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Medical Forum / Diseases and Disorders / Prostate Cancer / May 2005Sanity check
A reminder of my magic numbers (hm, maybe I should play the lottery with these) - Age 47, PSA 6.8, 4.3, 4.8 over the past 6 months (no previous PSA, the first one is probably unrealistic because no-one told me not to ride my bike, make love, etc. the day before getting the blood draw), T1c, Gleason 3+3=6 (15mm left lobe), nothing at all visible on TRUS, Prostate volume normal for my age. Now add the following facts: - If I had to, I could live with 100% loss of sexual function. Would I be pleased? No. Would it ruin my life? No. I would still enjoy so many, many other things in life (food, wine, music, wildflowers, birding, hiking, biking, the company of good friends and family, hanging out on USENET with you guys :-), etc., etc., etc.), I could manage very well without that aspect. I know the risk of that is very low, it's just my way of saying that sex-related SE is a risk I am comfortable with, no matter what. - Mild, urinary incontinence is somthing many, many women who have given birth live with for most of their adult lives. It would be rather precious of me to say I couldn't do the same. Even with severe urinary incontinence, I would still find life well worth living - adapt and move on. I am not squeamish about bodily functions; handling a wet pad is just not an issue. - Faecal incontinence is something I *really* do not want to deal with. Worrying about what I eat, nappy rash and smells - no thanks! - My mother died of colorectal cancer in her 40's (I think I have already outlived her and colonoscopy last year showed no trace of any problem). Anything that increases my risk of that seems like a really Bad Idea. - I don't have a great fear of surgery (sure I fear it, but it doesn't give me cold sweats). - I don't want to (can't really afford to) take weeks and weeks off work for treatment. - I want the maximum certainty and closure on this ASAP. - I want to live at least another 40 years (>=87). To me, if you take all the above, surgery seems like the best choice by a wide margin, and all I have to do is pick the right surgical team. IOW, I don't need to spin my wheels for weeks thinking about this, it's time to move forward. Does that make sense? Did I miss something? Of course, right now I am still hoping my upcoming bone scan will be clear; otherwise I believe that all bets are off? Scan on Wednesday, results on Friday. Am I right to think I have about a 99% chance of a clear scan with the above numbers, or am I too optimistic? -- Peter Headland Hi Peter, I think you are on the right track here. There is higher risk to the rectal wall with radiation that with surgery so surgery it is. Laparascopic surgery will get you back to work quicker than open surgery so go with LRP or robotic LRP. A very good surgeon can minimize your SEs so I would definitely do some shopping here. Don't accept any unnecessary SEs if you don't have to. Find a good surgeon who has good results and has done hundreds of these operations and do it. Good luck, Pete PeteBos wrote...snip... > Laparascopic surgery will get you back to work quicker than open > surgery so go with LRP or robotic LRP. Pete...I guess it depends on your priorities, getting back to work sooner or living as long as you can. LRP and RRRP may get you back to work sooner (actually if you are in good shape going in, you'll probably be out in 2 days and back to work in 2 weeks), but there is no longer term data to show that LRP or RRRP is as effective as RRP in preventing recurrence. When people say LRP and RRRP are the same as RRP, only better; it reminds me of a car I bought on that premise, but that's a long story. Even Guillonneau, the originator of LRP for PCa has recently (April, 2005) said, "Nevertheless, longer followup and more mature data are needed definitively to establish laparoscopic radical prostatectomy as an alternative to the retropubic approach." The way I read that statement, Guillonneau is saying that today, LRP has not been established as an alternative, much less a superior alternative, to RRP...Best wishes and good health, Ron You and I have very similar SE criteria, and even if I hadn't also discovered operable colon cancer in my PC-negative PC bone scan, RP was a no-brainer for me. L ap or robotic RP seems even an easier choice yet, but in every case surgeon choice is very important. I would NOT want to be part of a surgeon's learning curve. I.P. Yes, about 98 or 99% chance of a clear scan. In fact, with numbers worse that yours (T2C), Johns Hopkins did not even offer me a scan. jimhoney standard