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Medical Forum / Diseases and Disorders / Prostate Cancer / August 2005Gleson 9 adjuvant HT RT. Experiences please?
Here's my situation, for the kind attention of the ng. Any day now I'm due to start hormone treatment Bicalutamide (Casodex) and Goserelin (Zoladex), then after six months, 7 weeks of daily conformal external beam therapy. HT continues for three years. I would be grateful for the experience of those who have been there, done that. I have Gleason 9 (4+5), PSA 13, T2a local advanced prostate cancer. Biopsies indicate it is still confined to the prostate. Age 77, soon 78, but not yet doddery, can walk fast, though I get a bit tired and very short-term memory seems to be on a precarious downward slope. I notice my 9 seems to be a bit rare in the ng. so I've assumed I don't have much choice but have treatment. Or do I? I had a Turp a year or so ago, went well, but peeing became intermittent again within months- cancer discovered. Peeing with Flomax quite reasonable at moment. Apart from bouts of extreme tiredness, and back pain which I've long had anyway, no other overt symptoms. I have good confidence in my urologist and oncologist but as there are few if any certainties I would be very interested in the experiences of guys who've already rowed this particular course. And thanks to all who give of their time to contribute to this group and help others in making difficult decisions. _________ Here's my own contribution to the group: I enjoyed the comment of a previous poster (my apologies for not having noted his name) who wrote: "I love how they say 'only 29% died of prostate cancer...'. That's 207.93 dead guys who are 100% dead of prostate cancer." My contribution: The same study figures showed that 66% of men with Gleason scores of 8, 9, or 10 died from prostate cancer. My comment: That means 260.78 men (34% of the sample) with G8-9-10, lived 100% ! MG Hi Mike...Gleason 9 is aggresive, so even at age 77 treatment makes sense, especially since you seem pretty active and otherwise healthy. A couple of thoughts on the HT part of your plan... 1) Make sure the doc starts the Casodex 10-14 days ahead of the Zoladex injection. Testosterone (T) stimulates PCa cell growth, so the purpose of the Zoladex is to shut down most T production. However, the mechanism by which Zoladex accomplishes this causes an initial surge in T production. This T surge might feel pretty good, but steps need to be taken to prevent it from stimulating PCa cell growth. Here's where the Casodex comes into play, it blocks T from binding to the receptor sites in the prostate thereby preventing the PCa growth spurt. 2) Even when the Zoladex has kicked in and is suppressing testosterone production, some T will be produced and two enzymes (5AR1, 5AR2) will convert this T to DHT. DHT is 5-10 times more potent than T in terms of stimulating PCa cell growth. Some have argued that even if T is suppressed to <20 ng/dL, if those levels are converted to DHT, it could be equivalent to a T level around 200! So some men on HT add Proscar or Avodart (Proscar only blocks one of the two 5AR isoenzyme pathways converting T to DHT, Avodart blocks both) to their HT regimen (ADT3) ...Best wishes and good health, Ron Were you been eating lots of soy and/or flaxseed before you were diagnosed with PCa? My model clearly shows that doing so can artificially give you a high Gleason score that should be lowered if you discontinue those foods. Ed Friedman > Were you been eating lots of soy and/or flaxseed before you were > diagnosed with PCa? My model clearly shows that doing so can > artificially give you a high Gleason score that should be lowered if you > discontinue those foods. Ed...What do you mean by, "artificially" give you a high Gleason? Do you mean as in the Finasteride context, soy and flaxseed can change the morphological appearance of PCa cells such that when viewed under the microscope they may be misgraded? If so, how would soy / flaxseed cause this to occur? I've never read about soy causing morphological changes in PCa, and with all the PCa work going on in the US and Japan, you'd think someone would have noticed this effect within the Japanese population. I also have two questions about your model. We know from autopsy studies that, roughly, PCa incidence increases 10% with every decade of life, such that about 30% of the male population in their 30's will have microscopic foci of PCa detectable upon autopsy. My hunch is that many of these men with microcopic PCa in their 30's become the men who have PCa detected upon biopsy in their 50's; and that men who don't get microcopic amounts of PCa until their 50's or later are the ones who get a "Get out of Urology Free" card. If this is correct then it is tantamount to saying that PCa is initiated in one-third of all men in their 30's. e.g. when their testosterone is in the high-normal range and all hormones are in balance. This doesn't seem to fit with your model which requires reduced T levels and hormonal imbalance. Secondly, whatever model we wind