post prostactectomy recovery

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BB54
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 8/10/2008 11:56 AM (GMT -7)   
i am now 5 weeks post da vinci surgery
 
i am still experiencing lots of bladder pain and also on urination..this was really bad whilst the catheter was in place, excruciating during a bowel movement, and the catheter tube really irritating the tip of the penis (doctor says this is referred pain)
 
every few days, particualrly after moderate exertion i have flu -like sypmtons, body lethargic and achey, the consutlant urologist dismissed all this and just said 'go for it' meaning exercise and do sport as much as i like, yet, i STILL feel pain from the incisions, and am worried at the slow rate of apparent healing; they also tell me i dont have a urinary infection
 
all the pre-op talk was of quick recovery, but i still feel only 50 % 
i would be grateful to hear other's experience, as i constantly read how so many people experience just about no post op problems or pain (except IC and ED)

oct 07 psa 6.4
jan 08 biopsy  1 out of 12 cores, 3+4 T1/2a
pre-op psa 4.1 ??? never received an explanation
age 54
7/5/08 da vinci rrp
7/14/08 catheter removal
IC 100% after 3 weeks
ED nothing yet, but have not started drugs
path report:  clear margins


Navy corpsman
Regular Member


Date Joined Aug 2008
Total Posts : 61
   Posted 8/10/2008 1:03 PM (GMT -7)   

Ben-

We are about the same time out from surgery.  As you probably are aware, each persons recovery is different.  From what I am able to gather, the 3 main things to keep in mind while you are recovering are adequate rest, moderate exercise, and proper nutrition. 

My recovery has been slower than expected and I had significant abdominal pain requiring medication for about a week after surgery.  I feel tired all the time and sleep about 2-3 hours more a day than I did before surgery.  I think the quick recovery talk is misleading and unhelpful.  An RRP is major surgery and the doctors should give a range of between 2-8 weeks.  If you are getting proper rest, nutrition, and exercise it is just a matter of time before you are back to 100%. 

-John


Age:  44
We have a family history of PCa.  My Dad and uncle died from it at 65 and 53. My PSA velocity increased in the last 2 years and I had to talk my GP into refering me to a urologist.
Biopsy results:  5 of 11 cores positive, all 30%. Gleason 6. T1c. PSA 2.53  Date of biopsy 15MAY08.
Open RRP at Johns Hopkins with Dr. Partin on 09JUL08.
Pathology report:  Gleason 6, pT2, neg. margins, 0 lymph node and seminal vessical, organ confined, I lost 1 nerve bundle and 22 lymph nodes.
As of today, about a month after surgery, I feel at about 80%. Urinary control seems to be improving. Little Elvis has taken a nap and has not awakened yet. I hope when he wakes up he is well rested because he is going to get one heck of a workout.
 
 


James C.
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Date Joined Aug 2007
Total Posts : 4462
   Posted 8/10/2008 1:24 PM (GMT -7)   
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Dirtmover
Regular Member


Date Joined Apr 2008
Total Posts : 158
   Posted 8/10/2008 4:28 PM (GMT -7)   

hello guys , i almost hate to post but here goes , you guys are right in the respect everyone heals diffrently, i was back to work at 3 weeks post op and at 4-5 weeks almost feeling as if i didnt have the proceedure, with of course the exception of side effects  (e.d. and incontinence which is still better than i anticipated) i was back on my harley at 6 weeks no prob . the only real thing that held on was the perenial dissscomfort which susided in 6 weeks or so . please dont take all of this the wrong way i have had a positive experience and completely beleive it is the skill of your surgeon which predicts your outcome and i would say age has abit to do with it as well...............dirt

 


Diagnosed November 2007   (43 years old )
PSA 3.9 / Gleason 6 / TC1 6 cores 1 shows 25%
Sugery scheduled 5/29/08 - City of Hope - Dr. Mark Kawachi
 "First show of the day"
 and now for the new ive been waiting for
 FINAL PATH REPORT:gleason upgraded to 3+4 T2c bilateral disease,tumor involvment 5%
extra prostatic extention:absent
seminal vesical invasion :absent
pathological staging:pTNM pT2 ORGAN CONFINED
margins free of carcinoma
usable erections ;6-6-08 with little blue pill
continence; 1 pad a day, dry at night


