Prostectomy and Progress and Setbacks - Advanced Prostate...

Advanced Prostate Cancer
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Prostectomy and Progress and Setbacks

EricE
EricE
40 Replies

i had my prostate and seminal vesicle removed on April 12. I'm now a walking urine dispenser. This is the toughest symptom I've encountered thus far and there is more of my moral in the toilet than urine. The urine seems to dribble out when I am standing and spurts out when I sit or stand or roll over. I have very little feeling of urgency and I used 4 pads yesterday. When I do use the toilet I have to sit, and urine just comes out all over my balls. Now I bounce between either using a bunch of pads or dehydrating myself. No fun.

This was not the nerve-sparing surgery. There was too much cancer entwined on my vesicle. The surgery went well and the doctor also repaired two inguinal hernias he found. I I had a great deal of pain after the surgery but it resolved quickly. The catheter came out last Friday so I'm only 4 days out.

I hear it gets better but I can't help wondering if I am part of the small percentage for whom multiple diapers/pads will always be needed.

I just bought a new kilt for bagpiping and I'm not too sure how that's going to work with my dribbling member. I can't even contemplate playing the pipes yet and won't for another 7 weeks.

Now that the prostate is out, they got a good look at an 8 mm area of cancer on the mouth of my bladder. The next step is to let my talented young radiologist shoot it. I trust him.

What do you guys think? Will the incontinence really get better given what I've experienced so far? I'm scared and worried that I'll start isolating myself from the world out of shame.

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Emak1

I had my RP in August 2016. First 3 weeks 6-8 pass a day. Very frustrating. Did kiegel excercises and went for biofeedback. Next 3 weeks it incremental got better. By end of October I was traveling between NJ and CA without any issues

How are you at night? I was pretty dry. Just during day it sucked

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EricE
EricE
in reply to Emak1

I have been dry most nights. Yesterday I had two cups of coffee and some salty pizza and I woke up to a wet pad. Other than that I've been dry at night. Thanks Emak1!

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Emak1
Emak1
in reply to EricE

Dry at night is good sign. Coffee. Per my dr I cut that out for 6 weeks. Sucked cause I love coffee. But it will make you go

Hang in there. You’ll get better. Everything about this stupid disease is humiliating. Peeing in pads. Bedroom performance. Etc. but it did improve for me over time.

The leakage stopped suddenly was on 2-3 pads a day then over a few days went to zero. Do the kiegels :)

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EricE
EricE
in reply to Emak1

Will do. I find it interesting how this disease seems to know exactly the things that make us "men". I tell people my testosterone is the first thing that walks into the room before me. Without it, I feel deflated. Perhaps I needed a little deflation to understand how to be genuine. I don't know. I'm trying to roll with it. I'll be patient and courageous. I is a promise I made to myself. Thanks!

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Lulu700
Lulu700
in reply to EricE

It’s Ms.pac-man munching our manhood for breakfast. You should gain control I disintegrated do RP so I’m not the guy in the know. I do know that with time and being good to yourself the body wants to recover. You’re in the thick of it. It will get better. Rest , eat, and think of anything beside freaking PC...

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toml77
toml77
in reply to EricE

Might help to ease off on the coffee/tea/beer until control is regained.

Tom

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EricE
EricE
in reply to toml77

I love coffee but not for a while. I need to normalize my flow as much as possible. Thanks.

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Lulu700
Lulu700
in reply to toml77

All of that.

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Lulu700
Lulu700
in reply to EricE

I quit coffeee .Too tuff on my urology ..

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Dad1963

I’m 3 months out same procedure. I go through 2 pads a day on average and mostly dry at night. Lots of lifting and bending at work so increased leaking. Wet balls suck!

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EricE
EricE
in reply to Dad1963

Yeah. Every time I feel that warm flow, it just makes me mad! Grrr. I'm an IT guy and I am up and down from my desk 100 times a day. I can't contemplate going back yet but the clock is ticking. I'm trying to relax about it and realize that I've been through a major surgery. Perhaps if there is a lesson for me to learn here is that life has to slow down a little, something I would not acknowledge on my own. Wet balls do suck. Well said.