up with, don't you think it needs a genetic component that predisposes certain segments of the population to initiating the PCa process? Clearly certain genetic polymorphisms occur with increased frequency amongst men with PCa...Best wishes and good health, Ron >>Were you been eating lots of soy and/or flaxseed before you were >>diagnosed with PCa? My model clearly shows that doing so can [quoted text clipped - 28 lines] > occur with increased frequency amongst men with PCa...Best wishes and > good health, Ron Ron, To answer your last questions first, they have used the rate of growth and the size of the tumor when found to conclude that most PCa begins when men are in their twenties and thirties. This fits in with my model (which will be clearer in my next paper, which will also show how soy prevents PCa if you don't have PCa cells in you yet) in that teenage level of T is the minimum level necessary to prevent PCa formation. This also is confirmed by the observations of Dr. Leibowitz that a serum level of 1500 seems to be the minimum at which PSA slowly drops for men who have PCa and are on finasteride maintenance following hormonal blockade. When you refer to preventing PCa and genetics, you have to realize that what you are really talking about is the rate of cell division vs. the rate of cell death. All that is necessary to prevent PCa is to maintain systemic conditions within your body so that the rate of cell death is greater than the rate of cell division. This should both prevent PCa and BPH. Genetics and dietary elements can alter the rate of apoptosis to either promote or prevent PCa. As to the changing of the Gleason score, that merely requires that the Gleason score is an accurate representation of the aggressiveness of PCa. If PCa which doubles its population size rapidly has a high Gleason score, and PCa which doubles its population size much more slowly has a low Gleason score, then it stands to reason that if you greatly reduce the doubling rate of PCa, then you should reduce its Gleason score as well. I'm unaware of any studies to prove or disprove this assertion, since most men will have surgery or radiation shortly after detection of PCa making further biopsies impossible. Also, until my paper was published, there was no model for scientifically modifying systemic conditions to lower the rate of apoptosis, so no change in Gleason score could have been effected. As to the finasteride(F) context, soy and flaxseed will greatly reduce the rate of apoptosis when given with F (much more so then in the absence of F). Because of this, my model predicts that in the PCPT study, the reason there were more high grade Gleason scores within the F group was because it will be found that those men were ingesting large amounts of soy and/or flaxseed. Even those men with low Gleason scores in the PCPT group were probably ingesting some soy or flaxseed. Remember, Dr. Leibowitz and Dr. Tucker are achieving 100% success with early stage PCa with intermittent hormonal blockade, followed by F maintenance, but only because they tell their patients to avoid soy, flaxseed, etc. If the same warnings had been given to the men in the PCPT study, then the number of men on F who devloped PCa should have been extremely small (if any). Ed Friedman Ed...Thanks for the reply. There are a number of points I'd like to discuss further, but I think it would be difficult to establish the clarity and depth needed for a meaningful exchange by e-mail. Two relatively straight forward items that I would like to comment on follow... You wrote, "they have used the rate of growth and the size of the tumor when found to conclude that most PCa begins when men are in their twenties and thirties." I am not aware of this work, I am aware of published autopsy studies that show a relatively smooth increase in the microscopic incidence of PCa by decade of life. These studies do not find that all PCa has started during the 2nd and 3rd decade of life. You also state, "Dr. Leibowitz and Dr. Tucker are achieving 100% success with early stage PCa with intermittent hormonal blockade, followed by F maintenance" and while I follow their work with much interest, I would not say that they have 100% success. First, their studies are at the (median) 5-6 year point, the next 4-5 years will be telling. Further, in addition to the one death from metastatic PCa, several men have moved on to seek additional treatment; I would consider the patient's abandonment of HT as treatment failure...Best wishes and good health, Ron > Ed...Thanks for the reply. There are a number of points I'd like to > discuss further, but I think it would be difficult to establish the [quoted text clipped - 18 lines] > consider the patient's abandonment of HT as treatment failure...Best > wishes and good health, Ron Ron, I enjoy having people ask intelligent questions about my model, as you are doing. It helps me make sure that I am not overlooking anything. To answer your two questions: 1. The paper in question can be seen at: http://clincancerres.aacrjournals.org/cgi/content/abstract/1/5/473 