Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Laurel, Do you think that we can ever use the phrase "gone for good" with this monster? I know that I(and countless others) would like to think and say that but no matter how hard I tried to get my uros(all three including the one that did my RP) to use the word CURE they will not not go near it. Even though my post op pathology Gleason went down from 6(3+3) to 5(2+3)and it said things like "all negative margins" and "confined to the left apex" and my surgeon said it did not leave the capsule they still won't use that word. Having "IT" physically removed from my body was why I choose RP(and maybe why is leaning that way). Its kind of depressing to think that I(and many others) made such a HUGE sacrifice and we still can't be sure its "gone for good". Regards, Rick 60/40 towards surgery , it seems that you are doing the kind of research every man (and his partner) should do after a prostate cancer diagnosis. I am wondering what it is that has you more or less convinced that surgery offers the best long term "cure" rate? One of the first books I read is one by Dr. Bradley Hennenfent. Never can remember the exact title but something along the lines of "Surviving Prostate Cancer Without Surgery". It is pretty radical, but I found it illuminating. My husband began his proton treatment a year ago Tuesday. It is still early days for us as far as knowing if his cancer is gone for good. I will tell you, sorry if this offends anyone, that we had a pretty great sexual experience last night, Happy Birthday to Me, without the need for pills, pumps, injections and the like. So far, so good in that arena. If you have not read Bob Marckini's book you might want to.Laurel> > >> > > Hello All,> > > > > > I was diagnosed with PCa in December and am leaning toward Robotic> > Surgery with a very > > > experienced surgeon. I'm 46 years old, PSA 5.8, Gleason 6 and in> > pretty good shape. I have a > > > question about incontinence during the recover period.... > > > > > > What is the impact on everyday activities of having to wear pads? I> > hear people say they need > > > to wear 1, 2 or 3 pads but I don't have a good understanding of what> > means. Do you ever > > > have leaks? Is the odor detectable? What are long car rides like?> > Can you get back to > > > strenuous physical activity?> > > > > > My job requires a lot of driving around New England and I'm trying> > to understand the > > > medium term impact (assuming I'm not one of the fortunate ones who> > regains full > > > continence almost immediately) .> > > > > > Thanks in Advance,> > > > > > > > >> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _____________ __> Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 (snip) > Its kind of depressing to think that I(and many others) made such > a HUGE sacrifice and we still can't be sure its " gone for good " . The uros were right. There is simply no way to be sure that PCa cells have escaped, even with " negative margins. " I shudder whenever I see a brother report that his uro grinned and claimed, " we got it all! " The figures for biochemical failure post-RP are not pretty; something on the order of 30%. No matter what treatment (tx) is selected, we must be vigilant for the rest of our lives, watching for " recurrence. " And there is a bit of disagreement over whether " recurrence " is the correct term. Some say that the PCa was never gone, it's just manifested itself after a delay. I don't know; maybe it's a distinction without a difference..... Point is, it's never over until something else pushes us off our perch. Not to say that we are doomed to a miserable existence. We aren't, given a reasonably early diagnosis (dx). Regards, Steve J " Never -- never -- never give up! Never go gently. There will be plenty of gentle after we die, so until then, fight! Control the rhythms and tempo of the dance, even when you have to let the PCa dancing bear lead for awhile -- even when you have to wear the lead suit as you dance -- never let the bear set the rhythm and tempo of your dance with life -- when the bear finally takes control, it will be a very hollow feeling for him, because I will be gone -- dancing in a better place. " --E. B. (Burns) Mixon, PCa survivor, June 14, 2005 Thank you, Burns. Live long and prosper. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Hello Laurel,I have read Bob's book and am scheduled for a consultation at Loma . I also have a friend from Graduate School who was involved in launching protons at LL and Mass General and I've talked to him quite a bit. As I said in my email I'm leaning 60/40 toward surgery but haven't made a final decision.Best Wishes, 60/40 towards surgery , it seems that you are doing the kind of research every man (and his partner) should do after a prostate cancer diagnosis. I am wondering what it is that has you more or less convinced that surgery offers the best long term "cure" rate? One of the first books I read is one by Dr. Bradley Hennenfent. Never can remember the exact title but something along the lines of "Surviving Prostate Cancer Without Surgery". It is pretty radical, but I found it illuminating. My husband began his proton treatment a year ago Tuesday. It is still early days for us as far as knowing if his cancer is gone for good. I will tell you, sorry if this offends anyone, that we had a pretty great sexual experience last night, Happy Birthday to Me, without the need for pills, pumps, injections and the like. So far, so good in that arena. If you have not read Bob Marckini's book you might want to. Laurel > > > > > > Hello All, > > > > > > I was diagnosed with PCa in December and am leaning toward Robotic > > Surgery with a very > > > experienced surgeon. I'm 46 years old, PSA 5.8, Gleason 6 and in > > pretty good shape. I have a > > > question about incontinence during the recover period.... > > > > > > What is the impact on everyday activities of having to wear pads? I > > hear people say they need > > > to wear 1, 2 or 3 pads but I don't have a good understanding of what > > means. Do you ever > > > have leaks? Is the odor detectable? What are long car rides like? > > Can you get back to > > > strenuous physical activity? > > > > > > My job requires a lot of driving around New England and I'm trying > > to understand the > > > medium term impact (assuming I'm not one of the fortunate ones who > > regains full > > > continence almost immediately) . > > > > > > Thanks in Advance, > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _ ____________ __ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ > Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Steve You are right - but I do know men who have had surgery and brachytherapy a long time ago who have had no signs of recurrence and who now have been told by the consultant to just have a 2 yearly PSA test. Hence they are pretty relaxed about this. We tend not to hear from many of these people on the groups as they have no need of support. Re: 60/40 towards surgery (snip)> Its kind of depressing to think that I(and many others) made such > a HUGE sacrifice and we still can't be sure its "gone for good".The uros were right. There is simply no way to be sure that PCa cells have escaped, even with "negative margins." I shudder whenever I see a brother report that his uro grinned and claimed, "we got it all!"The figures for biochemical failure post-RP are not pretty; something on the order of 30%.No matter what treatment (tx) is selected, we must be vigilant for the rest of our lives, watching for "recurrence." And there is a bit of disagreement over whether "recurrence" is the correct term. Some say that the PCa was never gone, it's just manifested itself after a delay. I don't know; maybe it's a distinction without a difference.....Point is, it's never over until something else pushes us off our perch. Not to say that we are doomed to a miserable existence. We aren't, given a reasonably early diagnosis (dx).Regards,Steve J"Never -- never -- never give up! Never go gently. There will be plenty ofgentle after we die, so until then, fight! Control the rhythms and tempoof the dance, even when you have to let the PCa dancing bear lead for awhile-- even when you have to wear the lead suit as you dance -- never let thebear set the rhythm and tempo of your dance with life -- when the bearfinally takes control, it will be a very hollow feeling for him, because Iwill be gone -- dancing in a better place."--E. B. (Burns) Mixon, PCa survivor, June 14, 2005Thank you, Burns. Live long and prosper. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Maybe the operative word is inactive or something similar. If someone wants to think they are cured, maybe there is a psychological benefit to that as long as they do not stop monitoring potential progression. The fact is that there can be progression even after 20 to 25 years after any treatment, like with other cancers. The advantage with PCa is that we have a marker, PSA that means that we do not have to wait for symptoms to take action. My friends with other cancer would be very happy if they had something like PSA. Guess maybe we should also be concerned about QOL. Learn everything that you can, stay current on the literature but don’t spoil the joy you can have by worrying about something that nobody can control before it becomes a reality. Kathy From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of White Sent: Sunday, January 06, 2008 2:43 PM To: ProstateCancerSupport Subject: Re: 60/40 towards surgery Laurel, Do you think that we can ever use the phrase " gone for good " with this monster? I know that I(and countless others) would like to think and say that but no matter how hard I tried to get my uros(all three including the one that did my RP) to use the word CURE they will not not go near it. Even though my post op pathology Gleason went down from 6(3+3) to 5(2+3)and it said things like " all negative margins " and " confined to the left apex " and my surgeon said it did not leave the capsule they still won't use that word. Having " IT " physically removed from my body was why I choose RP(and maybe why is leaning that way). Its kind of depressing to think that I(and many others) made such a HUGE sacrifice and we still can't be sure its " gone for good " . Regards, Rick 60/40 towards surgery , it seems that you are doing the kind of research every man (and his partner) should do after a prostate cancer diagnosis. I am wondering what it is that has you more or less convinced that surgery offers the best long term " cure " rate? One of the first books I read is one by Dr. Bradley Hennenfent. Never can remember the exact title but something along the lines of " Surviving Prostate Cancer Without Surgery " . It is pretty radical, but I found it illuminating. My husband began his proton treatment a year ago Tuesday. It is still early days for us as far as knowing if his cancer is gone for good. I will tell you, sorry if this offends anyone, that we had a pretty great sexual experience last night, Happy Birthday to Me, without the need for pills, pumps, injections and the like. So far, so good in that arena. If you have not read Bob Marckini's book you might want to. Laurel > > > > > > Hello All, > > > > > > I was diagnosed with PCa in December and am leaning toward Robotic > > Surgery with a very > > > experienced surgeon. I'm 46 years old, PSA 5.8, Gleason 6 and in > > pretty good shape. I have a > > > question about incontinence during the recover period.... > > > > > > What is the impact on everyday activities of having to wear pads? I > > hear people say they need > > > to wear 1, 2 or 3 pads but I don't have a good understanding of what > > means. Do you ever > > > have leaks? Is the odor detectable? What are long car rides like? > > Can you get back to > > > strenuous physical activity? > > > > > > My job requires a lot of driving around New England and I'm trying > > to understand the > > > medium term impact (assuming I'm not one of the fortunate ones who > > regains full > > > continence almost immediately) . > > > > > > Thanks in Advance, > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _ ____________ __ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 To any with prostate cancer: Unfortunately, with the present state of the " art " we have no such happy happenstance as a " Guaranteed Cure. " This should be obvious in our searches for a treatment, when almost any proposed method of treatment may be prescribed, depending on who and where we solicit an opinion for our treatment. It is my opinion after a lot of study (mainly concentrated in the three of four months after my diagnosis - but continued since then) that whatever treatment we choose other than AS (no treatment) the basic results in terms of freedom from reocurrence are approximately the same. As a 74 year old active guy, I made my proton decision based on the " Quality of Life " that I wished to insure following treatment. To me this was a primary factor; for others with different circumstances different factors may drive a different decision. I do have an opinion that surgery, either regular RP or robotic, subjects the body to a great deal of trauma, and also that there are certainly more risks associated with it than say, brachytherapy, IMRT, or proton beam treatment. With comparable results. My rationale went something like: Well, if I am " free from recurrence " (note that I did not say " cured " ) for even five years, I will be almost 80, and by that time who knows what new developments may have arrived. (Note also that this applies to ANY decision.) Plus there is always the option for starting another full or intermittant ADT protocol. I will count myself extremely lucky in that event (the five year timeline), because I have already outlived every male ancestor that I have been able to find in twenty years of genealogical research!!! But I am acutely aware that I will be " looking over my shoulder " for the beast for the rest of my life. Fuller ---------------------------------------------- > > Laurel, > Do you think that we can ever use the phrase " gone for good " with this monster? I know that I(and countless others) would like to think and say that but no matter how hard I tried to get my uros(all three including the one that did my RP) to use the word CURE they will not not go near it. Even though my post op pathology Gleason went down from 6(3+3) to 5(2+3)and it said things like " all negative margins " and " confined to the left apex " and my surgeon said it did not leave the capsule they still won't use that word. Having " IT " physically removed from my body was why I choose RP(and maybe why is leaning that way). Its kind of depressing to think that I(and many others) made such a HUGE sacrifice and we still can't be sure its " gone for good " . > Regards, > Rick > Quote Link to comment Share on other sites More sharing options...
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