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Lulu700
Lulu700
in reply to EricE

I had the opposite problem. I could not pee at all. Peeing is life. P is the funniest letter in our alphabet. Until we have an issue. I pray conditions improve and that you do what youve got to do........ we will adjust to survive. I think things will get better for you in time. Hang in big guy! Those bag-pipes are waiting for you

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spinosa

Seems rather soon to have removed the catheter. Mine stay in for almost 8 weeks... only had "stress" incontinence afterward...

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EricE

hmm. The info packet from my doctor said that usually folks stay on the cath for a week. I was SO glad to have it out. I would have done the 8 weeks if he told me to but it would have killed me, that thing was so demoralizing. I'm glad to have lost my golden purse but I hope its not too early.

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greatjohn

good luck...hope you'll be able to "hold it" soon. Though it's different , after hifu I had big problems, but within a couple of months I was good.

John

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YostConner

EricE,

I trust you will improve, but if not, there’s a surgical answer. When I went over six very pads per day, I had an artificial urinary sphincter installed. I stay dry enough now that a kilt would be possible.

Best to you.

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EricE
EricE
in reply to YostConner

Thanks. That's something I had not considered. I will definitely keep that in mind. I'm only 54 and in relatively good shape so I'm hoping once the inflammation goes down my bladder will tighten up. Crossing fingers. I've crossed my fingers so much with this disease I'm thinking of gluing then in that position. :)

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Lulu700
Lulu700
in reply to YostConner

You’re one tough dude! Yost

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mjbach

Yes my husband was on diapers for a month after his Rp. Then he graduated to just daytime diapers. Eventually a smaller pad then none when he thought it was ok.

However, when we downgraded our mattress from a king, out in the sunlight we could see he had been spotting all over the mattress. Apparently in his sleep cause he said he was I innocent of the charge. Lesson learned take the precautions and save the mattress.

His catheter came out within a day or two because there is less risk of infection with sooner than later.

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EricE
EricE
in reply to mjbach

That is encouraging. Good thing our mattress is 10 years old :) Good info about early catheter removal. I was on it for 7 days and it was the longest 7 days I can remember. Thanks for the info.

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whatsinaname
whatsinaname
in reply to EricE

Is a catheter really painful or is it just inconvenient ?? Never had one thus far, so curious to know as I might need one in future.

If it is painful, is it the insertion part that is painful or what ? Thank you.

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Lulu700

It’s just not natural, it’s an exit not an entrance. uncomfortable .If you ever have the experience you will kiss the ground the day it’s taken out. When we read others horror stories we should be thanking god ithat we are not presently suffering too much.

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EricE
EricE
in reply to whatsinaname

Yeah. It's not so much that it hurts. But it sure doesn't feel right. Plus you are tethered to a constant reminder of your illness. Plus it cannot be easily concealed. You feel tethered by your manhood which, indeed you are.

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whatsinaname
whatsinaname
in reply to EricE

Thank you very much Lulu700 and EricE for your replies to my query. I think I got the idea. Thanks again, guys.

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van123

Like you, I had the same issues after my Cather was removed, but worse. For 3 months, when I stood up it would gush soaking the pull-ups and soiling my pants. I couldn't leave the house at all. I would gush all the time. I was using 6 to 8 pull ups a day and changing my clothes 4 to 5 times a day. Finally, in the 4th month it got better. I went from 6 pull-ups to 2 a day after 2 years. I still sit to pee when I can. Slow leaks when I walk or workout at the gym. Just give it time and do the exercises they will give you.

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EricE
EricE
in reply to van123

Thank you Van. This disease takes a great deal of courage and patience, doesn't it. I'll stay optimistic and work those kegals.