2. To get a better idea of how big name doctors challenge Dr. Leibowitz's work, check out the web site at: http://web.archive.org/web/20030816154313/http://www.prostate-help.org/caleibo.htm When you read this, take into account that my model clearly shows that it is essential to eliminate soy and flaxseed intake in order for finasteride to be effective. Note how respectful the other doctors are to Dr. Leibowitz and how they say that they can't understand why they can't duplicate the results, and how something must be missing (in my opinion soy explains it all). As to why I call it 100% success, the one patient that died had ductile adenocarcinoma and not primary adenicarcinoma of the prostate. He was diagnosed by an outside institution for the first Dr. Leibowitz/Tucker paper, and was included because all of the patients for that study were diagnosed by outside institutions so that nobody could claim that they really didn't have PCa to begin with. In addition to no PCa deaths after 75 months average (with a range of 4-13 years), none of the patients had distant mets. Therefore, it is inconceivable to me that any of them will be dying from PCa after 10 years. Keep in mind, these patients initially had an average PSA of 11.1 and 32% of them were in the high risk group. There is no surgery or radiation study of PCa patients (even when all of the patients are low risk) that will give you no PCa deaths after 10 years. I also disagree with you that men seeking other treatment after starting Dr. Leibowitz's protocols are failures. This is just human nature, and it is rare for a man to be able to go against what almost all doctors in this country are telling him to do (surgery or radiation). To call them treatment failures, you would have to have some evidence of their condition when they left, e.g. very high PSA or evidence of spreading, etc. One of the selling points that Dr. Leibowitz and Dr. Tucker use is that with their protocol, you still can switch to surgery or radiation whenever you want (although in my opinion that is definitely the wrong decision to make). Ed Friedman > very short-term memory seems to be on a precarious downward slope. I > notice my 9 seems to be a bit rare in the ng. so I've assumed I don't > have much choice but have treatment. Or do I? Your 9 is shared by about 8% of the people here on this NG. Another ½% or so have 10. So, yes, you are awful high in that. However, your 13 aint too bad (have you been tested previously?) and your T2a is very good considering.... But, it's not necesarily all that accurate. Most people with your numbers that are between 55 and 70 would ahve a choice, but at 77 (going on 78), I imagine that your chances of living through an prostatectomy are less than living through prostate cancer; even with a G9. And, that G9 works against a surgery option. The good news is that at 78, your cancer will grow slowly. The bad news is HT isn't going to help your memory. > I have good confidence in my urologist Why? He TURPed you last year and didn't know you had high PSA? > few if any certainties I would be very interested in the experiences > of guys who've already rowed this particular course. Thanks to persistent cancer, I am experienced in surgery, radiation and hormones. The easiest was radiation. The hardest was surgery. Hormones are easily taken, but giving up on sex is hard. Losing a once-fine memory is hard. Hot-flashes were not bad with me, but others haven't been so lucky. And some become dehabilitated with fatigue -- not me. Mike G, I rarely post anything here anymore. I will respond to you because I am also a Gleason 4+5=9. The HT will certainly stop the cancer activity and your PSA will drop right away. HT can work for many years before you become refractory. If you are in good health and plan to live another 5+ years, then the radiation is certainly called for. Some oncologists feel that a Gleason of 9 or 10 is not as responsive to radiation as a lower Gleason would be. (a local oncologist told me that, and one urologist agreed with him ) The radiation usually has only limited side effects that go away when you are done with it. I think that due to the high Gleason score, that the three years of HT sounds good. At that point you can go off of it and see if and when the PSA starts rising again. It could take years to start rising again if it even ever does. If you have trouble tolerating the HT, then I would certainly look into stopping it after 18, 24, or whatever months. The reason that you could stop early is that the radiation should have done some magic. Remember that even though the doctor may encourage you to stay on for three years, no one can make you take that injection if you decide you want to stop. I think you are moving in the right direction and wish you the best of luck. Dale P Denver, CO So, how are you doing, Dale? Last I remember, you stopped and your PSA was on the rise.  