RRP age 52, cured, no significant aftereffects > A reminder of my magic numbers (hm, maybe I should play the lottery > with these) - Age 47, PSA 6.8, 4.3, 4.8 over the past 6 months (no [quoted text clipped - 53 lines] > -- > Peter Headland Hello Peter, It sounds like you are in a tail spin, and yes that happens. Correct the throttle, and and pitch. You are in a good way, and RP would be very good for all outcomes. You can have sex, and you will not pee yourself. I was dx'd @ 49 Ready to jump off any nearest bridge. I actually calmed down, read, and went to 3 Dr.s. This news group help tremendously. I decided on RP, and such.....Day the catheter came out, I did not pee myself. Maybe a small drip, but nothing that could be considered bad. It took 2 years to get full erection status back. They cut one set of nerves. Now, and with 1/4 pill of viagra, I can achieve the best. And without, I do fine. You will be ok, be-able to have sex, and not pee yourself. Best of all, you can live to that age if not farther. John Loomis >A reminder of my magic numbers (hm, maybe I should play the lottery > with these) - Age 47, PSA 6.8, 4.3, 4.8 over the past 6 months (no [quoted text clipped - 53 lines] > -- > Peter Headland "John Loomis" <jloomis@mcn.org> wrote > > RP would be very good for all outcomes. > You can have sex, and you will not pee yourself. Or you may NOT have (normal) sex AND pee yourself. There are no positive guarantees, only statistics. I.P. > "John Loomis" <jloomis@mcn.org> wrote > >> RP would be very good for all outcomes. >> You can have sex, and you will not pee yourself. > > Or you may NOT have (normal) sex AND pee yourself. There are no positive guarantees, > only statistics. Peter, I agree with John that you will be able to have sex. I agree with that because RP may cause impotence, but erections are not required for orgasms in either a man or a woman. So you will be able to have sex after RP, no matter what. But I also agree with I.P. There are no guarantees about potency or continence. RP is major surgery and a lot of stuff has to be cut to get to the prostate and pull it out. You'll be at the mercy chance and the surgeon. If he's good and you're lucky, you'll come out with everything intact. You are right to hope for the best but be prepared for the worst. I also want to caution you about how much time you'll have to take off work. I don't know what work you do, or whether you can do it at home, but I wouldn't count on going right back to work after RP. You'll probably be in the hospital a few days and be at home with a catheter and bag for two to three weeks. After that, you'll still need to be careful. If you do physical labor for a living, you'll need to be careful not to do too much and hurt yourself. There will be places deep inside you that will have been cut apart and sewn back together. If you tear one of them open, it could be very dangerous and set you back weeks more. Radiation probably loses less work than surgery. I took an hour off work each day for external beam radiation and went right to work afterwards. My HDR brachytherapy procedures were each done on a Thursday, missing work only on Thursday and Friday. I was back at work the next Monday. But I wouldn't be guided by that. If you think that RP offers a better chance for a cure (whether it does or not is a matter of great debate) you're certainly better off missing a few weeks of work now than missing years of life and work later. In any case, your positive attitude strikes me as absolutely the right one. Best of luck. Alan > It sounds like you are in a tail spin Not in the least (well only a lttle tiny bit :-) ). Like any good uro should, my doctor appears to be going to do the "are you sure, are you really sure, are you really, really sure, are you absolutely certain, there's no ruch for a decision, take your time, why not think it over a bit longer" routine for longer than I want him to. In my job (software architect), I listen to input, make as sure as I possibly can I have all the facts, and then I DECIDE and move forward. But there at the instance of decision, I always say to my team "here is my decision, here is why, but did I miss something?" So, this thread is merely me using the same approach that I use in my work life in a personal context (far from the first time, and it's worked well enough so far). My observation at work has been that people often mistake a sharp transition from asking questions to having made a decsion and wanting to move forward rapidly as something else. The most galling experiences are when someone convinces me I am wrong (I have no problem with that part), so I happily change my position