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Medical Forum / Diseases and Disorders / Prostate Cancer / October 2004Further treatment??
Before LRP Age 61 PSA 9.5 Free PSA 10 Gleason 3+4=7 Local Lab Gleason 4+3=7 Johns Hopkins Lab Size 47 Grams 4 cores with 5% PCA each all from one lobe. All 6 other cores no PCA Bone scan and CT scan negative Acid phosphatase 1.6 (In normal range) Pathology Report After LRP Gleason 3+5=8 Stage T3/N0/M/0 Gleason score 8(stage III) Not in lympth nodes In Seminal vesicles Size 66 Grams Extracapsular extention Cancer is 25% of prostate all of prostate involved. Positive margins. PSA one month post op 0.10 PSA six weeks post op 0.02 My concern is what treatment to have done now. Any thoughts on the following are welcome. The surgeon said see radiation oncologist and also oncologist for aggressive treatment with radiation treatment to begin 3 to four months post LRP. See oncologist for possible chemo. I went to radiation oncologist and he wants to start one year of Lupron immediately(start right now, no waiting) and radiation to begin 6 weeks after beginning of Lupron. I am scheduled to see an oncologist in a week. Is it normal to do Lupron before radiation even after prostate has been removed? Does the Lupron need to continue even after radiation treatment has been completed? The radiation oncologist does not want to wait the 3 to 4 months post op to begin radiation treatment. The surgeon said wait to allow more healing from the operation. Which is best? The radiation oncologist said a PSA of 0.02 indicated I have growing cancer, it should be 0.00 by now(6 weeks post op) although I was told by the surgeon that is considered undetectable. What would be the normal treatment recommended for a patient like me? I feel like I am being railroaded by this radiation oncologist. There is only one radiation place in the area, I am considering going to another area for a second opinion. Roy By the way, the radiation oncologist said things like it is very curable if we act now/fast. 90% chance of being cured. My stats say otherwise based on all that I can find out otherwise. A PSA of 0.02 six weeks after surgery does NOT indicate residual cancer. Anything below 0.1 is considered undetectable by many. Ultra-sensitive tests can be a bane. Also, a reading 3 months after an RP is more reliable than one at 6 weeks. Most studies indicate that a PSA greater than 0.2 three months or more after an RP is a red flag. Radiation treatment is beneficial for cancer that is still localized. Lupron is palliative for cancer that has spread, but it is not curative. Radiation treatment could be curative if any residual cancer is still localized. >A PSA of 0.02 six weeks after surgery does NOT indicate residual >cancer. Anything below 0.1 is considered undetectable by many. [quoted text clipped - 5 lines] >curative. Radiation treatment could be curative if any residual cancer >is still localized. Thank You This is as I understand it too. Continues to make me think I should find another doctor. The rush to treat seems too rushed but they know you are desperate with that cancer still in you. What a great post! I wish I could have said that so well! I believe you hit the nail on the head! I am glad we have folks on this news group that can condense an issue, and put it in the right direction. John Loomis Wish the fellow the best fighting this aspect of cancer. > A PSA of 0.02 six weeks after surgery does NOT indicate residual > cancer. Anything below 0.1 is considered undetectable by many. [quoted text clipped - 5 lines] > curative. Radiation treatment could be curative if any residual cancer > is still localized. Roy, I have to ask this question, even if it makes me look stupid: your PSA is in the undetectable range (less than 0.1), so why do the doctors think you still have cancer? jimhoney > Before LRP > Age 61 [quoted text clipped - 56 lines] > > Roy > Roy, > > I have to ask this question, even if it makes me look stupid: your PSA is in > the undetectable range (less than 0.1), so why do the doctors think you > still have cancer? The post surgical pathology shows, among other things, Gleason 8, cancer in the seminal vesicles and positive margins. That means the cancer has definitely spread beyond the prostate. It is remotely possible that no more remains, but that seems unlikely. If the cancer is still confined to the local area, there is a good chance that radiation could destroy it if it is treated promptly. How promptly is a matter for professionals to decide, not us. > jimhoney > [quoted text clipped - 58 lines] >> >>Roy If cancer cells are still present, how can Roy's PSA be in the undetectable range? jimhoney > > Roy, > > [quoted text clipped - 72 lines] > >> > >>Roy > If cancer cells are still present, how can Roy's PSA be in the undetectable > range? A small amount of cancer might produce very little PSA. We do know that men can have an undetectable PSA for an extended period of time and then have a recurrence. That is why it doesn't suffice just to have one or two PSA tests at the beginning and then stop. I agree that a PSA of 0.02 ng/ml at 6 weeks is effectively undetectable. It seems unlikely that either doctor is basing his advice on the PSA reading, despite what the radiation oncologist told him. I think they are basing it on the factors I listed. As I said, it is certainly possible that despite those factors, the surgery got all the cancer. It is even possible that it is more likely than not. I am not a urologist so I just don't know. But it seems to me that the risk that there still is some cancer left is high enough that followup radiation is a reasonable course of action. I thought both doctors agreed about that but differed on when to start it. It would be a mistake for him to just drop the whole matter at