Guest guest Posted October 2, 2006 Report Posted October 2, 2006 , You might find it useful to visit YANA - You Are Not Alone Now www.yananow.net a site set up for newly diagnosed people which gives some basic information in plain language with links to more complex sites. The second section of the site is where we invite men to tell their stories and how they arrived at their decisions regarding treatment – there are over 200 hundred stories now, some of them going back ten years or more, although most are newer than that. I try to keep them current by asking the men to update their position each year. Many people have mailed me to say how useful they have found this, especially because most of the men are happy to respond to specific questions. The section of the site can be found by clicking the link on the site labelled Experiences or going to http://www.yananow.net/Experiences.html All the best, Terry Herbert in Melbourne, Australia Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. August '06 PSA 27.4 My site is at www.yananow.net As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data: Dr “Snuffy” Myers. From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Sent: 03 October 2006 09:16 AM To: ProstateCancerSupport Subject: Re: Post-Op Update > > > > Greetings all, > > A few weeks ago I announced my plans to undergo robotic RP for my > PCa. > > (Stage T1c, Gleason 7, PSA 9.75). I'm happy to report things went > very > > well. I was discharged from the hospital yesterday afternoon 24 > hrs > > after surgery. -now dealing with a bloated and sore belly. I have > > some Vicatin for pain but so far, I'm just taking Tylenol. I'm > back to > > a regular diet and walking feels good. If this is as bad as it > gets, I > > will feel truly lucky. I'm cautiously optimistic for a full > recovery > > but withholding judgment until my follow up visit next week to have > the > > catheter removed and see the pathology report. > > > > I had my surgery at Rochester (NY) General Hospital by Dr. > Valvo. > > His team and the hospital staff (and my wonderful wife, of course!) > are > > first rate!! I will report later findings. > > Best regards, > > -Tony Higgins > > > Quote
Guest guest Posted October 3, 2006 Report Posted October 3, 2006 Hi there, Nobody minds your ‘ramblings’ I’m sure, but it is difficult to know how we can help you if you don’t focus us a bit more on what you want. Is it information about robotic surgery and how people have dealt with the procedure and the side effects? If so, go along to http://www.yananow.net/Experiences.html#lrrp and read the experiences of the men who have been there, done that – there are about 50 stories there and you can mail them individually if you want more information. You say <snip> …..I wish sometimes I could find information where someone doesn't hold back any punches. I mean, if the cancers returns, we need to have the information and options out there. <snip> I can give you information without holding back punches, but what information do you want? If you’re looking for certainty, there is none, not in this life, not in this disease. But I can tell you that the disease can be very dangerous, that it can kill men, that in some versions (and there are many) it is not possible to effect a cure. That’s pulling no punches, but it may also be unnecessarily frightening because although it can be a dangerous disease it is often an indolent disease; although it can and does kill men, the majority of men diagnosed with prostate cancer survive for many years. It seems to me that part of your problem is that you haven’t got a firm grip on the aspects of your diagnosis that are important, that you haven’t followed the advice of Dr Strum who says that the three most important aspects in the successful treatment of prostate cancer: Selection of a treatment that is most appropriate for you Your preparation for the intended treatment Your choice of the doctor or team most qualified to treat you throughout the course of the illness To help you focus on these issues you might like to look at and print off the list of questions to ask doctors here http://www.yananow.net/questions.htm It may also be useful to check out Dr Strum’s views on a Strategy for Success at http://prostate-cancer.org/education/riskases/Strum_StrategyOfSuccess1.html You might also like to read Dr Myers’ views on the successful management of prostate cancer at http://www.yananow.net/MyersManagement.htm If you do all these things I believe that you will have a more realistic and holistic view of how to optimize your chances of survival with minimal damage – and you may be in a better position to ask this List more specific questions, remembering that there is not such thing as a dumb question. All of us had to start with PCa 101 when we were diagnosed because many (perhaps most) of us didn’t even know we had a prostate <grin> All the best Terry Herbert in Melbourne Australia Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. June '04: TURP. Aug '06 PSA 27.4 My site is at www.prostatecancerwatchfulwaiting.co.za It is a tragedy of the world that no one knows what he doesn’t know, and the less a man knows, the more sure he is that he knows everything. Joyce Carey From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Bludove_3 Sent: 04 October 2006 03:26 AM To: ProstateCancerSupport Subject: Re: Post-Op Update Thanks for the update on your robotic surgery. I have been looking at every option other than having surgery. I even considered joining the clinical trials for HIFU. I meet with the doctor Oct 10th about HIFU. I am a 54 -year old African-American male with a Tb2 score and my last PSA went down to 3.4. last week. I have met with several doctors to get their opinions. Now I am leaning away from the HIFU because of the recurrence factor. I think I need to keep my options open for robotic surgery. I have 3 small kids (11-7) and I want to be around for them. I am now scheduled for robotic surgery the week of November 14th and I am a little nervous. I realize we're suppose to be positive but I wish sometimes I could find information where someone doesn't hold back any punches. I mean, if the cancers returns, we need to have the information and options out there. I think too many articles try and keep the negative side of this disease low-key. I was diagnosed in June'06 and because prostate cancer is so common, I didn't really consider this disease too serious. And probably because of my denial until I started getting probed in my butt at MD. Cancer Institute 2 weeks ago. I still haven't told my co-workers, other than my boss. Sorry for the rambling guys! Get your email and more, right on the new Yahoo.com Quote
Guest guest Posted October 3, 2006 Report Posted October 3, 2006 What are your concerns about HIFU? I meet with one Dr at Duke University and have another apointment this Fri. So far it looks like the best. Have you visited the websites I was given? http://www.edap-hifu.com/eng/physicians/hifu/index.htm http://www.clinicaltrials.gov/ct/show/NCT00295802?order=1 My only reservation was the small number of patients treated so far at Duke (only 6, its a clinical trial). Nearly 10000 patients have been treated in Europe most in the past 5 years. Has anyone else investigated this treatment? My choice before HIFU was seed implants. I have met with 2 urologists and both have told me whatever my choce of treatment it would probably be successful because of the early stage. PSA 5.2, Gleason 3+3, Biopsy 1 positive out of 12. I'm 57 years old in good health. I know there are no guarantees but whatever teatment you choose you want it to be successful to avoid salvage treatment later. As I understand HIFU it can be used as a retreatment if required I don't think any of the others can. Does anyone else know if this is true? I haven't decided what path to take yet. I' trying to keep an open mind to all psooibilities and any experience anyone has to offer is certainly welcome. Steve Re: Post-Op Update Thanks for the update on your robotic surgery. I have been looking at every option other than having