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Posted 12/25/2010 11:07 PM (GMT 0)
As I sit here on christmas day as a 48 year old in a diaper, I have come to realize that between not working, no control of my bladder, and probably never getting it up again, And after finding cancer had spread to my seminal vescicals, I would have never had a prostateectomy. Now I have stage 3 cancer and have go through radiation and hormone therapy. Well today I decided that i'm not going to do that. The smell of urine, and the inability to walk, laugh bend or any other normal activity, without feeling that warm stream is not quality of life to me. It is quite simply existing. If you are not the person u were before surgery there is no point in prolonging the inevitable. Just doesn't do it for me.
Posted 12/25/2010 11:34 PM (GMT 0)
Volv, as a new member, there is much we do not know about your situation. When did you have your surgery?
Posted 12/25/2010 11:45 PM (GMT 0)
November 2010. Psa 5.98 and 11 of 12 biops. positive. gleasons 8,9,10.
Posted 12/26/2010 1:05 AM (GMT 0)
There is nothing nice about your situation, most of of here can share parts your experience and a few have had all or more that is on your plate now. Give your self a break, its the "hollow"day season and for a lot of people it is a downer not even considering PCa. Some of these guys here have started off with pre treatment psa's in four figures! and have managed in many cases to have all signs of cancer abate or bring it to a standstill. I am not one of those guys and I am not facing any futher cancer treatment at the moment but I am in the same situation as you in incontinence and impotence, respectively 100% and 0%.
Here is how I have managed the incontinence for the last year. I hated diapers and same for pads so I switched to condom style catheters connected to a leg bag. No sitting in puddle of pee. These things are comfortable, really!. I can say this is the way I dreamed of peeing but it works for me. If that sounds like something you might want to try, either post or send me a pm or email and I will give to info on where to buy this stuff. Nothing I have tried for the impotence has worked.
My long term plan for dealing with these problems is going to happen next month when i have corrective surgery fof both of these conditions.
I don't know how long you are post op but if has been less than six months, almost everyone gets back a goodly part of these lost functions after 3- 6 months especially coupled with physical therapy. It didn't help me but mine is not the norm.
So, give yourself some time and I you can't abide diapers and pads, hook up a catheter and bag. I am sorry you are having a rough go but give it some time, the incontinence and loss of errection CAN be fixed if you are unable to recover these functions.
Ron
Posted 12/26/2010 1:31 AM (GMT 0)
Hi volv,
Sorry you are having such a tough time. I'm a bit surprised if you surgeon didn't recommend not going a surgical rout. With 11 of 12 cores G10 prostate cancer and all. But it's here nor there now.

Volv I am your age but started out here 4 years ago. I had bilateral seminal vesicle invasion. I have had better luck on the urinary control, but the hormone therapy shut me down for 3 years on the ED stuff. But things did get better. We have been able to control the PSA's since surgery and radiation went well, too. As time moves on I do realize that I can develop issues, but so far so good.

I think you will likely get better on the urinary control, it has just been a month since surgery. My motto has been "stay positive". Things do get better with time. Not just the physical healing either. I hope you start feeling better, too. Welcome to HW, you'll find a lot of caring support here...

Tony
Posted 12/26/2010 1:36 AM (GMT 0)
From one Stage 3, pT3bN0MX to another,

The holidays can be a bummer even without dealing with cancer, with stage 3 tossed in I feel your pain. At this time last year I was just diagnosed (G-9 at first) and had no idea what my life was going to hold, Christmas was kind of flat to say the least.

All I can add is you've only been out of surgery a short time (I know it seems like forever) and things should get better. For me, urinary control came slowly but is now 99% with only a drip now and then. ED is much improved and PSA was still <0.04 as of my last test in October.

