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Arch
Regular Member


Date Joined Jun 2010
Total Posts : 192
   Posted 8/10/2010 10:06 PM (GMT -6)   
Hi everyone,
 
finally recovered from the unpleasantness of RP surgery but have incontinence and ED issues which hopefully will improve with time, I do however have some ED questions.
 
I can get maybe 75% size with stimulation and no drugs, but soft. With Viagara I get full size and girth but not enough firmness for penetration. Its been 3 months since my surgery, will the firmness return on its own or would it be wise to try a pump?
 
As for the continence I'm currently doing 5-6 pads per day which is  a bit of an improvement from the 7-8 pads per day just a couple of weeks ago. If I'm standing and working for longer periods it just drips steady.
Sitting any lying I have pretty good control.
 
thanks for your advice.
 
Arch
 
Biopsy 4 of 10 positive, 15% involved
vas deferes and lymph nodes clear
Gleeson 3+4
RP surgery May 18, 2010
Catheter out 2 weeks later
incontinence June 1 10-12 pads
                    July  15   8-10 pads
                    Aug   1    7-8 pads
                    Aug    5    5-6 pads
results of first post op PSA next week
 

Im_Patient
Veteran Member


Date Joined Aug 2009
Total Posts : 670
   Posted 8/10/2010 11:21 PM (GMT -6)   
Hi, Arch
Welcome to the forum. It sounds to me like you are progressing pretty well on both the ED and continence fronts, but you might make faster progress using a pump - it is a pretty individual thing. For some guys, it makes all the difference in the world, for others not much. I recommend you give it a try. You'll continue to progress, my bet, even without the pump, however.
All the best, Jeff
Gleason, 3+4; PSA, 7.9
Robotic Prostatectomy, March 2008 (Age 48 then), nerves both sides spared, post surgery analysis confirmed 3+4 Gleason,
pT2c, prostate 60.2g, margins: negative; perineural invasion: present; lymphatic invasion: present; 3 lymph nodes removed, clear; seminal vesicle invasion: absent; Gleason 4 comprises 5-10% of carcinoma
PSA consistently <0.1 since surgery until Oct 09: 0.1; retested Oct 09, <0.1,
Jan 10, 0.2
retest Feb 1 confirmed 0.2
CT scan, bone scan Feb 10 both clear
PSA after, 2010: March, 0.17; April, 0.17; May, 0.24; June, 0.31; July, 0.29; Aug, 0.41
Started salvage IGRT on August 4, plan 72Gy total, 40 doses

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 8/11/2010 6:59 AM (GMT -6)   
Arch, Sounds like you are well on your way to recovery of the wood. I agree with Jeff you may find the pump a way to faster progress. Doing as well as you are I dont think I would buy the high $$$ medical pump. Just pick up one from a sex shop or on line. Much cheaper and will do the same thing for you.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1 pre cancer core
10/08 Nerve-Sparing open radical
Surgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clear

3 month: PSA <0.1
6 month: PSA <0.1
10 month:PSA <0.1
1 year: PSA <0.1
16 month:PSA <0.1

ED - Started Cialis at 3 months, tried all 3, 6 months added pump, 9 months Tried MUSE (YUCK) Bad experience.
1 year mark Found new Urologist visit was at 14th month post surgery
Started Injections, Caverject! (Success)
17 month: ED making improvements : Oral Meds gets me 85%

BuiDoi
Regular Member


Date Joined Aug 2010
Total Posts : 234
   Posted 8/11/2010 7:05 AM (GMT -6)   

We men are semi-happy to talk about the details of the RP operation, but few will openly discuss ED.

From those that I have spoken to, I get the feeling that Onc's tend to be very "Optimistic" about their observations on ED. I can't imagine that there would be any difference between RP via Robot or "open-Cut".

I have found that following the operation, it has been all down hill, with ED meds providing a reaction that would not even scare the cat, let alone, impress the bride !
Most men I have spoken to, find the same response, and feeling "It's just me", adopt the attitude "I'm better off being alive with a dead member, than dieing with a live member".

Are Cutter-Onc's inclined to gloss-over the ED side of things, out of fear that the average male might refuse treatment, or opt for alternatives, (eg. Radiation), if they knew the truth.

Can anyone explain how a full-nerve-sparing operation seems to result in such dismal and diminishing performance.  What causes the ED ?  mad


Full Bloods -- Nov 09 = PSA 5.0 @ 60yo - Absolutely NO symptoms
DRE-Non-Palpable
Jan-2010 - TRUS Bx DX - AdenoCarcinoma T1c - Geeson(3+3)=6 , 5 & 45% max., Left MidZone
Jun-2010- open-Cut RP- Nerve Sparing
Post Op. Gleeson(3+4)=7, 1.1cm3, Pos Margins, EPE (focal) Lateral Left
Margin-Involvement (extensive) Posterior , Grade3 x 8mm
+8week PSA <0.01 , Full-ED, Mild Incont.

Post Edited (PeterA) : 8/11/2010 8:58:28 PM (GMT-6)


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 8/11/2010 7:23 AM (GMT -6)   
Arch,
ED recovery goes in stages - in plateaus. you will find a huge improvement at the 9-12 month mark. If you are getting these results now, you are in pretty good shape. Many men also find another big jump at the two year mark.

