Jefnef's Page ~ Update: 1st PSA GOOSE EGG!!!!!

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bluebird
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Date Joined May 2006
Total Posts : 2542
   Posted 6/23/2007 6:19 PM (GMT -7)   

Quote from Jefnef posted on adb8s thread: Incontinence following prostatectomy

 

Hi everyone,
First I want to thank the forum participants and moderators for providing a fantastic resource. I haven't posted before, but just reading others posts has helped me cope with my situation. You have all been an inspiration to me.

My surgery went well. I went in Friday, was home Sunday. I am a healthy 55 and I was back to normal activity within a couple of weeks of the surgery. No significant pain, normal bowel function, and I consider myself lucky that everything went well. I am cycling, walking, an occasional short jog, and getting out and about. Not back to work yet, and I probably won't go back until I can manage the incontinence better.

It's now a little over four weeks since I got the cath out. It doesn't sound like a long time, but dealing with the pads and the constant dripping is certainly a trial. I'm OK if I don't drink a lot of liquids and stay seated or laying down. Otherwise, I'm dripping. If I'm active, I'll go through 8 or 10 pads in a day. And sometimes have to change underwear. If I'm not active and don't drink much I'll go through 4 or 5 pads.

There is so much conflicting information around. Do all the Kegels that you can stand. Don't do too many. Be sure and hydrate. Don't drink too much liquid. Drink whatever you like. Don't drink caffeine.

I love my coffee. Haven't been able to give it up, but I only drink two cups a day. I love a drink with dinnner or two, and I'm still doing that, although have not been drinking beer at all, switched to wine.

I'm keeping a positive attitude and doing my Kegels about 5 or 6 sets of 10 per day.

I can't seem to find Cedar Choppers Zen thread. Can someone post a link?

Thanks again for all of the support.


Post Edited (bluebird) : 10/2/2007 6:56:25 PM (GMT-6)


Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 6/23/2007 7:01 PM (GMT -7)   
Hi Bluebird,

My personal journey has been unremarkable, I think. I agonized for a long time about what type of treatment to have, and did not discover the healingwell forum until after my surgery unfortunately. I think that whole period would have been a lot easier for me had I known about all of the kindred souls here available for advice and consolation.

So, I travelled that road more or less alone, and just decided one day that surgery was the option I wanted. I still am not sure why I picked that route, but I am glad that I did. I am confident that my PSA test in August will be near zero, and that this whole episode is just one more step in life's journey-- one more "adventure" that I'll move past.

It's interesting how my attitude about cancer has changed now that I am a survivor. The thought of cancer before was intimidating, foreboding and dreadful. Now that I have been through it, I realize it is just one more challenge to living an aware and full life. And I have increased confidence that I'll weather any other challenges that come up down the road. None of the events I had to go through, including this current incontinence challenge, seem like they are overwhelming, thanks to the support of friends, family and this forum community.

I can recall thinking about incontinence years ago, and not being able to fathom how I would deal with it. In actual fact, it's quite mundane, and we do deal with it. It's depressing, if you let it be, and it's not fun. But like everyone here says, Stay Positive and don't get discouraged. Hopefully it will resolve in time. I have noticed not too many folks posting about problems more than a year down the road. I can only assume that they have resolved their issues and moved on. Good for them. I guess I'm next in line.

Thanks again.
Diagnosed 1/23/07
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 6/23/2007 8:17 PM (GMT -7)   

Jefnef:

Your journey may have been unremarkable, but your positive attitude can be a great lesson for many newcomers here searching for help and comfort.

Good luck to you.

Dutch


Diagnosed Feb 2001  (Age 65)  Currently 71
PSA 4.8
Gleason 3 + 3 = 6
T2b
Completed Proton therapy @ Loma Linda - Aug 2001
5yr PSA   0.17
Have had no side effects.


bluebird
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Date Joined May 2006
Total Posts : 2542
   Posted 6/24/2007 4:27 PM (GMT -7)   
Hi ~ Jefnef...
 
