Catheter out today---is this normal?

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WHOFAN
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 6/13/2007 9:04 PM (GMT -7)   
Hi everyone,

Husband too down in the dumps to post so I am posting for him. We had the catheter out today and even though we know that it's going to take time to get everything working again he is concerned that is urine is just dribbling out....no stream but just dribbling. Is this how it is at the very beginning? Or should we be concerned? How long does this "dribbling" go on for (average)? He is wearing a diaper.

Can anyone share their experience at the very beginning with this incontinence? I am surfing the posts to see if I find anything on this.

We have been away for awhile but we are back. The surgery and recovery were harder than we expected. David was in the hospital Monday through Friday. It was tough. We weren't the lucky "sail through it" typical Da Vinci patient. But, we are home, recovering and glad to say the pathology reports came back great.

It's just dealing with this new set of issues now.....dribbling.

Thanks for sharing. We appreciate it.
C&D
WHOFAN
Husband: 53 yrs. old
Diagnosed 3/12/07

PSA: 8.12

T Stage: T1C - GLEASON: 7 (3+4)

Da Vinci performed 6/4/07 at UCLA with Dr.Robert Reiter.
Staging after surgery: T2B
Cancer contained in capsule. Negative surgical margins. All looks good
for now. First post-surgery PSA scheduled September 19th.
Catheter out 6/13/07
Live in Los Angeles with wife and 5yr old daughter


pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 424
   Posted 6/13/2007 11:11 PM (GMT -7)   

Whofan,

I had surgery 4/24 and catheter out 5/2...  We live about 1 hour from the hospital.  On the trip home I dribbled a lot and squirted a few times...  Had to stop at a gas station to change pads as the one I put on for the trip home was already soaked.

After we got home and I cleaned up a bit and relaxed,  I found that sitting quietly, reading or watching tv, I would not hardly dribble or leak at all.   As soon as I got up and if I didn't hold the kegals real tight, I would squirt.  Walking was a continuous leak/squirt.  I was not looking forward to sleeping that night.

Amazingly, when I layed down to sleep, I did not leak/drip at all...  I did get up 3 or 4 times during the night to pee, but could squeeze kegals and make it to the bathroom without leaking.

Things did settle down a lot over the next few days as I grew accostomed to circumstances when I would leak or squirt, and times when I would be fine.  A typical day, I would go thru about 6-7 pads.

For me now, and I am now 6 weeks past catheter...  Sleeping and sitting have never been a problem.  Getting up from sitting, sneezing, coughing, and walking still cause some leaking/squirting.  Each week, I experience greater lengths of time that I do not leak very much walking.  Mornings are best, and evenings are worst.  I did find that if I took a short nap just after noon,  I could get up and walk somewhat leak free for a couple of hours. I am now going thru 4-5 pads a day, but not worrying or being embarrassed about it. I keep an extra pad in a pants pocket with a plastic zip lock in case I need to do an on the fly change while walking or shopping.  I have gotten pretty good at changing a pad in the front seat of the car in a crowded parking lot...  :-)

The important thing is DO THE KEGALS on a regular structured schedule...  Do not over do them, but follow your doctors instructions.   After awhile, throw in some elevator kegals (See Cedar Choppers thread for instructions).  And get LOTS OF REST.  When you are tired, you tend to leak more.  I still get frustrated once in awhile, but things are definitely better now than they were at the beginning...  Just not at the time schedule I wanted.

And the most important thing...  THE CANCER IS OUT and you have great chances for a continued long and fruitful life!  That is the #1 thing...  Continance and ED are #2 & #3...  And they take a little longer than getting the prostate removed...  Everybody has their own recovery pace, but the odds are good for us...  it just takes time.

This forum is a great place...  Plenty of threads on all kinds of issues we of the PCa "family" have had to go through...  Anf plenty of love, care, and support!  You can also ask questions and advice from our wives and support/care givers...  to get their perspectives from their side of the journey.  No question is dumb and no question is too intimate.

God Bless!

Ray & Avis

 

 

 

God Bless!

