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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/3/2010 8:58 AM (GMT -6)   
Been home from hospital 5 days now.  Scheduled to see surg on Tuesday to have 35 staples removed.  They are a bit aggervating at this point. Not much pain in incision area, a little around the new stoma, a lot internal where the intestines was cut appart, and re-attached, sometimes hurts down to my back.
 
The new stoma is working fine, wife has the "gear" down to a science.  Right now there are 2 stents coming out of the stoma, will be easier to deal with when they are gone, another week i think.  during the day, i empty the bag every 2-4 hours, and at night we hook up to std. cath night bag which i am well use to.
 
sleep situation slowly improving.  gone from horrible to bad. lol.
 
wife, kids, all been real  troopers through this, couldn't make it without them all
 
weird thing started 2 days back, every time i empty bag, or turn on water faucet, my penis feels like its pressurizing for a pee, and i have all the sensation of urgency and a full bladder.  Impossible, I tell myself, as there is no longer any source of input to the bladder, and it was emptied and cleasned before sealing off.  Not unless some nerve signals revived with confused signals???  will ask doctor of course.
 
thats about it.  this is slow progress, doing the best i can.  least i am back to where i can open the wine bottles for my wife and have her coffee made in the morning, things she loved me doing for her.
 
later, brothers and sisters,
 
slowly making it back
 
 
david in sc

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 486
   Posted 10/3/2010 9:06 AM (GMT -6)   
David; It's great to hear that you are making such fantastic progress. We have all followed your journey and had you in our thoughts and prayers. Keep up the brave fight my brother.


k
Age 57 at Diagnosis
May, 09 PSA 2.26
June, 10 PSA 3.07 Free PSA 18%
Met with Uro, DRE +
June, 10 Biopsy, 7 of 12 cores, up to 60%, 4+5=9
July 21, 2010 - RRP
Nodes negative
Vesicles negative
tumor contained in capsule, still 4+5=9
perineural invasion extensive
Aug 5, 10 catheter out
Sept 3, 10 PSA - 0.00 (great big whew)
As of 9/3/2010, I'm 99% continent - only occasional stress incontinence !

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 10/3/2010 9:35 AM (GMT -6)   
David: Sounds like you are slowly getting you life back. I am so pleased that you are getting better. Peace to you my brother.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/3/2010 9:38 AM (GMT -6)   
thanks, k and jeff, slow journey, still fighting my way back to the surface
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

April6th
Regular Member


Date Joined May 2010
Total Posts : 264
   Posted 10/3/2010 9:46 AM (GMT -6)   
Glad to hear you are progressing with the recovery.

Best wishes for the remainder of your recovery.

Dan
Here are some of my stats:
Age:54
Father diagnosed with PC at age 72 - wasn't contained to prostate when found in 1992.
My PSA rose from 3.2 to 5.1 over the course of 1.5 years with Free PSA at 25% for the last two tests.
DRE showed no evidence of tumor but Uro thought my prostate was a little large for someone my age
PCa diagnosed 4/6/10 after biopsy on 4/1/10
1 out of 12 biopsy samples was positive with 5% of biopsy sample cancerous
Gleason 3+4
Da Vinci surgery on 6/1/10
Pathology report shows cancer confined to prostate and all other tissue clean
PSA tested on 7/15/10: Zero Club membership card issued (trial membership with 90 day renewal)

DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 732
   Posted 10/3/2010 10:11 AM (GMT -6)   
Dave,

Good to hear of your progress and your sense of humor through all the discomfort.

My wife says it's like having a phantom bladder. Sounds weird, but hopefully it's tolerable.

DJ

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1160
   Posted 10/3/2010 10:19 AM (GMT -6)   
Yeah, they obviously didn't remove your sense of humor. Good thing.

Glad to hear you're recovering well, David. Sounds like your well on your way to a normal life. That's really good to know.
Age 55

PSA:
8/09 2.69
7/10 4.00
8/10 4.11

Biopsy 8/10
Three of 14 cores positive: 10%, 60% & 80%
Stage T1C
Gleason 6

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3743
   Posted 10/3/2010 10:50 AM (GMT -6)   
Good morning Dave! I found this interesting:
"weird thing started 2 days back, every time i empty bag, or turn on water faucet, my penis feels like its pressurizing for a pee, and i have all the sensation of urgency and a full bladder. Impossible, I tell myself, as there is no longer any source of input to the bladder, and it was emptied and cleansed before sealing off. Not unless some nerve signals revived with confused signals??? will ask doctor of course."

After these surgeries, I think there are LOTS of "confused signals"..For instance the urinate and ejaculate wires seem to get easily crossed or connected backwards..Also, the ED problems some men have or do not have...Maybe it's more than the nerves that play a part in this. Many blood vessels are cut and tied off during RP and I bet these vessels are just as important to having erections as the nerves are...

Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 10/3/2010 11:16 AM (GMT -6)   
Hi David. Glad to read that you seam to be doing well and that the worst is
finally behind you. Wishing you all the best as you move forward in your journey.
You are very lucky to have such a great family to support you. May your
healing be quick and complete.
 
Mag

Born 1936
PSA 7.9, Gleason Score 3+4=7, 2 of 8 positive
open RP Nov 06, T3a, Gleasons 3+4=7, Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; at SRT Start=0.1, Salvage RT completed (33 days-66Gy) 19 Dec 08
PSA: in Jan 09 =.05, all tests to date (Jul 10) <.04

Squirm
Veteran Member


Date Joined Sep 2008
Total Posts : 744
   Posted 10/3/2010 1:11 PM (GMT -6)   
Hi David,
I'm glad to see things are progressing at an "expected" rate.

" Not unless some nerve signals revived with confused signals??? "

I bet this is similar to a phantom pain, when the brain interprets nerve signals that are no longer there. I bet that decreases in time.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/3/2010 1:26 PM (GMT -6)   
thanks folk, appreciate the thoughts

physically, this has been the hardest comeback for me from all my surgeries

only death will take away my weird sense of humor, don't want to laugh too much, it truly hurts

dj - i am guessing some kind of phantom nerves thing going on too. it took day 8 after surgery for that to start, but now, every single
empty of the bag, which mens open a valve at the bottom of the bag that hangs off the stoma. so there is no physical connection to my bladder, not even remotely at this point. its annoying, but not painful.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 10/3/2010 3:15 PM (GMT -6)   
Following hard on the heels of horrible then bad, comes bearable and then finally good. The path to recovery is underway and it is great to read of it. It is no wonder your body is in turmoil...... it has endured a great deal. Marvelous to read that you can give back a little to that wonderful wife of yours ....... these are the little things that are important between two people and will make you feel helpful again. Keep your spirits up and on the road to recovery David, a few steps at a time. It won't be long before you're there.
take care,
Bill

Post Edited (BillyMac) : 10/3/2010 3:18:22 PM (GMT-6)


afterglo
Regular Member


Date Joined Mar 2008
Total Posts : 72
   Posted 10/3/2010 3:16 PM (GMT -6)   
I've been following your posts, David, and am so glad your surgery is over, and that they didn't take away your 'funny bone'. Best wishes for a fast recovery. yeah
Age: 71
PSA: 5/09 2.4, 11/09 2.8, 2/2010 3.85
Gleason: 3+3=6
DRE: normal
Biopsy results: 4 cores cancerous (left side) 1 suspicious and 1 spoiled (right side) 4 benign
Stage: T1 or T2
Volume: 5/09 38cc, 1/2010 51cc
Family history: Father died at age 65 of a combination of prostate and lung cancers

mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 10/3/2010 5:22 PM (GMT -6)   

Hi David,

By the sound of it you're starting to better and getting over your last surgery. Great news on the "other" front. :-)

Keep getting better. Hope to hear from you soon.

My best wishes for you,

Mike


vam4710
Regular Member


Date Joined May 2010
Total Posts : 89
   Posted 10/3/2010 5:25 PM (GMT -6)   
Hey Dave.... I haven't been on lately, this is the first time in about a month actually.  Waitng 2 more weeks for my first PSA..... SO..... I was sitting here and all of  sudden, you popped into my head so I thought I'd check in to see how your doing.  Glad to hear that everything went well and that although things are going slow, I'm happy that they are going in the right direction for you finally.  Keep the faith brother... hope you have a speedy recovery!
Diagnosis June 1, 2010 @ age 50
PSA 1.7 Sept. 2008
PSA 2.14 Sept. 2009
PSA 2.75 April 2010

May 11, 2010 - DRE Negative - PCA3 Test
May 18, 2010 - PCA3 Results 39 (cutoff = 35)
May 25, 2010 - Biopsy 1 of 12 cores positive; Gleason 3+4 = 7 25%; Stage T1c
June 04, 2010 - CT and Bone scan - All Negative
July 07, 2010 - Da Vinci Robotic Lap. Surgery

PATHOLOGY
Tumor involvement - 15% both right and left halves
Gleason Down graded to 3+3=6
Seminal Vesicles - Negative
Lymph node - Negative
Sub capsular perineural Invasion - Present
Bladder Neck Margin Positive (right posterior) - Microscopic invasion-1mm Focus
pT3a-N0-MX

Incontinence – Dry after 6 weeks post op!

ED - Total flat tire.... but there is signs of life!

