Post Prostatectimy - Getting the engine moving again!

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Coachford
New Member


Date Joined Jan 2010
Total Posts : 4
   Posted 1/7/2010 8:34 AM (GMT -6)   
7 weeks post successful & fully contained VIP prostatectomy with nerves apparently protected upon removal of prostate.
Have utilized Viagra,Pump & PAP/PHEN injections.
Cannot get into first gear and wondering if i am expecting too much or have i consigned to being a eunuch stand-in at the local fairground.
Input or invitation to your fairground welcome.
MALE 60
Gleason 3+4
Surgery Nov 19 2009

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 1/7/2010 8:44 AM (GMT -6)   
Hello Coach,

Glad to see you on the recovery side. Sounds like you got a decent pathology report, that is the most important part. You didn't mention, how are you doing on the incontinence front? That usally comes first during the recovery stage. Even though your nerves were spared, you have just went through major surgery. At best, these nerve bundles are traumatized. It can takes weeks or months, and sometimes longer, for them to start working again. That's why its normal to start using a pump or pills, not for pleasure, but to help the blood vessels in that area to flow again. I mostly think that you need some patience here, it has only been 7 weeks or so since you had the surgery.

Keep us posted. Sure many more will give your their 2 cents.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 in place


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4088
   Posted 1/7/2010 9:40 AM (GMT -6)   
Hi Coach: Time my friend time. Things must heal. Im 15 monthss out and still in neutral. Or should I say the clutch is slipping. I am going back to the Dr. tomorrow to try to add a bit of hydraulic fluid to the master cylinder!  Hope that gets the clutch pedal a bit stiffer!

Jeff T
Cajun Country


Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.

Post Edited (corvetteman3) : 1/7/2010 8:43:22 AM (GMT-7)


MrGimpy
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Date Joined Jul 2009
Total Posts : 504
   Posted 1/7/2010 10:17 AM (GMT -6)   
You need more time, my dr says for me not expect much before my 1 yr post op anniversary

I am at just past 8 months and oral ed drugs are just starting to work ( not always reliable though), for now I will stay on Trimix shots, which have been working superb the past 4 months (100% reliable)
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


t-dog
Regular Member


Date Joined Dec 2009
Total Posts : 154
   Posted 1/7/2010 11:27 AM (GMT -6)   
Gimpy, when you do the shots how long do they last?
Dx at 50 in 12/09 Merry Christmas its cancer....
3 of 12 positive, right side only, psa at dx 2.6 free%14
gleason 3+3=6
routine physical, no symptoms
Da Vinci scheduled Feb. 2k10


brainsurgeon
Regular Member


Date Joined Jul 2009
Total Posts : 137
   Posted 1/7/2010 11:39 AM (GMT -6)   
Patience. While waiting, do as my sister in law suggested (her husband is 10 years out from RP) "Be creative". I am 6 months out of RALRP tomorrow and still making progress for an old fart. Awoke early AM with a real woody. My wife and I have had several sweet and nice "all mosts". Looking forward to the next one. We find the dry orgasms lovely thing.
70 years old (1939) USA citizen
Prostatic carcinoma dxed June 2009 by PSA (7.0) and then Bx
PSAs yearly since 2001 ranged 1.52 to 7.0
Neg. CT and Bone Scan
4 of 8 biopsies positive (all right side) Gleason Score 3+4=7
Robotic assisted total prostatectomy and node excision July 2009 in Luzern, Switzerland by Dr. A. Mattei in the Kantonsspital
pT2c G3 pN0 (0/14)
Catheter out in 5 days (home in 3 days)
No incontinence
Positional neurpraxia resolved in 5 months.
Potency: beginning tumescence??? at 3 weeks post-op. Still happens at 3 months PO. Nearly usable one month later. At 5 mo. with 100 mg Vitamin V, pretty good.
3month PSA less than 0.01


Coachford
New Member


Date Joined Jan 2010
Total Posts : 4
   Posted 1/7/2010 1:33 PM (GMT -6)   
The input from all to my original request has been quite encouraging.......essentially be patient.Ya right!!!!!
To the question regarding incontinence - I'm about 97% dry and continue to work on not sneezing or coughing which will take me to 98%.
I am reluctant to contribute to TENA or anyone else selling pads.
I do recall shortly after the surgery making a sales pitch and being quite self conscious talking to this nice lady while i was wearing half a diaper.....duh!
I'm wondering if others wake up and find dampness.....this has happened to me on several occasions.
Thanks again for the input from all...i really appreciate it.
Still feeling like a bit of a eunuch!