Stage 3 is NOT a death sentence, and 2 months is NOT enough time to be able to tell what your quality of life is going to be. Give it some time, it may suck now, it may suck for a while, but things most likely will get better.
Posted 12/26/2010 1:59 AM (GMT 0)
Volv, Your borthers that are in the same boat have some real words of wisdome. Agreed holliday season sucks when your not your presurgery self. It is a bumber for sure. Know that we all understand exactly what you are telling us. I can assure you that there are better things down the pipe for you. Your are still in the healing porcess. Knotreel is a friend of mine lives about 40 min. from me. I saw his note to you about willing to talk with you and share his experience with you and possibly give you some tips oh how to deal with all this crap. I never had the dripping problem but the Ed is still a fight for me after 2 years post surgery but there are ways to get Jr to do some work for me. Willing to tell you if you want to know as well. Chin up buddy we will all help you through this dark time.

Cajun Jeff
Posted 12/26/2010 2:52 AM (GMT 0)
Hey Pal,

Move over! You're sitting in my wet spot!

I had my DaVinci job done on July 2009 when I was 56. I've been hauling around a load of pee between my legs for 16 months. I have not had a natural erection since then. With all the money I've force fed into my wiener though pee pad and med purchases, you'd think it would at least respect me in the morning. What do I get for the effort? Clear my throat and it dribbles warm pee over my balls and into the pants.

So what's the upside?
I'm on the top side of the snow. I have sling surgery scheduled for 1/10 that gives me a 50% chance of reducing the cash I send to pay for Kimberly Clarke's CEO's daughter's pony's gourmet hay.
I'm still titrating my Trimix and, with the right size dose, supposedly I'll be able to perform like a p*rn star. (There are several single guys here about your age that have mastered the art if inject and go without theri partners knowing. I'm not there yet, but there's hope.
I'll never squirt again but to be honest, I don't think there's a woman on the planet that actually likes that part. I can have sex without the mess - except for that little issue of the pee.
My PSA was 23 when I started. Now it's <0.01. That means I'll have a chance of seeing grandkids (if my kids ever get off their butts, move out and get married. Isn't 30 little old to be sleeping in the same bedroom they had their cribs? They'd better get busy. ) I still enjoy the work I do. I still have cash in the bank and can help people. I am not in pain. I can eat what I want. Life is good.

I won't disagree with you - you got a raw deal:
You're in the peak depression season - the winter solstice with all the darkness and cheer (happy fa-la-la.); You've been told you have Gleason 8,9,10; And worst of all - You found this HealingWell site because you needed it. Cr*p man! No wonder you're depressed! It shows you're normal!

Give it a chance. Stick around a bit and get educated. There are some great guys in the same position as you and they really have their act together. I can tell by your writing you're a smart guy. You'll get your head on straight, too. I figure another 2 months should do it. Wanna bet?
If you need advice about incontinence or just want to blow off steam you can email me, talk on the phone or whatever. I'm in Western NY.

Welcome to HealingWell - the club no one wants to join.

Jeff (the leaking one)

Post Edited (Worried Guy) : 12/25/2010 7:59:11 PM (GMT-7)

Posted 12/26/2010 3:51 AM (GMT 0)
Volv,
I cant add a thing to what has been shared. You have really hit it lucky finding these guys that have posted above me... some of the most respected and knowledgeable prostate cancer warriors around.
May you also find some peace.

Hero
Posted 12/26/2010 4:07 AM (GMT 0)
Volv,

I can't add much other than to say last year I was in the same puddle (not a joke there).

I was a G 4+5 after surgery (Oct '09), age 56, and knew radiation was just a few weeks out.

Christmas Day I had to make three pee runs and a pad change before we got through the stockings. I was at a Depends plus 7-8 pads a day.

It sucked big time. I'm better now, a yeat + out, but nothing is the same. There is a "new normal" for me. I understand I'll not be the "same" again, but I expected things would change, not as much as they have, but...

Good news today - I only got soaked washing pots and pans, and only two pads today. For once it was dishwater, not pee confused .

Hang in there. Seriously.

 

Posted 12/26/2010 2:04 PM (GMT 0)
Hey Volv,

You've already been given a lot of good advice.  You are facing a rough period, one rougher than anything I have faced.  I have anxiety problems and little stuff can send me into the pits.  I've gone to psychologists/psychiatrists and they helped alot.