surgery. I even considered joining the clinical trials for HIFU. I meet with the doctor Oct 10th about HIFU. I am a 54 -year old African-American male with a Tb2 score and my last PSA went down to 3.4. last week. I have met with several doctors to get their opinions. Now I am leaning away from the HIFU because of the recurrence factor. I think I need to keep my options open for robotic surgery. I have 3 small kids (11-7) and I want to be around for them. I am now scheduled for robotic surgery the week of November 14th and I am a little nervous. I realize we're suppose to be positive but I wish sometimes I could find information where someone doesn't hold back any punches. I mean, if the cancers returns, we need to have the information and options out there. I think too many articles try and keep the negative side of this disease low-key. I was diagnosed in June'06 and because prostate cancer is so common, I didn't really consider this disease too serious. And probably because of my denial until I started getting probed in my butt at MD. Cancer Institute 2 weeks ago. I still haven't told my co-workers, other than my boss. Sorry for the rambling guys! Get your email and more, right on the new Yahoo.com Quote
Guest guest Posted October 3, 2006 Report Posted October 3, 2006 Hi Steve, You ask <snip> As I understand HIFU it can be used as a retreatment if required I don't think any of the others can. Does anyone else know if this is true? <snip> To the best of my knowledge HIFU and Cryotherapy are the only two current procedures that can be repeated in the event of initial procedure failure. All the best Terry Herbert in Melbourne Australia Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. June '04: TURP. Aug '06 PSA 27.4 My site is at www.prostatecancerwatchfulwaiting.co.za It is a tragedy of the world that no one knows what he doesn’t know, and the less a man knows, the more sure he is that he knows everything. Joyce Carey From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Steve Hymel Sent: 04 October 2006 11:35 AM To: ProstateCancerSupport Subject: RE: Re: Post-Op Update What are your concerns about HIFU? I meet with one Dr at Duke University and have another apointment this Fri. So far it looks like the best. Have you visited the websites I was given? http://www.edap-hifu.com/eng/physicians/hifu/index.htm http://www.clinicaltrials.gov/ct/show/NCT00295802?order=1 My only reservation was the small number of patients treated so far at Duke (only 6, its a clinical trial). Nearly 10000 patients have been treated in Europe most in the past 5 years. Has anyone else investigated this treatment? My choice before HIFU was seed implants. I have met with 2 urologists and both have told me whatever my choce of treatment it would probably be successful because of the early stage. PSA 5.2, Gleason 3+3, Biopsy 1 positive out of 12. I'm 57 years old in good health. I know there are no guarantees but whatever teatment you choose you want it to be successful to avoid salvage treatment later. As I understand HIFU it can be used as a retreatment if required I don't think any of the others can. Does anyone else know if this is true? I haven't decided what path to take yet. I' trying to keep an open mind to all psooibilities and any experience anyone has to offer is certainly welcome. Steve Re: Post-Op Update Thanks for the update on your robotic surgery. I have been looking at every option other than having surgery. I even considered joining the clinical trials for HIFU. I meet with the doctor Oct 10th about HIFU. I am a 54 -year old African-American male with a Tb2 score and my last PSA went down to 3.4. last week. I have met with several doctors to get their opinions. Now I am leaning away from the HIFU because of the recurrence factor. I think I need to keep my options open for robotic surgery. I have 3 small kids (11-7) and I want to be around for them. I am now scheduled for robotic surgery the week of November 14th and I am a little nervous. I realize we're suppose to be positive but I wish sometimes I could find information where someone doesn't hold back any punches. I mean, if the cancers returns, we need to have the information and options out there. I think too many articles try and keep the negative side of this disease low-key. I was diagnosed in June'06 and because prostate cancer is so common, I didn't really consider this disease too serious. And probably because of my denial until I started getting probed in my butt at MD. Cancer Institute 2 weeks ago. I still haven't told my co-workers, other than my boss. Sorry for the rambling guys! Get your email and more, right on the new Yahoo.com Quote
Guest guest Posted October 3, 2006 Report Posted October 3, 2006 I am 57 with a Gleason of 3=3=6 and a PSA of 5.4. I too have been researching HIFU and have spoken with a urologest here in Southern California. The uro. has done many HIFU treatments in Canada and Mexico and is a leading expert in the field. What he told me is in order to be eligible for the study the cancer must be confined to one quadrant. That in itself eliminates many men. He said you must remember that this phase III study must prove to the FDA that the treatment is at least as good as Cryosurgery. Because of the comparison the doctors will tend to overtreat the prostate increasing the probability of nerve damage. That leaves going to Canada or Mexico as an option and ,of course the insurance will not cover treatment out of country which means you have a $25,000 to $28,000 bill plus air fare and hotel stay. Payable, of course in advance. The doctor has also recommended that I get an endorectal spectral MRI since my cancer is not a defined tumor. The wonderful Ca. Blue Cross will not pay for this test and the radiologist also needs payment in advance so it is back to anothe urologist to see what else they can do to see if the cancer is close to the edges of the prostate. It is frustrating enough to have to deal with the cancer, I would have never thought the insurance companies and doctors would add to the frustration. It appears from my vantage that the insurance company is going to decide the tests and treatment available to me. I am not a medical professional but just thought I would share my current frustration. Pennstgary [ProstateCancerSupp ort] Re: Post-Op Update Thanks for the update on your robotic surgery. I have been looking at every option other than having surgery. I even considered joining the clinical trials for HIFU. I meet with the doctor Oct 10th about HIFU. I am a 54 -year old African-American male with a Tb2 score and my last PSA went down to 3.4. last week. I have met with several doctors to get their opinions. Now I am leaning away from the HIFU because of the recurrence factor. I think I need to keep my options open for robotic surgery. I have 3 small kids (11-7) and I want to be around for them. I am now scheduled for robotic surgery the week of November 14th and I am a little nervous. I realize we're suppose to be positive but I wish sometimes I could find information where someone doesn't hold back any punches. I mean, if the cancers returns, we need to have the information and options out there. I think too many articles try and keep the negative side of this disease low-key. I was diagnosed in June'06 and because prostate cancer is so common, I didn't really consider this disease too serious. And probably because of my denial until I started getting probed in my butt at MD. Cancer Institute 2 weeks ago. I still haven't told my co-workers, other than my boss. Sorry for the rambling guys! Get your email and more, right on the new Yahoo.com Quote