Ray & Avis

 

 

 

 

 

 


pasayten
Age 59 y/o - Last 3-4 years of annual general health checkups - PSA 5-6 but Free PSA Ratio 21-24%, suggesting "benign"
3/7/2007 - Went to urologist -Neg DRE, but scheduled screening biopsy
3/13/2007 - 12 point biopsy - Left 6 OK  Right 1 of 6 had small hit.
Gleason 3+3 Diagnosed as T1c
4/24/2007 - DaVinci performed at Virginia Mason hospital in Seattle
5/2/2007 - Catheter Out! Got copy of pathology report:
Gleason 6  T2c Nx Mx   approx 20% of prostate involved
Positive margin, but 2 places where a focal point of only 2 cells were touching edge, the right apex and right posterior. Perineural Invasion present. Seminal Vesicle and Lymphatic/Vascular not identified. Final Diognosis of T2c "suggests" organ confined.  Stats for no re-occurance are 95% for 7 years. No further treatment other than PSA watch.


spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 6/14/2007 2:25 AM (GMT -7)   
Hello WHOFAN,
 
When my catheter was removed I had considerable leaking (I was not one of the gifted & talented). I could only hold for a few minutes at a time without leaking, and I was going through 7-9 Depends a day. My doctor had advised us prior to the surgery this might be the case. It was still a difficult thing to deal with. I did my Kegels and walking every day, and then in the 4th week (as I recall) one day I needed only 4-5 Depends. At 7 weeks 2-3 Depends, and by the 10th week I was using 1 Serenity Pad a day. After the 10th week I was 99+% dry.
 
It's tough to be patient, but thats what it takes to get through this. Keep doing the Kegels, and walk as much as possible. I found that the walking made me feel better, and I'm sure it speeded up the healing process.
 
One caution I must emphasis is the doctor's instruction NOT to lift anything 10 pounds or heavier for at least 6 weeks. I did not heed that warning, and the consequences were severe.
 
So good luck to you both, and I hope you heal quickly. Oh yes, I almost for got; the body needs protein to heal (I used that to get as much BBQ'd beef/pork as my wife would allow) Now I'm on a diet, but it was good while it lasted.
 
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. boundaries
DaVinci surgery on 02/23/06
 


survivor_wannabee
Regular Member


Date Joined Apr 2007
Total Posts : 29
   Posted 6/14/2007 5:45 AM (GMT -7)   
WHOFAN, as you can see by my closing, I am not so very far advanced of your husband in terms of when I had my catheter removed. I didn't have the extended stay you described, but did have some challenges with the catheter, not to the point of getting infection, but lots of irritation. I was ecstatic to get it out, but found myself almost totally incontinent that first day. I believe I posted some pretty negative thoughts vs. what I had seen posted by "the lucky ones". Of course there were equal numbers of Average Joes and folks that have continued to have problems (my thoughts and prayers go out to those guys). At any rate, I have gotten better every day, although I am still in quiet mode, mostly sitting in my exec PC chair with legs propped up on another chair with two pillows. I found early on that the same muscles I was exercising with the Kegels, if gently squeezed as I rose out of the chair, allowed me to get to the bathroom and void as opposed to the first day when I just dripped as you described. I now walk maybe a couple of miles twice a day and don't leak. I am feeling well enough that I often get out of my chair forgetting to tighten up a bit and have a spurt, but not a deluge. I never have issues at night. I am down to maybe 4 Serentiy for Men Guards a day. All this said, I would say looking objectively at the posts, I am middle of the road and your husband needs to let a couple of days go by before he starts to despair. There are plenty of tips out here that I feel indebted to all the giving folks on this forum. Read up and I wish you and your husband the best in his recovery.
Age: 57
Diagnosed: 3/27/2007
PSA: 4.9
Gleason: 3 + 4
Cancer in 6 out of 12 samples
DRE: Positive
Stage: T2B
RALP Performed: 5/29/07
Partial nerve sparing one side, full on other
Prostate not enlarged, margins visually look good
Hospital stay: about 24 hours
Catheter Out: 6/8/07


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 6/14/2007 7:13 AM (GMT -7)   
Hi whofan and others. I got my cath out on tuesday of this week. I am dribbling a lot but can get a stream out of it also when I feel the urge. It is hard to control the dribbles. Started kegels this morning per my Dr. It is hard to hold them for 5 seconds but I am not going to give up. I can't sit around the house, so we are getting ready to go out and have lunch with some of my co-workers and later get up members of our car club to get ready for our July 4th car show. Have extra underwear and pads with me at all times. I am a Boy Scout and always prepared.

