Open Surgery Three Weeks Ago...

I had the open prostate nerve-sparing surgery just three weeks ago.  I did not require blood and my healing has been almost routine.  The post pathology was "No more cancer".  Of course, that is good news. 

 

I chose the open radical nerve-sparing surgery because it was the only surgery available in this smaller town.  I could have chosen a larger city, but the closest would have been 150 miles away.  In reading posts on this forum, it seems that none of you on this forum (I discovered it just today so I may have missed something) has had the open surgery like I did.  That is a little scarry for me (I know.  It's too late to re-evaluate and make a different choice.). 

 

Here are some areas in which I need comments.

 

(1) I encountered a problem with the catheter that I have found absolutely no one else whom I spoke with experienced:  Urine leaked out around the tube, even before I left the hospital.  I talked to the doctor's nurse and she in turn talked to him ; he did not think it was a problem.  It sure was hard to deal with, however.  I was totally unprepared for the degree of incontinence following removal of the catheter.  I expected some dribbling, but I had no idea that I would have absolutely no control.  That "freaked me out."  I have learned to deal with it better now, but that was a shocker.  I understand that it is to get better with Kegal and time, but for now I am still very concerned (I see from other posts that I am very impatient, to say the least...three weeks?)

(2) The surgeon (not at all very talkative) handed me a device when he pulled the cath out.  It was a clamp which was to go on my penis!  I have not read of anything like that from any of you today on these posts.  Has anyone else used one of these things?  It does work for about 30 minutes and then begins leaking through it.  Beside that, it hurts.  I also had some bleeding and I think it was the result of the clamp.  It quit when I took it off.  Anyway, I've decided not to use it any longer unless some of you can give me some encouragement and some first-hand positive experience with it.  Today I started simply using pads, and it looks as if it will take 8 or 9 per day currently.  That's a lot of changing, but I can deal with that better than a clamp.  And while on the subject, I wanted to mention that I am uncircumcised.  That keeps everything very wet , and sometimes I experience stinging.  The surgeon said not to pull the foreskin back but to leave it in place "because it could cause some serious problems if you do."  That's something I had never heard before either.  I wonder what kind of problems?  He didn't hang around to explain himself and I was too overwhelmed to ask at that moment.  I thought by pulling the foreskin back that I could stay dryer.

 

(3) We were prepared for the erectile dysfunction thing, as devastating as it was to us.  But we are motivated to overcome that in time, although the doctor said nothing about Viagra, etc.  I did ask for "nerve sparing".  Afterward, he did say that he was able to spare the nerves.

 

Thanks to any of you who can give some insight into these things.  Now that I have found this forum, I will probably be back with more questions.  Of course some have already been answered just by reading your posts.

 

Hi ~ Gene6163    & Loved Ones,     Caring Enough to Share…..                   A    “Special”   Warm Welcome   to   You!         This is truly a great forum!!! ~ You have joined! You are now part our forum family ~ a group of wonderful individuals who are so willing to share their journey .   Thank you for joining all of us in the continued road to HealingWell…..   KNOWLEDGE IS POWER... and POWER conquers fear   Your thread: open Surgery Three Weeks Ago...   is a wonderful gift you've given to all of us.     This is so important ~ once the decision is made continue to move forward in a positive manner.   Your journey is testament to this.   We can’t tell you enough…. How happy we are that you Cared Enough to Share…. Thank you from deep within our hearts.     Our thoughts and prayers will be with you as you continue to move forward in Your Journey.   In Friendship ~ Lee & Buddy   “God Bless You”   It's a little prayer   ~   "God Bless You" ...but it means so much each day, It means may angels guard you and guide you on your  way     (Direct Link ~ just click on the title below and a new window will open!   Reminder … click on the REFRESH icon once you get there) Helpful Hints for New Members... Hope this helps you! :)  

Hi ~ Gene,   Yes….    The sound of “Cancer Free”…. is definitely music to our ears… and moving forward to your 1 st PSA will be here before you know it.   There are so many wonderful Threads for you to check out.   There are a few listed on the Helpful Hints page…. listed in my 1 st posting to you.   I will be updating it with more over the next week.   We had the RRP and there are many on this forum who have.   And everything you’ve talked about is here somewhere.   I think the Helpful Hints page may get you started… We went the extra in all areas of healing… and recovery.   To this day ~ 11 months post surgery… we still pay close attention to Buddy’s body.   It will tell you if you are overdoing it.     The most important thing we can share with you is… continue kegels, continue exercising with some stairs if/when possible, and give your body the right amount of time to heal and recover.   3 weeks…. Yep…. More time is needed and you must give it the proper time to heal.   Feeling good lends to more activity and more activity adds pressure to the healing area.   Continue taking one-day*step-at-a-time and remain “confident” for future PSA testing.     There are several Threads here on incontinent issues and even how to have sex while leaking!!!   We are a wonderful forum with a true honest openness that will help in any situation.   All you have to do is ask…. Just like you’ve done here on the Thread!!!!   You get a Huge   HUG....f or joining us!!!!!   I can’t wait to hear what Swimom has to say about this doctor…. She is the best and you will really enjoy her knowledge and her experiences with almost everything we’ve dealt with on this forum… So ~ pay close attention to what she says…   I’m thinking she may be posting as I’m posting…..   This clamp is not a good idea in our opinion….. unless there’s more to it… But ~ your doctor leaves me wanting to get in his face.   You should not be left guessing or wondering what’s going on.      In your research did you read anything by Dr. Walsh or Dr. Scardino????   I’m glad to see that ED is #3 where it should be and that your (spouse/partner) is right there with you!!!!!   Good for her!   It is a journey that definitely needs to be a “team” and it’s good to see her support is right there with you….…. ED is a very important part of Your Journey but getting the cancer out and urinary continence is definitely #1 & #2….     You sound very confident and positive…. With a few issues that you’ll find others have dealt with and have shared their experiences....      Don’t ever forget……   Your Decision is Your Decision!! and Your Decision was the Right Decision for You!!!!!     We are thrilled that you found us!!!   S tay with us and let us walk with you as you continue on the healing/recovery stone in your journey. Keeping you close in thoughts and prayers.   In New Friendship ~ Lee & Buddy  

