How Dry You Are?

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loupdemer
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 11/19/2007 2:33 AM (GMT -7)   
Today I'm eight weeks post-op, and still leaking. I really thought I had a good shot to be one of those who leaked for only a week or so after catheter removal. But that wasn't to be.

Frankly, I'm not coping well. I know, I know… patience. I read over and over again posts offering encouragement to guys in my situation. But I've noticed that the guys offering the encouragement seem to always say they are still using a pad a day, or experiencing at least some stress incontinence.

This in itself has been making me anxious.

Are there any guys out there who were leaking significantly a couple of months after surgery, who are now completely continent? And by continent, I mean, normal. Just like before surgery. No pads, no leaks. Ever.

As for those still incontinent at a year or two or more, like Jefnet, and still managing to keep it together somehow, God bless you guys. You have a special place in my heart, and I suspect, the hearts of many on the forum. After reading so many of your accounts, I realize I don't have anything like your mental toughness.

I can't stand the pads, or the feel of leaking when I'm active, so I've largely stopped being active. I tried returning to teaching, but couldn't make it to the break before the pad (Depends Guards) spilled over and soaked my underwear. This was more than I could take. I've stopped working and I don't like going on walks, as I find the feeling of leaking when I walk extremely unpleasant. I know there are those of you who find it just as unpleasant but suck it up because you believe the walking is good for you. I just don't have that in me.

A couple of months ago I was completely functional and my quality of life was great. I agreed to the surgery on the premise that less than 5% of guys are incontinent for more than a few weeks or a couple of months at most. I realize now the surgeon and my therapist were painting an unrealistically rosy picture. Now, I am sitting in my own piss, and for what? The cancer may be "gone," or it may not -- the tumor was not confined to the prostate (although the margins were negative, thankfully).

Please forgive me for sounding whiny. And believe me, I'm profoundly aware that many have it much much worse than I do. To you guys I apologize especially.

But I'm in a dark place right now. I'm regretting the surgery, and there's no one I can tell this to. My friends and family have been so wonderful and supportive, I can't dump this angst on them. At this point I feel the cancer would ultimately have shortened my life without the surgery, but it may well do that anyway. And now I'm left with a disfunctional body. I feel like I've been taken apart and put back together wrong, and I guess I'm grieving for my normal pre-surgical self.

Well, thanks for reading this far, those who had the patience to do so. I just needed to get this off my chest to somebody.
============================
Positive DRE JAN 2007 at age 47
PSA 2.5
Biposy 21 MAR 2007
Diagnosis 01 APR 2007: 2 of 8 cores positive, Gleason 7 (3+4), stage T2a, focus of perinerual involvement
AUG 2007 PSA 3.3
24 SEP 2007 open Radical Prostatectomy, Bilateral nerve sparing
Surgeon: Dr. Martin Gleave, The Prostate Center at Vancouver General Hospital, Vancouver, Canada
Post-op Day 2 (26 SEP) Home from hospital
Day 6: Bowel movements resume, causing painful bladder spasms, Dr. will not prescribe anti-spasmodic
Day 8: Catheter removed, totally incontinent, began taking Cialis
Day 9: Partial erection
Day 11: Nealy normal erection
Day 12: PATHOLOGY: Negative margins, minor cancerous invasion of periprostatic space
Week 3: Dry when lying or sitting
Week 4: Leakage when standing and walking greatly reduced
Week 4: Suspended taking Cialis. Normal erections on demand. Some urine leakage with orgasm.


norskie
Regular Member


Date Joined Jan 2007
Total Posts : 376
   Posted 11/19/2007 7:30 AM (GMT -7)   
loupdemer

Don't worry about sounding whinny as you say, this is a journey and it does not come quick or easy as many discover that are on this board, we are here becasue we need the support many days too and it helps to talk and get reasuring words. While I have done very good in my opinion it's not the same and now with my last doctor visit at 10 months post surgery I am faced with the fact that I may still have some wild cells left and will need additional treatment but I won't know until the middle of January until my next PSA test. As for leaking I was never too bad a pad or two a day but it was at about 4 months or 16 to 20 weeks post surgery when things kind of came around and I went without pads however for a couple days later it might relapse and come back a little and even today while I feel pretty normal I have days where I don't notice any leaking but I still feel what I like to call high humidity and the shorts are like I sweat, not anything you really notice but yet something there but I can live with that. I do have the problem that sometimes my stream isn't what it used to be and we have been waiting that out to see if it improves and it has but it varies from time to time, this too will be checked in January. While I may face the need for additional treatments I still feel as I am very lucky to even have found out that I had Pc, I could be walking around thinking everythinig is just fine and find out a couple years down the road that it was not, at least I am in the know and addressing the problem to the best of mind and soal, I got it for a reason and I will get through it. I was told early on it would take about a year for hopefully most everything to be as normal as possible and I firmly believe that now as I near the 1 year mark of my surgery in January, but it has also went by fast. Hang in there, keep the hope and the walking and kegels and it will get better and along the way we are here to help as best we can. There are guys on this board that have so much knowledge that I know will respond much better then I, just know that you are in our prayers and here to lend a ear and provide support.