Peter...
This is a complicated question. It is more than just nerve damage. It is also vascular damage, mental damage. The fact is a large percentage of men do gain enough for successful sex. This board is not a representation. In my PCa support group, 75% of the men can get erections now. BUT, that does not help the struggling guy. You had surgery in June? if you are getting any results at all from pills, you are doing OK. use a pump every day - twice a day. ********* every day - alone or with partner. If you are not seeing results, ask your doc to become more aggressive with treatments. Injections often help jump start natural erections. Email me if you have questions.
Paul
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!

RCS
Veteran Member


Date Joined Dec 2009
Total Posts : 1268
   Posted 8/11/2010 12:21 PM (GMT -6)   
You may find it helpful to listen to a video by Dr Mulhall. He is a leading expert on PCa and ED. I think these lecctures last about 1.5 hours (three of them?) ... but they will probably answer all of your questions and then some.

http://www.mskcc.org/mskcc/html/94910.cfm
PSA 2007 - 2.8

PSA 11/24/2008 - 7.6

Pc Dx 2/11/09; age at Dx 62

RLP 4/20/09

Biopsy - Invasive moderately differentiated prostatic andenocarconoma; G 3+3=6; PT2C; No evidence of Seminal Vesicle or Extraprostatic Involvement; Margins clear; Tumor identified in sections from prostatic apex.

70 gram prostate.

Immediately continent after removal of cath.

ED - Trimix works well; viagra @ 70%

PSA - 7/31/09 <0.06

PSA - 12/1/09 <0.06

PSA - 3/29/10 <0.06

PSA - 8/4/10 <0.06

MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 8/11/2010 12:47 PM (GMT -6)   
Hi Arch,

Sounds like you are moving along well

Some things you may want to try , if you have not already

1) Viagra is extremely food dependent, try taking one hour AFTER you ate anything and do not eat for TWO hours after taking

2) Take the supplement L-Arginine 1 hour before taking Viagra, Walnuts also work as then have high amounts of Arginine. Arginine increases NO which increases bloodflow. Shoot for 2 grams to start. There is a lot of info on the web search for "arginine ed"

3) A VED pump will help a lot, you have a few options, one from your dr that is partially covered via insurance or like other members here have done just go get a cheap one from a adult store

4) Inj therapy sounds ominous but it is not, its simple and effective. The benefits are amazing, you will have the stiffest erection of your life for 2 hours and therapy will be a blast
Stats:
Age: 52, PSA (2008)=1.9
Biopsy on 01/09/09, Gleason Score = 3+3
One (1) out of twelve (12) cores was positive, plus external nodule found
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Post Op Path 3+3
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA undetectable tests , <0.01 – 3,9 and 16 months post-op
Trimix provides 100% erectile function

BuiDoi
Regular Member


Date Joined Aug 2010
Total Posts : 234
   Posted 8/11/2010 4:28 PM (GMT -6)   
"ED recovery goes in stages - in plateaus. you will find a huge improvement at the 9-12 month mark."
 
Folks - Thanks so much for the reassurance..  It is very easy to be negative about the wrong things,   skull   and I fear that many men just give up, due to the unwillingness to pursue a solution.
When you are told - 'use it or lose it' - and it just goes (what seems to be) down hill, one starts to think..  "well - I have already lost it"..
 
Again - my thanks for some hope , and thanks from those who I will email with these thread details.. It will also give them hope.
Full Bloods -- Nov 09 = PSA 5.0 @ 60yo - Absolutely NO symptoms
DRE-Non-Palpable
Jan-2010 - TRUS Bx DX - AdenoCarcinoma T1c - Geeson(3+3)=6 , 5 & 45% max., Left MidZone
Jun-2010- open-Cut RP- Nerve Sparing
Post Op. Gleeson(3+4)=7, 1.1cm3, Pos Margins, EPE (focal) Lateral Left
Margin-Involvement (extensive) Posterior , Grade3 x 8mm
+8week PSA <0.01 , Full-ED, Mild Incont.

Post Edited (PeterA) : 8/11/2010 8:59:26 PM (GMT-6)


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 8/11/2010 5:05 PM (GMT -6)   
Arch,
I think you are doing great on the ED issue. Incontinence is a crap shoot some guys are dry right away and others struggle for a year and sometimes longer. Are you doing Kegel exercises?
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
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 in circumference.
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 5 months
2 months 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
11 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005

Arch
Regular Member


Date Joined Jun 2010
Total Posts : 192
   Posted 8/11/2010 7:29 PM (GMT -6)   
thanks to everyone for your responses, I look into the l'arginine and may consider a pump as the next step. Your candid answers are appreciated.
 
 

hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 8/11/2010 10:37 PM (GMT -6)   
Peter A

I had open surgery in May, 2008 and had half my nerves spared. I had no activity at all before the six month mark. And I was taking cialis or viagra on a daily basis. I started with a VED at 3 months to retain the length. It was 9 months before I had noctural erections.

Things will get better
Age 60, PSA 2007 4.1, PSA 2008 10.0
Diagnosed April 2008, Biopsy: 6 of 12 cores positive, Gleason 4 + 5 = 9
CT and Bone Scan negative, Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared, Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th, pT2c, lymph nodes negative
PSA Sept 28, 2008 0.00, PSA Jan 22, 2009 0.00, PSA June 29, 2009 0.00
PSA Sept 2009 0.00, PSA Dec 21, 2009 0.02, PSA March 29, 2010 0.03
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.
Stopped the injections except for "Fun" weekends. Really don't need them anymore.
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