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Medical Forum / Diseases and Disorders / Prostate Cancer / April 2005Finally!
In what may sound like an Oscar speech, I want to thank everyone here who was so kind to me and who helped me through this RP. I'll never forget it...nor can I ever repay it. Now the story: I'm 56, dx on Feb 8th, with a PSA of 7.2 (my first ever) and a Gleason of 7=3+4 I decided and had an open (full cutting) RRP by Dr. William Catalona at Northwestern Memorial Hospital here in Chicago on Monday March 21st. You listened and helped me as I whined and cried about my fears...the biggest of which was the fear of being put to sleep cuz I was afraid I wouldn't wake up. The whole "saying goodbye" and "counting backwards" thing scared me...seemingly more than the deadly PC. I went in on March 21st and had to stay for a full 7 days due to a "bleeder" of some sort which kept clogging my cath adding to the gas and spasm pains. It would clog up to 5 times a day and in minutes of a clog...the pain was intense. So they took to irrigating the cath 4 times a day...regularly. They used a liter (about a pint) of saline each time. Each time...it was just clots, clots, clots. They would get it perfectly clear and in maybe 40 minutes...it could clog again. They said that this happens to less than 10% of the people and sent me for a CT scan after a few days to see what's up. CT scan showed nothing wrong...out of the ordinary. To his credit...Dr. Catalona didn't bat an eye and said that it was a ball of clots which, with constant irrigation and the enzymes in the urine would eventually get rid of it. I said..."might this be weeks?" and he said..."No...days, and you'll stay 'til it's clear." It turned out to be so...that after 6 days...it was clear and I came home Monday night. I barely slept for an hour a night due to the pain. Funny...I DID sleep during the entire second half of the Illinois NCAA game and missed the amazing comeback. I'm an Illinois grad but no matter, this was most important, to be sure. So I came home tired...from no sleep...and a week of problems and then had some pain due to the cath shifting. I trussed it up on Tues and Wednesday with athletic tape and still slept little cuz it hurt the penis when I moved. I finally got it in a good place and tomorrow morning I'm due to have the cath removed...so that's good. The continence issue is up next but I'm bringin' a Depends to be safe. Other GOOD stuff... I got through the hospital stuff cuz on the 2nd night...Dr. Catalona brought in the final Path Report (quick, no?) and read it to me. He didn't use the words "we got it all" or "you're cured" but... The lymph nodes were clean, the margins were free of cancer, the tumor was in 10% of the 35 gram gland and the Gleason went to 3+3, primary and secondary it says) and tertiary is 4. I have a copy of the 3 page report. I have only one seminal vesicle (who knew? :-) Dr. C said this was good news and he felt that no further treatment would be needed. That was so good to hear, so soon after surgery that the other stuff was a painful bother (bled for 6 days) but I could deal with it. I'm very grateful. Another good thing about staying that long in the hospital was that I went through the gas and bloat and the first bowel movement THERE and could move a little better when I got home. I moved TOO good and jiggled the cath. You guys who came home in 3 days are real troopers. I said that if I was at home...and felt as bad as I did on day 3...I would GO to the hospital. I learned that insurance plays a big part in the current 3 day standard. It's like women having babies. our moms stayed in a week or more and now...some HMO deals give the lady one day. Yikes. The biggest question...the fear of being put to sleep. The OR prep team was amazing. I was in a cubicle with my girlfriend and at least 6 folks kept popping in every second. Firing questions, slamming on the anti-embolism stockings, starting IV's...and NEVER saying "here we go" or "say goodbye". The anesthesiologist (young guy with curly hair who seemed like a comic) came in and said "what's goin' on?" I said I'm afraid of not waking up. He didn't hold my hand or anything but just kept looking at a chart and then looked up and said..."I got stuff to do this afternoon so THAT'S not gonna happen." Smart guy. They didn't say "here's something to relax you or anything. I wasn't moved and there was activity all around me that I was watching and the next thing I know...I was waking up. They apparently snuck up on me. :-) I don't know if they do that to everyone, but they did it to me. So that's it. I thank you again for your many kindnesses. I know this is long but I didn't want you folks to think that I had just left. If I missed anything...just ask. I'll be here. I'm sure I'll feel better when I have the cath out and can turn and sleep. I'm 11 days short on shut-eye. But that's OK :-) Best to all, Ron B. Chicago Ron, Glad to hear the good news (path report). Sorry about the clots, etc. We all seem to have one or two hiccups to share around the campfire. Sounds like you're on your way to recovery. You'll think you're a new man when that catheter comes out. For now, get plenty of rest...you need and deserve it. Good to have you back.  