Mika-mvesr

WHOFAN
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 6/14/2007 1:59 PM (GMT -7)   
Thanks to all of you that replied.  We have been reading the posts and feel hopeful.   As a wife, I just try to support, distract and hope things improve.  I'll stay in touch with you all and let you know how David does.  Last night he went through 4 diapers.  sad
 He was very discouraged.  Not happy in the least.
 
More to come....it's not over. 
 
Take care to you all and lots of luck to this amazing group of supporters, survivors and cancer warriors.
 
Cynthia
WHOFAN
Husband: 53 yrs. old
Diagnosed 3/12/07

PSA: 8.12

T Stage: T1C - GLEASON: 7 (3+4)

Da Vinci performed 6/4/07 at UCLA with Dr.Robert Reiter.
Staging after surgery: T2B
Cancer contained in capsule. Negative surgical margins. All looks good
for now. First post-surgery PSA scheduled September 19th.
Catheter out 6/13/07
Live in Los Angeles with wife and 5yr old daughter


naimnut
Regular Member


Date Joined Jan 2007
Total Posts : 93
   Posted 6/15/2007 10:10 AM (GMT -7)   
Whofan,
 
Yes, this is completely normal.  I had the exact same thing happen to me when I got my catheter out, and my surgeon said "no kegels for two days, let everything rest and heal in there".  So the dribbling was very disheartening and distracting.  Every time a little dribble leaked out I felt like it was the end of the world.  Really a bummer!
 
But things will probably get better fast.  I am two weeks plus one day out of surgery and am pretty much dry all night (very little leaking) but up about 2-4 times a night peeing.  I'm usually pretty dry during the mornings and am able to control things well but begin to leak when I am out for my mid-day walk.
 
My surgeon said, start with 100 kegels per day, then add 10 per day until you get up to 300, which will be in about a month or so... If it causes problems, lay off for a day, let it plateau, then gradually increase the quantity again.
 
Really, don't get discouraged. Things will get better.
 


Age, 53
PSA 3.76, Gleason 6, T1c, scans negative
psa doubling time 35 months
Da vinci robotic surgery May 31, 2007,
Nerves spared
Clear margins, clean pathology report
Catheter out at 4 days.
Dribbling like a basketball star
At 10 days out, dry all night, most of the morning.
Walking 2-5 miles per day.
Down to about 4 pads/ day.
 

Post Edited (naimnut) : 6/15/2007 11:16:42 AM (GMT-6)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/15/2007 5:11 PM (GMT -7)   

Hi Cynthia & David,

 

It breaks my heart to know you traveled these stepping-stones without us!!!  Your Forum Family… that’s truly what we are hopes you stay closer because the support here is so important ~ not only for you but for us too!!!! 

 

Wonderful news about the pathology report!!!  Having the catheter out… is unique to each and every one of us… continue reading because Knowledge is Power….    Yes ~ there are many postings that will help to make you realize that this is a normal happening with many.  I will add a few threads ~ but please continue to search for answers to your concerns… The most important thing right now is….. Do Not Get Discouraged.   :-)   

 

Sending warm thoughts and gentle hugs to you as you continue to move forward… One~Day~At~A~Time

 

 ~~*~~*~~*~~*~~~)*&^%  Group Hug %^&*(~~~*~~*~~*~~*~~

From the 3 of us...

Lee, Buddy, & Murphy

 

(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 ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)

 

Threads from Helpful Hints / direct links…

Total Incontinence After Prostatectomy

Argylegolf

Total Incontinence After Prostatectomy

GerryHE

 

Kegel Help?

KW

 

Kegels - to pee or not to pee?

pianoman

 

Incontinence After Prostatecomy

Sparrow610

 

Incontinence following prostatectomy

adb8s

 

Incontinence and Surgical Technique

TimG

 

Incontinence very bad at 3 weeks post catheter removal

Bill23

 

«  bluebird ~  Moderator for Prostate Cancer Forum

Post Edited (bluebird) : 6/16/2007 2:36:43 AM (GMT-6)


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 6/15/2007 10:45 PM (GMT -7)   

Hi "WhoFan"  As the wife, you are now in the "dog days" of this recovery.  I too, took longer than the average bear to recover from the Da Vinci, It was eight weeks before I started feeling like my old self again.  Your husband needs time to heal and to learn the importance of patience in this ordeal. Retropubic or robotic, they are both major surgeries and require time for the poor SOB to heal and get used to his new body.