in a hearbeat, but they can't believe I really mean it, so they keep banging away at me for another hour with me saying "yes, I agree with you, let's do what you suggest" at 5 minute intervals, and them saying "no, no, you don't understand, let me explain again" and carrying blithely on. And, yes, I realise this is just as much my problem as the other person's and so I have learned to look more reluctant to change my mind at first to make these situations go more smoothly for all concerned. :-) Peter, Since you work in software design you might be able to convince your boss to let you work at home for a few weeks. After a knee operation many years ago I setup a folding bed in my home office, laid down, and worked with the keyboard in my lap and monitor on a table next to the bed. Today, of course, I'd use my laptop, wireless network card, and cable router. :) I'm way ahead of you - I don't go near our office for days at a time as it is. 3Mbps DSL and a telephone covers most of what I need to do. My plan is to be working on a laptop the day after surgery. Not because I love work so dearly, just to keep from getting bored. Hm, note to self - choose facility that has fast wireless networking in patient's rooms. If I need to have a meeting with some of my team that we can't do by conference call and Placeware, I'll make 'em come up to my house (<15 minutes on the freeway from our office)! > I'm way ahead of you - I don't go near our office for days at a time as > it is. 3Mbps DSL and a telephone covers most of what I need to do. My > plan is to be working on a laptop the day after surgery. Not because I > love work so dearly, just to keep from getting bored. The day before I went in the hospital, I set up a laptop next to my recliner, a couple of stacks of books on the other side of my recliner, my attaché case against the wall and my telephone on the end table. But, mostly, I used the remote in my lap.  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 >> I'm way ahead of you - I don't go near our office for days at a time as >> it is. 3Mbps DSL and a telephone covers most of what I need to do. My >> plan is to be working on a laptop the day after surgery. Not because I >> love work so dearly, just to keep from getting bored. I had good intentions and a bag of books ready for my hospital stay. That turned out to be a joke, as narcotics (the IV drip, the pills) wipe out our minds. I FELT clear-headed and SEEMED clear-headed most of the time, but my wife told me I forgot way much of what I heard or read, and it was obvious that I flat imagined many things while I thought I was wide awake. I'd advise everyone not to analyze, make, receive, or espouse any important decisions or instructions until days after all the drugs are out of his system, including those from outpatient procedures. In particular, short-term memory is VERY unreliable; without real-time notes or a wide-awake wife in my room, the doctors' instructions each morning sounded clear but went right through my head. 'Tain't just me; doctors and anesthesiologists routinely warn us of this effect. Do NOT trust your mind after any type of anesthesia or narcotic drugs. How you FEEL and THINK you think are NOT valid indicators of normal memory function. Only drug half-lives are good indicators. I go NOWHERE without some form of non-fiction literature at hand. I read standing in lines. But on narcotics, although I FELT clear, comprehending and recalling details were just not realistic. That has not varied over many different drugs and procedures over many years. Read TV Guide, watch American Idol, but if you do any real work while under any remaining drug effects, do yourself a favor and hit DELETE before anyone sees it. I.P. Sounds like you are looking at all this very rationally, Peter. And yes, with your numbers, there is a 99% chance that you will have a clear bone scan! My PSA was higher.... and my doctor never even considered a scan! Take care! MikeH >A reminder of my magic numbers (hm, maybe I should play the lottery > with these) - Age 47, PSA 6.8, 4.3, 4.8 over the past 6 months (no [quoted text clipped - 53 lines] > -- > Peter Headland > - I don't want to (can't really afford to) take weeks and weeks off > work for treatment. I had simialr stats and age as you. I ended up having surgery (RRP) and only took 2 1/2 weeks off. Since I had it done in Mid July it was very muich in line wiht the vacations others were taking at work -:) > To me, if you take all the above, surgery seems like the best choice by > a wide margin, and all I have to do is pick the right surgical team. > IOW, I don't need to spin my wheels for weeks thinking about