Guest guest Posted October 3, 2006 Report Posted October 3, 2006 , I reckon there are very few of us who weren’t angry at the way we were treated after diagnosis – it goes with the territory. All I can say is that for most of us, it gets a whole lot better as time goes by. I don’t know if you are seriously considering spending your own hard earned cash on HIFU in Mexico or Canada, but if you are thinking along those lines, you may find it a better buy to have it done in Europe. One of the men on my website (who lives in UK) did that three years ago and you can read his story here http://www.yananow.net/Mentors/DennisM.htm His wife, who posts the updates for him tells me that she has had a number of enquiries over the years from men in the US and has helped them with arrangements. From what you have said of your diagnosis you can really afford to choose any of the treatments available – or even possibly not have immediate treatment – because studies show that the outcome will be very similar. I am NOT suggesting that you do nothing of course, but I am suggesting that you analyse your options very carefully and that you do not rush into treatment that you may come to regret. Dr Strum has some suggestions as to what the approach should be of a man who wants to establish clearly as much detail about his disease as possible. You can download his views here http://prostate-cancer.org/education/riskases/Strum_StrategyOfSuccess1.html All the best Terry Herbert in Melbourne Australia Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. June '04: TURP. Aug '06 PSA 27.4 My site is at www.prostatecancerwatchfulwaiting.co.za It is a tragedy of the world that no one knows what he doesn’t know, and the less a man knows, the more sure he is that he knows everything. Joyce Carey From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of GARY Hails Sent: 04 October 2006 12:30 PM To: ProstateCancerSupport Subject: Re: Re: Post-Op Update I am 57 with a Gleason of 3=3=6 and a PSA of 5.4. I too have been researching HIFU and have spoken with a urologest here in Southern California. The uro. has done many HIFU treatments in Canada and Mexico and is a leading expert in the field. What he told me is in order to be eligible for the study the cancer must be confined to one quadrant. That in itself eliminates many men. He said you must remember that this phase III study must prove to the FDA that the treatment is at least as good as Cryosurgery. Because of the comparison the doctors will tend to overtreat the prostate increasing the probability of nerve damage. That leaves going to Canada or Mexico as an option and ,of course the insurance will not cover treatment out of country which means you have a $25,000 to $28,000 bill plus air fare and hotel stay. Payable, of course in advance. The doctor has also recommended that I get an endorectal spectral MRI since my cancer is not a defined tumor. The wonderful Ca. Blue Cross will not pay for this test and the radiologist also needs payment in advance so it is back to anothe urologist to see what else they can do to see if the cancer is close to the edges of the prostate. It is frustrating enough to have to deal with the cancer, I would have never thought the insurance companies and doctors would add to the frustration. It appears from my vantage that the insurance company is going to decide the tests and treatment available to me. I am not a medical professional but just thought I would share my current frustration. Pennstgary [ProstateCancerSupp ort] Re: Post-Op Update Thanks for the update on your robotic surgery. I have been looking at every option other than having surgery. I even considered joining the clinical trials for HIFU. I meet with the doctor Oct 10th about HIFU. I am a 54 -year old African-American male with a Tb2 score and my last PSA went down to 3.4. last week. I have met with several doctors to get their opinions. Now I am leaning away from the HIFU because of the recurrence factor. I think I need to keep my options open for robotic surgery. I have 3 small kids (11-7) and I want to be around for them. I am now scheduled for robotic surgery the week of November 14th and I am a little nervous. I realize we're suppose to be positive but I wish sometimes I could find information where someone doesn't hold back any punches. I mean, if the cancers returns, we need to have the information and options out there. I think too many articles try and keep the negative side of this disease low-key. I was diagnosed in June'06 and because prostate cancer is so common, I didn't really consider this disease too serious. And probably because of my denial until I started getting probed in my butt at MD. Cancer Institute 2 weeks ago. I still haven't told my co-workers, other than my boss. Sorry for the rambling guys! Get your email and more, right on the new Yahoo.com Quote
Guest guest Posted October 4, 2006 Report Posted October 4, 2006 Terry They are hoping that the trial of PhotoDynamicTherapy will be repeatable. This is the put the light source in, inout the drug and switch on the light treatment. Best wishes PS Finished up in Accident and Emergency on Friday with intense headache, feeling sick, slurred speech and unsteady on my feet. Seems to be a combination of virus, migraine and high blood pressure. Had had a 24 hour tape last week for my BP and the doc says I need tretament - but putting this past my urologist it seems my right ureter has narrowed and the hydronephrosis is such that for the time being that my right kidney is almost non effective. Having to slow down for a week or two. Re: Post-Op Update Thanks for the update on your robotic surgery. I have been looking at every option other than having surgery. I even considered joining the clinical trials for HIFU. I meet with the doctor Oct 10th about HIFU. I am a 54 -year old African-American male with a Tb2 score and my last PSA went down to 3.4. last week. I have met with several doctors to get their opinions. Now I am leaning away from the HIFU because of the recurrence factor. I think I need to keep my options open for robotic surgery. I have 3 small kids (11-7) and I want to be around for them. I am now scheduled for robotic surgery the week of November 14th and I am a little nervous. I realize we're suppose to be positive but I wish sometimes I could find information where someone doesn't hold back any punches. I mean, if the cancers returns, we need to have the information and options out there. I think too many articles try and keep the negative side of this disease low-key. I was diagnosed in June'06 and because prostate cancer is so common, I didn't really consider this disease too serious. And probably because of my denial until I started getting probed in my butt at MD. Cancer Institute 2 weeks ago. I still haven't told my co-workers, other than my boss. Sorry for the rambling guys! Get your email and more, right on the new Yahoo.com Quote
Guest guest Posted October 4, 2006 Report Posted October 4, 2006 I was not aware of the requirement that the cancer had to be confined to one quadrate. Mine is and maybe that’s why I wasn’t told. I do have prostrate stones and may be excluded because of that. If depends on how large the shadow produced by an ultrasound is. A large shadow will prevent the HIFU energy to not treat tissue behind the stone. Duke University School of Med. is where the clinical trials are. They are trying to schedule an ultrasound and other tests for next week. All this is at no cost to me or my insurance it’s screening for eligibility in the trial. More information is not bad. One of my main concerns is if I need re-treatment and the procedure is not approved by FDA what are my options? This is one of questions I have asked the trial coordinator. I also want to speak to someone who has completed the procedure. This equipment being used is manufactured in France and it is supposed to be the best of the three companies manufacturing this type of equipment. Their website http://www.edap-hifu.com/eng/physicians/hifu/index.htm indicated that there was a great improvement from the first 2000 version of software in version 2002. I also asked Duke what version they are now using. Hopefully its 2004 or 2005. Even though the cancer is confined to a small portion of the prostrate the entire gland will be treated with the goal of turning it into scar tissue. This new version of software is supposed to minimize nerve damage. On a lighter note I had lunch at a Chinese restaurant yesterday and my fortune cookie said “Begin…the rest is easy”. As everyone has noted