At this early stage, both leaking and squirting are part of the program.  It will resolve.

For me, one of the most difficult aspects of this PCa thing was the loss of control – from the time I had to have the biopsy; through the pre-op tests and scans etc.  I was being told what to do and when-and-where to do it  -- And it drove me nuts.

I sense what you are going through is what my wife went through during my first weeks post-op.  She was hoping for life to go on as usual, a week or two after surgery (as some docs suggested).  But that's not how it worked for me.  I wore pads; I was amazed at how I filled them on a daily basis and at how exhausted I'd be after some simple tasks, like going to a movie or a ballgame.  I was very scared at the time, wondering if I’d ever get back to normal.  But I did.

MY TWOCENTS -- Cut your man some slack and you'll see him rebound in no time.

If dribbling is his biggest problem right now, he has no big problem.  Have him continue doing the things that make him leak or squirt (unless it’s heavy lifting, running etc.).  Encourage him to continue making those sudden moves. like lifting a coin off the floor, turning around when backing out the car, opening a new jar of peanut butter – whatever.  Heck, using my Sonic toothbrush made me gush for about two weeks after surgery.  Go figure!  Repetition of these old moves will cause the squirts to cease.  At least they did in my case.

I know wearing pads is a drag, but I finally decided that if I had to wear them, PI$$ on them, so to speak.  That's what they are there for. They'll be gone before you know it. 

Thanks for being such a wonderful, patient wife for your man.  I thank God for my wife.

Best to ya,

You'll both be fine

Tom

 


54 years old

PSA = First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06 (6 out of 8 cores positive), both lobes, Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.

First post-surgery PSA -- Undetectable, 2/20/07

Post Edited (PianoMan) : 6/15/2007 11:47:50 PM (GMT-6)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/16/2007 1:54 AM (GMT -7)   

For future readers… ~  Please make note of this…

Yes ~ we need to follow our doctor’s orders… but we also need to know the results from them… once stated…

 

Partial Quote from Naimnut…. (see his post above and then read his thread below

My surgeon said, start with 100 kegels per day

I guess I overdid it yesterday. 

Today I feel "tired" down there and am leaking a lot.  My wife has been concerned that I was overdoing it.  And so I probably did yesterday.

 

Naimnut’s thread.. click here..>  What does an incontinence "setback" after over-exercising really mean?

 

In Friendship ~ Lee & Buddy

 

«  bluebird ~  Moderator for Prostate Cancer Forum


WHOFAN
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 6/17/2007 2:26 PM (GMT -7)   
Hi Naimnut, Pianoman and bluebird and everyone else who posted....

Thanks so much. Great to read everyone's posts.
David is a pretty private kind a guy and doesn't reach out too much so I am the one on this sight all the time.
It's been 4 days after catheter/drain bag came out and tomorrow (Monday) will be 2 weeks post surgery.
David is totally in diapers. His energy is pretty low (glad to hear yours was too, Pianoman)....I keep wondering why he needs to keep laying down so much. I just want him to heal and the doctor said he should spend time doing "light activity". Well, I am just going to be patient and let him do his thing. I worry that he is plain depressed. I also hear that anesthesia can cause depression on top of everything else he went through. AFter surgery he needed 3 pints of blood as he did suffer blood loss. So I assume that takes time to build up,too.

He says that he tries to pee and has some luck at minimal control but for the most part it just "comes out" without his control. He has had to change is diapers at night a few times, too.

Tough. I wonder if the open surgery would have been as bad or the same.
We really hoped the da vinci would have been easier. It wasn't.

Friday was our 11th wedding anniversary and we did hobble out to dinner (my mom watched our 5yr old daughter) but David had difficulty sitting down for more than about an hour. He says everything is painful "down there". I can only imagine. I guess you all feel the same way, right?

OK...I will check back in with you all soon. You are all so wonderful and thanks again for your posts. It helps.

