Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Bob...thank you so much for posting this. Its really encouraging to read how things are many years down the track. :-) Thanks heaps...and hugs to you and your wife. :-) I hope you guys forgive me for posting this on such an encouraging post, but I was just wondering if i could share a bit about my dad. Not sure if you remember, but with my dad, the cancer is into his bones pretty much covering his pelvis and has shown up on his spine. We are in New Zealand, (my dad is also 55) Anyway..he has had an injection as part of his treatment (he has them every 3 months...I think..it could be once a month..not totally sure on that)..anyway..the injection was supposed to help, and the last couple of times his psa level has been going up. Postively, i guess, since the injection, the psa has been rising slowly. But its not going down :-(. Dad is still being positive, but he has now finished work, and mum will be finishing work in a week, so they can do stuff together. His oncologist doesnt like giving dad a time , but, in order for dad to get an insurance pay out (dad wants to make sure mum will live in a mortgage free house), his Dr had to give him a time limit. When Dad discussed the letter with his Dr, the Dr said that if the injections dont work as they should, the scenario in the letter might be pretty accurate. It was 12 months. :-( . Please, for those who can, please pray for my parents. Thanks so much, and sorry to put in such a downer. Today is not a great day for me handling it. We are a really close family. So this is kinda tough today. Thanks heaps for letting me come here and share with you all. I appreciate it so muchHugsLouisaNew Zealand (where its winter and cold :-) >From: "geordiebob2000" >Reply-To: ProstateCancerSupport >To: ProstateCancerSupport >Subject: 4 years on >Date: Mon, 21 Jul 2003 21:21:44 -0000 > >It is now almost 4 years (Nov 1999) since I had a Radical >Prostatectomy. >All went well with the op but my wife and I clearly remember the >problems I had with the catheter which had to stay in place for six >weeks. Now when we look back we laugh at the dreaded thing but it is >a true saying that "time is a great healer". >I now lead an almost normal life, have fairly good control of the >bladder (this took about 18 months to achieve)and I have a vast >knowledge of mens toilet facilities up and down the country which I >now rarely have to use. >Things usually get better but not always as quick as we would like >buit the reward is the result of the blood test that says "no >noticeable trace of ............." >Bob > > Gaming galore at XtraMSN Gaming! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Bob You sound to be doing very well. I gather the new way of thinking is to try to get the catheter out after a week (this needs a good jointing of the urethra by the surgeon!). told me the other day that the muscle tone comes back sonner the quicker they can get it out. -----Original Message-----From: geordiebob2000 Sent: 21 July 2003 22:22To: ProstateCancerSupport Subject: 4 years onIt is now almost 4 years (Nov 1999) since I had a Radical Prostatectomy.All went well with the op but my wife and I clearly remember the problems I had with the catheter which had to stay in place for six weeks. Now when we look back we laugh at the dreaded thing but it is a true saying that "time is a great healer".I now lead an almost normal life, have fairly good control of the bladder (this took about 18 months to achieve)and I have a vast knowledge of mens toilet facilities up and down the country which I now rarely have to use.Things usually get better but not always as quick as we would like buit the reward is the result of the blood test that says "no noticeable trace of ............."Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Louisa Don't apologise this is what the group is about. We cheer the cures and also feel for the people who miss out on a cure. The wins in your dad's case are in living as full a life as possible with as little pain as medical science can provide. Prostate Cancer, like breast cancer, is hormonal in character. so it is the male hormones, testosterone and it's mates, that allow growth of tumour. The injections stop the production of testosterone by the testes, the normal process. What we want is for the injections to work well for a long time and some men can prolong this by the use of intermittent hormone therapy if the PSA falls to neglible levels for specific time. The body is a wonderful thing and it has mechanisms to make testosterone if the normal method stops, but this is not what we want in this case. However, this may well be what has happened to your dad. If so the injection is still stopping the main production of testosterone, but an extra quantity is being formed by another gland. There is a range of drugs that stops this extra testosterone working and dad should talk to the oncologist very soon about using something like Casodex (bicultamide) - this is a tablet - in addition to the injections. This should turn the PSA curve the right way again. The body is likely to find ways round this drug and dad then has to look for other drugs etc to help him live a longer active life, lets hope and pray this is a long time away. I must say I am not a doctor - this is a layman's view of things I have picked up from talks and being nosey. My prayers are with you, your family and all who have secondary tumours tonight. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Hi all, Jim here. , you mentioned that getting the catheter out helps get the muscle tone back. Well, I am 19 days out from having surgery, and have had no incontinent accidents at all, ever. I had my catheter out in 7 days. I have no pain, it's almost like I didn't have surgery. Forget the sexual issues, that takes time, and we will see. However, I am doing well. First PSA test to check for Cancer is Aug. 4. Jim RE: 4 years on Bob You sound to be doing very well. I gather the new way of thinking is to try to get the catheter out after a week (this needs a good jointing of the urethra by the surgeon!). told me the other day that the muscle tone comes back sonner the quicker they can get it out. -----Original Message-----From: geordiebob2000 Sent: 21 July 2003 22:22To: ProstateCancerSupport Subject: 4 years onIt is now almost 4 years (Nov 1999) since I had a Radical Prostatectomy.All went well with the op but my wife and I clearly remember the problems I had with the catheter which had to stay in place for six weeks. Now when we look back we laugh at the dreaded thing but it is a true saying that "time is a great healer".I now lead an almost normal life, have fairly good control of the bladder (this took about 18 months to achieve)and I have a vast knowledge of mens toilet facilities up and down the country which I now rarely have to use.Things usually get better but not always as quick as we would like buit the reward is the result of the blood test that says "no noticeable trace of ............."Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Excellent update Jim, welldone :-) ..Thanks for the encouragement. :-)Louisa >From: "misterhistory" >Reply-To: ProstateCancerSupport >To: >Subject: Re: 4 years on >Date: Mon, 21 Jul 2003 16:29:32 -0700 > >Hi all, Jim here. >, you mentioned that getting the catheter out helps get the muscle tone back. Well, I am 19 days out from having surgery, and have had no incontinent accidents at all, ever. I had my catheter out in 7 days. I have no pain, it's almost like I didn't have surgery. Forget the sexual issues, that takes time, and we will see. >However, I am doing well. First PSA test to check for Cancer is Aug. 4. >Jim > 4 years on > > > It is now almost 4 years (Nov 1999) since I had a Radical > Prostatectomy. > All went well with the op but my wife and I clearly remember the > problems I had with the catheter which had to stay in place for six > weeks. Now when we look back we laugh at the dreaded thing but it is > a true saying that "time is a great healer". > I now lead an almost normal life, have fairly good control of the > bladder (this took about 18 months to achieve)and I have a vast > knowledge of mens toilet facilities up and down the country which I > now rarely have to use. > Things usually get better but not always as quick as we would like > buit the reward is the result of the blood test that says "no > noticeable trace of ............." > Bob > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 Well? I guess it's my turn to chime in. I am just over a year out from having surgery. I am wondering what to expect with the sexual issues. I still have a little incontinence but it is loads better. I "try" to stay off the caffeine but its hard sometimes. HA! What can anyone tell me that can set my mind at ease about the sexual side effects? I am 41 yrs old and I am greatful for getting the cancer but would like to hear what I am up against. This part has really gotten me down. I have always enjoyed a "normal" sex life and now, parden the expression, cant get it up with a crane. Do you ever get that back to some sense of normality? thanx for listening Allan Alan, I found the best thing for the impotence is the injections. I use the Viradol Duo which is similar to caverject but quicker to set up. I find the best technique is to inject in the bath. (the warm water helps the circulation) The downside is the erection usually lasts for an hour or two ( if you can call that a downside ) and of cause dry ejaculate, but you get used to that. It is important that you persevere with getting your sex life back on track, it's never going to be like it was, but you have to be thankful for small mercies ( pardon the pun ) You can regain that intamacy which is so important. As