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Medical Forum / Diseases and Disorders / Prostate Cancer / May 2005Now what?
Was diagnosed PC some 5 months ago 3+3=6 in one of six biopsies (0.5 mm) psa: 1.4 age 47 Five days ago I had my first meeting with a PC-specialist in the BIG hospital, who is also a surgeon, well reputated with about 100 prostatectomy on his conscience. He gave me the standard speech, as I expected, about the options; RP, RT and WW and said that LRP would be the right thing for me. (well, he's a surgeon, of course he want to opt for HIS way) even though I've come to the same conclusion after months of studying outcomes-prognosis, side effects etc. As he had some time left (me being the last patient of the day) We agreed that one more blood test and a DRE would be appropriate. DRE: no remarks Ultrasound: no remarks He told me that he would call me when he got the psa-result. Ever since I had been thinking: well, now the ball is rolling, he's gonna tell me that the psa have risen to 2, maybe 3 or... and we will schedule for the operation. Today he called me and said my latest psa was 0.9 ?!?! He still wanted us to opt for an operation ASAP "to be on the safe side" but I said: -I don't want to undergo any treatment with readings as they are now; one biopsy showing malignancy in zero point 5 millimeter and a psa not rising but going DOWN. I'm very aware that the tumor has most probably NOT gone away by itself and that pathology report post RP often show more tumors than the biopsies indicate, but I want to have more flesh on the bones before doing anything though. So we agreed on having another biopsy in two weeks from today. I want to have more malignancy cells, if you know what I mean. I also asked him if, once the tumor have been stated, the psa level is a good indicator of the progress of the cancer, and he said "-yes" Then I aked him if there is a "time factor" hazard, i.e if there over time is a risk of spreading although the psa level is constant and he said "-maybe" Well, maybe my next biopsy will show: "-go direct to the operation-table and lie down", but in the mean while... Any of you guys who have a theory or about my risk in waiting at this stage? Roger / Stockholm, Sweden In my mind, you're too young to be testing your luck. You have cancer. The thing about cancer is that it doesn't die of it's own volition. The inability to die is almost the definition of cancer. And, each cancerous cell replicates itself, just like normal cells, except each cancerous cell also doesn't die. So, your real decision is not whether or not to treat it, but when. You can do it now while the tumor is a mere ½ millimeter, or you can wait until it is bigger. Hopefully, it will grow toward the center of your prostate and not toward the capsule. Hopefully, it will grow slowly enough and predictably enough that you will have time to make a decision on when. Hopefully your Gleason will not change to a 7 or an 8 while you're waiting. I just don't know what you're hoping to accomplish by waiting. Maybe if I knew that, I'd understand your hesitancy.  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 > Was diagnosed PC some 5 months ago > 3+3=6 in one of six biopsies (0.5 mm) [quoted text clipped - 54 lines] > > Roger / Stockholm, Sweden Steve's right, plus: 1. Some cancers produce little PSA. Not likely with a 6, but you've already blown one statistic (early PC) so why waste this chance to cure it? 2. Biopsies produce more false negatives than false positives. (I'm guessing, but I'll bet others can back it up with cites.) 3. Anyone who can stand around doing little for five months has far more patience than I. This stuff grows slowly, but the key word is "grows", not "slowly". It's pumping PC cells throughout your body as we speak. 4. I thought the preferred treatment for young, low-grade, low-stage PC cases (lucky you!) was seeds. Have you consulted with radiation oncologists and/or read several PC books? 5. PSA is first and foremost a flag to trigger a biopsy, not a reliable measure of PC. It's the biopsy, if positive, that triggers treatment. You're past the PSA stage, much like a kid who fell down is past the x-ray stage as soon as the x-ray shows a break. 6. There's no way in hell I'd WANT to wait for a positve DRE. That is just cold, hard, lumpy proof that your PC is trying to break out of its prison. I'm not going to wait until my arm has two elbows to be convnced it's broken when the x-ray verifies a jagged edge. 7. A friend runs a medical lab. He's begun making his guys get biopsies by your age if they have any of the risk factors (e.g., family history of PC, black). He's caught three cases of PC out of four guys with negative PSA and DREs this way. 8. Don't be afraid to treat it. Consider yourself extremely lucky to have caught this in its infancy, kill it one way or another, and get on with your next 40 years. I.P. > In my mind, you're too young to be testing your luck. You have cancer. > The [quoted text clipped - 14 lines] > I just don't know what you're hoping to accomplish by waiting. Maybe if I > knew that, I'd understand your hesitancy. Roger writes: > Was diagnosed PC some 5 months ago > 3+3=6 in one of six biopsies (0.5 mm) > psa: 1.4 > age 47 Roger: Right away there's a problem. You only had a six core biopsy. You should have had 12. So you're not dealing with the best available information. If you have a Gleason 3+3 based on only six cores then I would be worrying that there is more cancer and that additional cores would have turned up more. At least two cores in 12, but maybe more. So you're already gambling here, > Five days ago I had my first meeting with a PC-specialist in the BIG > hospital, who is also a surgeon, well reputated with about 100 > prostatectomy on his conscience. 