Newbie anxious wife-Questions on burning, pressure, constant urge to "go"

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anxiouswife
New Member


Date Joined Apr 2008
Total Posts : 18
   Posted 4/14/2008 6:22 PM (GMT -6)   
 I am the wife of a 61 year old who had prostate surgery on 26 Feb. Things have not been going well since the get go and I have become so anxious I am seeing a counselor and may consider medication for anxiety/depression. I am trying to be strong for my hubby but feel so frustrated with lack of answers. Hoping someone out there can help and ease my concerns.
 
My husband had a biopsy on 4 December due to an elevated PSA of 4.1. The biopsy caused a sepsis infection and he was in intensive care for a week and almost died.  It was so awful but that is another story. The day he returned home we got the call saying he had prostate cancer. I believe it was a T1c but the pathology showed it was a stage II (pT2c NX MX). He had his PSA checked on his 6 week follow up and it was .02 This worried me as the nurse said prior to the results that they want it to be .01 or less. It was an ultra-sensitive test. I see here on these boards that most men have .0 or .01 after surgery. Reason to worry?
 
My husband is still incontinent 7 weeks post surgery. He has been pretty much dry at night fro the first few days post surgery and mostly dry sitting down, other than that, not dry at all. He is suffering from a bad rash and nothing seems to help. It is driving him crazy.  He tried Destin and other creams but they all seem to rub off in the pad.
 
His other very major concern is a burning in his penis. He thinks it may be from the urine sitting in the tract.  He has tried drinking a lot and drinking just enough to get by. Nothing helps. He also has pressure and the feeling to constantly go all the time. He says it is exactly the feeling he had before surgery and that it has not changed at all. Has anyone else out there experienced these symptoms? We really need help with this as we have no quality of life. He cannot work because of the constant burning and urges and the rash. He cannot seem to concentrate. We do not do anything, just sit at home hoping these symptoms will go away. This is not living. I can't stand to see my loved one like this. We spoke with the nurse/doc about it and they seem unconcerned.  They did test his urine for infection. the nurse called back and said there was some slight bacteria and gave him Cipro.  No relief with that. The nurse didn't really seem to think there was enough bacteria to cause the symptoms. He tried peridnium(sp?) for the burning but that did not help either. He does walk on our treadmill every day but not outside. We called our doctors nurse today about all this and no return call today.
 
He also has ED and we just started using Cialis and were sent a pump. I was afraid to try the Cialis because when he was in intensive care with the sepsis he developed congestive heart failure. It is better now and the doc says he is not sure if it resolved itself or if the med(coreg) is making it better.  So I was hesitant to try it but he really wanted to and with all he has been through I agreed. No luck yet. This is all so discouraging. How do you get through it? This wonderful man of mine needs some relief. I do not know how to support him best as he is so miserable, yet tries to keep on his happy face. God bless him.
 
If any of you out there can give us any suggestions, comments or support we would so greatly appreciate it. Really wondering if others have had these problems, especially the burning, pressure and the urgency. We would appreciate enormously any feed back you have. Thanks so much.-Anxious Wife

bluebird
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Date Joined May 2006
Total Posts : 2542
   Posted 4/14/2008 6:54 PM (GMT -6)   

  tongue Hi ~ Anxious Wife and Loved Ones,

 

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bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/14/2008 6:58 PM (GMT -6)   
  tongue Hey Newbie!! Anxious Wife and Loved One,
We are truly here to support you and encourage you and share our paths with you.  You have reached out with open arms and HealingWell members will be reaching back to you.  So be ready... because you will be surrounded by strength... that you and your honey will pull from and you will get through this.  Keeping you close in thoughts and prayers as you search for answers.
In New Friendship ~ Lee & Buddy 

mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

4th PSA 2-13-2008 (23 months) Less than 0.1 Non-Detectable :)


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 4/14/2008 7:09 PM (GMT -6)   
Anxiouswife,
Your husband may have developed a urinary tract infection which may explain (among other things) the symptoms you described. This happened to me some weeks after surgery and had the same symptoms you are describing. Restricting fluid intake and thus urination makes the urine much more acid and can make the burning and discomfort a lot worse. An alkalinizer may help neutralize the urine if this is the case. I would also look at the UTI possibility again. Sometimes the medical profession can be pretty dismissive of some symptoms. Tell him to hang in there, it does get better.
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07----4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 4/14/2008 7:42 PM (GMT -6)   
Sounds like a urinary tract infection.....check with the urologist and see if antibiotics are in order....and hang in there with the incontinence......7 weeks is not a long time.  I am not 5 months into it and still on one pad a day.