I forgot to add this one...... :-)
 

(Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

 

 
In Friendship ~ Lee & Buddy
 
  tongue edited to add link below!!!!
 
Also ~  You can't go wrong with the postings in this thread... There's bound to be something that will work specifically for you!!!
 
Kegel Help?  started by KW 

Post Edited (bluebird) : 6/24/2007 6:16:09 PM (GMT-6)


El Tigre
Regular Member


Date Joined May 2007
Total Posts : 58
   Posted 6/24/2007 5:01 PM (GMT -7)   
Jefnef,
I LOVE my coffee!! I was real disappointed when my doc told me to stay away from caffeines for a while post surgery. I did as I was told and low and behold had no need for pads. I don't know if the caffeine deprivation was the reason or not. I do know that even now, 20 months out, I can't drink a lot of it. I have had problems with urine control after drinking more than about 2 cups over a couple of hours time. Caffeinated soft drinks do the same kind of thing. Basically, I will get an overwhelming urge to go with no real lead up warning time. Kinda like, Gotta GOOOOO!!! Right NOW!!! If I don't take immediate action I can leak a bit. My wife giggles at me and says I look like a little kid who waited to long. Says I should know better by now. :)

My solution is to buy "really good" coffee that I grind myself. I find I don't desire the regular stuff now that I have been spoiled.
I sure do wish I had found this site pre-surgery!! RRP 10/25/05 I don't remember all the scores. Have had clean checks ever since. Never had to use the pads!!


Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 8/16/2007 4:07 AM (GMT -7)   
Hello all,

Just a quick update. I got the results of my PSA test on Aug. 10 and it was "less than zero." I'm relieved but I am not exactly celebrating. Unfortunately, incontinence is still an issue.

I do not seem to have improved at all since I got the cath out about three months ago. Unless I am sitting down or laying down and completely relaxed, I am leaking. If I am working outdoors in the hot sun, and drinking liquids to keep hydrated, I can go through a pad every hour and a half or so. It's a real disincentive to physical activity. Sitting in front of the computer and cruising the internet is a nice low stress and dry entertainment these days. I found out about a product called "Afex" on the healing well forum and have been using that when I need to be active and standing up. It's basically a urine collection system instead of an absorption system. It relieves me of having to change pads every so often, but it's not perfect, and just like pads, I'll end up getting a wet spot on my clothing if I am not careful... or sometimes even if I am careful. It's very frustrating.

I am trying to take it one day at a time. When occasionally I wonder if this will ever get better, it's pretty depressing, so I try to keep it positive.

At my PSA follow up, I was meeting with the nurse practiceoner, not the surgeon. I asked a lot of questions about my continence, and she was not very helpful. She said that most patients are doing better by this stage, but could not articulate what might be causing my problems. She suggested that I let the surgeon do a cystoscopy on me, but I am not eager to have a camera on a tube inserted up my penis-- I guess you are awake for the procedure. Especially since she could not explain exactly what types of conditions they would be looking for or how they might be corrected. Since the facility where my surgery was done is more than an hour from my home, I am planning to go back to the urologist that diagnosed me and see what he recommends.

Erections have been infrequent and about a 5 on a scale of 10. I am doing the viagra therapy, 50 mg three times a week, and my insurance refuses to pay for it.

I'll be out of sick leave soon, but luckily I am eligible for disability. I hope that I can improve to the point where I can return to work soon.

Anybody ever have the cystoscopy? And if so, can you tell me why you had it and what they found? I had something right before they took the catheter out that injected dye into my plumbing, but as I understand it, this is a little different, using a camera.

Thanks
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing


Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 8/16/2007 4:10 AM (GMT -7)   
Oh, one more snippet.