this point. He says he is getting a third opinion, and he is wise to do so. > jimhoney > [quoted text clipped - 77 lines] >>>> >>>>Roy >> If cancer cells are still present, how can Roy's PSA be in the >> undetectable [quoted text clipped - 17 lines] > just drop the whole matter at this point. He says he is getting a third > opinion, and he is wise to do so. I've done some more checking on the web to refresh the little I know about ultrasensitive PSA testing following a radical prostatectomy. It appears that there is some controversy about this. Some people feel the ultrasensitive tests provide a warning many years in advance of real recurrence. They claim that any value above 0.01 ng/ml is detectable and suggest the PSA will continue to rise. Needless to say, the companies that sell the equipment to do such testing and the labs that do it believe that is the case. On the other hand, other urologists, particularly those at Hopkins, think that values that low don't mean anything. They think there can be considerable variation at the level of .02 - .05 on a day to day basis, which doesn't mean anything. They stick by the criterion that if it is below .1 it is undetectable and they say there is no point in using tests which distinguish values below that. Presumably both camps can cite studies supporting their case. Perhaps Roy's radiologist is in the first camp. But he still should have told Roy that there is some difference of opinion about the matter, and he believes that PSA is only truly undetectable if the measured value is below 0.01. I don't think it makes sense to talk about a measured value of zero because there is always a certain experimental error involved. But the radiologist may mean a value below 0.01 when he says it should be zero. I don't know what the current consensus among urologists is about which side is right. >> jimhoney >> [quoted text clipped - 77 lines] >>>>> >>>>> Roy >>> If cancer cells are still present, how can Roy's PSA be in the >>> undetectable [quoted text clipped - 43 lines] >I don't know what the current consensus among urologists is about which >side is right. That is part of the problem, there is no current consensous that I can see. The patient is left to decide by blindly following their doctors advice or researching and deciding which course to follow. >>> jimhoney >>> [quoted text clipped - 77 lines] >>>>>> >>>>>> Roy >> If cancer cells are still present, how can Roy's PSA be in the undetectable >> range? [quoted text clipped - 16 lines] >to just drop the whole matter at this point. He says he is getting a >third opinion, and he is wise to do so. I have no intention of dropping things. I am trying to find a reasonable course to follow for my further treatment. I accept that I need radiation. I am not sure when it should start. I accep that I might be helped by Lupron, I think at this time that a years worth might be too much. I have an appointment with an oncologist in a week. My problem with that is that in this area we have one group of radiation oncologists and one group of oncologists. Both groups have at least some offices in the same building. I wonder if they are too close to get an independent opinion. I know they know each other and probably work together on some cases. >> jimhoney >> [quoted text clipped - 77 lines] >>>>> >>>>>Roy >> Roy, >> [quoted text clipped - 9 lines] >it if it is treated promptly. How promptly is a matter for >professionals to decide, not us. Was not asking for a decision, just thoughts, ideas and opinions. I have input from surgeon and radiation oncologist and they differ markedly. Thank You >Roy, > [quoted text clipped - 3 lines] > >jimhoney >> Pathology Report After LRP >> [quoted text clipped - 9 lines] >> PSA one month post op 0.10 >> PSA six weeks post op 0.02 The pathology report says it with the Gleason 8 and positive margins etc. Roy, Have you read pp. 289-292 of Dr. Walsh's Guide to Surviving Prostate Cancer? It discusses situations like yours. It includes this quote from Dr. W's colleague Dr. Epstein: "So when pathologists call a positive margin, or for that matter, a close margin, it doesn't necessarily mean that these patients need some other form of therapy, like radiation--and also that they need not necessarily be tremendously worried." jimhoney not a doctor > >Roy, > > [quoted text clipped - 19 lines] > The pathology report says it with the Gleason 8 and positive margins > etc. >Roy, > [quoted text clipped - 10 lines] >jimhoney >not a doctor Yes, I have the book and read that and brought it up to this doctor and he Po Poed it off. > Yes, I have the book and read that and brought it up to this doctor > and he Po Poed it off. Roy, My husband also ended up having positive margins and seminal vesicle involvement as well as bladder neck extension with a psa 5 and gleason 7 (4+3). He required post op radiation and hormonal therapy. He ended up having 37 IMRT treatments 5 months post op. Also, his medical oncologist suggested not one year but TWO years of hormones to be started prior to the radiation and continue for a full two years post radiation. My husband has been on the hormones for 10 months and at this point my husband wishes to discuss initiating intermittent hormonal therapy with the oncologist. The side effects have been unrelenting for him. I think you are smart to get second opinions or whatever until you are comfortable with your treatment options. It took us a while post surgery to accept the realization that our battle was not over and we needed time to deal with the new reality. I'm not advocating my husbands treatment options. I just wanted you to see the avenue we took. I know its frustrating to realize that ultimately there is no one right answer. You have to find a doctor and treatment option that you believe in and go from