Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 My website was set up as a basic guide for newly diagnosed men and their partners. If you go the YANA – You Are Not Alone Now at http://www.yananow.net and hit the ‘Don’t Panic’ Button you can go along what I felt was a simple logical path to start acquiring the information you need to make a good decision – one that suits you. If you want to give that a miss, then if you go to the page which shows all the options variable for treatment you will find the basic information for PBT (Proton Beam Therapy) listed here http://www.yananow.net/choices.htm#protonbeam – and a link to the men who have shared their experiences of this therapy (there are almost 1,000 stoires from men who have been diagnosd with prostate cancer on the site. Good luck. All the best Prostate men need enlightening, not frightening Terry Herbert - diagnosed in 1996 and still going strong Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Jan Sent: Friday, 29 October 2010 5:21 PM To: ProstateCancerSupport Subject: Proton Therapy Wondering if anyone in the group is familiar with proton therapy. My husband was just diagnosed this week. Thanks so much for any input. We don't have all the info yet. Gleason is 6 (3+3). PSA is 6. Dr is confident cancer is confined to prostate. Thanks again. Jan Sent from my iPad On Oct 26, 2010, at 10:22 PM, tcular wrote: > > > ... > > Let's consider a hypothetical case: Patient's PSA is 3.0 ng/mL. > > He starts ADT and after one year his PSA is 2.9. > > > > Hello? Hello? Is he HR (hormone refractory?) If not, W T H is > > going on? > > ... > > I think we may be talking at cross purposes Steve. > > I was assuming that the original patient we were discussing was > not hormone refractory and not on ADT treatment for recurrent > cancer. Rather he was receiving adjuvant hormone therapy for a > primary radiation treatment. The intent of the ADT was not to > suppress the cancer long term, but to weaken it in order to > maximize the effect of the radiation. The hope is that the > cancer will be completely destroyed by the radiation and further > hormone therapy would never be necessary again. > > Perhaps you were thinking that the person had already failed > primary treatment and was receiving ADT as a long term treatment. > > If my assumption was correct, the patient would definitely be > taken off ADT after some period of time. The only question was > how long should that period of time be. I've seen studies > arguing for different periods ranging from 6 months to 2 years. > > It's possible that my assumption is wrong, but if it's right, I > think the patient won't find out whether the radiation worked > until he gets off ADT and sees what happens. What happened in > this patient's case is that the PSA rose to 0.26 from its > undetectable status on ADT. 0.26 is an excellent number for > 15-18 months post radiation and does not indicate a recurrence of > the cancer. > > Alan > Steve J. and Alan M, I underwent a year of ADT prior to and 6 mos following Brachytheraphy. My PSA has remained in the 0.2 to 0.3 range for the past 5+ years and was 0.3 a mo. ago, however a CT scan last week revealed possible trouble spots in the lung area. I'm going to a Medical Oncologist tomorrow (Wed. 10-27) for his opinion because the radiologist's report indicated possible mets from the PCa, or possibly is from 50 yrs. of smoking, drinking or just NJ air. I've been away from the alt. group for a while, but still recognize that are rational conversations there. I should have saved the old computer, it worked! Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010  www.protonbob.com "Il faut d'abord durer" Hemingway Proton Therapy Wondering if anyone in the group is familiar with proton therapy. My husband was just diagnosed this week. Thanks so much for any input. We don't have all the info yet. Gleason is 6 (3+3). PSA is 6. Dr is confident cancer is confined to prostate. Thanks again. JanSent from my iPad > > > ... > > Let's consider a hypothetical case: Patient's PSA is 3.0 ng/mL. > > He starts ADT and after one year his PSA is 2.9. > > > > Hello? Hello? Is he HR (hormone refractory?) If not, W T H is > > going on? > > ... > > I think we may be talking at cross purposes Steve. > > I was assuming that the original patient we were discussing was > not hormone refractory and not on ADT treatment for recurrent > cancer. Rather he was receiving adjuvant hormone therapy for a > primary radiation treatment. The intent of the ADT was not to > suppress the cancer long term, but to weaken it in order to > maximize the effect of the radiation. The hope is that the > cancer will be completely destroyed by the radiation and further > hormone therapy would never be necessary again. > > Perhaps you were thinking that the person had already failed > primary treatment and was receiving ADT as a long term treatment. > > If my assumption was correct, the patient would definitely be > taken off ADT after some period of time. The only question was > how long should that period of time be. I've seen studies > arguing for different periods