Good luck and best wishes.

Posted 12/26/2010 2:41 PM (GMT 0)
Just reading some of the other guys replies, Worried Guy and others...even brightened up my thoughts. Some of these guys are better than the $200/hr. therapists and it is 'FREE'....very good of them to give of their time around Christmas to one whom surely needs the gift.

Don't know how to add to anything, but find movies, football or something to enjoy....don't listen to the news or especially Political things as that will ruin any smile that one might have had starting. Find a purposeful life amongest this scenario and rise like a Phoenix from the ashes....I know that is easier mentioned than done and was dramatic language...give it try anyway. You may actually be able to assist another guy whom might have it worse right now and hearing it from you directly, should be quite a thing for him to hear. Also, you could skip radiation and do only drug therapies and there are many to chose from and some are much easier to handle...I know as I have done a few different ones, over the 8-9 yrs. now.
Posted 12/26/2010 2:50 PM (GMT 0)
Volv,
I was diagnosed in early Jan. 2009 with Gleason 8 and 9. I had surgery in Feb 09 which confirmed the Gleason 8. the cancer had extended beyond the prostate, both nerve bundles were removed (ED for ever) and used diapers and pads for the first 3 months. Continence started to come back slowly with therapy and Kegels exercises, I'm now 99% dry, one or 2 drops on some days under stress situation and nothing more. Trimix works great for me, one injection and I have an instant erection that lasts 2 hours. I'm not trying to down play your situation, but just letting you know that you are not alone. You can readjust your expectations and make the best of a bad situation. Hang in there brother.
Posted 12/26/2010 4:25 PM (GMT 0)
Volv. You're right, it sucks. I know it sucks. W're all dealing with different degrees of every evolving "it sucks". And you got alot of it!

BUT, dont friggen give up yet!!!! DONT DO IT!

I know you're tougher than that.. the fact you had the balls to right us tells me that. That's alot braver than most men who are lucky enough to not even know what a prostate is.

There may be a time to say "screw it"... but you owe it to yourself to let this play out a bit longer.. not everything is black & white... you could be surprised at a betterment of your situation that hit's you all at once... stages, time, healing...

I just ask that you dont bury yourself yet.. give it some time.. Let the experts see what they can do.. listen to the words of others on this post... let you body try and heal... it may surprise you.

Please Try!

Posted 12/26/2010 5:26 PM (GMT 0)
Volv,
Thank God you found this "brotherhood" in your time of need. As you can see- you will find much comisery, support, wisdom, hope and perspective here. I have sooooooooooo much respect for these guys and the way they handle this "attack on their manhood".
Bear did not have it as bad as you and I know a year seems like an unforseeable time right now -but he has seem some natural healing in both areas at this point.
Just want to add that after a major surgery as you have had it is very common if not expected to have some depression just from the physical aspect let alone the emotional. Your Dr can get you some meds. It only takes a phone call and you don't have to take them forever. Some of us need glasses, some need medicational adjustments.
Can't tell you how grateful I am for the guys and their honesty here. They have been a lifeline for us and although the doctors and books helped --the guys here have been the rock. Hugs to all of you!!
Can't wait to hear your response and see future posts from you in this journey Volv.
CareBear
Posted 12/26/2010 6:27 PM (GMT 0)
Volv,

Trust me, I understand that emotion oh too well(I was 44)....It took me awhile to get rids of pads, etc...and change my outlook...you will get better on several fronts....

Please utilize this forum for getting any kind of info. you need or to just to get support...

Hang in there,

Jerry L.