MALE 60
Gleason 3+4
Surgery Nov 19 2009
All removed
6 week PSA less than .04
Toronto

Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 1/7/2010 2:58 PM (GMT -6)   
While you wait - keep pumping every day to keep blood flow going and tissue limber. Most guys take daily oral meds to keep blood flowing. You will find that one pill before bedtime will help bring back nocturnal erections. And don't give up on the pump front. You can certainly still have great sex with that. It may be cumbersome at first, but it will get faster and easier. Did your Dr not try trimix for a reason?
MUSE can be awful, or can be great for some guys.
But most of all...remember you are on a five year recovery time frame...with the major leap at one year.
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
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
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 1/7/2010 6:13 PM (GMT -6)   
Coach,

Consider the dampness a PC survivior's wet dream ! It does happen a little for me, but never more than just a damp spot in the undies.

I hear you on the patience, but it is just one of those things you can't rush. I would guess at 10 to 12 weeks your doctor may consider prescribing trimix.

Just keep saying the PC mantra, I'm glad I git the thing out of there !

Goodlife
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 672
   Posted 1/7/2010 6:16 PM (GMT -6)   
I'll chime in with a thumbs up on the trimix.

-Nov/Dec 07, March 08 and Dec 08: Severe perineum pain . Septra/Bactrim for 8 months for diagnosed prostatitis.
-PSA start of 2008: 5.3..... PSA June of 2008: 7.3
-14 DRE all benign or nothing felt
-TRUS Biopsy Nov 08: 5 of 8 cores positive GS 3+3 or 6. 30-65%. Perineural invasion.
-General Health: pretty good, 5' 10", 180 lbs, slim.
-Open RP surgery: May 09 both nerve bundles spared. Bilateral lymph node dissection performed. Discharged 48 hours after surgery.
-Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.
-Bladder control within 48 hours of catheter removal
-ED ongoing but improving significantly with Trimix at 7 months post-op. Oral ED meds didn't do much.


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 1/8/2010 1:44 PM (GMT -6)   
Hi Coachford,

You and I can take shifts at the fairground, pal. Or maybe we can sign on as eunuchs to guard Tiger's harem. Even though I've got nothing, I still like to look. Probably be due to millions of years evolution I guess.
7 weeks, almost 98% dry, no pads -and you are complaining?! Didn't you read the manual?
If the occasional drip bothers you, you can buy women's pads. They only hold about 10 ml and are relatively inexpensive.
In the meantime, patience is a virtue.
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8. Start 2 weeks of Cipro to rule out protatitis.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next?
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
. 9/27 2 months: Still 3 pads per day.
11/14 4 months: Still 3 pads per day. 420ml/day, 91 um leak.
12/11 5 months: Still 3 pads per day. 400-450ml/day Experimenting with Nyquil for 10 days: Can sleep through the night but withdrawal is bad. Stopped 12/20.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04 undetectable.


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7197
   Posted 1/8/2010 11:14 PM (GMT -6)   

Coachford:

 

You mentioned VIP surgery.

 

Was this done at Ford Hospital in Detroit?