Cynthia & David
WHOFAN
Husband: 53 yrs. old
Diagnosed 3/12/07

PSA: 8.12

T Stage: T1C - GLEASON: 7 (3+4)

Da Vinci performed 6/4/07 at UCLA with Dr.Robert Reiter.
Staging after surgery: T2B
Cancer contained in capsule. Negative surgical margins. All looks good
for now. First post-surgery PSA scheduled September 19th.
Catheter out 6/13/07
Live in Los Angeles with wife and 5yr old daughter


naimnut
Regular Member


Date Joined Jan 2007
Total Posts : 93
   Posted 6/17/2007 4:31 PM (GMT -7)   
The need to rest is surprising!  I find that every day I  need an hour nap, sometimes longer, and this is deep, deep sleep.  Today, surprise, surprise, I needed two naps!  I find that doing a normal outing, like going to the grocery store, or for one of my 30-45 minute walks really wears me out.
 
Its surprising because I don't look like there is anything wrong with me.
 
Tell David that the leaking will improve.  He's got to believe and do the walking and kegels.  It takes time and that can be very discouraging...  It will get better.
 
 
Age, 53
PSA 3.76, Gleason 6, T1c, scans negative
psa doubling time 35 months
Da vinci robotic surgery May 31, 2007,
Nerves spared
Clear margins, clean pathology report
Catheter out at 4 days.
Dribbling like a basketball star
At 10 days out, dry all night, most of the morning.
Walking 2-5 miles per day.
Down to about 4 pads/ day.
 


StrictlyInc
Regular Member


Date Joined Dec 2006
Total Posts : 353
   Posted 6/17/2007 7:18 PM (GMT -7)   
WHOFAN, glad to see you back posting here. Keep the faith, your husband will get better!
____________________


Prostate cancer diagnosed: May 15, 2006 (age 40)
Gleason score: 3+3=6
daVinci radical prostatectomy: July 25, 2006
size of tumor: approx 1.1 inches
post-surgery Gleason score: 3+4=7; negative margins from surgery

- number of pads/day at 3 months after surgery: 3 to 5
- number of pads/day at 4 months after surgery: 1 to 2
- number of pads/day at 6 months after surgery: 0 to 1

- 1st post-surgery PSA: 0 (Nov 2006)
- 2nd post-surgery PSA: 0 (Feb 2007)
- 3rd post-surgery PSA: 0 (May 2007)

ongoing post-surgery treatment: Cialis every other day, Viagra "on-demand", ErecAid pump daily Cialis every other day, ErecAid pump twice daily (when I can manage it)

- PGE1 batting average: .364 (4 for 11)
- Bimix batting average: .500 (1 for 2)


WHOFAN
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 6/17/2007 8:01 PM (GMT -7)   
Hi Raheeb (JDS)-
Thanks! And thanks for your continued support. I think I need this community more than David! He relies on me so I feed him the information I find on this sight. I feel like he almost wants to forget this all happened to him....which of course, he can't!
So, here we are (I am)....
Plugging along.....

Hi Naimnut - Thanks for your post, too. It's good to see that this lack of energy is how it is for now for some post-surgery patients. We had some friends over today and he basically was wiped out from visiting after 2 hours. Visiting only consisted of him sitting in a chair, too! Well, in any case, I'll try not to worry too much. I do worry about the incontinence but I hope it will take a turn for the better soon. I remind David to do his kegels, etc. and he says he does them so I hope that is the case.

Thanks to spinbiscuit, survivor wannabee and mvesr and pasayten. I read your posts and feel hopeful.

Best to all,

Cynthia & David
WHOFAN
Husband: 53 yrs. old
Diagnosed 3/12/07

PSA: 8.12

T Stage: T1C - GLEASON: 7 (3+4)

Da Vinci performed 6/4/07 at UCLA with Dr.Robert Reiter.
Staging after surgery: T2B
Cancer contained in capsule. Negative surgical margins. All looks good
for now. First post-surgery PSA scheduled September 19th.
Catheter out 6/13/07
Live in Los Angeles with wife and 5yr old daughter


spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 6/17/2007 9:52 PM (GMT -7)   
Hi Cythia & David,

I know exactly how it felt to be exhausted after the slightest activity, and it did take some time to improve. I used to think "maybe it was because now I'm 60" that was a cop out. The DaVinci procedure is a major shock to the body, and the body needs some help to mend itself. Exercising (for me that was walking) did the most amount of good for my weaken condition. Then there was the increased protein diet that gave me the stuff to repair damaged tissue. Steak, ribs, chops, and chicken were the best part of healing; maybe all that BBQ was a bit excessive, but hey I was the sick guy right?