Danman Bob
Age 57
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14
Biopsy result - 9 of 12 sticks showed cancer
Despite high Gleason score, cancer was confined to the prostate
Possible post-surgery radiation therapy...decision likely in late April 2008, depending upon PSA at that time
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of March 2008)
Began using Viagra 3 times a week December 2007 to stimulate blood flow
Began using Osbon Erec-Aid Esteem manual pump for therapy mid-February 2008
Will probably begin using bimix injections in addition to Viagra and pump in May 2008


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 4/14/2008 7:50 PM (GMT -6)   
I agree. a UT infection would fit your descriptions. 7 weeks and dry at night and sitting down, is pretty good. The rash...is it under his penis? on his scrotum? where his penis rubs the pad? It is probably from the wetness. have you tried a good water barrier? Good old zinc infused diaper rash ointment is going to be the best. Better than vaseline. Add ointment every time he goes to the bathroom. If he already has a rash, he really needs to attact this problem. Also, is there simply too much friction or pressure and the pad rubbing? You might try the belted pads - not the ones that go in briefs. These are less constricting and might be more comfortable.
Good luck.
47 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6      (Biopsy 3/07 just suspicious)
10/07 PSA 5.06   (Biopsy 11/07  1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC  www.roboticoncology.com
Saved both nerve bundles.
Path Report:  Stage T2cNxMx
-Gleason (3+3)6
-totally contained to prostate,
-10% involvement in L & R Mid lobes
PSA 0 at six weeks
Pad free on March 14 - (10 weeks.)
ED - Take 100mg viagra every night.
Totally usable erections at 10 weeks.
 
 


anxiouswife
New Member


Date Joined Apr 2008
Total Posts : 18
   Posted 4/14/2008 8:29 PM (GMT -6)   
Thank you all for the support and replies. We did investigate a urinary tract infection and and a urine sample was taken. Nurse said there was some bacteria but did not think that was the cause of burning. Hubby was given Cipro but has had no effect. His rash is on his scrotum. He uses a zinc ointment all the time, except at night as he is dry. It does not seem to work and wears off quickly. He has been trying to "air" it out the last few days but it is still very red, not quite as sore. We are trying to stay upbeat and appreciate all your support. It is a relief to have found this board to share with. Many thanks to all who posted so far.

Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2290
   Posted 4/15/2008 10:00 AM (GMT -6)   
anxiouswife said...
He had his PSA checked on his 6 week follow up and it was .02 This worried me as the nurse said prior to the results that they want it to be .01 or less. It was an ultra-sensitive test. I see here on these boards that most men have .0 or .01 after surgery. Reason to worry?
 
Prostate cancer experts consider anything less than < 0.1 as a "zero" or "non-detectable".  The standard test is accurate to the nearest tenth and 0.1 is the lowest detectable value.  The ultra-sensitive test is accurate to the nearest hundredth, and 0.01 is the lowest reported value.
 
Whichever test you use, anything below 0.1 is not considered by most experts to be of concern and is just "noise" or test variation.  I tend to be a worrier and opted for the standard test because I didn't want to be unnecessarily anxious. 
 
Take care and hang in there...Tim


Age 59  PSA velocity quadrupled in 1 yr (0.6 to 2.5) 
DRE neg  1 of 12 biopsies positive (5%) 
Open surgery June 2006 
Cancer confined to one small area of prostate
Gleason 5  PSA's undetectable
 


StuckInTraffic
New Member


Date Joined Mar 2008
Total Posts : 14
   Posted 4/15/2008 11:06 AM (GMT -6)   
Anxiouswife
I had my surgery on Feb 27, 2008. Just like your husband, I was dry at night or while sitting as soon as I stand up it's like an open faucet. I too had the burning issue and the urge to go all the times because of the constant urine in the penis. The catheter and constant leaking caused major irritation at the head of the penis and the burning sensation. In my case, the burning sensation gradually subsides with the healing of the penis and getting used to the condition.
For the first 6 weeks there was little improvement in the leakage, I just started to see noticible improvement last week. So hang in there, continence recovering is a long process.
Age: 48 (2008)
DRE normal, PSA 3.1
08/28/07: Diagnosed cancer, T1c, Gleason 3+3=6
02/27/08: Laparoscopic Rad. prostectomy @ Anaheim Kaiser, 4 hrs.
              Both nerve bundles spared
              Pathology Report: Tumor confined w/in prostate
              T2c, Gleason is 3+3=6
              Surgical margin: Focally involved by tumor in right apex
03/10/08: Catheter removed. Drip, drip, drip, drip...
04/07/08: 1st PSA <.01 :)
              Dripping starts to slow down :)
              ED: Started Levitra, no response yet. 


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 4/15/2008 11:38 AM (GMT -6)   
Hey Anxious Wife,

Sorry about your husband's pain. Hopefully its something that will clear up in time but needs to be watched.

For the first 3 months after the catheter came out, I had various pains and strange sensations. It was difficult to distinguish between the urge to go and the pains of healing. The "bladder full" and the "go right now" signals felt almost the same. Eventually, as the healing progressed, it became easier to feel the different signals and control things. Things got really disturbed down there during surgery and it just takes time to get things right.

Now at 16 months after surgery everything feels like it did originally. Control is automatic and I don't even think about it anymore.

I hope he gets better soon...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
"Patience is essential, attitude is everything."
 
 

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