Norskie
norskie
Age 49, PSA 6.22 on 9-26-06
Biopsy 11-01-06, 2 of 13 cores 10% cancer, 2 other cores abnormal Up-dated 20% prostate cancerous
Gleason score 3+3=6 After Pathology report 3+4=7 some agressive 5 cells found
Da Vinci surgery 01-09-07 UW Madison
Pathology Report- cancer 100 % capsual contained 1-18-07
Catheter removed 1-18-07 suffered bladder spasms Catheter reattached 1-18-07
Catheter removed 2nd time 1-24-07
1st Post PSA Blood Test 3-22-07 <.1 Undetectable
2nd Post PSA Blood Test 7/5/07 <.1 Undetectable
3nd Post PSA Blood Test 11-12-07 .2 monitoring
Next Poat PSA Blood Test Scheduled for 1-17-08
Incontenence-Pad free since end of May 07 4 1/2 months post surgery 
ED back to 95% prior to surgery - no medication required.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4461
   Posted 11/19/2007 7:35 AM (GMT -7)   

I won't attempt to tell you to talk you out of your feelings, etc., because that wouldn't take in your present state of mind.  I understand your sense of loss, your anger, and your depression.  There isn't much I can do to make you feel better mentally, but I can offer a couple of maybe concrete solutions.  If you are soaking the Guards, have you tried using a think pad inside them, as another barrier.  I used extra adsorbant pads for a while and they will soak up a lot of liquid.  Maybe this combo would allow you more time to get to the bathroom, and even only have to replace the inner pad.  Also, maybe the Guards aren't what you need- possiblity you would have better results wearing just one of the super-extra adsorbant pads like the Poise or Assurance brand pads.  These are more like a sanitary napkin, but really soaks up lots of liquid. 

Now, this one may get some response from some others, but this is only an option, not a recommendation.  In your  current state of mind, with the sense of failure and ddepression affecting your everyday life so deeply, maybe you need to discuss with your Doctor the possibilty of using a condom catheter.  Look them up on any search engine.  Basically an tight fitting condom with a line attached feeding urine to a collection bag strapped on the thigh.  Normally I wouldn't even mention it, instead recommedning you stay the course, let yourself heal, tell you it's too early to give up, etc.  But if your desperation, disgust, depression and self-blaming is affecting your everyday life so profoundly, then "maybe" you need something that would allow you to find a place to regain your sense of control and improved self image.  The condom catheter is a drastic step, signifying an admission of failure for most people.  Maybe you need it or some other to-be-recommended step to help you regain your confidence.  Others hopefully will have some less drastic alternative. 

I can tell you that I hear of men who, when they regained their continence, did so in a short period of time, seemingly overnight.  I pray this happens for you.

James C.

 

 