 

Mel


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.  
History of BPH/prostatitis. PCA-3 test: 75.9 (bad news, guaranteeing I have to do....): Biopsy on 11/30/09. Result of biopsy:

5 out of 12 cores positive. Gleason 4+3. More specifically: 2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C

REVISED BIOPSY REPORT: The previous was read by Umich. Slides were then sent to Dr. Menon at Ford Hospital. Here is their report (much better) -- changes in bold print below:

5 out of 12 cores positive. Gleason 3+4. More specifically: 2 cores were 3+3 (one 5% and the other 20%) on one side. On the other side, 3 cores were 3+4 (5%, 5%, 20%)

 Latest: Surgery with Dr. Menon at Ford Hospital, set for 1/25/10

 


Coachford
New Member


Date Joined Jan 2010
Total Posts : 4
   Posted 1/9/2010 5:00 AM (GMT -6)   
Mel
Yes.
I went to Henry Ford - Dr Menon.
Stayed at the on site apartments......not plush but functional.
Take someone with you if you can ( they have two bedroom apartments - $69 per night).
Medically and surgically brilliant,administratively somewhat challenged.
They will treat you right.....need any perspective....just shout.
Good luck with it....you will be back in the saddle in no time. :)
Having just squeaked in ahead of you ( Nov 19) i can tell you that the input from the other guys on here is right on and very very helpful.
Take it easy.....don't sweat the process.......you will be walking 6 or 7 hours post surgery.

Good luck.
C

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2457
   Posted 1/9/2010 9:24 AM (GMT -6)   
Coach,
I'm 11 months out of surgery. I had the nerves removed so don't expect to ever recover from ED. I do however see some improvement. I can get about 60% erection just by stimulation. I use the pump for therapy and trimix injection for action. The trimix work every time and lasts about 2 hours without any discomfort.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7197
   Posted 1/9/2010 10:39 AM (GMT -6)   
Coach:
 
I would ABSOLUTELY like to chat!
 
We did stay at their apartments for 1 night prior to my consultation.
 
Could you possibly get me your telephone # and I will call.
 
It says your email is unavailable.
 
Mine is available so just click the email icon.
 
Did Dr. Menon indicate to you how it looked immediately after surgery?
 
(Just curious, although I know the pathology report would have the story!)
 
Mel
63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.  
History of BPH/prostatitis. PCA-3 test: 75.9 (bad news, guaranteeing I have to do....): Biopsy on 11/30/09. Result of biopsy:

5 out of 12 cores positive. Gleason 4+3. More specifically: 2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C

REVISED BIOPSY REPORT: The previous was read by Umich. Slides were then sent to Dr. Menon at Ford Hospital. Here is their report (much better) -- changes in bold print below:

5 out of 12 cores positive. Gleason 3+4. More specifically: 2 cores were 3+3 (one 5% and the other 20%) on one side. On the other side, 3 cores were 3+4 (5%, 5%, 20%)

 Latest: Surgery with Dr. Menon at Ford Hospital, set for 1/25/10

 


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7197
   Posted 1/9/2010 10:43 AM (GMT -6)   
Coach:
 
Ignore my last post. It says MY email is unavailable. Your is and I sent you an email
 
Mel
63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.  
History of BPH/prostatitis. PCA-3 test: 75.9 (bad news, guaranteeing I have to do....): Biopsy on 11/30/09. Result of biopsy:

5 out of 12 cores positive. Gleason 4+3. More specifically: 2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C

REVISED BIOPSY REPORT: The previous was read by Umich. Slides were then sent to Dr. Menon at Ford Hospital. Here is their report (much better) -- changes in bold print below:

5 out of 12 cores positive. Gleason 3+4. More specifically: 2 cores were 3+3 (one 5% and the other 20%) on one side. On the other side, 3 cores were 3+4 (5%, 5%, 20%)

 Latest: Surgery with Dr. Menon at Ford Hospital, set for 1/25/10

 


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 1/9/2010 11:17 AM (GMT -6)   
Perhaps the best description of nerve sparing is that they are pealed off the surface of the prostate. Even spared nerves are traumatized and nerves heal slowly. That feeling of being an eunuch is tough -- us guys are used to having that old magic want to tell us when we are excited --- even if it it is only excited to be waking up. Talk back to the sleeping stick and don't let it get you down.

As others have said, there are things yu could be doing now and that might make you feel more in control and not jerked around rather than off
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day

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