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Medical Forum / Diseases and Disorders / Prostate Cancer / January 20041 Year tomorrow
Hi All, Like everyone else who writes something like this, I will be eternally grateful to the many people in this newsgroup who took the time to answer my posts before, during and after my LRP on 1/11/03. I was 45 yrs old when my 1st PSA test came back at 3.7. After the biopsy came back with G 3+3, I found Dr. Douglas Dahl on http://www.phoenix5.org and had the LRP (laporoscopic radical prostatectomy). If a newly diagnosed person asks me "What should I do?" I always tell them 2 things: 1) take your time, this is a very slow-growing cancer with a near 100% cure rate. 2) look at all the options and pick the one that is right for you and your family. I have recovered pretty well. There have been some changes and some lingering side effects but all in all I feel great and enjoy life with a new outlook and more joy than I ever had before my "death sentence". I have yet to have a usable erection but there are hopeful signs. I haven't leaked in 9 months but when I gotta go, I gotta go! I also have started riding a recumbent bicycle (http://www.escapekey.biz/bent.html) per doctor's orders (he didn't want me sitting on his fine work). I got great care and was back to work in less than 2 weeks. Thanks again for all your help. If you are newly diagnosed, please feel free to email me (take out the nospam) and I will answer all your questions to the best of my ability. -john Hi John, It sounds like you are doing fine. I am glad you are not peeing yourself also. That is the worst. I see in your letter that you are worried about ED. Walking and bike riding can help. Using can help also even in a flaccid state. The inexpensive pump works and use it. It happens to be the less intrusive. My Dr. scheduled me for shot therapy. I did it, and after several trials and errors, was glad to have that opportunity. It worked on and off for about 2 years. Talk about beating a dead horse.! Anyway, I tried Viagra and got a screaming headache! After 2 years if not more, and not doing needles and or pumps, I started to get some kind of reaction? Hum, nerve damage, one set saved, connection! After 4 years now I can say that I am in "Great Shape" in the ed department. I use .25% of a 100 mg pill. Wow! Next PSA test coming.....RP 1999 Wish me luck. I wish you the same! Keep jerking it! It will come to life. And love your wife or your partner! John Loomis hanging in there! > Hi All, > [quoted text clipped - 28 lines] > > -john Hi, John Loomis.... I just want to tell you how much I appreciate you sticking around and continuing to offer support and encouragement. I'm 14 months post-op after nerve-sparing LRP and still no reaction from Mr. Willy. ;P I keep after him to wake up... but he seems to be down for the count. Some days it's much easier to forget about than others. But your upbeat posts and reminders of your long journey back to life really do give me *hope* that something might still happen down there! I feel so petty sometimes... I should be thankful for life. But I miss the erections, plain and simple. In so many ways, the psychological components of this disease have been MUCH more difficult to handle than the actual surgery. Take care... and thanks again! MikeH > Hi John, It sounds like you are doing fine. I am glad you are not peeing > yourself also. That is the worst. [quoted text clipped - 24 lines] > And love your wife or your partner! > John Loomis hanging in there! > In so many ways, the psychological components of this disease have been MUCH > more difficult to handle than the actual surgery. I agree. Maybe it was better that I didn't know about that ahead of time (even though I HAD read about it). Hang in there, though. (Or, maybe there has been enough hanging, and now it's time for some lifting.:) If making fun of these things can get a rise out of them...) Anyhow, I also appreciate what John Loomis is doing for this group. JohnG > > In so many ways, the psychological components of this disease have been MUCH > > more difficult to handle than the actual surgery. [quoted text clipped - 4 lines] > these things can get a rise out of them...) Anyhow, I also appreciate what > John Loomis is doing for this group. Hi, JohnG..... It does help to have others to go through this with. And sometimes humor is just what is needed. I'd much rather laugh than cry. I just thought my erections would *bounce back* like they used to! LOL How I miss the good old days! Strange how a boner can mean so much to a guy's psyche, huh?? MikeH > Hi, John Loomis.... > [quoted text clipped - 5 lines] > your long journey back to life really do give me *hope* that something might > still happen down there! I feel so petty sometimes... You are not being petty at all. Even apart from sex, erections were a natural part of your body's functioning, and it is perfectly normal to feel the loss. John and I are two examples of men whose erections returned well past 14 months, so something may yet develop. But even if they don't it is possible for you to have something approaching a normal sex life with a pump or injections. It won't completely make up for the lack of erections, but it will help. > I should be thankful > for life. But I miss the erections, plain and simple. In so many ways, the [quoted text clipped - 41 lines] >>And love your wife or your partner! >>John Loomis hanging in there! > > Hi, John Loomis.... > > [quoted text clipped - 13 lines] > normal sex life with a pump or injections. It