this, it's > time to move forward. Does that make sense? Did I miss something? Peter, If your goal is to maximize your chance of "cure", then surgery is definitely your best choice. If your goal is to minimize your chance of death from prostate cancer or ever getting distant metasteses, then you should check out: http://www.prostateweb.com/pdfs/ASCO_PCF_02_2005.pdf Ed Friedman Single trial, small cohort, no 15-year data... > Single trial, small cohort, no 15-year data... Run the student t-test vs. the study in NEJM,2002(347):781-789, and you will see that the probability that their treatment produces less prostate cancer deaths or distant metasteses than RP or WW approaches 100%. There is no 15-year data, but their range is 4-13 years. If you assume that distant metasteses precede death from prostate cancer, then it is extremely unlikely than any of the patients at the 13 year mark will die from prostate cancer in the next two years, since none have metasteses. In fact the one death reported was a actually a case of ductile adenocarcinoma being misdiagnosed as primary adenocarcinoma of the prostate by another institution, so they are actually 100% successful for treating early stage adenocarcinoma of the prostate. Also, as soon as the FDA approves an estrogen-receptor alpha blocking drug, such as methyl-piperidino-pyrazole, then their patients should see steady decreases in their PSA's until they reach their minimum, instead of the steady PSA's they observe now in their patients. For more information about the theory of all this, read: http://www.tbiomed.com/content/2/1/10 Ed Friedman > Single trial, small cohort, no 15-year data... And it contradicts TAB meta-studies. Plus, no racial separation that I saw in a quick glance. Blacks do get worse PC, and get it earlier, so there could be genetic factors, and there were a lot of blacks in this study. I.P. It's still just one study history shows us how often results like these are not independently reproducible. Here are some obvious distortions in the paper, which makes me mistrusting of the authors: "[...] no evidence exists from randomized clinical trials to support an overall survival benefit [from RP]" - true as a statement, but clearly intended to suggest that therefore RP is totally unproven and unreliable, and blatantly ignores variations within the subject population (by lumping 87 year olds in with 47 year olds). "[...] overwhelming evidence is available that any attempt at curative therapy will result in a high likelihood of long term complications [...]" - redefines "high likelihood" rather astonishingly. "[...] high probability of PSA recurrence [after RP]" - doesn't tally with the nomograms I have seen for my numbers (unless you think 8% is "high"). Yes, I know that statements like these are common amongst people wanting to get more research grants, make their papers seem more impressive, or just filled with quasi-religious fervour about their results; none of that makes me inclined to believe these people are reliable in the absence of seeing their results reproduced by others. I am perfectly willing to believe that 5 years from now these guys will have changed the face of PCa treatment. Unfortunately, I have to make my decisions in the here and now. > It's still just one study history shows us how often results like these > are not independently reproducible. Peter, I think your skepticism is justified on other grounds as well. The treatment offered by Tucker, Roundy and Leibowitz is apparently a pretty good treatment. Other doctors are doing the same thing, including Steven Strum, the author of a pretty good book on PCa. But, to my knowledge, none of the other doctors who do this treatment make these claims about success. If I understood him correctly, Strum uses this treatment for men who have already had surgery or radiation and it didn't work, not for men who have had no curative treatment. He says straight out that not everyone responds well to triple androgen blockade. Some do well for a long time, some die. IIRC, _most_ do have a rising PSA some time after treatment and require follow up ADT. Before I believed these guys I'd like to hear their explanation of why their treatment works so much better than the same treatment administered by other doctors. Finally, and this has been discussed before in this group, the side effects of hormone therapy can be very significant. If I had to choose between HT and surgery purely on the basis of side effects, I'd choose HT. But the chance of serious side effects of HT is not zero. Alan > Before I believed these guys I'd like to hear their explanation > of why their treatment works so much