Mike A
Regular Member


Date Joined Feb 2007
Total Posts : 213
   Posted 11/19/2007 8:01 AM (GMT -7)   
Loupdemer,
I felt exactly as you did. Regretted the surgery, thought that whatever time I had left would have been better than this. What kept me going was the look on my wife's face whan I told her that, and the positive thought that the cancer was now gone, and I had a fair shot to see my infant grandchldren grow up. Slowly, and I mean over several months, I improved. I got so that I was satisfied with the "baby steps" of progress I was making. They have continued, and while I am not yet fully continent, I am at a point where I am confident someday in the not too distant future, I will be fully dry. At least I have reached a point, where if it never got any better than this, I could cope. I have resumed activities that just a few short months ago, I thought I had given up for good. Jogging, Bicycle riding, golf, softball and bowling.
Recently a friend I grew up with was diagnosed with inoperable PCa. It has spread to his lungs, and kidneys. He is 49. Another friend lost his wife to breast cancer at 51. When I see the anguish those two families are going through, I find it awfully hard to stay depressed with my situation. My point is this. Dont give up! Stay focused on what you need to do to improve your situation, and take special satisfaction on any improvement you see, no matter how small. James is right, there are plenty of options available to help you cope. Ask your Doctor about them. You, and so many others on this site are in my thoughts and prayers every day!
Best,
Mike
June 2005 - Age 53 PSA 4.8 at regular physical
October 2005 - After several rounds of anti-biotics, PSA 5.2 at Urlogist
November 2005 - Biopsy negative
July 2006 - PSA 5.9 at regular Physical
October 2006 - After several more rounds of anti-biotics PSA 8.1
November 2006 - Second biopsy - Positive
December 2006 - Gleason (3+4=7), Tumor T1c, CT Scan and Bone Scan Negative
January 2, 2007 Robotic Prostatectomy, University of Rochester Medical Center - Tumor confined but larger than thought, only one nerve able to be spared. Margins clear.
February 2007 - Three to four pads a day, no erection with viagara.
March 2007 - Down to two pads a day, had first intercourse with Erecaid pump and bands, otherwise still flat tire.
April 2007 - First Post-Surgical PSA 0.02 and a great relief! Down to one pad a day. Still unable to achive erection without pump.
May, 2007 - Still one pad a day, even try a smaller pad on occasion. Slight improvement on the ED.
July, 2007 - Six Month Post-op: PSA 0.04 still Non-Detectable. One small pad/day for a few drops only! No change in ED.
October, 2007 - Nine Month Post-op: PSA back down to 0.02 Non-Detectable...Yay! Almost totally dry! Only slight improvement in ED - Will try injections if not improved by next appointment.
"If patience is a virtue, I feel like the most virtuous guy on the planet!"


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 11/19/2007 9:04 AM (GMT -7)   
Hi there . . . our message is to perservere. At the three months post surgery Bob was still wearing a pad and needing to change it . . . . .not often but still leaking. By 6 months he was mostly dry. Now at 13 1/2 months he never thinks about it . . .is always dry . . . .and never ever gets up at night to go to the bathroom.

It really does occur gradually, in stages, and even when you think "this may be it" (us at 6 months) it still continues to get better. Until just recently when we went out and about it seemed Bob was making frequent trips to a bathroom . . . . now he doesn't thiink of it.

Good luck . . it WILL only get better.

;o) Linda & Bob
Bob (61) - Laproscopic Prostate Removal Sept 27, 2006.
2 of 12 malignant biopsy samples - gleason 3 + 3 = 6.
 
Pathology - cancer completely contained, even a second more aggressive, previously undetected cancer)
PSA UNDETECTABLE Nov 2006, Feb, May, Oct2007.  ONE YEAR!!!! WHOOO HOOOO! 

Bob also has two secondary conditions -- Polycythemia (elevated red & white cells & platelets) and . . Myelofibrosis) -- If anyone has experience with or information on these, please email us.


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 11/19/2007 10:21 AM (GMT -7)   

My father had his surgery on August 31st.  His situation with continence has been almost identical to yours.  If he used the computer I would have thought it was actually him that wrote your post. 

He was SOOO frustrated, that he too stopped engaging in most activities.  Being female, I assumed men's restrooms had waste bins in the stalls....I assumed wrong and didn't realize the frustration of being out and having no where to dispose of the pads.  I can't even imagine how frustrating it has to be.  What I can tell you is that my dad at week 9 went to 1-2 pads a pad (large pads, but still...1-2).  (This is from 4-7 depending on activity level).  It almost happened over night.  Granted, he still has a ways to go and is not where he wants to be, but he is finally seeing drastic improvement.  I hope you will see the same.  At his appointment the doctor informed him that he is right where he should be and was progressing "normal".  I hope your dry days are right around the corner.   

I think it would be great it anyone has any suggestions/tips of how they carried and disposed of their pads while out.  It's somewhat tricky. 


Father's Information
DX July 15, 2007
Age 62 (now 63)
PSA 5.5
Original Gleason 3+4=7 
Post Surgery Gleason- 4+3=7
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin
One positive node
Bone Scan/CT Negative (Sept. 10, 2007)
T3a N1 M0
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
HT to being Nov 07
Radiation soon to follow
 
 


spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 11/19/2007 10:52 AM (GMT -7)   
Hello loupdemer,

I wasn't one of the gifted & tallented ones either; it was 10 week before I was 98% dry. Then I wore a Serenity pad for another 2-3 weeks just in case. After a year and a half+ I can say that I'm dry, but most of all are the "0" PSAs (much more important).