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 8/11/2008 7:31 AM (GMT -7)   
BB,
I too have been out of surgery 12 weeks today. I had some dull pains in the groin area initially, but they soon subsided. I have had no pain of any sort for weeks. I would encourage you that the remaining pains should soon disappear. I am still experiencing some IC, and I am dead in ED. But, all that being said I am still hopeful for a complete recovery moving forward. I am grateful to have the treatments done and behind me, but take nothing for granted moving forward, but am happy to be where I am for the moment. From everything I have learned from others, these kinds of things are not unusual. I have two separate friends who both had radical surgery years ago and they are doing fine. They recount the same kinds of things we are going through now, but they are in their past history. I hope some day that is true with all of us. Blessings. RB
Age 61
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA .04

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4813
   Posted 8/11/2008 8:01 AM (GMT -7)   
i have flu -like sypmtons, body lethargic and achey
 
Are you sure you aren't running a tempature...
Age 53   - 5'11'   205lbs
Overall Heath Condition - Good
PSA - July 07 & Jan 08 -> 1.3
Gleason - 6
(biopsy done March 4, 2008-> 2 of 12)
 
06/25/08 - Da Vinci robotic laparoscopy


BB54
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 8/11/2008 8:15 AM (GMT -7)   

Hi all

many thanks for your comments; although the fact that so far that no one seems to have experienced the same slow recovery rate worries me further; i am young and fit, so was not expecting this.

i agree all the aches and lethargy must be caused by having a temperature, but i seem to be trapped in a cycle of feeling slightly better for about 4 days, upping the physical activity (and we're only talking about an hour's walk here) then suddenly feeling weak, followed by renewed blood/debris loss, followed by an upturn again...for the last 3 days i have been virtually laid flat, and today have had very obvious blood and debris loss on each trip to the wc.. so think the whole thing is bladder related ... has no one else experienced this ?

it also concerns me that i can still feel some pulling and discomfort from the incision sites..again enough to tell me not to try to be too active, despite what the surgeon may say


oct 07 psa 6.4
jan 08 biopsy  1 out of 12 cores, 3+4 T1/2a
pre-op psa 4.1 ??? never received an explanation for this lowered figure
age 54
7/5/08 da vinci rrp
7/14/08 catheter removal
IC 100% dry after 3 weeks
ED nothing yet, but have not started drugs
path report:  clear margins


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4813
   Posted 8/11/2008 9:57 AM (GMT -7)   
I would seek medical attention regarding the blood loss...

I'm seven weeks post surgery and do feel "pulling" from the incisions sites when I lay on my side while going to sleep....
Age 53   - 5'11'   205lbs
Overall Heath Condition - Good
PSA - July 07 & Jan 08 -> 1.3
Gleason - 6
(biopsy done March 4, 2008-> 2 of 12)
 
06/25/08 - Da Vinci robotic laparoscopy


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 8/11/2008 11:46 AM (GMT -7)   
BB54, it's time to go back to the doc, either your Urologist or the Surgeon.  There seems likely to be something wrong somewhere, from the debris, blood and illness so long after your treatment.  It may well be one of the 'itis'is'- in the bladder, urinary tract, or abdomen.  In any case, it's time to see the doc, and to be more insistant that they take you and your complaints more seriously. A couple cheap bacteria cultures might show the cause.  Let us know the outcome, ok?



James C.
Co-Moderator- Prostate Cancer Forum

Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
10/15/07 ED- begin 50mg Viagra and Vacurect pump nightly, Fully continent
1/14/08 Caverject started/stopped, aching. 2/24/08 .5ml Bimix started-success
7/31/08 ED- Viagra, pump continues, no response- Trimix .10ml x 2 weekly continues
Post Surgery PSA's:  3 mts-0, 6 mts.-0, 9 mts.-0.