there. I also brought in Dr. Walsh's book and earmarked some pages in reference to the positive margins, etc. for the oncologist to read and he was quick to counter attack some of the readings. My husbands medical oncologist tries to be positive in regard to my husbands prognosis but his radiation oncologist stated that although the radiation could deal with the bladder neck and positive margins, the seminal vesicle invasion is something else. She told him that once it gets in the seminal vesicles, its hard to treat and control. All the best in your search. Let us know what you decide to do. Sandi >>Yes, I have the book and read that and brought it up to this doctor >>and he Po Poed it off. [quoted text clipped - 30 lines] > the seminal vesicle invasion is something else. She told him that > once it gets in the seminal vesicles, its hard to treat and control. I think one has to be careful about what that means. I am certainly not an expert, but my impession from what I've read is that the issue is whether or not the cancer has spread beyond the local area. If it has, then no amount of local treatment is going to prevent advanced disease. It is possible it may slow it down by preventing more spread, but eventually the cancer at the distant sites will develop. On the other hand, if the cancer is still restricted to the local area and hasn't developed what they call metastatic capability, then radiation can kill it and produce a cure. Unfortunately, there is no way to know which of these scenarios applies to you. One way to think about it is illuminated by something my urologist told me. He said "Those are statistics, but you are one person. Either it happens or it doesn't." Cancer in the seminal vesicles means the likelihood of distant spread is higher, but it is by no means certain. There is a fairly good chance it hasn't spread, and if so the radiation treatment will kill it off before it does. > All the best in your search. Let us know what you decide to do. > > Sandi > Before LRP > Age 61 [quoted text clipped - 36 lines] > Is it normal to do Lupron before radiation even after prostate has > been removed? Many radiation oncologists do that. The Lupron makes the cancer cells more susceptible to damage by radiation. The HT in this case is usually temporary. However, a lot of this changes pretty fast based on new research, so your doctor may have something else in mind. It is best to ask him why he is doing it. > Does the Lupron need to continue even after radiation treatment has > been completed? Same answer. > The radiation oncologist does not want to wait the 3 to 4 months post > op to begin radiation treatment. The surgeon said wait to allow more > healing from the operation. Which is best? It is a question of balancing the damage to tissues that haven't had a chance to recover and the risk of the cancer spreading. Only a medical professional can advise you about the relative risks. > The radiation oncologist said a PSA of 0.02 indicated I have growing > cancer, it should be 0.00 by now(6 weeks post op) although I was told > by the surgeon that is considered undetectable. I believe that .02 is at the level of observational error. Perhaps you need a third independent opinion to mediate. They both can't be right. > What would be the normal treatment recommended for a patient like me? You are at substantial risk for spread, so I don't think there is anything you could call "normal treatment". > I feel like I am being railroaded by this radiation oncologist. It does sound that way, but maybe he knows something we don't know. > There is only one radiation place in the area, I am considering going > to another area for a second opinion. That would be a good idea. > Roy Thanks for all the input so far. Still would like to read more. Looks like I better go for a third opinion from another radiation doctor. I read this doctor as one that knows he is right and is not interested in my research, thoughts and opinions. Since he has already said that PSA of 0.02 is a bad reading, everything else he says is suspect to me. Roy > Thanks for all the input so far. Still would like to read more. > [quoted text clipped - 5 lines] > PSA of 0.02 is a bad reading, everything else he says is suspect to > me. I understand how you feel. Doctors can be really annoying at times. They may say something that seems to you to be wrong, and they may be very arrogant about questions you may ask. In the end you have to decide if this particular doctor can do a good job at the specific procedures he is going to administer. But you definitely should get another opinion, this time, we hope, from someone who is willing to answer your questions. The more important thing to settle is just when is the best time to start radiation therapy, and he definitely told you something different about that than what your urologist recommended. Someone else in this group was told something similar by a radiation oncologist, but I don't remember the details. > Roy >> Thanks for all the input so far. Still would like to read more. >> [quoted text clipped - 11 lines] >decide if this particular doctor can do a good job at the specific >procedures he is going to administer. The doctor did not like that I had opted for a LRP instead of his Lupron and radiation plan obvious by his comments to me on this visit. I am accepting that I need radiation. I am not accepting that I need a year of Lupron at this point. 