for the incontinence it will get better over time as your muscles regain strength, but time unfortunately takes time. There is light at the end of the tunnel and I am sure you will be just fine. Regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 Hi All, Jim here. Well 3 weeks ago today, I had the laparoscopic radical prostatectomy. I have a friend who is 68,the same age I am, and had the same surgery 6 months ago, by the same Dr. He said that he is just now starting to get some erection. I guess my attitude is this. If it comes back, all well and good. The important thing to me is, I am alive, and the cancer is gone, and my wife loves me unconditionally. If things return to a somewhat normal, whatever that is, life, good. If not, I am the happiest man alive. Jim Re: 4 years on Well? I guess it's my turn to chime in. I am just over a year out from having surgery. I am wondering what to expect with the sexual issues. I still have a little incontinence but it is loads better. I "try" to stay off the caffeine but its hard sometimes. HA! What can anyone tell me that can set my mind at ease about the sexual side effects? I am 41 yrs old and I am greatful for getting the cancer but would like to hear what I am up against. This part has really gotten me down. I have always enjoyed a "normal" sex life and now, parden the expression, cant get it up with a crane. Do you ever get that back to some sense of normality?thanx for listeningAllanAlan,I found the best thing for the impotence is the injections. I use the Viradol Duo which is similar to caverject but quicker to set up. I find the best technique is to inject in the bath. (the warm water helps the circulation) The downside is the erection usually lasts for an hour or two ( if you can call that a downside ) and of cause dry ejaculate, but you get used to that. It is important that you persevere with getting your sex life back on track, it's never going to be like it was, but you have to be thankful for small mercies ( pardon the pun ) You can regain that intamacy which is so important.As for the incontinence it will get better over time as your muscles regain strength, but time unfortunately takes time. There is light at the end of the tunnel and I am sure you will be just fine.Regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 Louisa, "See" you in church on Sunday Robin ********************************************************************************** The information contained in this message is confidential and may be legally privileged. If you are not the intended recipient, please do not read, copy or otherwise use it and do not disclose it to anyone else. Please notify the sender of the delivery error and then delete the message from your system. Any views or opinions expressed in this email are those of the author only. None of the representatives of Zurich Advice Network Limited is authorised to enter into any contracts on behalf of the company or any other Zurich company by e-mail or any other means. All contracts to which Zurich is a party are authorised and documented by other means. Representative only of Zurich Advice Network Limited. Zurich Advice Network Limited, regulated by the Financial Services Authority, represents only the Zurich Financial Management Marketing Group for its life assurance, pensions and investment products. Thank you for reading this notice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 Dear Louisa, I very rarely post on this or any other group, and also I don't read my emails very often, so I am usually late when I do get around to replying, but I feel that I can offer you and your Dad some encouragement from my own experience. I was diagnosed with PCa when I was 57, My PSA was 219 and there were at least 20 mets, in my pelvis, spine, ribs and thigh, and I was getting a lot of pain from my pelvis. It was too late to attempt any curative treatment, hormone therapy was the only option. My prognosis, to say the least, wasn't good. That was seven and a half years ago. I have had a wonderful 7 1/2 years, in fact the best 7 years of my life, I have done lots of things that I had always wanted to do, and more importantly I haven't done things that I didn't want to do. Its not all been plain sailing and there have been many ups and downs and worries, but I'm still here and basically well... my PSA is at present 0.8. So don't get too despondent, or worry too much, there is every chance that your Dad will do at least as well as this. I have a poster on my office wall, I can't remember where it came from, but I look at it often, it goes.... Things have a funny way of working out one way or another, Never lose hope for very long... its quite normal to be dispirited for short bursts of time... but the key is not to get too depressed and totally give up. Take bad news in your stride, re-evaluate your situation and move on as best you can. With