better than the same > treatment administered by other doctors. Alan, If you read my paper at: http://www.tbiomed.com/content/2/1/10 and understand the model presented there, then you will understand why Dr. Leibowitz and Dr. Tucker have such great success. Also, check out their latest work in locally advanced and metastatic patients at: http://www.asco.org/ac/1,1003,_12-002636-00_18-0034-00_19-0034127,00.asp Ed Friedman "Alan Meyer" <ameyer2@yahoo.com> wrote , > the side effects of hormone therapy can be very significant. > If I had to choose between HT and surgery purely on the > basis of side effects, I'd choose HT. Man, are you and I 180 degrees out of agreement on that choice, even given the same SE statistics. But the key word is "choice", and that's what makes these decisions so tough and personal and why it's so vital that we analyze our priorities so thoroughly before choosing treatment. I.P. "Ed Friedman" <ed@math.uchicago.edu> > > If your goal is to maximize your chance of "cure", then surgery is > definitely your best choice. If your goal is to minimize your chance of > death from prostate cancer or ever getting distant metasteses, then you > should check out: > > http://www.prostateweb.com/pdfs/ASCO_PCF_02_2005.pdf Uh-oh. At first brief scan, this should send me back to my drawing board. Gotta digest this one and bounce if off my docs to see whether it should change my early ADT decision. OTOH . . . I think I saw a reference to PSA recurrence in this, so maybe it doesn't change my choice. Crap; I thought I was through with THIS kind of homework for a while. Thanks, Ed. I.P. > Uh-oh. At first brief scan, this should send me back to my drawing board. > Gotta digest this one and bounce if off my docs to see whether it should [quoted text clipped - 5 lines] > > I.P. I.P., To further confuse you, let me suggest that you check out: http://www.asco.org/ac/1,1003,_12-002636-00_18-0034-00_19-0034127,00.asp to see what they are accomplishing with patients with advanced stage prostate cancer. Ed Friedman > I.P., > [quoted text clipped - 4 lines] > to see what they are accomplishing with patients with advanced stage > prostate cancer. No confusion there for me. I hope not to be in these guys' shoes for many years to come, certainly (?) not before this study is completed and offers much more data on benefits and QOL. My heart goes out to these unnamed souls with these numbers. I.P. > No confusion there for me. I hope not to be in these guys' shoes for many > years to come, certainly (?) not before this study is completed and offers > much more data on benefits and QOL. My heart goes out to these unnamed souls > with these numbers. > > I.P. OK, then just to mess with your mind, try looking at: http://www.prostateweb.com/ppt/Fullerton_March_23_2004.ppt go to slide #23. This is a failed RP patient, so the PSA really represents the amount of prostate cancer present. Notice that high testosterone(T) is the only thing keeping this patient alive (see the PSA shoot up when he goes off T for two months). Of course, T alone is not the answer, and all of these patients also receive 5AR2 inhibitors, which is essential to allow T to kill prostate cancer cells effectively. Also, I'm sure I don't have to tell you about the QOL issues when you are on high T. Ed Friedman "Ed Friedman" <ed@math.uchicago.edu> wrote > > OK, then just to mess with your mind, try looking at: > [quoted text clipped - 8 lines] > Also, I'm sure I don't have to tell you about the QOL issues when you are > on high T. I started to download it, but anything that takes several minutes on very high-speed broadband cable can't be that important, especially if anecdotal. And, no, I haven't looked into high T therapy, as it never crossed my radar screen. Have I missed anything of value? My only experiment with T modification was twofold but brief : T flare => GREAT (w/o bone mets), no T => hot flashes. I.P. > I started to download it, but anything that takes several minutes on very > high-speed broadband cable can't be that important, especially if anecdotal. [quoted text clipped - 4 lines] > > I.P. I.P., Unfortunately, you have to load the entire file (powerpoint presentation accompanying a several hour talk) to see the one anecdotal case I was referring to. If you want to get a quick download to learn more about high T therapy, then try: http://www.prostateweb.com/docs/HDTRT9.doc Ed Friedman Thanks, Ed, but that one's got three strikes: 1. "Their clinical study involved using TRT to treat patients with metastatic hormone refractory prostate cancer." That's not me . . . no mets, no hormone therapy, no refraction, normal T. 2. "Dr. Bob"? "Dr. Steve"? Gee . . . where are Paris Hilton's and Michael Moore's endorsements? At least they give their last names. 