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 > Mike G, > [quoted text clipped - 20 lines] > Dale P > Denver, CO (ka-snip) > I have Gleason 9 (4+5), PSA 13, T2a local advanced prostate cancer. > Biopsies indicate it is still confined to the prostate. Mike should not bet his life on that. Um, well, that's what he's doing, isn't it? What say the other staging tests? They are being performed, aren't they? Bearing in mind that we're all different, and that our reactions to dx and tx will differ, I can say this: Two years ago, at age 67, I was dx'd with a T2a (should have been T2b), PSA 5.7, Gleason 9 tumor. It was later discovered that there was another tumor, a Gleason 8, in the opposite hemisphere that had been missed on the first biopsy. The damned uro performed a cryoablation procedure, which he botched. I then had salvage IMRT + adjuvant ADT in October, 2004. So far, so good. Here's my advice: do not rely upon what you read here to make a decision. The info on this NG may be helpful, even on occasion correct, but we are all amateurs. The authoritative info is available on the website of the Prostate Cancer Research Institute at http://prostate-cancer.org/index.html Also, study the lifesaving book _A Primer on Prostate Cancer_ subtitled "The Empowered Patient's Guide" by Stephen B. Strum, oncologist and PCa specialist, and Donna Pogliano, a PCa warrior. The medics have little time to devote to really understanding their patients, giving AIUI only about 12 minutes to personal consultations every few months. This is utterly inadequate. That is why I go on and on about "Study, Learn, Take Charge!" Failing to do so defaults decisions to a medic who may have little time for and less knowledge of a particular patient's case. (snip) Regards, Steve J Mike: Granted the Gleason 9 is sobering, but the low PSA and treatments available to you are encouraging. Do not worry unnecessarily about an early demise due to the prostate cancer. From what I understand you have a good chance to meet your maker having succumbed to something totally unrelated to PCa. The memory loss is no fun, is it? I thought about taking the herbal stuff that is supposed to improve memory, but a friend did that and got headaches so I forgot that idea (no pun intended). Best of luck to you. David S. > Here's my situation, for the kind attention of the ng. Any day now I'm > due to start hormone treatment Bicalutamide (Casodex) and Goserelin [quoted text clipped - 38 lines] > > MG On August 18, Buttercup's Dad wrote, in pertinent part: > Granted the Gleason 9 is sobering, but the low PSA and treatments > available to you are encouraging. Sorry to be Gloomy Gus, but that high Gleason with low PSA is a sign of trouble. It *could* mean that the subject PCa consists of a high aneuploid cell component. Aneuploid PCa cells are resistant to tx via ADT. Not good news, as I know from personal experience. Regards, Steve J "Facts are stubborn things; and whatever may be our wishes, our inclination, or the dictates of our passions, they cannot alter the state of facts and evidence." --John Adams Ah, yes . . . one of the reasons I chose to refuse adjuvant ADT at least until PSA recurrence. I.P. > Sorry to be Gloomy Gus, but that high Gleason with low PSA is a sign of > trouble. It *could* mean that the subject PCa consists of a high aneuploid > cell component. Aneuploid PCa cells are resistant to tx via ADT. Not good > news, as I know from personal experience. >Here's my situation, for the kind attention of the ng. Any day now I'm >due to start hormone treatment Bicalutamide (Casodex) and Goserelin >(Zoladex), then after six months, 7 weeks of daily conformal external >beam therapy. HT continues for three years./snip I've already learned a good deal from the experiences of the guys who've very kindly answered including the 'been there done that' group like Dale P, Steve Kramer, I.P. and Steve J. Much thanks. I will follow up all books/websites suggested. Two posts in particular, based on personal experience, are quite new facts for me. Steve J wrote:" . high Gleason with low PSA is a sign of trouble. It *could* mean that the subject PCa consists of a high aneuploid cell component. Aneuploid PCa cells are resistant to tx via ADT. Not good news, as I know from personal experience. And I.P. wrote: Ah, yes . . . one of the reasons I chose to refuse adjuvant ADT at least until PSA recurrence." I hope to follow up these two posts. I am really glad to know possible downsides as well as the ups - it means I am getting the real McCoy. It means I can make more intelligent decisions. As regards other specific queries and comments: Ron: The Casodex two weeks before the Zoladex is already organised. Will see what my Onc and Uro replies to the ' add Avodart' suggestion, which, if it is correct that even greatly reduced T can be converted to much more harmful DHT, would appear to be a 'must' rather than an option. To Ed; No. I have a little soya milk - do not have 'lots of soya or flax seed'. For David S. Thanks for kind words, and I am genuinely not "worried unnecessarily" about my demise - early or late! I find myself quite fatalistic. Que sera sera. I've found, rather, a consuming 'need to know', especially so's I can plan intelligently for my