100 is more than the "gold standard" of 50, but 100 isn't all that many. > As he had some time left (me being the last patient of the day) > We agreed that one more blood test and a DRE would be appropriate. > > DRE: no remarks > Ultrasound: no remarks My own Gleason 4+3 after surgical pathology and a one inch tumor was preceded by a DRE with no remarks and an Ultrasound with no remarks. > Today he called me and said my latest psa was 0.9 ?!?! A good sign, no doubt. But, that doesn't negate the presence of cancer. > but I said: -I don't want to undergo any treatment with readings as > they are now; one biopsy showing malignancy in zero point 5 millimeter > and a psa not rising but going DOWN. One in six isn't a very reliable indicator. A malignancy is a malignancy is a malignancy. You've got cancer. So you can watch and wait. But, I'd be sure to get a PSA done again in three months and I'd probably follow it with another biopsy and this time insist on 12 cores.. > So we agreed on having another biopsy in two weeks from today. > I want to have more malignancy cells, if you know what I mean. Insist on more than six cores. The number of malignant cells is interesting and somewhat relevant, but you're 47 and not 67. Those cells are going to multiply. So, when will you decide to have surgery? When you have two cores? Three? Gleason 4+4? > Any of you guys who have a theory or about > my risk in waiting at this stage? I'd wait the two weeks for the next biopsy and then decide based on the new data. But, personally, I wouldn't choose watch and wait at 47 years of age. OCL You don't need a theory about the risk of waiting, check the statistics: http://urology.jhu.edu/prostate/partintables.php With your numbers, the chances your cancer has escaped are listed as zero, because the number is so small. So take your time deciding what to do. I would (and did) challenge the diagnosis by getting a second opinion on the biopsy slides. jimhoney standard RRP age 52, cured, no significant aftereffects > Was diagnosed PC some 5 months ago > 3+3=6 in one of six biopsies (0.5 mm) [quoted text clipped - 54 lines] > > Roger / Stockholm, Sweden Jim writes: > You don't need a theory about the risk of waiting, check the statistics: > > http://urology.jhu.edu/prostate/partintables.php > > With your numbers, the chances your cancer has escaped are listed as zero, > because the number is so small. So take your time deciding what to do. Jim: Help me to understand this as you do. I don't read the Partin Tables as "zero" chance the cancer has escaped. I read them as Organ Confined: 90 percent (88-93) and Extraprostatic Extension at 9 percent (7-12). Sure, seminal vesicle and lymph node invasion are at 0 or up to 1 for seminal vesicles. But, he has a 10 percent chance that the cancer is NOT organ confined. I might take a couple of months to decide what to do and in that time have another biopsy, but at 47 I wouldn't wait around assuming that there is zero chance that the cancer has escaped. OCL If it's NOT organ confined, does that mean it has spread? Essentially, yes. 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 > If it's NOT organ confined, does that mean it has spread? > Jim writes: > [quoted text clipped - 16 lines] > wouldn't wait around assuming that there is zero chance that the cancer > has escaped. OCL appears to have a good handle on it. And consultation with a rad onc is an excellent idea, as suggested by IP. I was alone and had no objective advice when I began this war. My Gleason was 4+5=9, CS T2b (as learned later, it should have been a T2c), PSA only 5.7, rather low considering the Gleason score. Conclusion (mine, anyhow): learn about this killer and prepare to combat it. Take charge of treatment. The medic is the adviser, not the boss. Back to IP for a moment. in his post upthread, he writes, "It's pumping PC cells throughout your body as we speak." Not to be argumentative, but it seems to me that, based upon the Partin figures that OCL cites, there is a ~90% likelihood that this is not happening. If it is, then the PCa *may* be systemic, which is an entirely different game. 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 "Stephen Jordan" <mycroftscj@earthlink.net> wrote > > Back to IP for a moment. in his post upthread, he writes, "It's pumping PC > cells throughout your body as we speak." Not to be argumentative, but it > seems to me that, based upon the Partin figures that OCL cites, there is a > ~90% likelihood that this is not happening. If it is, then the PCa *may* > be > systemic, which is an entirely different game. I'm just referring to PC's propensity to dump cancer cells into the bloodstream, not to chances of mets. It can take decades -- or not -- for one of those circulating cells to find a home and survive the body's assault on it. But the cells are still there . . . circulating . . . looking . . . hoping . . . I.P. > "Stephen Jordan" <mycroftscj@earthlink.net> wrote > > [quoted text clipped - 4 lines] >> happening. If it is, then the PCa *may* be systemic, which is an >> entirely different game. And responded: > I'm just referring to PC's propensity to dump cancer cells into the > bloodstream, not to chances of mets. It can take decades -- or not -- > for one of those circulating cells to find a home and survive the > body's assault on it. But the cells are still there . . . circulating . > . . looking . . . hoping . . . Yes, when there is capsular penetration. That state of affairs is systemic PCa, not metastatic PCa. According to Dr. Strum and my personal med onc, my PCa is systemic but not yet metastatic. That's why I'm on ADT. Regards, Steve J What is the difference between systemic and metastatic? Lori, It's highly unlikely that you have any cancer cells outside your prostate with your numbers. At your age it's important for your futer quality of life issues to get the tumor removered before