SignatureJerryW jweindel at flash dot net 2/11/04 PSA 2.6, Suspicious DRE (age 62) 2/23/04 Biopsy: Gleason 3+4=7, T2a, left lobe 5/18/04 RRP, Path: Gleason 4+3=7, T2c, both lobes 7/13/04 PSA <0.1 10/12/04 PSA <0.1 1/18/05 PSA <0.1 > In what may sound like an Oscar speech, I want to thank everyone here > who was so kind to me and who helped me through this RP. > <snip> Ron, What a hassle. I guess all us surgery guys see some clots, but you deserve some sort of prize for the most. Anyway, the predictive stats were right, and for your trouble you're free of a potentially dangerous cancer. Congratulations! jimhoney Congrats, Ron and welcome back. You are gonna be fine, I believe. Too bad about the clots. Never heard of that before. Rest for awhile, and then exercise by walking. Dave Wow, your stay at NWU Hospital made mine look like a tea party! Eat some ice cream, it helped my recovery, and do watch the game this Saturday, this one should be even more of a cliffhanger! Go Illini! > In what may sound like an Oscar speech, I want to thank everyone here > who was so kind to me and who helped me through this RP. [quoted text clipped - 75 lines] > was in 10% of the 35 gram gland and the Gleason went to 3+3, primary and > secondary it says) and tertiary is 4. With a report like that, most authorities agree that your chances of being PSA free at 10 years are over 90 percent, perhaps as high as the high 90s. > I have a copy of the 3 page report. > [quoted text clipped - 29 lines] > > The biggest question...the fear of being put to sleep. The likelihood of not waking up these days is something like one in 200,000, and it is probably better than that at Northwestern Memorial Hospital. I think your chances of being killed in an auto accident are higher. > The OR prep team was amazing. > [quoted text clipped - 19 lines] > I wasn't moved and there was activity all around me that I was watching > and the next thing I know...I was waking up. That is the way it always is. The drugs they give you induce amnesia about the events just before you go to sleep. > They apparently snuck up on me. :-) > [quoted text clipped - 15 lines] > > I'm 11 days short on shut-eye. Star walking, a short distance at first, but build up your distance without tiring yourself too much. that will help speed your recovery. I'm sure you were instructed before you left the hospital to walk and not to sit too long with your legs down. The most serious complication you have to worry about at this stage is a blood clot in a leg. But that is completely avoidable if you follow instructions. > But that's OK :-) Good luck and let us know how you are doing. > Best to all, > > Ron B. > > Chicago Ron, Congrats on having the big one behind you. Mine was four months ago. Sorry to hear of the irrigation, but be glad it's now a memory. Those kinds of memories really do fade fast. I was born and raised in the Windy City (west and northwest sides), but Houston's been home for the past 25 years. I spent part of my Army Reserve duty at Northwestern in the early '70s as a lab tech. John age 52 PSA 114, Gleason 3+4 RRP 12/1/04 Ron, Congrats on having the big one behind you. Mine was four months ago. Sorry to hear of the irrigation, but be glad it's now a memory. Those kinds of memories really do fade fast. I was born and raised in the Windy City (west and northwest sides), but Houston's been home for the past 25 years. I spent part of my Army Reserve duty at Northwestern in the early '70s as a lab tech. John age 52 PSA 114, Gleason 3+4 RRP 12/1/04 Yeh, we all have differences. I went home in two days but with a pineapple drain as well as a cath. I wanted to stay in but the insurnance wouldn't pay. It took a full week before the pineapple stopped collecting blood and that tube was removed. It took almost two weeks for the urine to clear up and I had a few clots (but no pain). Incontinence cleared up within 6 weeks. Next (early May) is the first post op PSA... hey good luck. I had the same trouble after my biopsy, spent three days in hospital with irrigation. I had my first dry night last nite. yay. Ken > Yeh, we all have differences. I went home in two days but with a > pineapple drain as well as a cath. I