4 months seems more reasonable to me but what do I know. He says If I had accepted Radiation instead of LRP he would have used IMRT. Now he says I need EBRT instead of IMRT. But at that time he said either seeds or external radiation, my choice. Well, in my ignorant eyes if IMRT would not work now, it would not have worked then. I don't see the difference, not that I care, just pointing out the inconsistancies in his dealing with me. >But you definitely should get another opinion, this time, we hope, from >someone who is willing to answer your questions. The more important [quoted text clipped - 6 lines] > >> Roy Did I mention that this radiation oncologist said I have a 90% of being cured if I do what he wants...now? From what I have read that is hard to believe. What is the old saying "if it sounds too good to be true".... All of the signs other than that 0.02 are bad, but with that 0.02 you have a reasonable chance that it will not recur. What is that radiation oncologist's definition of "cure"? I am infamous for my assertion that prostate cancer is never "cured", but enjoy your reprieve and get your PSA measured twice a year for a while... ;-} >All of the signs other than that 0.02 are bad, but with that 0.02 you have a >reasonable chance that it will not recur. What is that radiation oncologist's >definition of "cure"? I am infamous for my assertion that prostate cancer is >never "cured", but enjoy your reprieve and get your PSA measured twice a year >for a while... ;-} He did not define cure. I did not buy his cure statement. I might buy a cure statement for someone with a lot less bad indicators than me. I think if he could cure 90% of the men with my indicators he would be flooded with more patients than he could handle. Roy >Subject: Re: Further treatment?? >From: Roy lostname@juno.com [quoted text clipped - 17 lines] > >Roy I read some of the other articles here after I posted- they have good advice. I had better indicators after RRP than you have, and I am in horrible shape! ;-} The radiation will take something like forty days(about six weeks) and it takes time to shrink the prostate with Lupron, so the year may be about shot by the time you finish it all. I had Casodex and Proscar, which brought my PSA down from 12 to 0.5 in six weeks, before radiation was started. Be aggressive- there is a good chance you can live many years with only an occasional PSA blood draw to remind you that you have cancer. The attitude that you are "cured" might incline you to skip a blood draw for that PSA- don't do it. Good luck! >>Subject: Re: Further treatment?? >>From: Roy lostname@juno.com [quoted text clipped - 28 lines] >"cured" might incline you to skip a blood draw for that PSA- don't do it. >Good luck! But I have no prostate to shrink. I realize that the Lupron may shrink any cancer in me but I don't think it will cure or kill any cancer. My understanding is that lupron is used to shrink the cancer to give the radiation a better chance to kill it. To continue Lupron after radiation is what I question. He wants to start the radiation 6 weeks after the start of Lupron. Looks to me like 3 months of Lupron would do it. I have no illusions about ever being cured of this and plan to get regular PSA checks as long as I live. Roy > I have no illusions about ever being cured of this and plan to get > regular PSA checks as long as I live. You may have your illusions. There is currently no cure for advanced prostate cancer. However, there may be one or two in the near future. We just have to live that long.  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 (3 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non illegitimi carborundum >> I have no illusions about ever being cured of this and plan to get >> regular PSA checks as long as I live. > >You may have your illusions. There is currently no cure for advanced >prostate cancer. However, there may be one or two in the near future. We >just have to live that long. It may be nice and helpful to have illusions and a positive attitude but I have neither. It would be nice to have a cure and I hope for same. I do wish to live until it comes. >>>I have no illusions about ever being cured of this and plan to get >>>regular PSA checks as long as I live. [quoted text clipped - 6 lines] > but I have neither. It would be nice to have a cure and I hope for > same. I do wish to live until it comes. Roy, I don't want to sound unreasonably optimistic, but you don't yet know that the cancer has spread to distant sites. It is still possible that the cancer is localized, and radiation will destroy it. I know it is hard to do, and I'm not confident I could do it in your place, but the best approach is to assume you are one of the lucky ones until you know differently. There have been a couple of people who posted to this newsgroup who had negative findings similar to yours but who never had a recurrence. >>>>I have no illusions about ever being cured of this and plan to get >>>>regular PSA checks as long as I live. [quoted text clipped - 17 lines] >newsgroup who had negative findings similar to yours but who never had a >recurrence. I know there is a chance the cancer will not return. Just my experience with others I knew that got it are all gone. >>>>>I have no illusions about ever being cured of this and plan to get >>>>>regular PSA checks as long as I live. [quoted text clipped - 20 lines] > I know there is a chance the cancer will not return. Just my > experience with others I knew that got it are all gone. There is the famous case of Stephen Jay Gould, the famous evolutionary biologist. He was diagnosed with mesothelioma for which the odds are much worse than even advanced prostate cancer. He looked at the statistics and found that a small but significant number of patients did survive, so he assumed he would be one of them and did the best he could to ensure that would be the case. He eventually did die, although it is not clear if it was the mesothelioma, but he lived much, much longer than typical mesothelioma cases. If you can find the essay he wrote, you mind find it helpful. > >You may have your illusions. There is currently no cure for advanced > >prostate cancer. However, there may be one or two in the near future. We > >just have to live that long. > It may be nice and helpful to have illusions and a positive attitude > but I have neither. It would be nice to have a cure and I hope for > same. I do wish to live until it comes. Well, "illusion" was a pretty stupid word for me to use. Obviously, no one really wants illusions. How about hope? Can't help you on the attitude. If you could do something to help your attitude, it is possible that will help your body fight the disease. But, we all go through something in those first few months. I was at a level of denial for maybe 12 months. I've been on this NG for three years and just recently got the nerve to ask for my records from my doc to see what really happened in that 12 months. Hope you're feeling better about this in a shorter time than it too me. 