Guest guest Posted July 3, 2008 Report Share Posted July 3, 2008 Hi All, My father was treated with radiation for his prostate cancer about 12 years ago. Since then, he has suffered from issues related to the radiation treatments. He even had surgery to losen his sphincter because he was having some problems with bowel movements. Recently, his doc told him he is suffering from Radiation Proctitis. I'm trying to find resources, possible treatments, or things he can do to keep himself comfortable. He is 77, and has a hard time leaving the house because he is afraid he'll have an accident. I'm looking for any kind of information, resources, etc. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2008 Report Share Posted July 3, 2008 I was treated with radiation about 2 years ago and I'm experiencing what you father experiences. I just saw my urologist last Friday and was told that not much can be done to solve the problem, just learn to adjust yourself with living with it. That does keep me from getting out very much. This is my first comment to the group. Thanks for accepting my membership. Bill > My father was treated with radiation for his prostate cancer about 12> years ago. Since then, he has suffered from issues related to the> radiation treatments. He even had surgery to losen his sphincter> because he was having some problems with bowel movements. Recently,> his doc told him he is suffering from Radiation Proctitis. I'm trying> to find resources, possible treatments, or things he can do to keep> himself comfortable. (snip)I recommend that he consult a urologist.Regards,Steve J 35772.10177.1502 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2008 Report Share Posted July 3, 2008 I was treated with radiation about 2 years ago and I'm experiencing what you father experiences. I just saw my urologist last Friday and was told that not much can be done to solve the problem, just learn to adjust yourself with living with it. That does keep me from getting out very much. This is my first comment to the group. Thanks for accepting my membership. Bill > My father was treated with radiation for his prostate cancer about 12> years ago. Since then, he has suffered from issues related to the> radiation treatments. He even had surgery to losen his sphincter> because he was having some problems with bowel movements. Recently,> his doc told him he is suffering from Radiation Proctitis. I'm trying> to find resources, possible treatments, or things he can do to keep> himself comfortable. (snip)I recommend that he consult a urologist.Regards,Steve J 35772.10177.1502 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2008 Report Share Posted July 3, 2008 > My father was treated with radiation for his prostate cancer about 12 > years ago. Since then, he has suffered from issues related to the > radiation treatments. He even had surgery to losen his sphincter > because he was having some problems with bowel movements. Recently, > his doc told him he is suffering from Radiation Proctitis. I'm trying > to find resources, possible treatments, or things he can do to keep > himself comfortable. (snip) I recommend that he consult a urologist. Regards, Steve J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2008 Report Share Posted July 3, 2008 > My father was treated with radiation for his prostate cancer about 12 > years ago. Since then, he has suffered from issues related to the > radiation treatments. He even had surgery to losen his sphincter > because he was having some problems with bowel movements. Recently, > his doc told him he is suffering from Radiation Proctitis. I'm trying > to find resources, possible treatments, or things he can do to keep > himself comfortable. (snip) I recommend that he consult a urologist. Regards, Steve J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 Dear Bill, What type of radiation were you treated with and may I ask for how long?. My husband is currently having IMRT treatments, I was just wondering it this could happen to him. The doctors want my husband to have 45 treatments in all. I wish you the best and you will be in my thoughts and prayers Sincerely, Sheila -------------- Original message -------------- From: BVAUGHN329@... I was treated with radiation about 2 years ago and I'm experiencing what you father experiences. I just saw my urologist last Friday and was told that not much can be done to solve the problem, just learn to adjust yourself with living with it. That does keep me from getting out very much. This is my first comment to the group. Thanks for accepting my membership. Bill In a message dated 7/3/2008 5:34:25 P.M. Eastern Daylight Time, mycroftscj1 writes: > My father was treated with radiation for his prostate cancer about 12> years ago. Since then, he has suffered from issues related to the> radiation treatments. He even had surgery to losen his sphincter> because