in previous posts the most difficult decision is what treatment to choose. Steve Re: Re: Post-Op Update I am 57 with a Gleason of 3=3=6 and a PSA of 5.4. I too have been researching HIFU and have spoken with a urologest here in Southern California. The uro. has done many HIFU treatments in Canada and Mexico and is a leading expert in the field. What he told me is in order to be eligible for the study the cancer must be confined to one quadrant. That in itself eliminates many men. He said you must remember that this phase III study must prove to the FDA that the treatment is at least as good as Cryosurgery. Because of the comparison the doctors will tend to overtreat the prostate increasing the probability of nerve damage. That leaves going to Canada or Mexico as an option and ,of course the insurance will not cover treatment out of country which means you have a $25,000 to $28,000 bill plus air fare and hotel stay. Payable, of course in advance. The doctor has also recommended that I get an endorectal spectral MRI since my cancer is not a defined tumor. The wonderful Ca. Blue Cross will not pay for this test and the radiologist also needs payment in advance so it is back to anothe urologist to see what else they can do to see if the cancer is close to the edges of the prostate. It is frustrating enough to have to deal with the cancer, I would have never thought the insurance companies and doctors would add to the frustration. It appears from my vantage that the insurance company is going to decide the tests and treatment available to me. I am not a medical professional but just thought I would share my current frustration. Pennstgary [ProstateCancerSupp ort] Re: Post-Op Update Thanks for the update on your robotic surgery. I have been looking at every option other than having surgery. I even considered joining the clinical trials for HIFU. I meet with the doctor Oct 10th about HIFU. I am a 54 -year old African-American male with a Tb2 score and my last PSA went down to 3.4. last week. I have met with several doctors to get their opinions. Now I am leaning away from the HIFU because of the recurrence factor. I think I need to keep my options open for robotic surgery. I have 3 small kids (11-7) and I want to be around for them. I am now scheduled for robotic surgery the week of November 14th and I am a little nervous. I realize we're suppose to be positive but I wish sometimes I could find information where someone doesn't hold back any punches. I mean, if the cancers returns, we need to have the information and options out there. I think too many articles try and keep the negative side of this disease low-key. I was diagnosed in June'06 and because prostate cancer is so common, I didn't really consider this disease too serious. And probably because of my denial until I started getting probed in my butt at MD. Cancer Institute 2 weeks ago. I still haven't told my co-workers, other than my boss. Sorry for the rambling guys! Get your email and more, right on the new Yahoo.com Quote
Guest guest Posted October 4, 2006 Report Posted October 4, 2006 I know of people who have had radiotherapy in the prostate bed after surgery. We all know of people who have external beam radiation of the bed after surgery. Once the prostate is removed you do not to retreat the prostate because the prostate is removed. I guess I am curious. Why is the ability to do the procedure again necessarily better? The re-treatment means that it did not work the first time. If the PCa has escaped the prostate and is systemic then any local treatment will fail including possibly re-treatment. What are people looking for? The perfect treatment? From observing over the years it seems to me more important than the treatment is the skill of the doctor doing the treatment. There is no perfect treatment that works 100% of the time. That said I have a great deal of respect for men who participate in clinical trials. There will be unknowns just because it is a clinical trial but I do know men who have had wonderful success's with clinical trials and others who have failed. I have friends who swear they are still alive because of clinical trials. Fact is that I know men with the standard treatments who are in the same situation. There are unknowns with them also. If you participate in a clinical trial then you may be helping yourself and you are definitely helping men down the line. Whatever treatment you chose you must be comfortable with it and if it doesn't work you need to move forward rather than looking back. Kathy > --- Re: Post-Op Update > > > Thanks for the update on your robotic surgery. I have been looking at every option other than having surgery. I even considered joining the clinical trials for HIFU. I meet with the doctor Oct 10th about HIFU. I am a 54 -year old African-American male with a Tb2 score and my last PSA went down to 3.4. last week. I have met with several doctors to get their opinions. Now I am leaning away from the HIFU because of the recurrence factor. I think I need to keep my options open for robotic surgery. I have 3 small kids (11-7) and I want to be around for them. I am now scheduled for robotic surgery the week of November 14th and I am a little nervous. > > I realize we're suppose to be positive but I wish sometimes I could find information where someone doesn't hold back any punches. I mean, if the cancers returns, we need to have the information and options out there. I think too many articles try and keep the negative side of this disease low-key. I was diagnosed in June'06 and because prostate cancer is so common, I didn't really consider this disease too serious. And probably because of my denial until I started getting probed in my butt at MD. Cancer Institute 2 weeks ago. I still haven't told my co-workers, other than my boss. Sorry for the rambling guys! > Get your email and more, right on the new Yahoo.com Quote
Guest guest Posted October 4, 2006 Report Posted October 4, 2006 Locations for HIFU clinical trials in the US. Please refer to this study by ClinicalTrials.gov identifier NCT00295802 Devonne Pavlak Devonne.Pavlak@... Jagruti Vyas Ext. 263 jagruti.vyas@... California Chinn & Chinn Urology Associates, Arcadia, California, 91006, United States; Recruiting Eva Chinn dchinn3@... Chinn, MD, Principal Investigator District of Columbia town Medical Center, Washington, District of Columbia, 20007, United States; Recruiting Main Office Line RXAU@... Lynch, MD, Principal Investigator Regan, MD, Sub-Investigator Georgia Urology Associates, P.C., Marietta, Georgia, 30060, United States; Recruiting Lyons research_chapter3@... Nikolas Symbas, MD, Principal Investigator Roper, MD, Sub-Investigator Urology Specialists of Coastal Georgia, Savannah, Georgia, 31405, United States; Recruiting Swindell jswindell@... Shook, MD, Principal Investigator New York New York Prostate Institute, Oceanside, New York, 11572, United States; Not yet recruiting Syed Abbas sabbas@... Louis Potters, MD, Principal Investigator North Carolina Duke University Medical Center, Durham, North Carolina, 27710, United States; Recruiting Jill smith248@... Cary on, MD, Principal Investigator Tennessee University of Tennessee, Memphis, Tennessee, 38120, United States; Not yet recruiting Cyndi Herrington, RN cherrington@... Wake, MD, Principal Investigator Vanderbilt University Medical Center, Nashville, Tennessee, 37232-2765, United States; Not yet recruiting , RN brenda.hughes@... Sam Chang, MD, Principal Investigator Cookson, MD, Sub-Investigator Texas Baylor College of Medicine, Houston, Texas, 77030, United States; Recruiting Vivian MacDonnell macdonne@... Miles, MD, Principal Investigator Dov Kadmon, MD, Sub-Investigator Virginia Virginia Urology Center, Richmond, Virginia, 23235, United States; Recruiting Janet Sorah Ext. 7801 jsorah@... Sam Graham, MD, Principal Investigator Sliwinski, MD, Sub-Investigator Study chairs or principal investigators Lynch, MD, Principal Investigator, town Medical Center More Information Publications Thuroff S, Chaussy C, Vallancien G, Wieland W, Kiel HJ, Le Duc A, Desgrandchamps F, De La Rosette JJ, Gelet A. High-intensity focused ultrasound and localized prostate cancer: efficacy results from the European multicentric study. J Endourol. 