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 (3 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non illegitimi carborundum >> >You may have your illusions. There is currently no cure for advanced >> >prostate cancer. However, there may be one or two in the near future. [quoted text clipped - 16 lines] > >Hope you're feeling better about this in a shorter time than it too me. As you can tell, I don't have the positive attitude some think needed. I don't think I am in denial. I have started and depression pills to see if they will help the depression I know I have. My main concern now is understanding the what and why of the treatment the doctors want me to have. Since there is no gold standard for treatment the patient is left to decide for himself what treatment to take or just turn himself over to the doctors and take what they say. I guess I would like to understand the why and wherefores including side effects. > My main concern now is understanding the what and why of the treatment > the doctors want me to have. Since there is no gold standard for > treatment the patient is left to decide for himself what treatment to > take or just turn himself over to the doctors and take what they say. > I guess I would like to understand the why and wherefores including > side effects. And THAT is exactly the track you should be on right now. I salute you. 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 (3 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non illegitimi carborundum > I realize that the Lupron may > shrink any cancer in me but I don't think it will cure or kill any [quoted text clipped - 3 lines] > weeks after the start of Lupron. Looks to me like 3 months of Lupron > would do it. Hi Roy...There is a fair amount of evidence that hormone therapy can cause apoptosis in non-hormone resistant PCa cells. A very educated patient, Ralph Valle, posted these references in another PCA discussion group in support of this contention...Best wishes and good health, Ron 1: Reuter VE. Pathological changes in benign and malignant prostatic tissue following androgen deprivation therapy. Urology. 1997 Mar;49(3A Suppl):16-22. Review. PMID: 9123731 [PubMed - indexed for MEDLINE] 2: Armas OA, Aprikian AG, Melamed J, Cordon-Cardo C, Cohen DW, Erlandson R, Fair WR, Reuter VE. Clinical and pathobiological effects of neoadjuvant total androgen ablation therapy on clinically localized prostatic adenocarcinoma. Am J Surg Pathol. 1994 Oct;18(10):979-91. PMID: 7522415 [PubMed - indexed for MEDLINE] 3: Montironi R, Pomante R, Diamanti L, Magi-Galluzzi C. Apoptosis in prostatic adenocarcinoma following complete androgen ablation. Urol Int. 1998;60 Suppl 1:25-9; discussion 30. PMID: 9563141 [PubMed - indexed for MEDLINE] 4: Polito M, Muzzonigro G, Minardi D, Montironi R. Effects of neoadjuvant androgen deprivation therapy on prostatic cancer. Eur Urol. 1996;30 Suppl 1:26-31; discussion 38-9. PMID: 8977987 [PubMed - indexed for MEDLINE] 5: Kyprianou N. Apoptosis: therapeutic significance in the treatment of androgen-dependent and androgen-independent prostate cancer. World J Urol. 1994;12(6):299-303. Review. PMID: 7881465 [PubMed - indexed for MEDLINE] >Subject: Re: Further treatment?? >From: Roy lostname@juno.com [quoted text clipped - 39 lines] >>Good luck! >But I have no prostate to shrink. I realize that the Lupron may hmmm... neither did I. but my PSA was too high. Anyway, be aggressive. Your physician is being aggressive. My physician is agressive, a wonderful man. ;-} >shrink any cancer in me but I don't think it will cure or kill any >cancer. My understanding is that lupron is used to shrink the cancer [quoted text clipped - 7 lines] > >Roy >>Subject: Re: Further treatment?? >>From: Roy lostname@juno.com [quoted text clipped - 43 lines] >physician is being aggressive. My physician is agressive, a wonderful man. > ;-} I will end up going with what the doctors say but I do want a third opinion. Now I have conflicting opinions from doctors as to what to do. >>I understand how you feel. Doctors can be really annoying at times. >>They may say something that seems to you to be wrong, and they may be [quoted text clipped - 20 lines] >>therapy, and he definitely told you something different about that than >>what your urologist recommended. Roy... First of all, I think that the patient should *always* read and research and take part in the decision concerning treatment, rather than blindly following the doctor's advice. So you are doing the right thing. Secondly, this is just my non-medical opinion, but it seems your gut is telling you this guy is not the right one for you. And the doc you are seeing for a second opinion may have coffee with your primary doc every morning... so where's the objectivity in that? I'd want to find someone independent of this guy, if possible.... someone who will be completely objective. I don't know how feasible it is for you to drive to another city, but I would