3. Does this Liebowitz guy we keep hearing about -- that this "note" from "Bob" & "Steve" (and maybe Ted and Alice) refers to -- have any credibility in the profession? I.P. > If you want to get a quick download to learn more about high T therapy, > then try: > > http://www.prostateweb.com/docs/HDTRT9.doc > Thanks, Ed, but that one's got three strikes: > 1. "Their clinical study involved using TRT to treat patients with [quoted text clipped - 7 lines] > > I.P. I.P., 1. The study you are referring to was done at Sloan Kettering. If you had read further you would have seen: "As of May 2004, Compassionate Oncology has used high-dose testosterone replacement therapy to treat more than 100, but fewer than 200 prostate cancer patients. We have used TRT on patients with all stages of CaP." 2. I have no control as to how they want to be called. Are you critical of me for preferring to be called "Ed" instead of "Dr. Friedman"? 3. By credibility, if you mean does everyone agree that they are right, then of course not. Until my paper got published (http://www.tbiomed.com/content/2/1/10), there was no theory that could explain the results that they were obtaining, so of course their results were being ignored. However, I expect this to change in the near future as a result of my paper. If it makes you feel better, my own doctor in Chicago has had extensive talks with Dr. Tucker and considers him to be a genius. He is sending all of his prostate cancer patients out to L.A. to start treatment under Dr. Tucker, then to come back to Chicago for the rest of their treatment. Dr. Tucker is on the faculty of the David Geffen School of Medicine at UCLA, Cedars-Sinai Medical Center. He is also the president of the Medical Oncology Association of Southern California. Ed Friedman "Ed Friedman" <ed@math.uchicago.edu> wrote > > I.P., > [quoted text clipped - 3 lines] > replacement therapy to treat more than 100, but fewer than 200 prostate > cancer patients. We have used TRT on patients with all stages of CaP." But the article repeatedly emphasizes its target as metastatic hormone refractory prostate cancer patients and its purpose as symptom relief. Not a word of that applies to me yet, so I quickly glaze over when reading it. If they want to appeal to the wider PC audience, they need to explain up front what they can offer the hundreds of thousands of pts like myself, with neither PSA nor symptoms after initial treatment. And should any of us jump on any bandwagon with only 100-200 riders? I have no clue what "Compassionate Oncology" is, so that meant nothing. But I've certainly filed this article and your paper for closer study as my case progresses. > 2. I have no control as to how they want to be called. Are you critical > of me for preferring to be called "Ed" instead of "Dr. Friedman"? Of course not. In fact, I respect people less who throw their titles around where they are irrelevant, such as my neighbor who signed his threats to poison my dog as, "Jere Millard, Ph.D.". But if I were writing a document trying to persuade the world's oncologists and PC pts to abandon previous protocols and try MY magical cure, I'd list ALL my credentials rather than call myself just "Dr. I.P." From this article, we haven't a clue who "Dr. Bob" and "Dr. Steve" are, whether their field is oncology or hangnails, or whether they've even been to college. By credibility, if you mean does everyone agree that they are right, > then of course not. I'm well aware that one so-called maverick often overturns the entire global medical field (e.g., ulcers, h pylori, and Drs. Warren and Marshall.) With any luck, "Drs. Bob and Steve" will be proven right or wrong before I am a "metastatic hormone refractory prostate cancer patient". > Until my paper got published (http://www.tbiomed.com/content/2/1/10), > there was no theory that could explain the results that they were > obtaining, so of course their results were being ignored. However, I > expect this to change in the near future as a result of my paper. I'll be watching with anticipation. I think support from different fields, such as your biomedical model explanation of their clinical observations, carry more weight than "yet another small clinical trial". > If it makes you feel better, my own doctor in Chicago has had extensive > talks with Dr. Tucker and considers him to be a genius. "Tucker" wasn't mentioned in the article; this is the first time I've encountered his name. Thanks for bringing this to my attention . . . Dr. Ed. I.P. |
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