2003 Oct;17(8):673-7. Study ID Numbers: G050103 Last Updated: September 27, 2006 Record first received: February 22, 2006 ClinicalTrials.gov Identifier: NCT00295802 Health Authority: United States: Food and Drug Administration ClinicalTrials.gov processed this record on 2006-10-03 > --- [ProstateCancerSupp ort] Re: Post-Op Update > > > > > > Thanks for the update on your robotic surgery. I have been looking at > every option other than having surgery. I even considered joining the > clinical trials for HIFU. I meet with the doctor Oct 10th about HIFU. I > am a 54 -year old African-American male with a Tb2 score and my last PSA > went down to 3.4. last week. I have met with several doctors to get their > opinions. Now I am leaning away from the HIFU because of the recurrence > factor. I think I need to keep my options open for robotic surgery. I > have 3 small kids (11-7) and I want to be around for them. I am now > scheduled for robotic surgery the week of November 14th and I am a little > nervous. > > I realize we're suppose to be positive but I wish sometimes I could find > information where someone doesn't hold back any punches. I mean, if the > cancers returns, we need to have the information and options out there. I > think too many articles try and keep the negative side of this disease > low-key. I was diagnosed in June'06 and because prostate cancer is so > common, I didn't really consider this disease too serious. And probably > because of my denial until I started getting probed in my butt at MD. > Cancer Institute 2 weeks ago. I still haven't told my > co-workers, other than my boss. Sorry for the rambling guys! > > Get your email and more, right on the new Yahoo.com > > > > > > Quote
Guest guest Posted October 4, 2006 Report Posted October 4, 2006 As I understand it if the gland is removed and the cancer is localized in the gland there would be no recurrence. This is verified by pathology on the removed tissue. PSA rise after surgery indicates that the cancer was not localized and it is growing in other tissue. Radiation/Chemotherpy is the only option in this event The only way to effect a cure is to completly remove or destroy the cancer. Removing the gland, if localized is the most effective . If Radiation/HIFU/Cryotherapy is the treatment choice the goal is to destroy the gland and it becomes scar tissue. There is no way to determine if the entire gland was destroyed and in the event that it wasn't the cancer could return. If radiation was the choice it is not repeated then the only choice would be chemo. If HIFU or Cryotherapy was chosen it could be repeated if the cancer is in remaining prostate tissue. How is this determined, if af all possible is unknown to me. If I'm off track here would someone enlighten meSteve RE: Re: Post-Op Update I know of people who have had radiotherapy in the prostate bed aftersurgery. We all know of people who have external beam radiation of thebed after surgery. Once the prostate is removed you do not to retreatthe prostate because the prostate is removed. I guess I am curious. Whyis the ability to do the procedure again necessarily better? There-treatment means that it did not work the first time. If the PCa hasescaped the prostate and is systemic then any local treatment will failincluding possibly re-treatment.What are people looking for? The perfect treatment? From observing overthe years it seems to me more important than the treatment is the skillof the doctor doing the treatment. There is no perfect treatment thatworks 100% of the time.That said I have a great deal of respect for men who participate inclinical trials. There will be unknowns just because it is a clinicaltrial but I do know men who have had wonderful success's with clinicaltrials and others who have failed. I have friends who swear they arestill alive because of clinical trials. Fact is that I know men withthe standard treatments who are in the same situation. There areunknowns with them also. If you participate in a clinical trial thenyou may be helping yourself and you are definitely helping men down theline.Whatever treatment you chose you must be comfortable with it and if itdoesn't work you need to move forward rather than looking back.Kathy> --- Re: Post-Op Update>>> Thanks for the update on your robotic surgery. I have been looking at every option other than having surgery. I even considered joining the clinical trials for HIFU. I meet with the doctor Oct 10th about HIFU. I am a 54 -year old African-American male with a Tb2 score and my last PSA went down to 3.4. last week. I have met with several doctors to get their opinions. Now I am leaning away from the HIFU because of the recurrence factor. I think I need to keep my options open for robotic surgery. I have 3 small kids (11-7) and I want to be around for them. I am now scheduled for robotic surgery the week of November 14th and I am a little nervous.>> I realize we're suppose to be positive but I wish sometimes I could find information where someone doesn't hold back any punches. I mean, if the cancers returns, we need to have the information and options out there. I think too many articles try and keep the negative side of this disease low-key. I was diagnosed in June'06 and because prostate cancer is so common, I didn't really consider this disease too serious. And probably because of my denial until I started getting probed in my butt at MD. Cancer Institute 2 weeks ago. I still haven't told my co-workers, other than my boss. Sorry for the rambling guys!> Get your email and more, right on the new Yahoo.com Quote
Guest guest Posted October 4, 2006 Report Posted October 4, 2006 Hi Steve, It appears that you are biased toward surgery. I had surgery and I am biased against it. I believe that there are several better options. Any treatment will have some side effects, but I believe that some of those other than surgery have fewer unpleasant side effects. The pathologist may look at a removed gland, but there is no way that he or she can say that all of the cancer was removed. If just one cell has escaped, it could possibly form a new colony somewhere else in the body. You said, " PSA rise after surgery indicates that the cancer was not localized and it is growing in other tissue. Radiation/Chemotherpy is the only option in this event" There are options other than Radiation/Chemotherapy. Perhaps you consider Androgen Deprivation Therapy as Chemotherapy, but most doctors do not. It is usually the first line of therapy if the cancer seems to be systemic. Brachytherapy has been around for about 15 years now. We have very good records which show that it is equivalent to surgery and has fewer side effects. There may be recurrences in any treatment. Surgery may have recurrences of 20% or more. Every man should do a lot of research before making a decision that he will have to live with the rest of his life. It is his body and his responsibility to make the decision. Above all, he should not panic and make a hasty decision. I wish you all the bestAubrey Pilgrim, DC (Ret.) Author ofA Revolutionary Approach to Prostate Cancer-Read the original book for FREE at: http://www.prostatepointers.org/prostate/lay/apilgrim/Read new edition for FREE at http://www.cancer.prostate-help.org/capilgr.htmDr. E. Crawford is co-author of the revision As I understand it if the gland is removed and the cancer is localized in the gland there would be no recurrence. This is verified by pathology on the removed tissue. PSA rise after surgery indicates that the cancer was not localized and it is growing in other tissue. Radiation/Chemotherpy is the only option in this event The only way to effect a cure is to completly remove or destroy the cancer. Removing the gland, if localized is the most effective . If Radiation/HIFU/Cryotherapy is the treatment choice the goal is to destroy the gland and it becomes scar tissue. There is no way to determine if the entire gland was destroyed and in the event that it wasn't the cancer could return. If radiation was the choice it is not repeated then the only choice would be chemo. If HIFU or Cryotherapy was chosen it could be repeated if the cancer is in remaining prostate tissue. How is this determined, if af all possible is unknown to me. If I'm off track here would someone enlighten meSteve Quote