it does escape the prostate. There is no cure for prostate cancer to this day. There is no evidence that radiation or seeds are effective in getting all the tumor thereby giving you 30 to 40 more years of life. there is only speculation. Removing the prostate is effective as long as the tumor is contained and you have a high probability that it is. My psa was 6.7 and gleason was 3+4=7 and it's been two years without any psa. I had LRP. My suggestion would be look at Robotic LRP. There seem to be better results especially in the area of nerve sparing which would be important for your sex life. Ron S. In the context in which it was used, systemic means that the metastic cancer is spread throughout the body. My father lived for years with mets on his pelvis and lower ribs. He lived for months when it hit everything else. By the time he was done for, he had it in his brain, all his ribs, vertebrae, etc. He probably had it in his liver and elsewhere. That's systemic. 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 > What is the difference between systemic and metastatic? On May 22, Steve Kramer responded to Dick Smith's question: > In the context in which it was used, systemic means that the metastic > cancer is spread throughout the body. My father lived for years with > mets on his pelvis and lower ribs. He lived for months when it hit > everything else. By the time he was done for, he had it in his brain, > all his ribs, vertebrae, etc. He probably had it in his liver and > elsewhere. That's systemic. Not to be argumentative, but I think there's a difference. Reference to PCRI's glossary of PCa terms results in these definitions: "systemic: throughout the whole body; affecting the entire body." "metastatic: having the characteristics of a secondary tumor formed as a result of a cancer cell or cells from the primary tumor site (e.g., the prostate) traveling through the body to a new site and then growing there." I consider this to mean that, where the PCa is systemic, cells are free in the bloodstream, looking for a home, eg in the bones. Where it's metastatic, the cells have found a home and are building a new tumor. I have no *known* metastases, although there may be microscopic sites that would not appear on a scan. The ADT is intended to suppress any floating cells by depriving them of testosterone. Also, bisphosphonates such as Actonel, which I'm taking, tend to prevent metastases to bones. Regards, Steve J Stephen writes: > I consider this to mean that, where the PCa is systemic, cells are free > in the bloodstream, looking for a home, eg in the bones. Where it's > metastatic, the cells have found a home and are building a new tumor. Steve: Yah, that's how I understand the difference. Of course it may mean something different in a different context or it may depend on who is using the word "systemtic." But, like you, I understand that one can have systemic PCa where the cancer cells are looking for a home - I often describe it to people as "the cancer cells are looking for a place to build their new nest." But, those cells may eventually die - in fact, probably will die - if they don't find suitable accomodations. Metastatic could mean maybe two things - first, as you describe it where the cells have found a home and have collected into a new cancer community and they are constructing a new tumor. Although the word is also used to describe the stage of the cancer where the cancer cells have the ability to metastasize. So, when I went from a Gleason 3+3 to a 4+3 that transition from a 6 to a 7-10 is also considered a transition to metastatic PCa. Not that there are any mets, but the kind of cancer cells in stage 7 and up are able to metasticize. So, again, it may depend on context and on who is using the word. > I have no *known* metastases, although there may be microscopic sites that > would not appear on a scan. The ADT is intended to suppress any floating > cells by depriving them of testosterone. Also, bisphosphonates such as > Actonel, which I'm taking, tend to prevent metastases to bones. A close friend is in a similar place. He's doing ADT and Zometa. OCL Extraprostatic extension is hard to explain. It's explained in Dr. Walsh's book, which I don't have handy. But it does not mean the cancer has escaped. So there is a less than 1 percent chance that Roger's cancer has escaped and gone where it usually goes next (seminal vesicles etc.). If I were Roger, I would definitely wait around for a second opinion on the biopsy slides, and probably a second biopsy. jimhoney > Jim writes: > [quoted text clipped - 16 lines] > > OCL > If I were Roger, I would definitely wait around for a second opinion on > the biopsy slides, and probably a second biopsy. Jim: I'm with you on that, regardless of how we understand the Partin tables. I'd get a second opinion and a second biopsy. But, I wouldn't assume the best possible scenario when I know that I have malignant cancer in my prostate and I am 47 years old. OCL > Was diagnosed PC some 5 months ago > 3+3=6 in one of six biopsies (0.5 mm) [quoted text clipped - 24 lines] > > Today he called me and said my latest psa was 0.9 ?!?! Remember that your PSA values were not terribly high for someone your age in the first place. Also, there is some normal variation in PSA values when measured at different times. Finally, keep in mind that some prostate cancers don't produce specially high or rising PSA. Still it is a difficult choice. If you were in your 60s or older, watchful waiting might indeed be the right choice. But for someone your age, there really is a quandary. How about seeking another opinion from another urologist? > He still wanted us to opt for an operation ASAP "to be on the safe > side" [quoted text clipped - 25 lines] > > Roger / Stockholm, Sweden |
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