Posted 12/26/2010 6:48 PM (GMT 0)
We are me in the sane boat. Look at my stats. There is more to life than weaing a diaper or being able to get a hard on. Life is preciuos and I feel we need to do everything we can topreserve it. I know its hard  but what things in life that are good isnt hard. FIGHT ON
Posted 12/26/2010 7:12 PM (GMT 0)
Excellent wisdom from all the brothers here on healing well. Indeed the diagnosis and subsequent treatment and side effects do suck. HOWEVER there is another chapter to the book if you are willing to write it. Certainly you can give up, shut down, and make matters worse, or you can get up get out and make a difference. Your family and friends deserve the best you available. The worst will pass. Surgery was tough, radiation I hated, hormone therapy turned me into a girl for two years BUT it is all temporary. Now I run, bike, swim, operate a foundation, and live life to the fullest. Hang in there my friend it will get better if you allow it to.
I care more than you know as do our other brothers here.
Stay in touch please
peace and love
Dale
Posted 12/26/2010 11:30 PM (GMT 0)
Thanks to all for the pep talks. Doubt I will be doing any further treatments. Have to get past the constant flow. Be good
Posted 12/27/2010 12:00 AM (GMT 0)
Hi Volv,
I used 12 to 15 pads a day after my catheter was removed. I switched to a condom catheter which was surprisingly comfortable. Fifteen months after surgery I was completely continent, I haven't worn a single pad since.

Like you I was stage 3 but my Gleason was only 6. At this time my PSA is undetectable.

The constant flow will probably subside with time as it did for me. Give the condom catheter a try. It works well even when you are very active.

Hang in there my friend,
Bob
Posted 12/27/2010 5:12 AM (GMT 0)
Volv, have you had your first post-op PSA test yet?? Did you think this was going to be EASY?? You came this far, are you going to quit now? There are a dozen ways to deal with the incontinence, have your U-doc go over them with you...You don't have to sit in a puddle..That's YOUR choice.

Yeah, you sure didn't get what you expected did you..So you're VERY disappointed..life can be a female dog at at times, and you may indeed come to point where you are better off kissing the docs goodbye but you aren't there yet...

Followup ADT and radiation are STANDARD for guys like us. Everybody can't be Gleason 6.. Radiation will stop progress on the incontinence front, so you want to postpone that as long as you can..In the meantime HT can suppress your PC while your plumbing heals up and you get a better feel for what's going on..Remember, your surgeon was trying to save your LIFE not your continence..If he missed a little, the R-doc can in many cases clean it up...

Look at my stats..Pretty close to yours, Gleason 9, ++..My surgeon left me with a PSA of 0.9 but at least he spared my continence..It's all a crap shoot...But you can't win if you don't play the game...You're not on short stack yet...
Posted 12/27/2010 1:25 PM (GMT 0)
Volv. I tried to shoot you an e-mail. My e-mail is listed in my profile. Throw me a line. Lets talk.

Cajun jeff
Posted 12/27/2010 2:10 PM (GMT 0)
I agreed with your post, when I was 2-3 months out of surgery. Since then things have improved including my attitude.
There are two one line philosophies that allow me to deal with our situation.
Expect the best but plan for the worst and what will be,will be.
I don't mean to preach, just let you know that others have felt as you have felt.
Although a glass of holiday cheer did create some dribbles, the next days outdoor adventure in the the snow with my granddaughter was more then enough to make it worthwhile.
Posted 12/27/2010 4:19 PM (GMT 0)
You have to crawl before you can walk and walk before you can run. You have to kill the cancer first then deal with the side effects. They will get better you have a huge support group here get your head around things. I'm going to be very blunt and it may get me barred from here but you have two choices. You you can get busy living or you can get busy dyeing. I chose to live.
Posted 12/28/2010 5:56 PM (GMT 0)
Volv
It is hard to add what the other's have so eloquently said, but just know there is light at the end of the tunnel. It's about learning to live with the condition life has given you. In many cases you will find a greater satisfaction and fullfillment when you try and focus on others that are less fortunate...and there are many. This can be difficult at first but the rewards are over whelming. Once you come to grips with your signature, and that doesn't happen over night may I offer as a suggestion you contact the American Cancer Society, The American Red Cross or your church and offer your assistance in helping others get to a Dr. or hospital or grocery store for that matter. There is something wonderful and rewarding about helping others less fortunate that is a healing for the soul. I wish for you the very best in your journey, and know there are many of us sharing this journey with you.
Stay well and blessed
TTaylor
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