Guest guest Posted October 4, 2006 Report Posted October 4, 2006 Steve, Broadly speaking you have it right in your post. There are a couple of points I’d make to clarify: You say that the pathology will verify whether the cancer was localized in the gland and that if this is the case there will be no recurrence. That is not strictly speaking correct because cases can exhibit treatment failure where there are what are known as negative margins in the removed gland, which is to say there is no pathological evidence of spread beyond the area that has been removed. I don’t know if you are familiar with the Partin Tables (at http://urology.jhu.edu/prostate/partintables.php - ) But if you page down to look at the charts, you will see that even very low grade tumours, with a Gleason Score as low as 2 may have some extra-prostatic extension, while the higher grades may demonstrate spread to the lymph nodes and seminal vesicles at fairly low PSA levels. If there is evidence that surgical failure, as evidenced by a rising PSA, is from cells in the prostate bed (biopsy is sometimes used to examine this possibility) then radiation or cryotherapy (and I thyink HIFU) may be used as salvage treatments. Failure of these treatments or evidence that the disease has spread beyond the prostate bed is usually treated with ADT (Androgen Deprivation Therapy) initially and although this treatment cannot be considered as curative, the disease can be managed for many years in some cases. Chemotherapy is usually only used if ADT fails because the disease has become androgen independent. You say <snip> The only way to effect a cure is to completely remove or destroy the cancer. <snip> That as a basic statement is unarguable. The problem is how to establish where the cancer is to attack it. There is a view that by the time a tumor is large enough to be clinically diagnosed, the disease is systemic, that is to say that there are cancer cells throughout the body. There is a difference between a metastasized disease and a systemic disease, the former being a later stage of development where the cells in the system have taken root so to speak and are growing in distant locations. For this reason, some practitioners suggest that dealing only with the gland is not the most effective way to go and that it is equally important to find a way of mopping up the cells within the system. In early stage disease, this may possibly be done by the immune system, especially if the man improves his overall health. In this theory, the main tumour is dealt with by conventional means – any of the acceptable treatments – and the man then changes diet, exercises, etc to get more healthy. <snip> Removing the gland, if localized is the most effective . <snip> This again is an arguable point. Dr Folkman has done a good deal of work in this field and basically, the theory that he has worked on and is still pursuing is that the man tumour may prevent metastasic disease developing. Remove the tumour and you remove that control allowing in some, but not all cases, the growth of distant tumours. Radiating the gland (or, presumably, treating it with HIFU/Cryotherapy) does not seem to have this same effect. I don’t mean to add to any confusion, but as Aubrey Pilgrim is wont to say “The only Rule of Prostate Cancer is that there are no Rules.” All the best Terry Herbert in Melbourne Australia Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. June '04: TURP. Aug '06 PSA 27.4 My site is at www.prostatecancerwatchfulwaiting.co.za It is a tragedy of the world that no one knows what he doesn’t know, and the less a man knows, the more sure he is that he knows everything. Joyce Carey From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of nccajun@... Sent: 05 October 2006 01:19 AM To: ProstateCancerSupport Subject: RE: Re: Post-Op Update As I understand it if the gland is removed and the cancer is localized in the gland there would be no recurrence. This is verified by pathology on the removed tissue. PSA rise after surgery indicates that the cancer was not localized and it is growing in other tissue. Radiation/Chemotherpy is the only option in this event The only way to effect a cure is to completly remove or destroy the cancer. Removing the gland, if localized is the most effective . If Radiation/HIFU/Cryotherapy is the treatment choice the goal is to destroy the gland and it becomes scar tissue. There is no way to determine if the entire gland was destroyed and in the event that it wasn't the cancer could return. If radiation was the choice it is not repeated then the only choice would be chemo. If HIFU or Cryotherapy was chosen it could be repeated if the cancer is in remaining prostate tissue. How is this determined, if af all possible is unknown to me. If I'm off track here would someone enlighten me Steve RE: Re: Post-Op Update I know of people who have had radiotherapy in the prostate bed after surgery. We all know of people who have external beam radiation of the bed after surgery. Once the prostate is removed you do not to retreat the prostate because the prostate is removed. I guess I am curious. Why is the ability to do the procedure again necessarily better? The re-treatment means that it did not work the first time. If the PCa has escaped the prostate and is systemic then any local treatment will fail including possibly re-treatment. What are people looking for? The perfect treatment? From observing over the years it seems to me more important than the treatment is the skill of the doctor doing the treatment. There is no perfect treatment that works 100% of the time. That said I have a great deal of respect for men who participate in clinical trials. There will be unknowns just because it is a clinical trial but I do know men who have had wonderful success's with clinical trials and others who have failed. I have friends who swear they are still alive because of clinical trials. Fact is that I know men with the standard treatments who are in the same situation. There are unknowns with them also. If you participate in a clinical trial then you may be helping yourself and you are definitely helping men down the line. Whatever treatment you chose you must be comfortable with it and if it doesn't work you need to move forward rather than looking back. Kathy > --- Re: Post-Op Update > > > Thanks for the update on your robotic surgery. I have been looking at every option other than having surgery. I even considered joining the clinical trials for HIFU. I meet with the doctor Oct 10th about HIFU. I am a 54 -year old African-American male with a Tb2 score and my last PSA went down to 3.4. last week. I have met with several doctors to get their opinions. Now I am leaning away from the HIFU because of the recurrence factor. I think I need to keep my options open for robotic surgery. I have 3 small kids (11-7) and I want to be around for them. I am now scheduled for robotic surgery the week of November 14th and I am a little nervous. > > I realize we're suppose to be positive but I wish sometimes I could find information where someone doesn't hold back any punches. I mean, if the cancers returns, we need to have the information and options out there. I think too many articles try and keep the negative side of this disease low-key. I was diagnosed in June'06 and because prostate cancer is so common, I did n't really consider this disease too serious. And probably because of my denial until I started getting probed in my butt at MD. Cancer Institute 2 weeks ago. I still haven't told my co-workers, other than my boss. Sorry for the rambling guys! > Get your email and more, right on the new Yahoo.com Quote