be looking into it! Take care.... good luck... MikeH >>>Thanks for all the input so far. Still would like to read more. >>> [quoted text clipped - 26 lines] > then. I don't see the difference, not that I care, just pointing out > the inconsistancies in his dealing with me. I don't mean to defend the guy, but it is possible there might be some merit to what he says. For example, any method has to balance damage to surrounding tissues with the ability to destroy the cancer. In addition, the dosage that is appropriate as primary treatment might be different from the dosage which is appropriate as secondary treatment. Unfortunately, many doctors think they are helping you so you should meekly accept what they say. They get impatient if you argue with them and cut you short. Wiser physicians realize that it is your life, not theirs that is at stake, and it is normal for you to question everything. Gratitude to the physician should not be a factor. I think it is clear this guy is in the first category. You would clearly be better off with a doctor who understands the feelings of his patients and is willing to be patient to explain everything clearly. >>But you definitely should get another opinion, this time, we hope, from >>someone who is willing to answer your questions. The more important [quoted text clipped - 6 lines] >> >>>Roy >>>>Thanks for all the input so far. Still would like to read more. >>>> [quoted text clipped - 40 lines] >better off with a doctor who understands the feelings of his patients >and is willing to be patient to explain everything clearly. I agree with you. I left feeling I was/am the bad guy here. >>>But you definitely should get another opinion, this time, we hope, from >>>someone who is willing to answer your questions. The more important [quoted text clipped - 6 lines] >>> >>>>Roy Roy, You might find this website interesting; prostatepointers.org/prostate/leibowitz. It makes a lot of since to me. Others may disagree but radiation of any kind after surgery doesn't show to help in the long term. Plus you have already have had your quality of life reduced from the surgery and compounding it with radiation doesn't sound attactive to me. My PSA was undetectable for the first year, however my last test was 0.1 and may indicate a rise. I have an appointment with a urologist and will inquire about high dose testosterene therapy combined with Cox-2 inhibitors such as Proscar or the newer Avodart. Ron > Roy, > You might find this website interesting; [quoted text clipped - 7 lines] > with Cox-2 inhibitors such as Proscar or the newer Avodart. > Ron Leibowitz may be right about everything he says, but I think it is fair to say that not many urologists agree with him. > Is it normal to do Lupron before radiation even after prostate has > been removed? I would not say it is "normal", but I have noted a myriad of different treatments, conducted in different orders, including a couple of others where the doc wanted cancer cells reduced (starved) prior to zapping them. > Does the Lupron need to continue even after radiation treatment has > been completed? I would say no. After radiation, your doc will probably wait to see what yoru PSA does. > The radiation oncologist said a PSA of 0.02 indicated I have growing > cancer, it should be 0.00 by now(6 weeks post op) although I was told > by the surgeon that is considered undetectable. 0.02 is a very good PSA. I'm going to assume your overall health is good. You probably have many many healthy long years ahead of you if this PC doesn't get you first! The fact that you have evidence of escaped PC is the reason they are looking at additional treatment. Would you prefer that the PSA comes back in six months or a year with a 4.5??? Or would you rather nail those few stray cells right now where they are? Right now the PSA is good. But the pathology report sucked.The lupron is hopefully going to starve those more distant cancer cells. The radiation will kill the cancer cells within the prostate bed area. You've gotten this far with the surgery. Give yourself another year to actively battle this cancer. The radiation is not going to hurt! And a few hot flashes is hardly worth complaining about especially to post menopausal women. LOL You'll probably have EBRT on an IMRT machine. They are not going to do the precision radiation because they want a more spread out range. IMRT is the better piece of equipment and they can run the EBRT through it. Do you want to wait until your PSA begins to rise and then maybe you'll have a very difficult time trying to win the war or go to battle now while the cancer is tiny? They know the cancer is there from the path report - so what are you waiting for???? Radiation is not torture, it might be an inconvenience to go everyday and get zapped but look at the long range of outcome. In 18 months you can be looking back on this whole ordeal and saying "thank goodness that is behind me" or you can avoid additional treatment and hope that you are not facing a "damn, I should have taken the lupron and radiation when it was first offered". What kind of a gambler are you? If you were my husband I'd tell you to get your butt in there and take your lupron and start your radiation as soon as possible! Bev > Before LRP > Age 61 [quoted text clipped - 56 lines] > > Roy >I'm going to assume your overall health is good. You probably have many many >healthy long years ahead of you if this PC doesn't get you first! The fact >that you have evidence of escaped PC is the reason they are looking at >additional treatment. Would you prefer that the PSA comes back in six months >or a year with a 4.5??? Or would you rather nail those few stray cells right >now where they are? I have planned all along to get radiation treatment. Overall health is good. >Right now the PSA