won't completely make up > for the lack of erections, but it will help. Thanks, Leonard.... you, too, are forever supportive and encouraging. I sometimes wonder how I would have made it through this past year without all you guys!! I have a pump.... other than using it for exercise, it doesn't work for me. I have injections, but I started using those and developped Peyronie's. I don't think I was meant to have a sex life post-RP. :( It would help greatly to have a wife who was really seeming to miss the sex, too. My wife wasn't really interested in sex anymore..... *before* the RP. So this has been like a *holiday* to her. Anything I do, I do on my own. I bought and read "Making Love Again". I suggested she read it. She did. She finished it and put it down.... and has never mentioned it at all. We are just in different places ... and my equipment is failing... and some days it's a bit more than I know how to deal with. I appreciate your words... more than you know! MikeH Mike, I can relate completely. I am 16 months post op at age 50 and have zero erectile activity. I knew before hand that it may turn out this way, but no one gave me a clue how I should mentally deal with the lack of sexual function. Nothing has worked so far. Viagra and Muse do nothing, unless you like headaches and a slightly swollen-aching penis. I do have a pump for self gratification, but the wife thinks it's too wierd and "cold", so sex is something I only dream about. I used to be a moderate drinker in my younger days, quit for many years but have fell back upon the drinking to "fix" the problem. Yes, I am glad to be alive, etc. But I do miss sex and if this is the way life is going to be I should at least be allowed to drink. It at least helps keep my desires at bay. I hope you eventually recoup your erections, what more can I say. Take care, you aren't alone... Tom > > > Hi, John Loomis.... > > > [quoted text clipped - 38 lines] > > MikeH Glad to see you came back. My memory is sketchy, but I seem to remember the "45". Way too young for this disease, but that's probably how old I was when I got it.  SignatureProstate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .1 Lupron 7/03, 8/03, 12/03 > Hi All, > [quoted text clipped - 28 lines] > > -john What ever happened to the guy who posted that drivel about drinking your own urine? He was an endless source of amusement for me. > Glad to see you came back. My memory is sketchy, but I seem to remember the > "45". Way too young for this disease, but that's probably how old I was [quoted text clipped - 52 lines] > > > > -john Martin Howard near the end of November claimed a PSA reduction. I think it went from 930 to 850, or thereabouts. He was regularly reporting his PSA tests, but I've not heard from him since late November, early December. SignatureProstate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .1 Lupron 7/03, 8/03, 12/03 > What ever happened to the guy who posted that drivel about drinking your own > urine? He was an endless source of amusement for me. [quoted text clipped - 63 lines] > > > > > > -john > I have recovered pretty well. There have been some changes and some > lingering side effects but all in all I feel great and enjoy life with a new > outlook and more joy than I ever had before my "death sentence". I have yet > to have a usable erection but there are hopeful signs. Hopeful signs are good. That's all I had for a long time after my RP -- nearly a year. At least it lets you know that the mechanism still exists. > I haven't leaked in 9 > months but when I gotta go, I gotta go! I also have started riding a > recumbent bicycle (http://www.escapekey.biz/bent.html) per doctor's orders > (he didn't want me sitting on his fine work). I got great care and was back > to work in less than 2 weeks. After my surgery I figured a recumbent would be my backup plan for riding, but it turned out not to be necessary. My surgery was in late January (2002, age 53) and I started riding my DF in April. It was just a bit uncomfortable at first--enough to make me nervous and stick with short rides close to home. It was actually like that for several weeks. By June I was feeling pretty good, but I was thrown from my bike when I hit a raccoon at the bottom of a hill. I didn't even leak, but I felt pretty dinged up for the next several weeks. In August I did a 90 mile ride, but mostly I didn't ride a lot the first year. I got in some longer tours this past summer. Still not nearly enough, but it's good to be able to do it. No 82 MPH for me, though. 82 MPday, tops, and that's starting early and ending late. Say, about your geocaching, did you put your catheter in one of those boxes? And your other post-surgery paraphernalia in others? JohnG I had a great time BURNING the catheter :) I put little american flag pins in geocaches... > > I have recovered pretty well. There have been some changes and some > > lingering side effects but all in all I feel great and enjoy life with a new [quoted text clipped - 26 lines] > > JohnG > Hi All, Hey John, greetings from another "Bent" rider. Catheter out on the 22nd day post-op. Back on the bike on the 27th day. Have 806 miles on the "Bent" since RRP. Gave up pads on the 85th day, no problem leakage since. "Bent" riding great exercise, no pain the former home of my SOB of a prostrate. Most of my riding is on the Western Maryland Rail Trail, Hancock, Md. PSA 07-01-03 6.0 @ 64 Biopsy 08-14-03 G6 3+3 T1c RRP 10-14-03 G6 3+3 PSA 01-05-04 Undetectable Jerry |
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