Since my last surgery I have been working to get a little more realistic with my eating habits. Good things can't last for ever I guess. Now I'm in better shape than before surgery, and a bit wiser too. So get that chin off your chest, and go walking then treat yourself to a Pulled Pork BBQ'd sandwich w/coleslaw (beer optional).

I hope you feel better soon,

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. boundaries
DaVinci surgery on 02/23/06
 


Mike A
Regular Member


Date Joined Feb 2007
Total Posts : 213
   Posted 6/18/2007 4:51 AM (GMT -7)   
Cynthia and David,
Don't get discouraged! After three or four weeks, I was sure I had done the wrong thing. I doomed myself to a life of pads and diapers, and was positive it would never get any better. How wrong I was! Thanks to the fine people on this forum, I regained the confidence to continue. Today (nearly six months post-op) I feel great, and am down to one small pad, which most days I change for hygine rather than fullness. The exercise and kegels are important, as well as the periods of REST! Both body and soul need healing time and the relaxation helps with both. David is lucky like many of us on this forum, to have a Life's Partner who is so supporting and caring. Take care of you, too. You are as important to his recovery now as any Doctor!
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.
"If patience is a virtue, I feel like the most virtuous guy on the planet!"


survivor_wannabee
Regular Member


Date Joined Apr 2007
Total Posts : 29
   Posted 6/18/2007 2:42 PM (GMT -7)   
Hurrah! There's hope. For those of us that are impatient for results it helps to hear good things from the veterans. I am now a survivor and as a result have become a veteran_wannabee!
Age: 57
Diagnosed: 3/27/2007
PSA: 4.9
Gleason: 3 + 4
Cancer in 6 out of 12 samples
DRE: Positive
Stage: T2B
RALP Performed: 5/29/07
Partial nerve sparing one side, full on other
Prostate not enlarged, margins visually look good
Hospital stay: about 24 hours
Catheter Out: 6/8/07


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 6/18/2007 6:47 PM (GMT -7)   
Hey WhoFan -- Keep hanging in there.  HE’S JUST UNDER THREE WEEKS OUT!  THE INTERNAL SWELLING HASN’T EVEN GONE DOWN YET AND WHEN THAT HAPPENS, HE MAY HAVE INCREASED INCONTINENCE FOR A WHILE, PLUS A FEW FUNNY SENSATIONS DOWN THERE.  Plus some depression and some worry and some tears, at least that's the way it was in my case.  It’s all part of the process.
My wife and I love to eat out and for several weeks post Da Vinci, we had lots of opportunities to go out, but she could see I was uncomfortable trying to sit down in a restaurant long enough to get through a single course.  JUST ONE MORE OF OUR FAVORITE THINGS WE WERE UNABLE TO DO TOGETHER!!  It was frustrating for both of us.
It just ached down there and wasn't fun to sit upright.  The City of Hope nurses advised me to try to switch from one "cheek" bone to the other while sitting, which would work, but only for so long..
And yes, Da Vinci, is “less invasive," but it is still major surgery and traumatic to the body.  Those are little wounds, but com'n folks, we were essentially stabbed six times (including the drainage tube)  and it takes time to heal inside and out.
Like your hubby, during the first three to four weeks I could never seem to get totally comfortable unless I was flat on my back.  But that's not good either.  He should be taking easy walks, doing a little light activity, maybe a little cooking, sitting for a while, pacing around for a while, light stair climbing (and I mean light!!!) etc.
For the rest of you who posted here, thanks for your comments.  Those first few weeks are a challenge, but eventually, we break through.  It's nice to know that I wasn't the only one wondering if I'd ever feel like my old self again. 
At one point, around week three, when I was really in the dumps, my wife came home one day and gave me this beautiful little seashell-shaped pewter box she bought.  It is inscribed with the words, “The Tide Always Turns.”
And the tide did turn.  I keep it on my desk -- it will always be close to me.
WhoFan, I think you will be surprised at how quickly the next few weeks will pass for both of you.
Tom
BTW – I’m a major Steely Dan fan and here’s a favorite chorus from their song, “Any Major Dude Will Tell You.” (Released in 1974).
 