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Balsam01

I had RP on 23 Feb 18. Catheter removed 8 days later. Significant leakage at first but it has gotten slowly better. I found a pelvic health clinic that claims it can help men who have undergone RP with incontinence. I have been going for 3 weeks now and I think it is helping. Whenever I feel sorry for myself, I remind myself that it could be worse--I could still have that catheter in--that sobers me up real fast and helps me cope with the leakage.

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EricE
EricE
in reply to Balsam01

Thanks. I have been a very active IT guy. I'm going to need to slow down a little but I'll make it work. You are right. The catheter is a sobering reminder.

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dave100

I'm surprised that no one has mentioned condom catheters -- they are relatively cheap compared to all those pads and during the day you can monitor the bag to see how you're doing with the continence progress. If you find yourself in an uncertain state when you return to work you might consider this option. Amazon carries all the supplies.

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EricE
EricE
in reply to dave100

That's a really good idea. I'll explore it. I have a couple of weeks before I go back to work but the clock is already ticking. This might be a good option.

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j-o-h-n

j-o-h-n <====<<< ME TOO!

Had a RP and they removed the foley in a week (nurse said that's the only appointment that men never cancel). I was incontinent for about 3 months and slowly went dry. Kiegel exercises before the RP helped. So give it time.

Now fast forward (years later) and had an incompetent urologist place a stent in my urinary tract "so far up" that I had to go to the hospital so she could "dig it out". Well she fxxk up my sphincter and now I am totally incontinent. Leak all the time. I buy my depends by the case.

I am very familiar with "the wet balls syndrome". Been there, is there and have the tee shirt to prove it".

Getting up from a sitting down or lying down causes spillage I'm afraid.

Try changing in an airplane lavatory, no fun, I'm 6'1" and 230 Lbs.

My comments about artificial urinary sphincters is that someone on this forum said his eventually failed and he did not want to go through that operation again. Another post here said his squeaked. My cousin who is a Operating room technician said he's seen where it had to be removed and that the patients flesh had grown around it, making it difficult to remove.

Make sure you have a mat between you and your mattress when you go to bed. Try to keep from drinking liquids before you go to bed.

Yep bending down can be bitch.

But you must stay hydrated.

One more thing "why do we say we gotta take a piss when in reality you really want to leave it?"

Keep on Blowing.

Good Luck and Good Health.

j-o-h-n Wednesday 04/25/2018 2:42 PM EDT

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EricE
EricE
in reply to j-o-h-n

There's got to be a dozen good tips in there. Thank you for your support. I might have to stop drinking liquids a few days before I get on a plane. The lavatory bathroom scenario sounds like a bitch. Thanks also for the good humor.

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kenner

I feel for you, things will get better but don't expect perfection with all that you had done.I was in your boat & had to have an artificial sphincter installed. Wait till things heal after your radiation. don't panic on this . Good Luck & hope everything works well for you

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j-o-h-n

Oops I forgot to mention, like you I had two hernia repairs when I was undergoing the RP.

In the hospital Friday morning out on Monday morning.

Good Luck and Good Health.

j-o-h-n Wednesday 04/25/2018 7:30 PM EDT

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KenDuchek

i Erice.I use external cathaters with a leg bag. Also you can get a clamp. Goggle dribble-stop. They are a hundred bucks for a set of two,and they actualy work.Happy thoughts

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EricE
EricE
in reply to KenDuchek

Interesting. Does the clamp hurt?

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KenDuchek

No ,they are easy and comfortable to wear.happy thoughts

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KenDuchek

They are cheaper on amazon.

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EricE
EricE
in reply to KenDuchek

Found them and I'm going to try them. Thanks!

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Beermaker

Sorry to be late with this. The best I can do is recommend Kegels like crazy. I did them for weeks before my robotic RP, and then again after. I had the catheter removed on schedule which truly was a relief. When I went in form my first Onc/Uro checkup, I had gotten to where I was dry. I think that was 4 weeks. The Dr asked how many pads a day I was using, and when I told him zero, he was quite surprised - and pleased. Kegels are the answer!! I still do them from time to time, over 6 years post-op.

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