I wish you good luck with your recovery, and a Happy Thanks Giving.

Glen
Diagnosed at age 60
PSA went from 2.2 to 3.8 in 14 months
2 of 14 cores positive at 10%
Gleason 6(3+3), negative DRE, neg. margins
DaVinci surgery on 02/23/06
Last PSA 08/26/07 @ 18 months "0"


loupdemer
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 11/19/2007 12:30 PM (GMT -7)   
Thanks, folks.

Do you know what I mean if I say that one's state of mind can sometimes be like two or more separate trains running on parallel tracks?

My partner, friends and family aren't aware of these feelings of despair, because in my daily life I manage to maintain the hopeful outlook, the awareness that eight weeks post-op is still early days, the faithful performance of kegels.

It's just the other train running on the next track over that's carrying all the feelings of alarm and horror at the prospect of peeing my pants for the rest of my life. I need a place to air those feelings, because it's too distressing for those around me when I even hint at them.

To those of you who had the courage to admit similar feelings of frustration, depression, regretting having the surgery, cutting back on being active, thank you. I needed to know you are out there.

Charlie, I wish that, like you, I could "just not care" about it, but that's not me. Forgive me for saying that I can't help reading between the lines of your post that it gets to you more than you let on, too. I guess we all have our own ways of coping.

I dumped my therapist because he wouldn't let up on this idea that you have to "just know" it's going to get better. His happy-thoughts prescription was driving me nuts. Look, I am certainly prepared to be hopeful, and to do my kegels religiously. I'm not "giving up," in that sense. But to say I "know" what's going to happen, positive or negative, is bull.

I hope, and I cope, as well as I can. I try to maintain my state of mind on an even keel. I hold on to the fact that I'm young, that my continence was perfect pre-surgery, that the nerve sparing was successful on both sides. Linda, Glen, and "Doting Daughter," to hear you report TOTAL continence eventually, that's huge. That gives me more to hold onto than I've had for weeks.

But at the same time, I'm just not a person who can pretend that the fears, the feeling of regret, the despair are not there. I try not to let them take over, but it's actually harder to do that if there's nobody I can voice them to. So thank you all for that.

It was late at night when I wrote my original post, and that's when the shadows loom largest. Now, it's morning and the dark thoughts are packed away for now. I know they'll be back to haunt me again, but thanks to you all, and to your candor, I have more to hold onto when they do.
============================
Positive DRE JAN 2007 at age 47
PSA 2.5
Biposy 21 MAR 2007
Diagnosis 01 APR 2007: 2 of 8 cores positive, Gleason 7 (3+4), stage T2a, focus of perinerual involvement
AUG 2007 PSA 3.3
24 SEP 2007 open Radical Prostatectomy, Bilateral nerve sparing
Surgeon: Dr. Martin Gleave, The Prostate Center at Vancouver General Hospital, Vancouver, Canada
Post-op Day 2 (26 SEP) Home from hospital
Day 6: Bowel movements resume, causing painful bladder spasms, Dr. will not prescribe anti-spasmodic
Day 8: Catheter removed, totally incontinent, began taking Cialis
Day 9: Partial erection
Day 11: Nealy normal erection
Day 12: PATHOLOGY: Negative margins, minor cancerous invasion of periprostatic space
Week 3: Dry when lying or sitting
Week 4: Leakage when standing and walking greatly reduced
Week 4: Suspended taking Cialis. Normal erections on demand. Some urine leakage with orgasm.


Peter N
New Member


Date Joined Nov 2007
Total Posts : 3
   Posted 11/19/2007 1:32 PM (GMT -7)   
I wrote this today to send to my doctor so he could help others,you may have trouble believing it, but I feel like I just won the lottery.

How I used biofeedback to make a significant improvement to my severe incontinence.

I had my second Foley catheter removed 15 days after my Oct. 17, 2007 laparoscopic radical prostatectomy operation. (That’s another story). With the catheter removed, I was leaking 90 to 100 percent when standing or walking, about 50 to 80 percent when sitting but almost not at all when lying down. First thing in the morning, the only time I had anything in my bladder, I could start and stop the stream without problem with my Kegel muscles. During the day I couldn’t go much more than an hour on one large pad. The dripping frequency was about every 2 to 10 seconds. I also did Kegel exercises at least 5 times a day. After two weeks I hadn’t noticed any significant improvement.