he was having some problems with bowel movements. Recently,> his doc told him he is suffering from Radiation Proctitis. I'm trying> to find resources, possible treatments, or things he can do to keep> himself comfortable. (snip)I recommend that he consult a urologist.Regards,Steve J35772.10177.1502 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 Dear Bill, What type of radiation were you treated with and may I ask for how long?. My husband is currently having IMRT treatments, I was just wondering it this could happen to him. The doctors want my husband to have 45 treatments in all. I wish you the best and you will be in my thoughts and prayers Sincerely, Sheila -------------- Original message -------------- From: BVAUGHN329@... I was treated with radiation about 2 years ago and I'm experiencing what you father experiences. I just saw my urologist last Friday and was told that not much can be done to solve the problem, just learn to adjust yourself with living with it. That does keep me from getting out very much. This is my first comment to the group. Thanks for accepting my membership. Bill In a message dated 7/3/2008 5:34:25 P.M. Eastern Daylight Time, mycroftscj1 writes: > My father was treated with radiation for his prostate cancer about 12> years ago. Since then, he has suffered from issues related to the> radiation treatments. He even had surgery to losen his sphincter> because he was having some problems with bowel movements. Recently,> his doc told him he is suffering from Radiation Proctitis. I'm trying> to find resources, possible treatments, or things he can do to keep> himself comfortable. (snip)I recommend that he consult a urologist.Regards,Steve J35772.10177.1502 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 Sheila - Please don't worry. I've just had 20 fractions, (so a higher dose per session than your old man and very precisely directed by the Physics guys in the oncology Dept) finished nearly two months ago and after some immediate effects, I'm back to normal. My brother likewise about six weeks before me and he was OK within 5 weeks. You just can't tell how the individual will react, but most are OK. The risk of longer term damage remains however. No treatments are free of the risk of side effects, but I can't see how deterioration could occur given the care that was taken to keep the radiation away from my bowel and bladder. The relief I feel having a normal PSA and a normal feeling prostate, after a Gleeson 9 and PSA 62.4 diagnosis can't be bought. Knowing that PCa might come back to hit me again, I nevertheless feel that my chances now are as good as anybody's, diagnosed or undiagnosed. Possibly a whole lot better given a better diet, fitness and attitude than most. Positive thinking! rgds shedorman@... wrote: Dear Bill, What type of radiation were you treated with and may I ask for how long?. My husband is currently having IMRT treatments, I was just wondering it this could happen to him. The doctors want my husband to have 45 treatments in all. I wish you the best and you will be in my thoughts and prayers Sincerely, Sheila -------------- Original message -------------- From: BVAUGHN329aol I was treated with radiation about 2 years ago and I'm experiencing what you father experiences. I just saw my urologist last Friday and was told that not much can be done to solve the problem, just learn to adjust yourself with living with it. That does keep me from getting out very much. This is my first comment to the group. Thanks for accepting my membership. Bill In a message dated 7/3/2008 5:34:25 P.M. Eastern Daylight Time, mycroftscj1 writes: > My father was treated with radiation for his prostate cancer about 12> years ago. Since then, he has suffered from issues related to the> radiation treatments. He even had surgery to losen his sphincter> because he was having some problems with bowel movements. Recently,> his doc told him he is suffering from Radiation Proctitis. I'm trying> to find resources, possible treatments, or things he can do to keep> himself comfortable. (snip)I recommend that he consult a urologist.Regards,Steve J35772.10177.1502 Not happy with your email address? Get the one you really want - millions of new email addresses available now at Yahoo! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 Sheila - Please don't worry. I've just had 20 fractions, (so a higher dose per session than your old man and very precisely directed by the Physics guys in the oncology Dept) finished nearly two months ago and after some immediate effects, I'm back to normal. My brother likewise about six weeks before me and he was OK within 5 weeks. You just can't tell how the individual will react, but most are OK. The risk of longer term damage remains however. No treatments are free of the risk of side effects, but I can't see how deterioration could occur given the care that was taken to keep the radiation away from my bowel and bladder. The relief I feel having a normal PSA and a normal feeling prostate, after a Gleeson 9 and PSA 62.4 diagnosis can't be bought. Knowing that PCa might come back to hit me again, I nevertheless feel that my chances now are as good as anybody's, diagnosed or undiagnosed. Possibly a whole lot better given a better diet, fitness and attitude than most. Positive thinking! rgds shedorman@... wrote: Dear Bill, What type of radiation were you treated with and may I ask for how long?. My husband is currently having IMRT treatments, I was just wondering it this could happen to him. The doctors want my husband to have 45 treatments in all. I wish you the best and you will be in my thoughts and prayers Sincerely, Sheila -------------- Original message -------------- From: BVAUGHN329aol I was treated with radiation about 2 years ago and I'm experiencing what you father experiences. I just saw my urologist last Friday and was told that not much can be done to solve the problem, just learn to adjust yourself with living with it. That does keep me from getting out very much. This is my first comment to the group. Thanks for accepting my membership. Bill In a message dated 7/3/2008 5:34:25 P.M. Eastern Daylight Time, mycroftscj1 writes: > My father was treated with radiation for his prostate cancer about 12> years ago. Since then, he has suffered from issues related to the> radiation treatments. He even had surgery to losen his sphincter> because he was having some problems with bowel movements. Recently,> his doc told him he is suffering from Radiation Proctitis. I'm trying> to find resources, possible treatments, or things he can do to keep> himself comfortable. (snip)I recommend that he consult a urologist.Regards,Steve J35772.10177.1502 Not happy with your email address? Get the one you really want - millions of new email addresses available now at Yahoo! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 Shelia, In response to your question, I had IMRT treatments and a total of 37 treatments. Hopefully your husband's outcome will be as good as 's. I was not trying to throw any negative effects on his outcome, I was just telling you the results of my outcome. Good luck to you and your husband. Bill > > > My father was treated with radiation for his prostate cancer about 12 > > years ago. Since then, he has suffered from issues related to the > > radiation treatments. He even had surgery to losen his sphincter > > because he was having some problems with bowel movements. Recently, > > his doc told him he is suffering from Radiation Proctitis. I'm trying > > to find resources, possible treatments, or things he can do to keep > > himself comfortable. > > (snip) > > I recommend that he consult a urologist. > > Regards, > > Steve J > > > > > > > 35772.10177.1502 > > > > > > > --------------------------------- > Not happy with your email address? > Get the one you really want - millions of new email addresses available now at Yahoo! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Hi Shelia, My gleason score was 3 + 3 = 6 I did take Zolodex hormone treatments for awhile but my psa kept going higher, so we opted for surgery and I still had cancer, then I had the treatments. I have experience a little bowel problems. That's the only side effects I've had. I did have hot flashes while taking the hormone treatments but from what I understand, that's to be expected. Good luck, Bill Bill, Thank you for your response as well. My husband is having a total of 45 treatments. Have you had any side effects from the IMRT treatments? What was you Gleason, if you don't mind me asking? Were you also on Hormone Therapy?? Take care and God Bless. Sincerely, Sheila -------------- Original message -------------- From: "bvaughn329" <BVAUGHN329aol> Shelia,In response to your question, I had IMRT treatments and a total of 37treatments. Hopefully your husband's outcome will be as good as's. I was not trying to throw any negative effects on hisoutcome, I was just telling you the results of my outcome. Good luckto you and your husband.Bill> > > My father was treated with radiation for his prostate cancer about 12> > years ago. Since then, he has suffered from issues related to the> > radiation treatments. He even had surgery to losen his sphin cter> > because he was having some problems with bowel movements. Recently,> > his doc told him he is suffering from Radiation Proctitis. I'm trying> > to find resources, possible treatments, or things he can do to keep> > himself comfortable. > > (snip)> > I recommend that he consult a urologist.> > Regards,> > Steve J> > > > > > > 35772.10177.1502 > > > > > > > ---------------------------------> Not happy with your email address?> Get the one you really want - millions of new email addressesavailable now at Yahoo!> Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Dear , Thank you for your response. From what I've read it's a wait and see situation. My husband also had a Gleason 9 and PSA of 7.1. He is due for a total of 45 IMRT treatments. He has only had 15 treatments so far, with no problems except for going to the bathroom 4 or 5 times a night. He is also on Zoladex (Hormone Therapy) for one year, we hope. The hormone therapy is the one causing all the problems at the moment, with fatigue and plenty of hot flashes and ED. He is dealing well so far. His PSA has dropped to 0.58 and I'm sure that is due to the Zoladex. I will keep you all posted. You will be in my thoughts and prayers. Best Wishes, Sheila -------------- Original message -------------- Sheila - Please don't worry. I've just had 20 fractions, (so a higher dose per session than your old man and very precisely directed by the Physics guys in the oncology Dept) finished nearly two months ago and after some immediate effects, I'm back to normal. My brother likewise about six weeks before me and he was OK within 5 weeks. You just can't tell how the individual will react, but most are OK. The risk of longer term damage remains however. No treatments are free of the risk of side effects, but I can't see how deterioration could occur given the care that was taken to keep the radiation away from my bowel and bladder. The relief I feel having a normal PSA and a normal feeling prostate, after a Gleeson 9 and PSA 62.4 diagnosis can't be bought. Knowing that PCa might come back to hit me again, I nevertheless feel that my chances now are as good as anybody's, diagnosed or undiagnosed. Possibly a whole lot better given a better diet, fitness and attitude than most. Positive thinking! rgds shedormancomcast (DOT) net wrote: Dear Bill, What type of radiation were you treated with and may I ask for how long?. My husband is currently having IMRT treatments, I was just wondering it this could happen to him. The doctors want my husband to have 45 treatments in all. I wish you the best and you will be in my thoughts and prayers Sincerely, Sheila -------------- Original message -------------- From: BVAUGHN329aol I was treated with radiation about 2 years ago and I'm experiencing what you father experiences. I just saw my urologist last Friday and was told that not much can be done to solve the problem, just learn to adjust yourself with living with it. That does keep me from getting out very much. This is my first comment to the group. Thanks for accepting my membership. Bill In a message dated 7/3/2008 5:34:25 P.M. Eastern Daylight Time, mycroftscj1 writes: > My father was treated with radiation for his prostate cancer about 12> years ago. Since then, he has suffered from issues related to the> radiation treatments. He even had surgery to losen his sphincter> because he was having some problems with bowel movements. Recently,> his doc told him he is suffering from Radiation Proctitis. I'm trying> to find resources, possible treatments, or things he can do to keep> himself comfortable. (snip)I recommend that he consult a urologist.Regards,Steve J35772.10177.1502 Not happy with your email address? Get the one you really want - millions of new email addresses available now at Yahoo! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Bill, Thank you for your response as well. My husband is having a total of 45 treatments. Have you had any side effects from the IMRT treatments? What was you Gleason, if you don't mind me asking? Were you also on Hormone Therapy?? Take care and God Bless. Sincerely, Sheila -------------- Original message -------------- Shelia,In response to your question, I had IMRT treatments and a total of 37treatments. Hopefully your husband's outcome will be as good as's. I was not trying to throw any negative effects on hisoutcome, I was just telling you the results of my outcome. Good luckto you and your husband.Bill> > > My father was treated with radiation for his prostate cancer about 12> > years ago. Since then, he has suffered from issues related to the> > radiation treatments. He even had surgery to losen his sphin cter> > because he was having some problems with bowel movements. Recently,> > his doc told him he is suffering from Radiation Proctitis. I'm trying> > to find resources, possible treatments, or things he can do to keep> > himself comfortable. > > (snip)> > I recommend that he consult a urologist.> > Regards,> > Steve J> > > > > > > 35772.10177.1502 > > > > > > > ---------------------------------> Not happy with your email address?> Get the one you really want - millions of new email addressesavailable now at Yahoo!