Guest guest Posted October 5, 2006 Report Posted October 5, 2006 I clicked on the Partin table link you refer to in your post. Each catagory has something like the following: organ confined 95(89-99)Am I correct in assuming these are percentages with those in parentises being the upper and lower ranges or margin of error.Terry Herbert wrote: Steve, Broadly speaking you have it right in your post. There are a couple of points I’d make to clarify: You say that the pathology will verify whether the cancer was localized in the gland and that if this is the case there will be no recurrence. That is not strictly speaking correct because cases can exhibit treatment failure where there are what are known as negative margins in the removed gland, which is to say there is no pathological evidence of spread beyond the area that has been removed. I don’t know if you are familiar with the Partin Tables (at http://urology.jhu.edu/prostate/partintables.php - ) But if you page down to look at the charts, you will see that even very low grade tumours, with a Gleason Score as low as 2 may have some extra-prostatic extension, while the higher grades may demonstrate spread to the lymph nodes and seminal vesicles at fairly low PSA levels. If there is evidence that surgical failure, as evidenced by a rising PSA, is from cells in the prostate bed (biopsy is sometimes used to examine this possibility) then radiation or cryotherapy (and I thyink HIFU) may be used as salvage treatments. Failure of these treatments or evidence that the disease has spread beyond the prostate bed is usually treated with ADT (Androgen Deprivation Therapy) initially and although this treatment cannot be considered as curative, the disease can be managed for many years in some cases. Chemotherapy is usually only used if ADT fails because the disease has become androgen independent. You say <snip> The only way to effect a cure is to completely remove or destroy the cancer. <snip> That as a basic statement is unarguable. The problem is how to establish where the cancer is to attack it. There is a view that by the time a tumor is large enough to be clinically diagnosed, the disease is systemic, that is to say that there are cancer cells throughout the body. There is a difference between a metastasized disease and a systemic disease, the former being a later stage of development where the cells in the system have taken root so to speak and are growing in distant locations. For this reason, some practitioners suggest that dealing only with the gland is not the most effective way to go and that it is equally important to find a way of mopping up the cells within the system. In early stage disease, this may possibly be done by the immune system, especially if the man improves his overall health. In this theory, the main tumour is dealt with by conventional means – any of the acceptable treatments – and the man then changes diet, exercises, etc to get more healthy. <snip> Removing the gland, if localized is the most effective . <snip> This again is an arguable point. Dr Folkman has done a good deal of work in this field and basically, the theory that he has worked on and is still pursuing is that the man tumour may prevent metastasic disease developing. Remove the tumour and you remove that control allowing in some, but not all cases, the growth of distant tumours. Radiating the gland (or, presumably, treating it with HIFU/Cryotherapy) does not seem to have this same effect. I don’t mean to add to any confusion, but as Aubrey Pilgrim is wont to say “The only Rule of Prostate Cancer is that there are no Rules.” All the best Terry Herbert in Melbourne Australia Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. June '04: TURP. Aug '06 PSA 27.4 My site is at www.prostatecancerwatchfulwaiting.co.za It is a tragedy of the world that no one knows what he doesn’t know, and the less a man knows, the more sure he is that he knows everything. Joyce Carey From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of nccajunsprintmailSent: 05 October 2006 01:19 AMTo: ProstateCancerSupport Subject: RE: Re: Post-Op Update As I understand it if the gland is removed and the cancer is localized in the gland there would be no recurrence. This is verified by pathology on the removed tissue. PSA rise after surgery indicates that the cancer was not localized and it is growing in other tissue. Radiation/Chemotherpy is the only option in this event The only way to effect a cure is to completly remove or destroy the cancer. Removing the gland, if localized is the most effective . If Radiation/HIFU/Cryotherapy is the treatment choice the goal is to destroy the gland and it becomes scar tissue. There is no way to determine if the entire gland was destroyed and in the event that it wasn't the cancer could return. If radiation was the choice it is not repeated then the only choice would be chemo. If HIFU or Cryotherapy was chosen it could be repeated if the cancer is in remaining prostate tissue. How is this determined, if af all possible is unknown to me. If I'm off track here would someone enlighten meSteve RE: Re: Post-Op Update>>>>> What are your concerns about HIFU? I meet with one Dr at Duke University and have another apointment this Fri. So far it looks like the best. Have you visited the websites I was given?>> http://www.edap-hifu.com/eng/physicians/hifu/index.htm>> http://www.clinicaltrials.gov/ct/show/NCT00295802?order=1>> My only reservation was the small number of patients treated so far at Duke (only 6, its a clinical trial). Nearly 10000 patients have been treated in Europe most in the past 5 years. Has anyone else investigated this treatment? My choice before HIFU was seed implants. I have met wit h 2 urologists and both have told me whatever my choce of treatment it would probably be successful because of the early stage. PSA 5.2, Gleason 3+3, Biopsy 1 positive out of 12. I'm 57 years old in good health. I know there are no guarantees but whatever teatment you choose you want it to be successful to avoid salvage treatment later. As I understand HIFU it can be used as a retreatment if required I don't think any of the others can. Does anyone else know if this is true?>> I haven't decided what path to take yet. I' trying to keep an open mind to all psooibilities and any experience anyone has to offer is certainly welcome.>> Steve>>>> Re: Post-Op Update>>> Thanks for the update on your robotic surgery. I have been looking at every option other than having surgery. I even considered joining the clinical trials for HIFU. I meet with the doctor Oct 10th about HIFU. I am a 54 -year old African-American male with a Tb2 score and my last PSA went down to 3.4. last week. I have met with several doctors to get their opinions. Now I am leaning away from the HIFU because of the recurrence factor. I think I need to keep my options open for robotic surgery. I have 3 small kids (11-7) and I want to be around for them. I am now scheduled for robotic surgery the week of November 14th and I am a little nervous.>> I realize we're suppose to be positive but I wish sometimes I could find information where someone doesn't hold back any punches. I mean, if the cancers returns, we need to have the information and options out there. I think too many articles try and keep the negative side of this disease low-key. I was diagnosed in June'06 and because prostate cancer is so common, I did n't really consider this disease too serious. And probably because of my denial until I started getting probed in my butt at MD. Cancer Institute 2 weeks ago. I still haven't told my co-workers, other than my boss. Sorry for the rambling guys!> Get your email and more, right on the new Yahoo.com All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business. Quote