‘Any major dude with half a heart surely will tell you my friend
Any minor world that breaks apart falls together again
When the demon is at your door
In the morning it won't be there no more
Any major dude will tell you
Any major dude will tell you’


54 years old

PSA = First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06 (6 out of 8 cores positive), both lobes, Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.

First post-surgery PSA -- Undetectable, 2/20/07

Post Edited (PianoMan) : 6/20/2007 1:59:00 PM (GMT-6)


WHOFAN
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 6/20/2007 10:41 AM (GMT -7)   

Hi Pianoman,

I loved your post....It really hit home. I need to be more patient. My expectations have been way too high.   I want David to be up and about now.   I was so hopeful this would be a *blink* and we'd be back to where we were before surgery (minus the cancer!).  Wow.  This really has kicked our butts.  Really.  Anyways, David is trying to do light housework...waters the yard, sweeps, cooks a bit, feeds to the dogs...you get the picture.  I am glad he is trying as honestly, if he had his way, he would just be laying down all day.  I keep urging him to get up and do some things.  Yesterday he was able to drive to take our daughter to a playdate.  He came back home as he complained about being sore "down there".  I get that this was major surgery.   I just wished "they"  hadn't made it sound that he would be back to normal in 2 weeks.  That is SO not the case.   We haven't even tackled the issue of ED.  Who knows when that will happen but I am supportive of helping him through that.  It hurts me more to see David sad and frustrated.  I am OK.  I can handle it. I want to see a smile on his face again.  Anyways, I ordered David's vacuum pump (the doc prescribed) so when that comes in the mail, we'll see.  I'll keep reading and posting for now as it does help to see how you all are doing. 

To everyone who reads this and posts....Keep fighting!  I am!  Cynthia


WHOFAN
Husband: 53 yrs. old
Diagnosed 3/12/07

PSA: 8.12

T Stage: T1C - GLEASON: 7 (3+4)

Da Vinci performed 6/4/07 at UCLA with Dr.Robert Reiter.
Staging after surgery: T2B
Cancer contained in capsule. Negative surgical margins. All looks good
for now. First post-surgery PSA scheduled September 19th.
Catheter out 6/13/07
Live in Los Angeles with wife and 5yr old daughter


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 6/20/2007 12:33 PM (GMT -7)   
Sounds good Cynthia:  I had to ask my wife to cut me a little slack too, during about week two.  She was all set to go to the mountains and do lots of other things the docs suggested would be possible witihin a short time frame.  She was trying to give me a little push, which was necessary at the time.
I was ready to hit the recliner -- period.   And I'm glad I did.
As time goes by things will get better.  As far as the ED thing, I'm trying to be patient there too.  It has been five months now and I miss my old favorite toy.  It's broken and I hope not forever.  I miss the spontaneity that was once part of our sex life.  The thought of taking a pill, pumping the pump, injections etc. makes it sound like a real production number.
If I had to guess, I would suspect that the last thing a lot of guys at your husband's stage would want right now is a rip-roaring erection or orgasm.  I was very leery at that stage because of how I felt down there.
Anyway.  We'll all get there.
I was laughing the other night thinking that if we ever all meet somewhere, we may as well all be naked, as we've certainly shed our veils in this forum!  No secrets here, among the men or women!  Maybe a meeting like that would create some vertical action for the fellas!! LOL
What a thought.  We'd probably get arrested.  I'll play the piano, but we'll need someone to handle the towel concession.  And please bring all of your unused opiates.  I will see that they are promptly and properly disposed of BZZZZZZZZZZZZ!!
HA HA HA!
Best ta ya.

54 years old

PSA = First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06 (6 out of 8 cores positive), both lobes, Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.