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 On July 6, Bill replied to Sheila: > My gleason score was 3 + 3 = 6 > I did take Zolodex (sic: Zoladex) hormone treatments for awhile but my psa kept going > higher, How long? It seems that the PCa might be HR (hormone refractory), which is a serious matter that requires the attention of a cancer specialist. > so we opted for surgery and I still had cancer, then I had the > treatments. Based upon the sketchy information, I suspect that Bill has systemic PCa and that no amount of local treatments such as surgery and radiation will be curative. In fact, those more knowledgeable than I are certain that systemic PCa is incurable and must be treated as a chronic disease. > I have experience a little bowel problems. That's the only > side effects I've had. Good! So far. It might be time to seek advice from a genuine cancer specialist, a medical oncologist. Some of those who are trained in tx of PCa are listed via this site of the authoritative Prostate Cancer Research Institute: http://prostate-cancer.org/resource/find-a-physician.html And no, a med onc does not automatically and without thought start a new patient on chemotherapy. That is an internet fantasy. Of course, the med onc often sees a patient after other medics have failed, and chemo is the only remaining tx option. > I did have hot flashes while taking the hormone > treatments but from what I understand, that's to be expected. Well, as I keep ranting, that's to be expected only if the medic is ignorant of or cares not about side effects (SEs) of " hormone therapy " aka ADT (androgen deprivation therapy). And some of those SEs can be serious, if rare. See, http://www.prostate-cancer.org/education/andind/Guess_TestosteroneSideEffects.ht\ ml or http://tinyurl.com/2ymb8f All too often, empowered patients find themselves in the position of educating their medics. No complaint; the medics cannot know everything -- and don't. 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 July 6, 2008 Report Share Posted July 6, 2008 In response to the last reply, I do not have systemic PCa. I started on the Zoladex (sorry about misspelling it earlier) in January 2006. I took those treatments for several months and I decided I didn't want anymore of those. I elected to have surgery. The doctor told me that the cancer had spread a little on the outside of the prostate, and would require some radiation. The lymph nodes were cancer free. The cancer center I go to have two excellent cancer specialists and give the best of treatment. Because I have a little bowel irritation as a result from the radiation treatments certainly does nothing to suggest I have systemic PCa. I have had many tests run since January 2006, including bone samples, regular psa checks, MRI, etc. and all indications show I'm cancer free. Tri State Regional Cancer Center in Ashland, Ky, and The VA Medical Center in Lexington, Ky and Huntington, WV have done an outstanding job, therefore I have no reason to see another cancer specials. Sincerely, Bill > > On July 6, Bill replied to Sheila: > > > My gleason score was 3 + 3 = 6 > > I did take Zolodex (sic: Zoladex) hormone treatments for awhile but my psa kept going > > higher, > > How long? It seems that the PCa might be HR (hormone refractory), which > is a serious matter that requires the attention of a cancer specialist. > > > so we opted for surgery and I still had cancer, then I had the > > treatments. > > Based upon the sketchy information, I suspect that Bill has systemic PCa > and that no amount of local treatments such as surgery and radiation > will be curative. In fact, those more knowledgeable than I are certain > that systemic PCa is incurable and must be treated as a chronic disease. > > > I have experience a little bowel problems. That's the only > > side effects I've had. > > Good! So far. > > It might be time to seek advice from a genuine cancer specialist, a > medical oncologist. Some of those who are trained in tx of PCa are > listed via this site of the authoritative Prostate Cancer Research > Institute: http://prostate-cancer.org/resource/find-a-physician.html > > And no, a med onc does not automatically and without thought start a new > patient on chemotherapy. That is an internet fantasy. > > Of course, the med onc often sees a patient after other medics have > failed, and chemo is the only remaining tx option. > > > I did have hot flashes while taking the hormone > > treatments but from what I understand, that's to be expected. > > Well, as I keep ranting, that's to be expected only if the medic is > ignorant of or cares not about side effects (SEs) of " hormone therapy " > aka ADT (androgen deprivation therapy). And some of those SEs can be > serious, if rare. > > See, > http://www.prostate-cancer.org/education/andind/Guess_TestosteroneSideEffects.ht\ ml > or > http://tinyurl.com/2ymb8f > > All too often, empowered patients find themselves in the position of > educating their medics. No complaint; the medics cannot know everything > -- and don't. > > 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...
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