not have too much effect on your lifespan or your life quality. I do have one question though. According to Walsh's book, late recurrence increases the likelihood of local recurrence rather than decreasing it. Why do you think in your case, the likelihood of metastasis is greater? I don't know if I would be able to do it myself, but the best advice is to be optimistic, explore all your options, and decide what to do next, and then get on with your life. Good luck! Leonard: In your research and valued opinion, when do you think that there will be a "mop up" vaccine made available so once the RP is completed we all will not have to think ever again about the other shoe dropping. This, in my mind at least, would help alleviate concerns exponentially for most of the men suffering from PCa's side effects and the anxiety that it produces even in the best of surgical/pathological outcomes. There was some progress that made headlines the last few days on the breast cancer front. See link below: http://www.cbsnews.com/stories/2005/10/19/earlyshow/health/health_news/main95686 6.shtml Thanks in advance for your response! B.A. > Leonard: > [quoted text clipped - 12 lines] > > B.A. I'm afraid i don't know anything more than you do about this. More generally, I hope with the rest of us, that someone will come up with a way of controlling metastatic prostate cancer indefinitely without signficant side effects. I suspect that will happen, but I have no idea when. > ... > In your research and valued opinion, when do you think that there will [quoted text clipped - 3 lines] > most of the men suffering from PCa's side effects and the anxiety that > it produces even in the best of surgical/pathological outcomes. Bob, My impression of the research currently in progress is that we will see gradual progress, but not total victory in the next 10 years. The "cancer vaccines" in test today are designed to get the body's natural immune system to target and break down some chemical in the body - typically a protein that is strongly associated with the cancer being investigated and not associated with healthy cells. This strategy sounds very promising, but it is very difficult to achieve. Destroying any particular protein target that is picked may or may not kill all the cancer cells. Stimulating the immune system may or may not get it to destroy all of the protein (typically not all). Side effects of attacking this one chemical may or may not do harm to other cells or life processes in the body. Tremendous amounts of very sophisticated research are required to find the targets for vaccines to act against, to to develop vaccines that can stimulate the immune system to attack them, and to test the efficacy and side effects of the treatment. Some of this research makes rocket science look easy! I think we'll see developments that will, when combined with other treatments like hormones, hold off cancers in some men for some period of time longer than the current treatments alone will. As time goes by, the efficacy of the treatments will gradually increase. Will there be a breakthrough that kills all the cancer? Actually, I believe there will, but not soon. It will take a long time and require a lot of very basic scientific research before the breakthroughs occur. I believe there will also be breakthroughs in other kinds of treatment as well - including chemotherapy and "biological" drugs. But there too, the research is extremely difficult and progress will likely be gradual. Alan Leonard & Alan: Thanks to both of you for your timely and informative replies! Hopefully, this disease can be defeated with certainty sooner rather than later. Good health. B.A. "Alan Meyer" opined > Some of this research makes rocket science look easy! Take it from a bona fide rocket scientist: this stuff is FAR more complex than rocket science. We've known for decades HOW to get to the moon and the stars because it's all just math and sheer effort once we can fabricate the hardware. The human body is infinitely more complex. I.P. Thanks for the advice Cancer2x. I am hoping that the test you took was wrong. Or at the very least it is a very, very slow growing cancer. Dave P > Guys, don't sit back and get too complacent, or listen to *any* doctor who > spouts the word "cure" for 5 or 7 years stats. My PCa has just recurred [quoted text clipped - 10 lines] > Cancer2x - NSRRP 1996; PSA @Surg 12.0; Post Surg Gleason 3+4=7; Neg Nodes, > Neg margins. > Stay vigilant. > > Cancer2x - NSRRP 1996; PSA @Surg 12.0; Post Surg Gleason 3+4=7; Neg Nodes, > Neg margins. Am I having a Deja Vu here, or do I remember this poster with the same post last year or so? Has he ever responded with details? Love to hear about it... SignatureJK Sinrod Sinrod Stained Glass Studios www.sinrodstudios.com Coney Island Memories www.sinrodstudios.com/coneymemories > > Stay vigilant. > > [quoted text clipped - 4 lines] > post last year or so? Has he ever responded with details? Love to hear about > it... When searching the Google groups I didn't find a post from Cancer2x between Jan 9 2002 and Sep 7 2005 so most likely he didn't post it last year. Cancer2x's case, if I understand the archives and his posts accurately, is ironic, to say the least. He had RRP during 1996. He first posted on this NG during 1998. He often posted between 1998 and 2002. After a three-year hiatus, he posted again during August 2005. He lamented that he'd spent 9+ miserable years without cancer, but with all the side effects. He vowed that he would take back the cancer if he could. One month later, he got his wish. 