Guest guest Posted October 5, 2006 Report Posted October 5, 2006 Yes, those are the ranges with the main figure being the median., as I understand it. All the best, Terry Herbert in Melbourne, Australia Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. August '06 PSA 27.4 My site is at www.yananow.net As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data: Dr “Snuffy” Myers. From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Obermeier Sent: 05 October 2006 08:14 PM To: ProstateCancerSupport Subject: RE: Re: Post-Op Update I clicked on the Partin table link you refer to in your post. Each catagory has something like the following: organ confined 95(89-99) Am I correct in assuming these are percentages with those in parentises being the upper and lower ranges or margin of error. Terry Herbert <ghenesh_49optusnet.au> wrote: Steve, Broadly speaking you have it right in your post. There are a couple of points I’d make to clarify: You say that the pathology will verify whether the cancer was localized in the gland and that if this is the case there will be no recurrence. That is not strictly speaking correct because cases can exhibit treatment failure where there are what are known as negative margins in the removed gland, which is to say there is no pathological evidence of spread beyond the area that has been removed. I don’t know if you are familiar with the Partin Tables (at http://urology.jhu.edu/prostate/partintables.php - ) But if you page down to look at the charts, you will see that even very low grade tumours, with a Gleason Score as low as 2 may have some extra-prostatic extension, while the higher grades may demonstrate spread to the lymph nodes and seminal vesicles at fairly low PSA levels. If there is evidence that surgical failure, as evidenced by a rising PSA, is from cells in the prostate bed (biopsy is sometimes used to examine this possibility) then radiation or cryotherapy (and I thyink HIFU) may be used as salvage treatments. Failure of these treatments or evidence that the disease has spread beyond the prostate bed is usually treated with ADT (Androgen Deprivation Therapy) initially and although this treatment cannot be considered as curative, the disease can be managed for many years in some cases. Chemotherapy is usually only used if ADT fails because the disease has become androgen independent. You say <snip> The only way to effect a cure is to completely remove or destroy the cancer. <snip> That as a basic statement is unarguable. The problem is how to establish where the cancer is to attack it. There is a view that by the time a tumor is large enough to be clinically diagnosed, the disease is systemic, that is to say that there are cancer cells throughout the body. There is a difference between a metastasized disease and a systemic disease, the former being a later stage of development where the cells in the system have taken root so to speak and are growing in distant locations. For this reason, some practitioners suggest that dealing only with the gland is not the most effective way to go and that it is equally important to find a way of mopping up the cells within the system. In early stage disease, this may possibly be done by the immune system, especially if the man improves his overall health. In this theory, the main tumour is dealt with by conventional means – any of the acceptable treatments – and the man then changes diet, exercises, etc to get more healthy. <snip> Removing the gland, if localized is the most effective . <snip> This again is an arguable point. Dr Folkman has done a good deal of work in this field and basically, the theory that he has worked on and is still pursuing is that the man tumour may prevent metastasic disease developing. Remove the tumour and you remove that control allowing in some, but not all cases, the growth of distant tumours. Radiating the gland (or, presumably, treating it with HIFU/Cryotherapy) does not seem to have this same effect. I don’t mean to add to any confusion, but as Aubrey Pilgrim is wont to say “The only Rule of Prostate Cancer is that there are no Rules.” All the best Terry Herbert in Melbourne Australia Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. June '04: TURP. Aug '06 PSA 27.4 My site is at www.prostatecancerwatchfulwaiting.co.za It is a tragedy of the world that no one knows what he doesn’t know, and the less a man knows, the more sure he is that he knows everything. Joyce Carey From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of nccajunsprintmail Sent: 05 October 2006 01:19 AM To: ProstateCancerSupport Subject: RE: Re: Post-Op Update As I understand it if the gland is removed and the cancer is localized in the gland there would be no recurrence. This is verified by pathology on the removed tissue. PSA rise after surgery indicates that the cancer was not localized and it is growing in other tissue. Radiation/Chemotherpy is the only option in this event The only way to effect a cure is to completly remove or destroy the cancer. Removing the gland, if localized is the most effective . If Radiation/HIFU/Cryotherapy is the treatment choice the goal is to destroy the gland and it becomes scar tissue. There is no way to determine if the entire gland was destroyed and in the event that it wasn't the cancer could return. If radiation was the choice it is not repeated then the only choice would be chemo. If HIFU or Cryotherapy was chosen it could be repeated if the cancer is in remaining prostate tissue. How is this determined, if af all possible is unknown to me. If I'm off track here would someone enlighten me Steve RE: Re: Post-Op Update I know of people who have had radiotherapy in the prostate bed after surgery. We all know of people who have external beam radiation of the bed after surgery. Once the prostate is removed you do not to retreat the prostate because the prostate is removed. I guess I am curious. Why is the ability to do the procedure again necessarily better? The re-treatment means that it did not work the first time. If the PCa has escaped the prostate and is systemic then any local treatment will fail including possibly re-treatment. What are people looking for? The perfect treatment? From observing over the years it seems to me more important than the treatment is the skill of the doctor doing the treatment. There is no perfect treatment that works 100% of the time. That said I have a great deal of respect for men who participate in clinical trials. There will be unknowns just because it is a clinical trial but I do know men who have had wonderful success's with clinical trials and others who have failed. I have friends who swear they are still alive because of clinical trials. Fact is that I know men with the standard treatments who are in the same situation. There are unknowns with them also. If you participate in a clinical trial then you may be helping yourself and you are definitely helping men down the line. Whatever treatment you chose you must be comfortable with it and if it doesn't work you need to move forward rather than looking back. Kathy > --- Re: Post-Op Update > > > Thanks for the update on your robotic surgery. I have been looking at every option other than having surgery. I even considered joining the clinical trials for HIFU. I meet with the doctor Oct 10th about HIFU. I am a 54 -year old African-American male with a Tb2 score and my last PSA went down to 3.4. last week. I have met with several doctors to get their opinions. Now I am leaning away from the HIFU because of the recurrence factor. I think I need to keep my options open for robotic surgery. I have 3 small kids (11-7) and I want to be around for them. I am now scheduled for robotic surgery the week of November 14th and I am a little nervous. > > I realize we're suppose to be positive but I wish sometimes I could find information where someone doesn't hold back any punches. I mean, if the cancers returns, we need to have the information and options out there. I think too many articles try and keep the negative side of this disease low-key. I was diagnosed in June'06 and because prostate cancer is so common, I did n't really consider this disease too serious. And probably because of my denial until I started getting probed in my butt at MD. Cancer Institute 2 weeks ago. I still haven't told my co-workers, other than my boss. Sorry for the rambling guys! > Get your email and more, right on the new Yahoo.com All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business. Quote
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