wanted to stay in but the [quoted text clipped - 4 lines] > > Next (early May) is the first post op PSA... Ken, Do you really mean you had the same problem after your biopsy? Or do you mean after your RRP? jimhoney > hey good luck. I had the same trouble after my biopsy, spent three days in > hospital with irrigation. I had my first dry night last nite. yay. [quoted text clipped - 8 lines] >> >>Next (early May) is the first post op PSA... after my biopsy. I also had some stones removed from my bladder at the same time. bled for three days. irrigated every 2 to 4 hours. They sent me home after the biopsy and I was back to the emergency room in 4 hours, no urine just bright red blood. eventually installed a cath and sent me home again. next morning cath plugged up, back to emergenc. Uro spent a good hour flushing and then admitted me. No fun. Ken > Ken, > [quoted text clipped - 15 lines] > >> > >>Next (early May) is the first post op PSA... OK then. Dan41, this means you shouldn't worry that what happened to Ken will happen to you. jimhoney > after my biopsy. I also had some stones removed from my bladder at the same > time. bled for three days. irrigated every 2 to 4 hours. They sent me home [quoted text clipped - 26 lines] >>>> >>>>Next (early May) is the first post op PSA... Ron B, Welcome back. I'm happy to hear you had good path results. Enjoy your " vacation". Steve U Ron B, Welcome back. I'm happy to hear you had good path results. Enjoy your " vacation". Steve U ... > Now the story: ... That was a great report Ron. Useful detail there for everyone wondering about surgery. You had a tougher time than some, but all in all, it sounds like it worked out well. Good luck. Alan >In what may sound like an Oscar speech, I want to thank everyone here >who was so kind to me and who helped me through this RP. > >I'll never forget it...nor can I ever repay it. I'd very much like to agree, that this group is an amazing resource. It was and is extremely helpful to me to hear from those that been there and done that. I also very much appreciate everyone's help too. It is education, and reassurance, and it takes away the mystery. It helps so much in getting through this. It is a pretty big experience. >I went in on March 21st and had to stay for a full 7 days due to a >"bleeder" of some sort which kept clogging my cath adding to the gas and >spasm pains. Ron, that was a spooky story, and its really good to hear you're doing well now. I really appreciated hearing your story, since my RRP surgery was Tuesday 29th. I didnt have much trouble, except a bit of fever did keep me in the hospital the 4th day. None of it was fun, but its going really well now after getting home yesterday afternoon. >I barely slept for an hour a night due to the pain. I remember checking the clock every ten minutes all night too, but I really had no pain. I think the leg pumps were a big factor in sleeping. Coughs or quick movements were tough, but just laying there was no problem. I never could tell that the pain killer button had any effect at all, but I think I just didnt have pain to know the difference. No clue why not. When they removed all the tubes the 3rd day, they wanted to give me pain pills then, but I refused them, no need. It's really amazing how quickly it no longer matters who wants to lift the gown and check out things down there. >So I came home tired...from no sleep...and a week of problems and then >had some pain due to the cath shifting. I was hoping someone could comment about the proper art and craft of fastening catheters. What is the best way to keep one from shifting and pulling? The real problem is that no amount of slack is right for all cases. I'm still using an H-shaped tape made with a Velcro tube fastener in the middle, from the hospital. My wife wasnt able to find more of these, so I take it off to shower, and then tape it back on with new tape. Plus an elastic catheter strap too, but it slips, at least it slides down to lodge at that taped H anchor. I've tried Ace bandages over it too, but tape seems to easily beat elastic, so I suspect just wrapping tape around the leg may be the most effective. >Another good thing about staying that long in the hospital was that I >went through the gas and bloat and the first bowel movement THERE and >could move a little better when I got home. Yeah, well, that part could have been better here too. Stomach so tight that the lungs couldnt breath deeply. I think it may have caused the fever. But a suppository in the hospital pretty much immediately cured it, and let me breath much better, and its all fine now. Congratulations on your pathology report, that's the whole point. I dont have mine yet, but the doctor will remove the staples