kind regards, to you, your Dad and your Mum, Ward. North Wales Re: 4 years on I hope you guys forgive me for posting this on such an encouraging post, but I was just wondering if i could share a bit about my dad. Not sure if you remember, but with my dad, the cancer is into his bones pretty much covering his pelvis and has shown up on his spine. We are in New Zealand, (my dad is also 55) Anyway..he has had an injection as part of his treatment (he has them every 3 months...I think..it could be once a month..not totally sure on that)..anyway..the injection was supposed to help, and the last couple of times his psa level has been going up. Postively, i guess, since the injection, the psa has been rising slowly. But its not going down :-(. Dad is still being positive, but he has now finished work, and mum will be finishing work in a week, so they can do stuff together. His oncologist doesnt like giving dad a time , but, in order for dad to get an insurance pay out (dad wants to make sure mum will live in a mortgage free house), his Dr had to give him a time limit. When Dad discussed the letter with his Dr, the Dr said that if the injections dont work as they should, the scenario in the letter might be pretty accurate. It was 12 months. :-( . Please, for those who can, please pray for my parents. Thanks so much, and sorry to put in such a downer. Today is not a great day for me handling it. We are a really close family. So this is kinda tough today. Thanks heaps for letting me come here and share with you all. I appreciate it so muchHugsLouisaNew Zealand (where its winter and cold :-) Gaming galore at XtraMSN Gaming! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 Hi Allan, I am now 4 years on and I have to say that as of yet we have not been able to solve the sex problem. I say we because I find the doctors and specialists most considerate and they have a genuine desire to help solve the problem. My age is different to yours, I am now 67 but still we search to find an answer. I am to see a specialist in mid August and if we have success I will let you know. Like you I count myself lucky to have been diagnosed with PC and received treatment which has restored me to good health.Sex would be nice but I am still on a bit of a high at being at being cured. I would suggest that you keep discussing your concern with your doctor as almost everyday brings something new. Good luck Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 Hi (and others..) Thanks sooo much for your words of encouragement..!! I appreciate it sooo much..Thankyou LoveLouisa >From: "Ward" >Reply-To: ProstateCancerSupport >To: >Subject: Re: 4 years on >Date: Wed, 23 Jul 2003 20:35:05 +0100 > >Dear Louisa, >I very rarely post on this or any other group, and also I don't read my emails very often, so I am usually late when I do get around to replying, but I feel that I can offer you and your Dad some encouragement from my own experience. > >I was diagnosed with PCa when I was 57, My PSA was 219 and there were at least 20 mets, in my pelvis, spine, ribs and thigh, and I was getting a lot of pain from my pelvis. It was too late to attempt any curative treatment, hormone therapy was the only option. My prognosis, to say the least, wasn't good. > >That was seven and a half years ago. I have had a wonderful 7 1/2 years, in fact the best 7 years of my life, I have done lots of things that I had always wanted to do, and more importantly I haven't done things that I didn't want to do. Its not all been plain sailing and there have been many ups and downs and worries, but I'm still here and basically well... my PSA is at present 0.8. > >So don't get too despondent, or worry too much, there is every chance that your Dad will do at least as well as this. > >I have a poster on my office wall, I can't remember where it came from, but I look at it often, it goes.... > >Things have a funny way of working out one way or another, > >Never lose hope for very long... its quite normal to be dispirited for short bursts of time... but the key is not to get too depressed and totally give up. > >Take bad news in your stride, re-evaluate your situation and move on as best you can. > >With kind regards, to you, your Dad and your Mum, > >Ward. > >North Wales > Re: 4 years on > > > I hope you guys forgive me for posting this on such an encouraging post, but I was just wondering if i could share a bit about my dad. Not sure if you remember, but with my dad, the cancer is into his bones pretty much covering his pelvis and has shown up on his spine. We are in New Zealand, (my dad is also 55) Anyway..he has had an injection as part of his treatment (he has them every 3 months...I think..it could be once a month..not totally sure on that)..anyway..the injection was supposed to help, and the last couple of times his psa level has been going up. Postively, i guess, since the injection, the psa has been