Since nothing I do seems to affect the incontinence situation one way or another, I have felt free to eat my spicy foods, drink coffee, and have my regular glass of wine with dinner. That's the upside. And I'm trying to do the Kegels, I would guess I am doing about 100 or so per day. I can stop my stream while I am urinating, but I can't seem to stop the drip that starts when I am not kegeling and standing up.
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 8/16/2007 7:06 AM (GMT -7)   
Jefnef,

Excecpt for your incontinence, I'm glad to hear you are otherwise feeling well and not letting this annoyance cloud your mood.

I would offer that on the one hand, you are way ahead of the curve on conquering E.D. - while on the other, you are just a little behind most in beating incontinence. 
Three months is just about two weeks behind where MANY suddenly see rapid improvement!

My personal experience suggests you might benefit from a bio-feedback therapist.

One of the things I was doing at weeks 10 through 14 (when I became pad-free) was sitting/walking around the house nude with an old t-shirt to collect drips - exerting as much kegel control when moving around - & finessing as much urine retention  - as possible.

It is the control (at first conscious - later somewhat automatic) it is the control that you learn to exert when walking around (especially on stairs) that demostrates that the goal of kegel exercises is not a vice-grip - but rather a muscle tone of a group of muscles that share the load.  (The last third cycle of the "elevator kegel exercise" best develops this "tone.")
 
The developed kegel (pelvic floor) muscles are "couching" that valve that works for you while you sit still.  Your movements and gravity pull on that valve. The pelvic floor muscle bundle must work like your bicep does when you hold a weight  in an extended arm while walking.
One other observation and encouragement:  Any type of pad or physical urine control will delay your improvement. Your mind and sub-conscious will slowly-if-ever make this extraordinary effort (Women are amazing!) if it knows the pad or bucket or whatever will catch the drips.

Personally, I found drinking any alcohol was a real challenge for this learning process.  Some become continent while drinking.  A very few never become continent whether they drink or not.  Others find they are challenged by caffeine or spice. 

Perhaps it is too soon to throw in the towel - just walk around nude with an old one instead.

Respectfully,

CCedar
ICTHUS!
2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Pad Free @ 14 weeks.  Six Month PSA <.003  :)
At 6 months, ED treated with Pump Exercises & 50mg Viagra Daily
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?


Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 8/18/2007 4:43 PM (GMT -7)   
I would like to find out more about the biofeedback training for incontinence. Has anybody tried it? Was it effective? How would I go about finding someone who's expert at it?

I feel like perhaps that's what I need to be able to control my dripping.
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/18/2007 6:39 PM (GMT -7)   
Hi Jefnef,
 
Nice to hear of your great PSA results.  I'll have my first post-surgery PSA in September.
 
There was a real nice post on bio-feedback for incontinence on the "healthboards" forum by a user with the handle "mauryfromplano."  The link is here: http://www.healthboards.com/boards/showthread.php?t=526270&page=2
 
I think you can read threads at healthboards (Cancer: Prostate) w/o joining up if you're not a member.  If you do join that forum (it's pretty insightful as well), beware that there are many restrictions on what you can post (i.e. no e-mail addresses, no web sites or links, no contact information, etc.).
 
Anyway, maury did a good job explaining his first bio-feedback session with a physical therapist for incontinence. 
 
I hope that helps!
 
All the best,
 
Idaho


Age: 54
PSA: 4.3
Biopsy: T1c, 3+3=6, 2 pos. samples in one side of prostate, <5% volume
Da Vinci 31 Jul 2007: saved nerve bundle on side of non-cancerous side
Final pathology: Confined to prostate, T2a, 3+3=6, <1% volume
Working to get back into good shape
Waiting to take that first post-op PSA

Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 8/18/2007 7:08 PM (GMT -7)   
Thanks for the link. I am going to go to a local urologist (not my surgeon) and get a second opinion on my condition, and hopefully a referral for a biofeedback therapist. I'm pretty frustrated with the lack of improvement on the dribbling. There's a lot of threads on this forum about others with similar condition. It seems that most kind of drop out of sight, and I'm hoping that means they've gotten better and moved on. Not too many reporting back after 4, 5, 6 or more months.
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/18/2007 8:07 PM (GMT -7)   
You're right Jefnef,
 
I think for the benefit of others we should stick around.  Many here have stayed, but some have moved on.  Like you, I hope moving on is a good sign!  Statistics say it should be a good sign.
 