ranging from 6 months to 2 years. > > It's possible that my assumption is wrong, but if it's right, I > think the patient won't find out whether the radiation worked > until he gets off ADT and sees what happens. What happened in > this patient's case is that the PSA rose to 0.26 from its > undetectable status on ADT. 0.26 is an excellent number for > 15-18 months post radiation and does not indicate a recurrence of > the cancer. > > Alan>Steve J. and Alan M, I underwent a year of ADT prior to and 6 mos following Brachytheraphy.My PSA has remained in the 0.2 to 0.3 range for the past 5+ years and was 0.3 a mo. ago, however a CT scan last week revealed possible trouble spots in the lung area. I'm going to a Medical Oncologist tomorrow (Wed. 10-27) for his opinion because the radiologist's report indicated possible mets from the PCa, or possibly is from 50 yrs. of smoking, drinking or just NJ air. I've been away from the alt. group for a while, but still recognize that are rational conversations there. I should have saved the old computer, it worked!Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Jan, There is a Dr. Barken in San Diego and has a weekly Internet program where he discusses PCa topics and interviews various experts. Those discussions and interviews are online for replay at http://www.pcref.org/call_past.php Last May-04-2010 Dr. Barken interviewed a Dr. Fuller who is involved with some RTOG Trials and working with a form of HDR emulation using SBRT delivered with Cyberknife. During the Q & A call-in there was a pretty good discussion on various radiation treatments including Proton, IMRT, Tomo, SBRT-HDR-Cyberknife, and HDR & LDR Brachytherapy. I recommend you replay that interview/Q & A and perhaps some of the others. > > Wondering if anyone in the group is familiar with proton therapy. My husband was just diagnosed this week. Thanks so much for any input. We don't have all the info yet. Gleason is 6 (3+3). PSA is 6. Dr is confident cancer is confined to prostate. Thanks again. > Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 > Wondering if anyone in the group is familiar with proton therapy. > My husband was just diagnosed this week. Thanks so much for any > input. We don't have all the info yet. Gleason is 6 (3+3). PSA is > 6. Dr is confident cancer is confined to prostate. Welcome to the club no one wants to join. I have some suggestions that will help to make well-informed decisions. Anecdotes contributed by other patients can be interesting, but should never, ever, be relied upon as authority for one's own decisions. In other words, what helps me might harm you and vice versa. " Find people who are more interested in helping you to learn than teaching you what *they* think you need to know. " -- Young, PCa Mentor Phoenix 5 There is a lot to do. (1) If applicable, I recommend having the biopsy specimens examined by a pathology lab that specializes in prostate cancer (PCa). Everything that is done from here on depends upon the accuracy of the Gleason scoring. Here is a list of such labs: Bostwick Laboratories [800] 214-6628 Dianon Laboratories [800] 328-2666 (select 5 for client services) Jon Epstein (s Hopkins) [410] 955-5043 or [410] 955-2162 Jon Oppenheimer (Tennessee) [800] 881-0470 Lucia (303)724-3470 This is a " second opinion " and should be covered by insurance/Medicare. The cost, last I heard, was about $500. More if further tests, which might be prudent, are ordered. The chosen lab can give instructions on shipment arrangements. In civilized jurisdictions, those specimens are the property of the patient and not the medic, not the lab. Sometimes it is necessary to educate them on that point. (2) The authoritative website of the Prostate Cancer Research Institute (PCRI) at http://www.prostate-cancer.org/pcricms/ is an excellent beginning. See also http://www.prostate-cancer.org/pcricms/node/126 if newly diagnosed. Some access to medics who specialize in treatment (tx) of PCa are listed via this portal: http://www.prostate-cancer.org/pcricms/node/38 If a particular medic is not suitable due to distance (but there are men who travel thousands of miles for treatment) or otherwise, there is no harm and much possible gain in simply asking for a referral. There are also men whose primary medic is some distance away, but who receive their routine treatment (tx) near home. (3) I heartily recommend this comprehensive text on PCa: _A Primer on Prostate Cancer_ 2nd ed., subtitled " The Empowered Patient's Guide " by medical oncologist and PCa specialist B. Strum, MD and PCa warrior Donna Pogliano. It is available from the PCRI website and the like, as well as Amazon (30+ five-star reviews), & Noble, and bookstores. A lifesaver, as I very well know. (4) Personal contact with other patients can be very helpful. Local chapters of the international support group Us Too can be found via their website at http://www.ustoo.com/chapter_nearyou.asp Regards, Steve J " Empowerment: taking responsibility for and authority over one's own outcomes based on education and knowledge of the consequences and contingencies involved in one's own decisions. This focus provides the uplifting energy that can sustain in the face of crisis. " --Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled " The Empowered Patient's Guide. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Hi Jan, I had Proton therapy 3 years ago . Started with a psa of 20. Psa is now <.1. I have had no side effects. I am now age 70. If you would like additional info contract me here on this forum or send me a personal email. d. Wondering if anyone in the group is familiar with proton therapy. My husband was just diagnosed this week. Thanks so much for any input. We don't have all the info yet. Gleason is 6 (3+3). PSA is 6. Dr is confident cancer is confined to prostate. Thanks again. Jan Sent from my iPad On Oct 26, 2010, at 10:22 PM, tcular wrote: > > > ... > > Let's consider a hypothetical case: Patient's PSA is 3.0 ng/mL. > > He starts ADT and after one year his PSA is 2.9. > > > > Hello? Hello? Is he HR (hormone refractory?) If not, W T H is > > going on? > > ... > > I think we may be talking at cross purposes Steve. > > I was assuming that the original patient we were discussing was > not hormone refractory and not on ADT treatment for recurrent > cancer. Rather he was receiving adjuvant hormone therapy for a > primary radiation treatment. The intent of the ADT was not to > suppress the cancer long term, but to weaken it in order to > maximize the effect of the radiation. The hope is that the > cancer will be completely destroyed by the radiation and further > hormone therapy would never be necessary again. > > Perhaps you were thinking that the person had already failed > primary treatment and was receiving ADT as a long term treatment. > > If my assumption was correct, the patient would definitely be > taken off ADT after some period of time. The only question was > how long should that period of time be. I've seen studies > arguing for different periods ranging from 6 months to 2 years. > > It's possible that my assumption is wrong, but if it's right, I > think the patient won't find out whether the radiation worked > until he gets off ADT and sees what happens. What happened in > this patient's case is that the PSA rose to 0.26 from its > undetectable status on ADT. 0.26 is an excellent number for > 15-18 months post radiation and does not indicate a recurrence of > the cancer. > > Alan > Steve J. and Alan M, I underwent a year of ADT prior to and 6 mos following Brachytheraphy. My PSA has remained in the 0.2 to 0.3 range for the past 5+ years and was 0.3 a mo. ago, however a CT scan last week revealed possible trouble spots in the lung area. I'm going to a Medical Oncologist tomorrow (Wed. 10-27) for his opinion because the radiologist's report indicated possible mets from the PCa, or possibly is from 50 yrs. of smoking, drinking or just NJ air. I've been away from the alt. group for a while, but still recognize that are rational conversations there. I should have saved the old computer, it worked! Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 Thank you Terry. Your booklet os VERY informative. We appreciate the information veery much.JanSent from my iPad My website was set up as a basic guide for newly diagnosed men and their partners. If you go the YANA – You Are Not Alone Now at http://www.yananow.net and hit the ‘Don’t Panic’ Button you can go along what I felt was a simple logical path to start acquiring the information you need to make a good decision – one that suits you. If you want to give that a miss, then if you go to the page which shows all the options variable for treatment you will find the basic information for PBT (Proton Beam Therapy) listed here http://www.yananow.net/choices.htm#protonbeam – and a link to the men who have shared their experiences of this therapy (there are almost 1,000 stoires from men who have been diagnosd with prostate cancer on the site. Good luck. All the best Prostate men need enlightening, not frightening Terry Herbert - diagnosed in 1996 and still going strong Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Jan Sent: Friday, 29 October 2010 5:21 PM To: ProstateCancerSupport Subject: Proton Therapy Wondering if anyone in the group is familiar with proton therapy. My husband was just diagnosed this week. Thanks so much for any input. We don't have all the info yet. Gleason is 6 (3+3). PSA is 6. Dr is confident cancer is confined to prostate. Thanks again. Jan Sent from my iPad On Oct 26, 2010, at 10:22 PM, tcular wrote: > > > ... > > Let's consider a hypothetical case: Patient's PSA is 3.0 ng/mL. > > He starts ADT and after one year his PSA is 2.9. > > > > Hello? Hello? Is he HR (hormone refractory?) If not, W T H is > > going on? > > ... > > I think we may be talking at cross purposes Steve. > > I was assuming that the original patient we were discussing was > not hormone refractory and not on ADT treatment for recurrent > cancer. Rather he was receiving adjuvant hormone therapy for a > primary radiation treatment. The intent of the ADT was not to > suppress the cancer long term, but to weaken it in order to > maximize the effect of the