Navy corpsman
Regular Member


Date Joined Aug 2008
Total Posts : 61
   Posted 8/11/2008 4:55 PM (GMT -7)   

Ben-

Sounds like you need to see a doctor.  If your doctor does not address your concerns the way you think they should then fire them.  Do not forget that some doctors are a lot better than others.

- John


Age:  44
We have a family history of PCa.  My Dad and uncle died from it at 65 and 53. My PSA velocity increased in the last 2 years and I had to talk my GP into refering me to a urologist.
Biopsy results:  5 of 11 cores positive, all 30%. Gleason 6. T1c. PSA 2.53  Date of biopsy 15MAY08.
Open RRP at Johns Hopkins with Dr. Partin on 09JUL08.
Pathology report:  Gleason 6, pT2, neg. margins, 0 lymph node and seminal vessical, organ confined, I lost 1 nerve bundle and 22 lymph nodes.
As of today, about a month after surgery, I feel at about 80%. Urinary control seems to be improving. Little Elvis has taken a nap and has not awakened yet. I hope when he wakes up he is well rested because he is going to get one heck of a workout.
 
 


Jonar
New Member


Date Joined Mar 2008
Total Posts : 9
   Posted 8/11/2008 6:22 PM (GMT -7)   
I started walking 4 miles a day once the catheter was out. I really think this helped my healing and incontinence issues. Something about that walking motion.
Age 55
Routine physical 9/18/07 showed PSA to be 13.5.
Diagnosed PCA 11/14/07. Biopsy 2 positive cores out of 12.
Gleason scale 4+3=7.
Da Vinci prostatectomy on 1/30/08.
Negative lymph nodes, negative margins, positive seminal vesicles.
Post op Gleason 4+4=8. Stage T3b.
Dry after 4 weeks.
First Post Op PSA at 4 weeks = 2.6.
Second Post Op PSA at 7 weeks= 2.1.
Started on Lupron 3/21/08
PSA on 6/19/08 = 0.1
Second Lupron injection on 6/19/08
Will begin IMRT in the fall.


casteli
New Member


Date Joined Aug 2008
Total Posts : 2
   Posted 8/11/2008 7:43 PM (GMT -7)   
My recovery was long and pain full five years ago. I returned to work after more than a month.
For the penis tip I used cream all the time to kip it from drying. I also exercised the pelvis muscle for IC.
Also helps to stop several time wile peeing, as an exercise.
Radical Prostatectomy at 46(2/18/2003)
Post-op GS-8, negative margins, 0-PSA
Radiation therapy 32 sessions (9/2003)
Start Lupron 2/2006, after PSA-0.6
PSA<0.01 since then...
normal activity, positive, got a lovely dog,
loving family.

casteli


BB54
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 8/23/2008 9:43 AM (GMT -7)   
in way of an update on my original question, it turned out i DID have an infection..pseudomonas bacterium picked up at the hospital ! poss at time of catheter insertion...i feel therefore it was this that has slowed the healing process; unfortunately despite lots of antibiotics it is still there, being notoriously difficult to shift...i am also (6 weeks after surgery) getting erratic bleeding on intiial urination, which may or may not be the infection...if not, then there has been some vague talk about some further lightweight surgery...i could well do without that thanks !
oct 07 psa 6.4
jan 08 biopsy  1 out of 12 cores, 3+4 T1/2a
pre-op psa 4.1 ??? never received an explanation for this lowered figure
age 54
7/5/08 da vinci rrp
7/14/08 catheter removal
IC 100% dry after 3 weeks
ED nothing yet, but have not started drugs
path report:  clear margins


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 8/24/2008 4:00 AM (GMT -7)   
BB54, Just hang in there and let your body try to heal. Do not try to rush things. Let your body talk....and listen. We are all different. I think the Robotic guys seem to forget how major the surgery was since the do not have the one large reminder looking at them in the mirror evey morning. Just slow down and pace yourself. I am glad to hear your IC has cleared up. What a blessing that is.
Just go slow.
KW
    43 at Dx and Surgery
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    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.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
     

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