wife, children and grandchildren. For Steve Kramer and Steve J. Re, first, the query about other tests you asked if I'd had. Here's some further info. The diagnosis so far has been a little confusing. I was first dx with T3. Follow-up bone scans showed nothing, but prostate scan indicated likelihood Ca had spread into seminal vesicle. Then had seminal vesicle biopsy. This showed no spread. So dx is now T2a. As Steve J suggests- and his own experience confirms - I'm not betting my life on it! And my questions for the ng are my real start to following the same track as he suggests - gathering knowledge. Already well into my first book -Prof. Jonathan Waxman, 'The Prostate Cancer Book'- the one available in my local library. It has some interesting thoughts. I'm not trying to outsmart my uro or oncologist. As I said, I have confidence in them (although Steve Kramer's comment does strike home that I had a TURP a year or so ago with no PSA or Pca anytime suggested. G9 developed in one year??I've been wondering, but saw no point in going over old ground. Plus I know the urologist's assistant did the op). But it is quite clear that they are working in a sausage-machine system (the NHS) which demands that the sausages (patients) be processed in a time-scale designed not for medicine, but for politically desirable statistics. The GPs and specialists are quite obviously aware they cannot always provide the quality or priorities medicinally required but there is nothing they can do about it. And they don't have much time for overlong discussion. That adds to all the uncertainties in the treatment of Pca - and makes this newsgroup and its posters so valuable. My thanks and very best wishes to everybody in the ng. MikeG > I'm not trying to outsmart my uro or oncologist. As I said, I have > confidence in them (although Steve Kramer's comment does strike home > that I had a TURP a year or so ago with no PSA or Pca anytime > suggested. G9 developed in one year??I've been wondering, but saw no > point in going over old ground. I am a proponent of not looking back. However, you do need to select the best personnel to take you into the future and the best indication of future behavior is past behavior. If I were you, I'd ask if a PSA test was taken the last few years and, if so, the results. If not, or if they were and he didn't note a rise (assuming there was a rise), you have a urologist that may know a lot about urology and close to nothing about prostate cancer. 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 On August 19, Steve Kramer wrote in pertinent part: > I am a proponent of not looking back. Unless, of course, one hopes to learn the lessons of history. (ka-snip) > If I were you, I'd ask if a PSA test was taken the last few years and, if > so, the results. If not, or if they were and he didn't note a rise > (assuming there was a rise), you have a urologist that may know a lot about > urology and close to nothing about prostate cancer. Amen, amen, amen! Regards, Steve J > On August 19, Steve Kramer wrote in pertinent part: > [quoted text clipped - 3 lines] > > (ka-snip) Yeah, as I sit here next to more than 100 books reflecting the history of my city, state, country and the world, each of which were written between 30 and 130 years ago, I guess I am a proponent of looking back ... for the sake of lessons of history. Steve and Stephen. Thank you. I will ask. I will then reflect, in the way you intimate. My guess (maybe it's only that - but I know he's also done a lot of research, and works on advanced techniques for prostate tretament) still is that I went through his hands as a number in his NHS casebook, tro be processed in the target times set by government (or get downgraded, lose money, stars, brownie points) not as a patient he personally had any real contact with or real interest in. They're all over their heads keeping up with the numbers - and assistants do the daily work rather than the specialist officially in charge of the case. I've seen three different assistants attending hospital for another problem - seen the specialist in charge of my case(who the appointment was for) once. That's how it works. Another story: Good friend of mine, lady in 80's had a bad cough -quite recently -few weeks ago. Treated on NHS. Big delays in dx because her X-rays were lost twice. After a few weeks they thought she had pneumonia. Husband couldn't get any definite news. The docs told him to come one morning when they were doing their rounds and they'd tried to tell him more, and when she could come home. They told him she had lung cancer. Few days later she was dead. It's the system here. The good side is that everybody can get treated. But how? My best wishes, and thanks. >> I'm not trying to outsmart my uro or oncologist. As I said, I have >> confidence in them (although Steve Kramer's comment does strike home [quoted text clipped - 10 lines] >(assuming there was a rise), you have a urologist that may know a lot about >urology and close to nothing about prostate cancer. |
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