radiation. The hope is that the > cancer will be completely destroyed by the radiation and further > hormone therapy would never be necessary again. > > Perhaps you were thinking that the person had already failed > primary treatment and was receiving ADT as a long term treatment. > > If my assumption was correct, the patient would definitely be > taken off ADT after some period of time. The only question was > how long should that period of time be. I've seen studies > arguing for different periods ranging from 6 months to 2 years. > > It's possible that my assumption is wrong, but if it's right, I > think the patient won't find out whether the radiation worked > until he gets off ADT and sees what happens. What happened in > this patient's case is that the PSA rose to 0.26 from its > undetectable status on ADT. 0.26 is an excellent number for > 15-18 months post radiation and does not indicate a recurrence of > the cancer. > > Alan > Steve J. and Alan M, I underwent a year of ADT prior to and 6 mos following Brachytheraphy. My PSA has remained in the 0.2 to 0.3 range for the past 5+ years and was 0.3 a mo. ago, however a CT scan last week revealed possible trouble spots in the lung area. I'm going to a Medical Oncologist tomorrow (Wed. 10-27) for his opinion because the radiologist's report indicated possible mets from the PCa, or possibly is from 50 yrs. of smoking, drinking or just NJ air. I've been away from the alt. group for a while, but still recognize that are rational conversations there. I should have saved the old computer, it worked! Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 Thank you. This is great info!Sent from my iPad > Wondering if anyone in the group is familiar with proton therapy. > My husband was just diagnosed this week. Thanks so much for any > input. We don't have all the info yet. Gleason is 6 (3+3). PSA is > 6. Dr is confident cancer is confined to prostate. Welcome to the club no one wants to join. I have some suggestions that will help to make well-informed decisions. Anecdotes contributed by other patients can be interesting, but should never, ever, be relied upon as authority for one's own decisions. In other words, what helps me might harm you and vice versa. "Find people who are more interested in helping you to learn than teaching you what *they* think you need to know." -- Young, PCa Mentor Phoenix 5 There is a lot to do. (1) If applicable, I recommend having the biopsy specimens examined by a pathology lab that specializes in prostate cancer (PCa). Everything that is done from here on depends upon the accuracy of the Gleason scoring. Here is a list of such labs: Bostwick Laboratories [800] 214-6628 Dianon Laboratories [800] 328-2666 (select 5 for client services) Jon Epstein (s Hopkins) [410] 955-5043 or [410] 955-2162 Jon Oppenheimer (Tennessee) [800] 881-0470 Lucia (303)724-3470 This is a "second opinion" and should be covered by insurance/Medicare. The cost, last I heard, was about $500. More if further tests, which might be prudent, are ordered. The chosen lab can give instructions on shipment arrangements. In civilized jurisdictions, those specimens are the property of the patient and not the medic, not the lab. Sometimes it is necessary to educate them on that point. (2) The authoritative website of the Prostate Cancer Research Institute (PCRI) at http://www.prostate-cancer.org/pcricms/ is an excellent beginning. See also http://www.prostate-cancer.org/pcricms/node/126 if newly diagnosed. Some access to medics who specialize in treatment (tx) of PCa are listed via this portal: http://www.prostate-cancer.org/pcricms/node/38 If a particular medic is not suitable due to distance (but there are men who travel thousands of miles for treatment) or otherwise, there is no harm and much possible gain in simply asking for a referral. There are also men whose primary medic is some distance away, but who receive their routine treatment (tx) near home. (3) I heartily recommend this comprehensive text on PCa: _A Primer on Prostate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" by medical oncologist and PCa specialist B. Strum, MD and PCa warrior Donna Pogliano. It is available from the PCRI website and the like, as well as Amazon (30+ five-star reviews), & Noble, and bookstores. A lifesaver, as I very well know. (4) Personal contact with other patients can be very helpful. Local chapters of the international support group Us Too can be found via their website at http://www.ustoo.com/chapter_nearyou.asp Regards, Steve J "Empowerment: taking responsibility for and authority over one's own outcomes based on education and knowledge of the consequences and contingencies involved in one's own decisions. This focus provides the uplifting energy that can sustain in the face of crisis." --Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled "The Empowered Patient's Guide." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 Awesome. Thank you. I will listen.JanSent from my iPad Jan, There is a Dr. Barken in San Diego and has a weekly Internet program where he discusses PCa topics and interviews various experts. Those discussions and interviews are online for replay at http://www.pcref.org/call_past.php Last May-04-2010 Dr. Barken interviewed a Dr. Fuller who is involved with some RTOG Trials and working with a form of HDR emulation using SBRT delivered with Cyberknife. During the Q & A call-in there was a pretty good discussion on various radiation treatments including Proton, IMRT, Tomo, SBRT-HDR-Cyberknife, and HDR & LDR Brachytherapy. I recommend you replay that interview/Q & A and perhaps some of the others. > > Wondering if anyone in the group is familiar with proton therapy. My husband was just diagnosed this week. Thanks so much for any input. We don't have all the info yet. Gleason is 6 (3+3). PSA is 6. Dr is confident cancer is confined to prostate. Thanks again. > Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 You are very inspirational. What treatment did you choose? I know that it is very individualized to each person and their circumstance. Thanks again for what you do.JanSent from my iPad My website was set up as a basic guide for newly diagnosed men and their partners. If you go the YANA – You Are Not Alone Now at http://www.yananow.net and hit the ‘Don’t Panic’ Button you can go along what I felt was a simple logical path to start acquiring the information you need to make a good decision – one that suits you. If you want to give that a miss, then if you go to the page which shows all the options variable for treatment you will find the basic information for PBT (Proton Beam Therapy) listed here http://www.yananow.net/choices.htm#protonbeam – and a link to the men who have shared their experiences of this therapy (there are almost 1,000 stoires from men who have been diagnosd with prostate cancer on the site. Good luck. All the best Prostate men need enlightening, not frightening Terry Herbert - diagnosed in 1996 and still going strong Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Jan Sent: Friday, 29 October 2010 5:21 PM To: ProstateCancerSupport Subject: Proton Therapy Wondering if anyone in the group is familiar with proton therapy. My husband was just diagnosed this week. Thanks so much for any input. We don't have all the info yet. Gleason is 6 (3+3). PSA is 6. Dr is confident cancer is confined to prostate. Thanks again. Jan Sent from my iPad On Oct 26, 2010, at 10:22 PM, tcular wrote: > > > ... > > Let's consider a hypothetical case: Patient's PSA is 3.0 ng/mL. > > He starts ADT and after one year his PSA is 2.9. > > > > Hello? Hello? Is he HR (hormone refractory?) If not, W T H is > > going on? > > ... > > I think we may be talking at cross purposes Steve. > > I was assuming that the original patient we were discussing was > not hormone refractory and not on ADT treatment for recurrent > cancer. Rather he was receiving adjuvant hormone therapy for a > primary radiation treatment. The intent of the ADT was not to > suppress the cancer long term, but to weaken it in order to > maximize the effect of the radiation. The hope is that the > cancer will be completely destroyed by the radiation and further > hormone therapy would never be necessary again. > > Perhaps you were thinking that the person had already failed > primary treatment and was receiving ADT as a long term treatment. > > If my assumption was correct, the patient would definitely be > taken off ADT after some period of time. The only question was > how long should that period of time be. I've seen studies > arguing for different periods ranging from 6 months to 2 years. > > It's possible that my assumption is wrong, but if it's right, I > think the patient won't find out whether the radiation worked > until he gets off ADT and sees what happens. What happened in > this patient's case is that the PSA rose to 0.26 from its > undetectable status on ADT. 0.26 is an excellent number for > 15-18 months post radiation and does not indicate a recurrence of > the cancer. > > Alan > Steve J. and Alan M, I underwent a year of ADT prior to and 6 mos following Brachytheraphy. My PSA has remained in the 0.2 to 0.3 range for the past 5+ years and was 0.3 a mo. ago, however a CT scan last week revealed possible trouble spots in the lung area. I'm going to a Medical Oncologist tomorrow (Wed. 10-27) for his opinion because the radiologist's report indicated possible mets from the PCa, or possibly is from 50 yrs. of smoking, drinking or just NJ air. I've been away from the alt. group for a while, but still recognize that are rational conversations there. I should have saved the old computer, it worked! Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 ville Fl. Hi ! Thank you for the info. Where did you have the proton therapy done? The psa numbers are great. Jan Sent from my iPad On Oct 29, 2010, at 8:45 PM, Drexler wrote: Hi Jan, I had Proton therapy 3 years ago . Started with a psa of 20. Psa is now <.1. I have had no side effects. I am now age 70. If you would like additional info contract me here on this forum or send me a personal email. d. Quote Link to comment Share on other sites More sharing options...
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