After the first week, in my search for a solution on the internet, I found a reference to a biofeedback technique involving walking around a room holding a Styrofoam cup (with pants off) watching for and catching the drips and concentrating on stopping them. I thought that this had possibilities and I tried it about every other day for about a half hour each time. When it worked, I felt a heightened alert feeling similar to anticipating a tennis serve and I wasn’t holding my muscles nearly as tight as if I was doing Kegels. On a Wednesday, two weeks after having the catheter removed, I had it working pretty well but I would drip as soon as my mind wandered and its effect didn’t carry over when I stopped doing it. This time, to maintain my concentration, I began continuously repeating a mantra such as “don’t drip any more”, “don’t drip any more”. After another 10-15 minutes of this with the addition of the “mantra”, I had get dressed and go do some errands. I continued repeating the words to myself as I drove my car, filled my gas tank and then got something to eat before picking up my son at work. In that half hour I only dripped a half dozen times, usually when I lost concentration for a split second.

The next two days, I used only one medium size pad for each workday, repeating the mantra when I had to walk around (Admittedly this wasn’t too often because I have a sit-down job). That evening I washed dishes and did other busy work. I leaked more than I had during the day but if I gave the mantra more of an emphasis when I had to reach or bend down I could usually maintain control. By the weekend, I had maintained the lower rate of dripping even when I got lazy about repeating the mantra. I was physically busy doing yard work and hiking on a hilly trail. The pad became only about a quarter to a half full after several hours of this activity.

My conclusion on the following Monday morning is that this technique works great for very frequent dripping, but as the frequency became less I didn’t have as much motivation to maintain the constant concentration required. However, the less frequent dripping has become automatic for me and I don’t feel the need to repeat the “mantra” unless the dripping frequency increases. I still have a way to go, especially when doing physical activities, but I’ve made a huge improvement in a short time using this biofeedback technique. By the way, at work this morning at 11:00 am my pad feels dry and I haven’t had that unpleasant “oops” feeling yet.

I found the original reference at the prostate cancer forum link below, the “mantra” part was my improvement to the method;
www.healingwell.com/community/default.aspx?f=35&m=239259&p=3

Hagrid
Regular Member


Date Joined Sep 2007
Total Posts : 60
   Posted 11/20/2007 11:08 AM (GMT -7)   
loupdemer,

As many have said, you have plenty of options. I tried most of them for years before my wife convinced me to go the AUD route.

Other than my surgery to remove the cancer, it was the best decision I've made. (I take that back. Marrying my wife was the best.) I digress.

I had the same fears, problems, and embarrassments you've endured. No more. My "device" as I call it, has eliminated that, and now seems quite routine. I'm back to doing all the things I thought I had to make concessions on.

Just want you to know that you CAN be dry again. And it is a very viable solution. It has changed my life.
Age: 57 (49 when diagnosed)
PSA 100+ 3/1999
Biopsy -positive, both nodes 03/1999
Bone Scan and CAT scan negative 4/1999
Radical prostatectomy and bladder neck removed 04/19/1999
HT - 05/1999 (Lupron every 3 months for 9 months)
RT - 6/1999
PSA 0.0-0.2 until 2001
Casodex 150mg 2001 until 2006
Casodex 100mg 2006-present
PSA 0.4-0.6 2001-2007
 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 11/20/2007 7:55 PM (GMT -7)   
Hey Loud, Just another voice of support here. I'm 13 months post op and still using 3-5 pads a day. One thing you might look at is have a physical therapist check to see how tight your hip area muscles are. My therapist thinks most of my problem may be that the tight muscles are keeping the pelvic floor muscles from pulling like they should. I know it get's discouraging at times, but you have to keep your spirits up. If all else fails there is the AUS (artificial urinary sphincter). It apperars to have great results. I am just holding off for a while longer to see if I can get mine back on my own.
You need to look at your ED also. Atleast it still works. The leaking can be controlled with a condom.

Good Luck,

KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
        Biopsy Sept. 27, 2006 - Diagnosis Sept. 29 - 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
        RRP on Oct. 17, - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
    Oct 17, 2007 1 year Post Op - Still fighting moderate / Severe incontenance. Using 4-6 pads a day.  Erections usable....sometimes!...Better with 100mg Viagra
   

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