is good. But the pathology report sucked.The lupron is >hopefully going to starve those more distant cancer cells. The radiation >will kill the cancer cells within the prostate bed area. Are you serious? I have never heard of Lupron starving cancer cells. Can you tell me a website that tells about this? >You've gotten this far with the surgery. Give yourself another year to >actively battle this cancer. The radiation is not going to hurt! And a few >hot flashes is hardly worth complaining about especially to post menopausal >women. LOL I am not questioning the need for radiation. >You'll probably have EBRT on an IMRT machine. They are not going to do the >precision radiation because they want a more spread out range. IMRT is the >better piece of equipment and they can run the EBRT through it. I was questioning...if he had used IMRT on me instead if me getting the LRP would the IMRT have gotten the cancer that he is now gunning for. All water under the bridge now. I bring it up because he berated me for getting the LRP instead of letting him IMRT me instead. >Do you want to wait until your PSA begins to rise and then maybe you'll have >a very difficult time trying to win the war or go to battle now while the [quoted text clipped - 9 lines] >If you were my husband I'd tell you to get your butt in there and take your >lupron and start your radiation as soon as possible! And I would tell you to Buzz off. My brain is not fried yet. >Bev I have never planned to stop further treatment. I am questioning the need to rush to start treatment today and also the need for a years Lupron. Also the attitude of this doctor. I read him as one with a God complex-do as I say-I am right-end of discussion. Thank You for your comments. Roy > Are you serious? I have never heard of Lupron starving cancer cells. > Can you tell me a website that tells about this? That is the whole purpose of Lupron. Most PCa cells are depend on testosterone laden androgens to live. Testosterone is produced by the testes. Lupron make a gland (I forget which one) tell the testes to stop producing testosterone. You stop having sex and the cancer cells starve..... for awhile. 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 (3 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non illegitimi carborundum >> Are you serious? I have never heard of Lupron starving cancer cells. >> Can you tell me a website that tells about this? [quoted text clipped - 4 lines] >producing testosterone. You stop having sex and the cancer cells >starve..... for awhile. It does not say that Lupron kills anything at the Lupron website. I understand it stops the growth temporarily and may shrink it but kills nothing. http://www.lupron.com/ >Subject: Re: Further treatment?? >From: Roy lostname@juno.com [quoted text clipped - 13 lines] >nothing. >http://www.lupron.com/ It does kill cancer cells, but not all of them, unless there are only a few. If there are only a few scattered around, inaccessable to the radiation, the Lupron might kill them all and leave you actually cured, although you will never know that. But then, after twenty years or so of no recurrence, you might suspect that you are. >>>Are you serious? I have never heard of Lupron starving cancer cells. >>>Can you tell me a website that tells about this? [quoted text clipped - 9 lines] > nothing. > http://www.lupron.com/ I tink Steve has explained it pretty well. All normal prostate cells and most prostate cancer cells need testosterone to grow. If the supply of testosterone is cut off, those cells stop growing. That effect is not temporary, as far as those cells are concerned. The problem is that some prostate cells can grow without testosterone, and even if the others are stopped from growing, the HT independent cells will continue to multiply and eventually will take over. I gather there is still some difference of opinion about whether the HT independent cells are there from the beginning or develop by mutation from the others. HT also makes the prostate cancer cells more susceptible to radiation damage. Ah, I see. Yes, you're probably right. It starves the cell but something else kills it, probably immune system. Regardless, not all of them are killed. 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 (3 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non illegitimi carborundum > >> Are you serious? I have never heard of Lupron starving cancer cells. > >> Can you tell me a website that tells about this? [quoted text clipped - 8 lines] > nothing. > http://www.lupron.com/ >Ah, I see. Yes, you're probably right. It starves the cell but something >else kills it, probably immune system. Regardless, not all of them are >killed. One article I read, probably from this newsgroup, said the number of cells in the cancer is the same after Lupron. They are just smaller. Or did I just dream that? I'm a lurker and occasional poster to this group. I started IMRT treatments last week, so I'm not in the RP group, as you are. But reading the posts to your thread, and having spent lots of time researching the PCa subject, I felt I should say something. It sounds as though you may be trying to read too much from your post-op PSA reading. It seems to me, from what I've read, that the pathology results (capsular penetration, etc.) should carry much more weight than the PSA readings. I would respect your doc's advice to go after what's left as soon as possible. I won't comment on the requirement for hormone therapy at your point (because I don't know much about it), but I'd sure consider radiation now. When I chose radiation over RP, I was aware that one of the advantages of RP was that radiation therapy after RP was possible (the opposite is not true). If I were you, I'd capitalize on this advantage. Good luck, and God bless your choice. Jim