Tuesday or Wednesday, and I told him that was soon enough, no need to call Monday. He said everything went very well, and since it was early detection, I'm hoping for no surprises. The bad news is that he says I will have the catheter a week after that however. It's not really a problem, but it's sure a nuisance. I do fear what comes next however, but it's really good to hear the success stories. >I wasn't moved and there was activity all around me that I was watching >and the next thing I know...I was waking up. > >They apparently snuck up on me. :-) That was a surpise for me too. The anesthesiologist walked in and introduced himself, which I remember clearly, but the next thing I knew I was waking up in the recovery room... the recovery nurse was telling me to cough, but no way I was gonna cough the second time. Thanks Wayne for the comments on my experience. I was gonna write directly to you to offer some help but your addy was invalid. So I'll post and maybe it will help others. The cath was "reaming" the meatus and I was feeling sore. Not bleeding or an open sore but was afraid that it would GET that way. We bought some Ace Sports Tape used for wrapping ankles etc. I wrapped it everyway to sunday to make the cath feel a little better. Around my leg, up my chest, ANYWHERE to try and keep the cath from shifting. It was so sore that I didn't sleep at night much. I got to where I would HOLD the cath straight out at about the 3 inch mark so it wouldn't move. I lubed like crazy with bacitracin but the damage was already done. In my minds eye...i wanted a mesh tube around the penis with the cath held dead center. All I'm saying is to do anything you can 'tape-wise' to make it work. I had tape hanging off of me like a mummy trying to make it OK. I didn't care. The day (Friay) when the cath came out was a great one. The nurse said that nobody ever misses THAT appointment. :-) I brought a Depends wth me and put it right on to go home (about a 20 minute ride) I had read about leaking etc., but I didn't figure to keep filling diapers right away (5 the first day) and have no feeling that the bladder was filling. I asked in the group and found that the bladder was so beat up that it takes time to heal. Although...some guys are good right from the removal. I then found something on my docs website (Thanks to Curtis) which I had seen before but had forgotten...about incontinence. I'm posting it here: http://www.drcatalona.com/quest/quest_spring03_2.htm All the best to everyone, Ron B. Chicago GREAT + ENCOURAGING READING THANKS REUBEN >Thanks Wayne for the comments on my experience. > [quoted text clipped - 60 lines] > >Chicago That sounds really painful Ron. I hope all of that pain part is over for you now. I'm not having any major problem with catheter irritation, only minor tugging issues when I move around. Lubing it helps, so I can always forget about it for several minutes at a time. But it's early yet, and certainly it is easy to imagine it becoming a big problem. Big mental strain :) It's going quite well for me now. It was harder than expected in the hospital, but easier than expected at home. Things are quickly getting better. I've been home about 36 hours, and I discover that I can even cough pretty well today with only minor inconvenience. I was on my wifes treadmill yesterday a couple of times, and it was easy too. The only real concern was about overdoing it, but there seemed to be no problem. There are several Depend garments described on their web site. My assumption is that the "Fitted Brief Maximum Protection" model is right at first, and I assume what is meant by "pads" is the Guards for Men. I'm in too big a hurry to know all the details and plan it out, but I suspect it will all become clear as I need to know it. My plan is that the incontinance wont be a big problem, at least for long. I sure hope I can pull it off. :) The really good thing about all this for both of us is the idea that the most possible was done to cure the cancer the most. I dont have my report yet to actually know, so I'm still willing it so, but so far, everything does seem to be going really well. I think its worth it. Now I'm confused. Are you talking incontinence or impotence? ;-) I.P. > My plan is that the > incontinance wont be a big problem . . . . > I sure hope I can pull it off. :) No, it was a straight line. Both are concerns, but one thing at a time, first things first. :) Hi Ron: You repay it by helping the next guy. Take care. David S. > In what may sound like an Oscar speech, I want to thank everyone here > who was so kind to me and who helped me through this RP. > > I'll never forget it...nor can I ever repay it. |
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