In addition, I hope you and bluebird kick me in the pants if I stray away.
 
All the best,
 
Idaho

Age: 54
PSA: 4.3
Biopsy: T1c, 3+3=6, 2 pos. samples in one side of prostate, <5% volume
Da Vinci 31 Jul 2007: saved nerve bundle on side of non-cancerous side
Final pathology: Confined to prostate, T2a, 3+3=6, <1% volume
Working to get back into good shape
Waiting to take that first post-op PSA

puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 8/18/2007 8:21 PM (GMT -7)   
Jefnef, I just had the cystoscope last week. It was a bit uncomfortable, but nothing too bad. The nurse (male in my case) washed the area down. He told me exactly what he was going to do and what I chould expect. He then took hold of my penis and raised it to a vertical position. Then, using a syringe like device, inserted an anesthetic -- lydocaine, I think. Not too uncomfortable. The dr came in and began to insert the cystoscope. Not really uncomfortable, just a wierd sensation. Unfortunately, I have a narrowing in my urethra about 2-3 cm from the tip. So he asked the nurse for the "male sounds." The nurse looked at him like he was crazy and said he'd never heard of them. (He is new). Dr sent him out to get them from another nurse. (I heard later they were howling with laughter!) They are almost like a set of graduated Allen wrenches. He inserted the smallest one, then the next size and so on -- to stretch out the urethra so he could insert the probe all the way. (The instruments are called "sounds" in the sense of taking soundings, like a mariner does, I guess. Once the nurse came back into the room, the three of us started laughing so hard trying to imagine what a "male sound" would sound like -- the nurse said at first he thought the dr had said 'whale sounds - that he had to stop the procedure because by belly was bouncing up and down from laughing so hard!) Anyway, the "sounding" was pretty uncomfortable, especially when he reached the size that exhausted my tolerance diameter-wise. Having done all that, he went back to the probe. It slipped right in and I really felt very little. He was able to see what he needed in a matter of seconds and the whole thing was over. A little bleeding when I urinated for a day after, but no more. He did discovery that I have scar tissue just beyond my urinary sphincter, where the urethra was re-attached to the bladder. I go in for a "dilation" procedure in Sept to open up that area. It's done under general anesthetic, but only takes a few minutes. Good luck. I wish you the best with the incontinence issue.
Puget
60 yers old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07


Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 8/19/2007 7:55 PM (GMT -7)   
Puget,

Thanks for the response, and the explanation.

If you were able to find humor in a situation like that, how bad could it be? I gotta admit, that was pretty funny... "whale sounds"??? ;-)
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/2/2007 5:55 PM (GMT -7)   

I'm late with this!!!!!  But ~ she's back now!!!!!!! 

 

tongue Yea!!  Jefner,

 

1st    PSA…   !!!~~~>>>  Woo~Hoo  <<<~~~!!!

 

Cause  for   celebration!!!!!  Definitely!!!

What a wonderful day it is ~ each and every-day….   

Enjoy it to the fullest. 

Yippeeeee!!!!!! From  Lee & Buddy

*     *     *     *     *     *

The ultimate “goal”… we all strive for… Thank you for sharing ~ that your goal has been met….

It is very important to “all ”of us!  This is a way of positive feedback…

A way of showing others Hope… and a way of Sharing.

 

J  Caring is Sharing ~  Thank You for Sharing  J

 

 

Helping to keep Jefner’s Journey together!!!

Jefnef's Page... Welcome :)   Started by bluebird

Reason for my continued incontinence: "Stricture" Started by Jefner 

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