Gene6163, Jeff also had open surgery (RRP) and is recovering nicely. ED is still an issue, but we're hopeful that it will come back eventually. keep doing those kegels, start taking viagra (or cialis or levitra) mainly for healing reasons (not erections), and if you don't like the doctor's responses, you're going to have to take a trip and see a different doctor. congrats on being cancer free! that is the main point of your original decision. don't lose sight of that. take care, kat

Gene, sounds like you are a victim of the "managed care" system which does not reward docs for followup care, although my "name" physician at Hopkins answered every question even thought my HMO paid a flat fee.  And he provided a multi-page handout with specific instructions to follow.  Leakage with the cath is common as well as using lots of pads.  The time it takes to recover continence depends on the surgeon, I guess.  I was fully continent in less than 2 months.  ED is another story.   I went to the shots to get things started, why wait 6 months before having sex?  The Viagra may not work right away and anyway the side effects are unpleasant, and I am not comfortable with the long-term effects (unknown) if I live 10-20 yrs.  Don't want to be walking around in a blue haze.

 

Best to you.

 

Allan

Post Edited (Allan92) : 3/7/2007 4:16:59 PM (GMT-7)

All you you have helped bring me back down to reality. I've got to admit that I quit pushing water because of all the mess. I am walking, doing Kegal, and now (at least starting in the morning, I'm going back to 6-8 glasses of H20 each day. I will be journaling, too... plus, I will take the wife with me when I go back (he does not want to see me for three months) for the PSA. I have been bragging on all of you to all my friends. This is a great site for help. I'll be back in touch in time.

Gene

Gene

I had RRP also on Feb 5th and had slight leakage at times around the cathetor after I got home from the hospital. I also had a clogged cathetor that built up some incredible pain in my bladder that had to be flushed out (Lots of dry blood- clots). I am down to only a slight bit of stress incontinence - pad free for the past 2 weeks. I have been back at work for the past 2 weeks and have also been taking the time to do some walking every day. ( My dog is espicially thanful for this)

As you can tell frrom the people on these board, all people are different and you must have patience. There is a lot of good info and things to be learned from this forum. I have found that you can usually answer most of your questions by reading previous posts, and if all else fails post a new topic.

Good luck with your recovery

Tooyoung

YUP. I started limp and am approaching a full one now. Takes a bit of work but it gets near the way it was. Surgery 4 weeks this Friday. Nearly full continance as well. Rare leaking when laghing too hard or drinking a beer.

Tony

Hey Gene,

Great progress!! Congratulations. We all really like good news...

Jim

Gene,

Like KW, I had leakage around the catheter ... for all 2 weeks that it was in. It ran constantly anytime other than when I was lying down. I tried everything, including taping sponge around the catheter tube, and wearing loose shorts with small towels held in with elastic bands aroudn my legs that I changed every waking hour. It was very inconvenient. In hospital, they tried reducing the volume of fluid in the catheter balloon, and then increasing the volume in the balloon, but neither made a difference. I was then given anti-spasm pills called Ditropan, which did not do a thing. I have read that the wrong size catheter can result in excessive leakage, and my guess is that this was the cause of it.

Thankfully, all things come to an end, and one my my happiest days was when the catheter came out. All I have to do now is become continent, and no real progress has been made in this respect in the 7 weeks since it was removed. I'm still using 6-7 pads a day. I often wonder whether my slower than normal recovery of continence is related to the leaking catheter. I still have a UTI (now 7 weeks despite antibiotics - Citrobacter, a hospital acquired bug), and my urologist feels that is delaying my progress towards continence.

On the subject of the foreskin, failure to return it to its normal position results in significant swelling, which I found out the day after my surgery. My doctor recognised this and corrected the situation quickly.

Just had a couple of successes in the erection department. I had been preoccupied with the incontinence issue and had not worried too much about ED. I was surprised to feel and then see some unexpected enlargement the other evening while watching TV. It just happened, and with some work, resulted in an erection around 60% of normal, followed by orgasm. Tried it again a couple of days later to make sure it was not a fluke, and sure enough, another success.

Hey Gene,

Progress is the name of the game post-op. Sometimes it comes fast and sometimes it seems like its taking forever. You are keeping track of the small victories and that is important.

You said, "The important thing is to get the cancer out." and that is surely true. Keep up the good work and please keep us posted.

Your friend,

Jim

I am so appreciative of the direct posts in here.  I check in with B after the day is done to find out the skinny on pee, etc!  He used the small, penis covering pads today (remember I said in previous posts no pad needed!) because of stress incontinence. Now that he is more active, and back at work for the last week and a half, he is noticing it more and wants the assurance of a pad.  He says he's doing the kegels... It is great to track those of you a few weeks beyond the surgery...thank you for keeping us updated.  It has been a comfort to me. Becky