rising slowly. But its not going down :-(. Dad is still being positive, but he has now finished work, and mum will be finishing work in a week, so they can do stuff together. His oncologist doesnt like giving dad a time , but, in order for dad to get an insurance pay out (dad wants to make sure mum will live in a mortgage free house), his Dr had to give him a time limit. When Dad discussed the letter with his Dr, the Dr said that if the injections dont work as they should, the scenario in the letter might be pretty accurate. It was 12 months. :-( . Please, for those who can, please pray for my parents. Thanks so much, and sorry to put in such a downer. Today is not a great day for me handling it. We are a really close family. So this is kinda tough today. > > Thanks heaps for letting me come here and share with you all. I appreciate it so much > Hugs > Louisa > New Zealand (where its winter and cold :-) > > > > > > >------------------------------------------------------------------------------ > Gaming galore at XtraMSN Gaming! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2003 Report Share Posted August 4, 2003 Hi Although I'm six months post radical prostectomy and the blood tests are very satisfactory there are still tough moments - I've got to have a bladder check on Wednesday because of incontinence - and your e-mail cheered me up no end. Good on you and thanks for making me see the brighter side. Huxley In message <00f501c35153$b190d420$9042c0c1@oemcomputer>, Ward writes >Dear Louisa, >I very rarely post on this or any other group, and also I don't read my emails >very often, so I am usually late when I do get around to replying, but I feel >that I can offer you and your Dad some encouragement from my own experience. > >I was diagnosed with PCa when I was 57, My PSA was 219 and there were at least >20 mets, in my pelvis, spine, ribs and thigh, and I was getting a lot of pain >from my pelvis. It was too late to attempt any curative treatment, hormone >therapy was the only option. My prognosis, to say the least, wasn't good. > >That was seven and a half years ago. I have had a wonderful 7 1/2 years, in >fact the best 7 years of my life, I have done lots of things that I had always >wanted to do, and more importantly I haven't done things that I didn't want to >do. Its not all been plain sailing and there have been many ups and downs and >worries, but I'm still here and basically well... my PSA is at present 0.8. > >So don't get too despondent, or worry too much, there is every chance that your >Dad will do at least as well as this. > >I have a poster on my office wall, I can't remember where it came from, but I >look at it often, it goes.... > >Things have a funny way of working out one way or another, > >Never lose hope for very long... its quite normal to be dispirited for short >bursts of time... but the key is not to get too depressed and totally give up. > >Take bad news in your stride, re-evaluate your situation and move on as best you >can. > >With kind regards, to you, your Dad and your Mum, > >Ward. > >North Wales > Re: 4 years on > > > I hope you guys forgive me for posting this on such an encouraging post, but I >was just wondering if i could share a bit about my dad. Not sure if you >remember, but with my dad, the cancer is into his bones pretty much covering his >pelvis and has shown up on his spine. We are in New Zealand, (my dad is also 55) >Anyway..he has had an injection as part of his treatment (he has them every 3 >months...I think..it could be once a month..not totally sure on >that)..anyway..the injection was supposed to help, and the last couple of times >his psa level has been going up. Postively, i guess, since the injection, the >psa has been rising slowly. But its not going down :-(. Dad is still being >positive, but he has now finished work, and mum will be finishing work in a >week, so they can do stuff together. His oncologist doesnt like giving dad a >time , but, in order for dad to get an insurance pay out (dad wants to make sure >mum will live in a mortgage free house), his Dr had to give him a time limit. >When Dad discussed the letter with his Dr, the Dr said that if the injections >dont work as they should, the scenario in the letter might be pretty accurate. >It was 12 months. :-( . Please, for those who can, please pray for my parents. >Thanks so much, and sorry to put in such a downer. Today is not a great day for >me handling it. We are a really close family. So this is kinda tough today. > > Thanks heaps for letting me come here and share with you all. I appreciate it >so much > Hugs > Louisa > New Zealand (where its winter and cold :-) > > > > > > >------------------------------------------------------------------------------ > Gaming galore at XtraMSN Gaming! > Quote Link to comment Share on other sites More sharing options...
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