First post-surgery PSA -- Undetectable, 2/20/07

Post Edited (PianoMan) : 6/20/2007 1:50:24 PM (GMT-6)


josal
New Member


Date Joined Nov 2006
Total Posts : 11
   Posted 6/20/2007 1:04 PM (GMT -7)   
 Hi  I have not posted in a while. I too leaked and dribbled at first then it got better as time went on. After 5 weeks I went back to work and the dam broke loose. After being up and active at work for 3 or 4 weeks everything started to improve ,pads got smaller and smaller. Shortly after my 6 months check up I stoped using pads all together with no driping. So hang in there with time things will improve.
  JOHN



 54 year old robust male
 PSA pre-biopsy 6.7
 Gleason 3 + 3
 Stage T1a
 DaVinci robotic laproscopic prostatectomy 10/11/06 Rochester NY
 post surgery pathology:  malignancy in less than 1% of samples
 first post-op PSA 1/07 undetectable
 second post-op PSA 4/07 undectable


WHOFAN
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 6/20/2007 2:01 PM (GMT -7)   
Thanks Jon and Tom...
 
PATIENCE.....ahhhhh such a virtue.  Really is.  What did people do before they had these forums and were going through such traumatic medical experiences? Anyways, today David called to tell me he took a decent walk in the neighborhood.  I was happy to hear that.  We live with the fear that things will never be normal again.  Well, I guess things will never be normal again after this experience but what we mean is that there is a fear that the continence will not return.  That everyone says "hang in there...it will get better".....but, what if it doesn't?  The eternal optimist I am!  (LOL)  But, we need to have hope (faith?) that things will get better.  I need to..for David's sake.
 
Cynthia
WHOFAN
Husband: 53 yrs. old
Diagnosed 3/12/07

PSA: 8.12

T Stage: T1C - GLEASON: 7 (3+4)

Da Vinci performed 6/4/07 at UCLA with Dr.Robert Reiter.
Staging after surgery: T2B
Cancer contained in capsule. Negative surgical margins. All looks good
for now. First post-surgery PSA scheduled September 19th.
Catheter out 6/13/07
Live in Los Angeles with wife and 5yr old daughter


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 6/20/2007 3:29 PM (GMT -7)   
HE HAD THE CATHETER OUT ONLY SEVEN DAYS AGO!!!  And the surgery only 16 days ago!
 
When I was at that stage, I was leaking, squirting and gushing like crazy.
He's got a way to go with this and like I said before, at about four weeks, when the internal swelling goes down, he may have a temporary relapse of incontinence.  The swelling actually helps with the control, according to the COH triage nurses.
So please, don't stress so much over this incontinency issue-- he's supposed to be incontinent right now.  I was told it would be six weeks until  I regained bladder control and the estimate was right on.
 
I understand his fear of never getting the control back etc., but this is a bad time to be worrying so much about incontinency-- way too early.
 
I'm curious though...Why are they waiting three months before giving him his first post-op PSA test?

54 years old

PSA = First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06 (6 out of 8 cores positive), both lobes, Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.

First post-surgery PSA -- Undetectable, 2/20/07


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 6/20/2007 6:49 PM (GMT -7)   
Whofan, You may not want to hear my story since I'm one of the worst leakers here (KW's Journey). But just want you to know that no matter how long you leak you are not alone. You can get back to living. It takes adjustments and it can be very agravating at times. But this is what we have to deal with. I keep telling myself at least the cancer is gone.

Good Luck, KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks 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 8th Started Detrol LA to see if it helps with the leaking?
    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.
   


WHOFAN
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 6/21/2007 4:23 AM (GMT -7)   
Hi Pianoman,
THAnks--like I said, I think it will all be OK. (I hope).
BTW- the doctor said that they normally don't do psa tests until 3 months out to make sure it is an accurate read...made sense to us. I see you got yours 1 month post -op. I will ask about that.

***ALSO---I did a different post on this but David woke up this morning with some blood in his urine (peeing in the toilet) and it appeared to be red-ish (not brown). We'll call the doctor today but have any of you experienced that? 2 weeks post-op?

KW- Hang in there---it has been a ride for you! How do you stay positive?
WHOFAN
Husband: 53 yrs. old
Diagnosed 3/12/07

PSA: 8.12

T Stage: T1C - GLEASON: 7 (3+4)

Da Vinci performed 6/4/07 at UCLA with Dr.Robert Reiter.
Staging after surgery: T2B
Cancer contained in capsule. Negative surgical margins. All looks good
for now. First post-surgery PSA scheduled September 19th.
Catheter out 6/13/07
Live in Los Angeles with wife and 5yr old daughter

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