1 year 3 month and still nothing after open RP

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lastcowboy42
Regular Member


Date Joined Dec 2008
Total Posts : 22
   Posted 2/9/2010 6:51 PM (GMT -6)   
i AM ONE YEAR AND 3 MONTH AFTER MY open RP , Iam 43 and well still nothing yet
down there ? no erg to have or want from my wife ashamed because I can not do my
so calld husbandly duties and so forth .
I have pains still inside and well my penis feels like it is getting squashed almost all the time ?
I do not know why , my doc told me since I am 43 and he saved the left nerve I should have no problems
I have used Viagra,cealis,us the pump to keep the blood flow and still nothing ?
I notice now if I use the pump it seams to take a hard right where before all this it never did
was strait like a redwood .
I would like to know if anyone else out there has the pains and the curve and lack of erge to have sex
or am I losong my mind and just ned to deal with it what ever it is .
thanks for your help
 I am 42 years  young
Psa 11.6
gleasen 4+3=7
Catscan-Neg but for a cyst on liver
Bone scane - Neg
11 out of 17 bio tests came back pos full rt side agressive cancer lft side  core  had 2 bios  pos
had the open RP on Tuesday November 18th of 2008 at 7:45  am , finished at 1:30 and took the 3 pts of blood I gave .
 At Kaiser Sunnyside  in Oregon
Performed by Dr Matthew Forsyth
 Came home on 11-21 , cath and staples out on 12-01
now the real work begins
 


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 2/9/2010 8:35 PM (GMT -6)   
Hey Cowboy.

You're not losing your mind. Your prostate, yes. But not your mind.

At 6 months I'm still a young'un compared to old timers like you but I have nothing going on down there yet. I want to, but it is not happening. I will be trying a Trimix injection for the second time next week. Maybe that will work.
Have you tried Trimix or Caverject?

Other more experienced guys will chime in I'm sure. But before they do can you answer one question for me? Are you dry? Please tell me I have a chance of getting rid of these wet pee pads in my pants.
Right now I'd trade that for a woody...
Stay healthy and do whatever exercise you can. At 44 you are too young to burn out.
Jeff
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 6=3+3. Bone and C/T scans neg.
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, See Uro 1/22/10 Trimix unsuccessful.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (Try cutting down on fluids. Bad idea. I know.)
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
1/11/10 6 months: Still 3 pads but leak is now 320 ml (5 day avg.)
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05.


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 677
   Posted 2/9/2010 8:59 PM (GMT -6)   

I am considerable older than you.  I found that after my surgery I was not getting back to how I was before.  Full erections just did not happen with pills or pumps.  So..I tried Caverject and then went to a BiMix.  It works every time and has restored our sex life.  It is not perfect and it is not as good as before, but it is what it is and We enjoy it every time.

Bimix injections are easy to do and as time goes by are not a problem.  We don't even need to plan ahead.  When the mood strikes us..one or the other or both, we just say lets do it, and 10 or 15 minutes later I am ready to go. yeah


PSA up to 4.7 July 2006 , nodule noted during DRE
Biopsy 10/16/06 ,stageT2A
Very Aggressive Gleason 4+4=8  right side
DaVinci Surgery  January 2007
Post op confirms gleason 4+4=8 with no extension or invasion
no long term continence problems
Post surgery PSA continues to be "undetectable"
One side nerves spared
Bi-Mix for ED 
born in 1941


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 2/10/2010 6:19 AM (GMT -6)   
Cowboy,
What I am concerned about is the lack of sex drive. Hate to say it, but back to your doctor you gotta go. First, have testosterone checked. Second, you very well could have clinical depression - no, you're not nuts, just brain chemicals are out of whack. Depression will make you sound and feel exactly as you describe. And like everything else, if you think you're alone in this, guess again. I'll bet half the guys on here are on anti-depressants. Then we work on getting you to feel like a sexual being again - erection or not - that's the most important things.

Getting an erection? one year out?? You need a new uro ...one who cares. You should definitely be on injections. I was 46 at DX so I know how you feel. Email me if you want more info. Any good uro can get you an erection eventually. How do you feel about your uro?
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!


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 2/10/2010 2:01 PM (GMT -6)   
Cowboy,
I had both nerve bundles removed so pills don't work for me. I find that my libido is the same as before (the urge is there). I use trimix at .25 dosage and it works for me. I get an erection that lasts a couple of hours.
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 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 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
11.5 months test 1/21/10 result 0.004


Im_Patient
Veteran Member


Date Joined Aug 2009
Total Posts : 665
   Posted 2/10/2010 2:53 PM (GMT -6)   
Cowboy, my drive was low after the surgery, and it turned out I had low testosterone - been dealing with it since. I believe the low T helped bring on some mild depression that didn't help as well. Reading the books on the subject, it is very common and more the norm that sex drive drops after prostatectomy even if low T is not a problem. You're definitely not crazy. Ask your uro to check your testosterone.

I didn't quite get there (good enough for intercourse) with just the pump or pills - both caverject and bimix have worked great for me. I opted for bimix because it was as effective and lots less expensive. Don't despair - you haven't tried all avenues yet.

Some are queazy with injections, particularly intimidating where we are talking about, but it is almost painless. There is an auto-injector you can get that makes it so you don't even need to watch (I didn't opt for it but some prefer it).

If you try the injections, keep in mind it may take several tries to find the right dosage, so again, don't despair if the first couple of tries doesn't do it for you.
Gleason, 3+4; PSA, 7
Robotic Prostatectomy, March 2008 (Age 48 then), nerves both sides spared, post surgery analysis confirmed 3+4 Gleason,
cancer contained, no penetration, lymph nodes clear
PSA consistently <0.1 since surgery until Oct 09, 0.1; retested Oct 09, <0.1, Jan 10, 0.2; retest confirmed 0.2


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 2/10/2010 2:55 PM (GMT -6)   
Cowboy: Paul has hit your post on the head. Nerves saved here (No wood) What the deal.. Tried the Pills, and Pump have moved to Caverject. Works every time. I know that problem can be fixed. I am more concerned about the lack of desire. See you Dr.

Shoot me an e-mail if you have specific questions. My e-mail is open.

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.
15 months out injections Caveject (success)

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