Thomas >I'm a lurker and occasional poster to this group. I started IMRT >treatments last week, so I'm not in the RP group, as you are. But [quoted text clipped - 16 lines] > >Jim Thomas I plan on the radiation. My concerns are the rush to start, I like a few days to mull it over, and the Lupron, especially for a year. <SNIP> > I was questioning...if he had used IMRT on me instead if me getting > the LRP would the IMRT have gotten the cancer that he is now gunning > for. All water under the bridge now. I bring it up because he > berated me for getting the LRP instead of letting him IMRT me instead. <SNIP> According the the numbers you first posted you were a canadate for RP. Like you say water under the bridge. Would IMRT have gotten it??? Maybe and maybe not. Who knows? At least you still fight the PC with IMRT. If IMRT doesn't work this time then it probably would not have worked the first time so you'd still be on lupron. PSA's, Gleason scores, scans, and pathology reports only provide a glimpse and do not "see" everything. No one can tell you if you have 3 loose PC cells traveling around in your body looking for the perfect place to settle down and wreek havoc. There has been some research on marking cancer cells so they can be found and targeted but right now it is more a theory then anything else. To me it seems as if your doctor is being very agressive and this has to be based on your path report not your PSA score. I agree some doctors do have that attitude that they know what is best and theirs is the only answer!Sure you could wait 5 or 6 years and see if your PSA starts to rise or maybe it would only be 6 months. There are no garentees with PC. Get another opinion - get three. See how many side with your present doctor and how many don't and why. Taking some time to think this through is not going to hurt. Get the lupron - it's going to buy you time. Then make an informed decision about your treatment plan. Besides morst doctors seem to want a 6 month waiting period after a RP before starting radiation. But being you had a an LRP maybe they can start sooner as you were not as banged up from the surgery as you would have been with a standard RP. What part of Gleason 3+5=8, Stage T3/N0/M/0, Gleason score 8(stage III), In Seminal vesicles, Extracapsular extention, Positive margins did you NOT understand? You have advanced proatate cancer!!! You still have a chance to treat it successfully. Bev ><SNIP> >> I was questioning...if he had used IMRT on me instead if me getting >> the LRP would the IMRT have gotten the cancer that he is now gunning >> for. All water under the bridge now. I bring it up because he >> berated me for getting the LRP instead of letting him IMRT me instead. ><SNIP> >According the the numbers you first posted you were a canadate for RP. Like >you say water under the bridge. Would IMRT have gotten it??? Maybe and maybe >not. Who knows? At least you still fight the PC with IMRT. If IMRT doesn't >work this time then it probably would not have worked the first time so >you'd still be on lupron. He says no imrt now, ebrt for me now. >PSA's, Gleason scores, scans, and pathology reports only provide a glimpse >and do not "see" everything. No one can tell you if you have 3 loose PC [quoted text clipped - 8 lines] >PSA starts to rise or maybe it would only be 6 months. There are no >garentees with PC. I only wanted to wait a few days to think, research and get other opinions. He thought I should start right then. >Get another opinion - get three. See how many side with your present doctor >and how many don't and why. Taking some time to think this through is not [quoted text clipped - 3 lines] >being you had a an LRP maybe they can start sooner as you were not as banged >up from the surgery as you would have been with a standard RP. He did not want me to take any time, start immediately, Now! He saud no need to wait to heal. >What part of Gleason 3+5=8, Stage T3/N0/M/0, Gleason score 8(stage III), In >Seminal vesicles, >Extracapsular extention, Positive margins did you NOT understand? You have >advanced proatate cancer!!! You still have a chance to treat it >successfully. I understand all of that. The surgeon went over the path report line by line explaining all the points. I am not sure I explained myself properly. I have always planned to get more treatment, just wanted to have a little time to mull it over and understand things. Roy >Bev They can still use the IMRT equipment for the EBRT. My husband had EBRT on an IMRT machine. Take the Lupron. It won't hurt you. Somebody else just posted that they are having RT now after RP in August. Bev > ><SNIP> > >> I was questioning...if he had used IMRT on me instead if me getting [quoted text clipped - 50 lines] > Roy > >Bev Roy, I don't know about Lupron etc. but I do know about PSA. I have never seen literature stating that PSA should be zero, either pre op or post op ... Call the laboratory that did the PSA and find and ask for the Normal Range or Normal Post Op. range. As a side line, for the future, try selenium and broccoli or garlic. You can get more information on these in www.iq-lab.com > Before LRP > Age 61 [quoted text clipped - 56 lines] > > Roy >Roy, I don't know about Lupron etc. but I do know about PSA. I have never >seen literature stating that PSA should be zero, either pre op or post op >... Call the laboratory that did the PSA and find and ask for the Normal >Range or Normal Post Op. range. As a side line, for the future, try selenium >and broccoli or garlic. You can get more information on these in I have started selenium, lycopene and vitamen e. The nurse at the surgeons office said my reading of 0.02 meant undetectable. >www.iq-lab.com >> Before LRP [quoted text clipped - 57 lines] >> >> Roy |
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