First PSA scheduled for 10/14/2010


Northern NJ

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 10/3/2010 6:25 PM (GMT -6)   
Dave - glad to hear you are continuing on your progress
- sorry about the phantom pain
- I guess we are all products of our childhood training ( was faucet trained ) - ie. like pavlov's dog and the bell ... or when people mention godiva chocolate ....
:-)

hugs
BRONSON
Age: 55 -gay with spouse, Steve - live in Peteborough, Ontario, Canada
PSA: 10/06/2009 - 3.86
Biopsy: 10/16/2009- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/2009
Pathology: pT3a- gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
Post Surgery-PSA: April 8, 2010 - 0.05 -I am in the ZERO CLUB
Sept 23, 2010 -0.05 - again -hoorah !

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/3/2010 6:39 PM (GMT -6)   
vam - good luck on your upcoming psa test. my next one is november, very critical for me, as there was upward tick for me last time, however small.

thanks bronson, billy beans and the rest of the gang.

today - was able to eat and keep inside me, the most food i have eaten in two full weeks. trying to keep me protein rich. btw, ensure shakes suck big time. but had some all day on the stove organic chicken and dumplings with spincach, really settled well with me.

looking forward to having these horrible staples. while this incision is jagged, angled and 9 inches long, still 2 inches smaller than the 11 incher i have higher up when my gall bladder was removed in 1981. can you guys imagine that. now, i believe you only end up with two tiny holes for a gall bladder. i was in the hospital back then for almost 10 days on that. things have improved

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 10/3/2010 8:20 PM (GMT -6)   
Up and at it David! I'll sleep better tonight knowing how well you're doing. Thanks for reporting in with the update.

Good on you!

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 10/3/2010 8:30 PM (GMT -6)   
David, I'm glad you are doing well and on your way to full recovery.

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 10/3/2010 8:51 PM (GMT -6)   
glad to hear things are going from horrible to bad. One of my best buddies recently got a stoma and after two-three weeks ,or so, he was well on his way to feeling "normal" again. I hope that is the case with you.
On the urge to pee, I have given that some thought after it happened to me on my catheter stints. Ok, I am on a cath with no urine to speak of in the bladder and every time I turn the faucet on in my bath room I got a stong urge to pee. When I empty the leg bag in the toilet same thing but not as strong. This got me thinking because I also thought it strange. So this is what I came up with. The bladder and other organs must be able to be trained to outside stimuli. What we think are sensations that can only be generated from internal stimulus like urine in pressing on the external sphincter obviuosly can be triggered by things we do. You still have all the equipment, just an empty bladder and your sphincter is responding to what has allways has.
Anyway that's the only way I could explain that to myself. 
I hope you a bad nites sleep or let's go crazy and hope for a medium bad nite.
Ron

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6949
   Posted 10/3/2010 9:36 PM (GMT -6)   
David,
Being the eternal pessimist, I will say that bad beats the dickens out of worse, so sounds like better to me.
Hang in there - the chicken sounds great, not so sure about the spinach (no Popeye envy here).

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 10/4/2010 2:01 AM (GMT -6)   
"Watch out for weird sensations, new experiences and mixed up nerves." You should get a bumper-sticker made - we all should.

Hope the staples come out okay. Maybe you can kid folk the scars are from an alligator.

Enjoy the wine.
Alf

Ger42
Regular Member


Date Joined Apr 2010
Total Posts : 189
   Posted 10/4/2010 5:29 AM (GMT -6)   
Good to hear you are doing better.
Age 68 weight 185 height 6'
Samples taken 4/19/2010 sent to Bostwick
3 out of 12 samples cancer
1) gleason score 3+3 involving 65%
2) gleason score 3+3 involving 65%
3) gleason score 3+3 involving 10%
PSA 3.5 Mar 19
PSA 2.5 Apr 4
Bone scan clean CT scan clean
Da Vinci 8/24/2010, rescheduled to 8/26, now Oct 12th
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1148
   Posted 10/4/2010 6:54 AM (GMT -6)   
Hi David,

I know that you have pain at the operation site but can I ask whether the crippling pain that you had previously in the bladder neck is all gone? Or is it slowly fading away?

I wish you the best night's sleep and for your op pain to fade in the days ahead.

An

gibson00
Regular Member


Date Joined Nov 2009
Total Posts : 212
   Posted 10/4/2010 7:16 AM (GMT -6)   
David,
Great to hear you are doing well.
I'm not sure if you mentioned it or not in your previous posts, but I hope your bladder spasms have (are) settling down now!

Cheers
Father 65 y/o at diagnosis November 2009
Gleason 9 & 10, stage 3 - seminal vesicle involvement
Two TURPs mid Nov. 2009
Foley Catheter
Casodex for last two weeks of November '09, then Lupron.
Suprapubic Catheter March 18th, but blocked right away, back to Foley...
Started IMRT March 25th, Chemo on hold due to catheter bleeding issues, etc.
Ended IMRT and Chemo (Taxotere) late May
Mid-July - pain finally better controlled with Fentanyl patch
Late July - Superpubic Cath. removed, peeing normal again
July 21 - PSA .21
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