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 PSA .07 .05 .06 .05 non Illegitimi carborundum > > Stay vigilant. > > [quoted text clipped - 4 lines] > post last year or so? Has he ever responded with details? Love to hear about > it... > Cancer2x's case, if I understand the archives and his posts accurately, is > ironic, to say the least. [quoted text clipped - 7 lines] > > One month later, he got his wish. I'm guessing he posted under a different name before he had his recurrence? I just seemed to remember a posting from him before this one? SignatureJK Sinrod Sinrod Stained Glass Studios www.sinrodstudios.com Coney Island Memories www.sinrodstudios.com/coneymemories http://groups.google.ca/group/alt.support.cancer.prostate/browse_frm/thread/732c bfdf01868095/837ef05ef22ff21b?tvc=1&q=cancer2x&hl=en#837ef05ef22ff21b Hi JK.....see the Google Archive above.....written in August of this year. He stated more than once that he would have rather kept his prostate, cancer and all. Heather >> Cancer2x's case, if I understand the archives and his posts accurately, >> is [quoted text clipped - 13 lines] > I'm guessing he posted under a different name before he had his > recurrence? I just seemed to remember a posting from him before this one? http://groups.google.ca/group/alt.support.cancer.prostate/browse_frm/thread/732c bfdf01868095/837ef05ef22ff21b?tvc=1&q=cancer2x&hl=en#837ef05ef22ff21b > Hi JK.....see the Google Archive above.....written in August of this year. > He stated more than once that he would have rather kept his prostate, cancer > and all. > > Heather What I remember was the same subject matter, only about the recurrence after so much time.... not the other stuff. I could be wrong, but it's so rare for someone to post about a recurrence after years, and it made an impact on me I guess? SignatureJK Sinrod Sinrod Stained Glass Studios www.sinrodstudios.com Coney Island Memories www.sinrodstudios.com/coneymemories Nope, I searched on "Cancer2x" 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 PSA .07 .05 .06 .05 non Illegitimi carborundum > > Cancer2x's case, if I understand the archives and his posts accurately, is > > ironic, to say the least. [quoted text clipped - 11 lines] > I'm guessing he posted under a different name before he had his > recurrence? I just seemed to remember a posting from him before this one? >> Stay vigilant. >> [quoted text clipped - 6 lines] > about > it... *****>> Nope, wasn't me then. My PSA has been <0.1 until now. Last two have shown 'detectable and mesaurable' PSA, both reported as =0.1, and the doc has refered me to a Medical Oncologist (Dr. William Oh) at the Dana Farber in Boston. Cancer2x > Guys, don't sit back and get too complacent, or listen to *any* doctor who > spouts the word "cure" for 5 or 7 years stats. My PCa has just recurred [quoted text clipped - 10 lines] > Cancer2x - NSRRP 1996; PSA @Surg 12.0; Post Surg Gleason 3+4=7; Neg Nodes, > Neg margins. Sorry about the blank posting. I don't know what I did wrong, but it posted before I could type in my comments. Cancer2x, I am glad you are alive, even with the bad news of the recurrence. I have missed you and often wondered how you were doing. Every now and then I have a visit with our mutual friend, "Johnny Walker". Let us know how things go as to the recurring cancer. Best of Luck, Dale P > Cancer2x, > [quoted text clipped - 8 lines] > > Dale P ******>> Hi, Dale. We have both been around here for a very long time. I hope you are well. Yes, I often lamented my total, and profound loss of sexual functioning, here and other places, and yes, I often stated that I would take my prostate back, cancer and all - IF I could have the return of sex. I was NOT asking for the cancer back in this context, obviously, as I still have no sexual functioning at all - no erections, nor any orgasmic functioning at all. So, now, I get no sexual function for almost a decade, AND the blasted cancer back! My PCP recommended I go see the uro again that operated on me! Is he kidding? The Uro told me 1) I would get my erections back, because I was young (49 at surgery) and healthy otherwise, and 2) at 5 years, then at 7, I should consider myself 'cured'. He was wrong on BOTH counts! Instead, I made an appt with an Oncologist who specializes in PCa. At this point going to a surgeon is like hiring a hunter to catch a fish for you. Besides, with the Uro's record with ME (0-2), he gets no more chances to be wrong, thank you! Good to see your name again, Dale! Be well - Cancer2x I don't believe anyone at John Hopkins is going to tell you that your cancer has returned with a 0.1 psa. You need at least 0.2 on two consecutive labs or one of 0.4 before one could conclude cancer recurrence. It could just be the lab error and nothing more. If you had you lab work done at Quest Diagnostic's they are good at leaving off the < from the results. I'm 64 and two years and four months out and all my results have been <0.1 with other labs. Two results from Quest were 0.1. I did an immediate followup after the 0.1 result with another lab within four days and the results were <0.1. Needless to say I don't use Quest anymore. Ron S. ****>> Well, I am not near Johns Hopkins. I had a repeat test 30 days later, and it was still classified as "detectable PSA". They report it as =0.1, but state that it could be anywhere between 0.10, and 0.19 - the test is just not that sensitive. It should be "less than", but even that is no guarantee that residual disease in minute amounts doesn't exist....we just can't measure it easily yet. I will be requesting an Immulite "ultrasensitive PSA" when I meet with the new Oncologist in a coupla weeks. It can measure down to three decimal points. (0.000). The real problem is that some prostate tissue residing somewhere is producing this measurable antigen. Finding the site(s) is real bitch. Unless there is a large lesion, or a symptomatic presentation, we have very poor imaging diagnostics to hunt it down. The "Prostascint" test is very controversial, and has a history of both false positives AND false negatives, and the real downside to this test is that once you have it, you are then ruled-out from EVER using any vaccines that might get developed using 'mouse antibodies' - which is the majority of designer vaccines today. So - maybe we have a good lead-time "heads-up" on the return of The Beast, but there are battles looming nonetheless. Best - Cancer2x > I don't believe anyone at John Hopkins is going to tell you that your > cancer has returned with a 0.1 psa. You need at least 0.2 on two [quoted text clipped - 6 lines] > days and the results were <0.1. Needless to say I don't use Quest anymore. > Ron S. |
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