where do I go from here?

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bluedolphon
New Member


Date Joined May 2008
Total Posts : 2
   Posted 5/18/2008 12:28 AM (GMT -6)   
Hello Group!

1. 67.5 year old male- of course- with a nerve sparing radical retropubic open prostatectomy,

5 months ago to the day, “attempted” with 50 mgs. of Viagra .



The desire was there the mood was right and the attempt was a total complete utter dismal frustrating failure!

Nothing , rein, gornisht! Very discouraged.



Was the attempt premature? Should it be tried again or should there be a three month wait.

Very discouraged and existentially depressing!



Prior to surgery no problems.



------------------------------------------------------------------------



2. Almost dry during the day with minor dribbling at night.

When does that get better? Discouraged and depressed about this as well but the “attempt” is the most powerful painful experience.

Prior to surgery no problems.



__________________________________________________________





I reiterate very discouraged and existentially depressed!



Your Feedback would be appreciated.

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 5/18/2008 12:57 AM (GMT -6)   
Hey Bluedolphin,

Most of us had problems with erection after surgery. We use Viagra, Levitra and Cialis also pumps and finally injections. It takes the nerves a long time to heal and remember that everything got pretty well messed up during the surgery. Give yourself time, it does get better and if you will click on the second line from the top of the main page, you will see links to our experiences with ED and all other aspects of PCa.

Folks will be answering your concerns soon. We always help each other with knowledge and support so please stay with us...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
50 mg Viagra + 1000 mg L-Arginine + .03 cc Trimix = Excellent Results
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
"Patience is essential, attitude is everything."


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1211
   Posted 5/18/2008 1:16 AM (GMT -6)   
Welcome to this great forum.
You probably mean: "Nothing, nein, garnichts! Very discouraged"....:-).....(old 'Kraut' here).
Well, from what I have researched and from my own experience, if you get anything happening down there on or before 5 month after your prostatectomy, you would be very, very fortunate. Most guys have somewhat useful erections somewhere around about 1 year (some sooner; some never). There are some exceptions, but I belief that's about an average. Many of us (if not most) are using either chemicals (V*agra or similar) or injections.
Soon other members will chime in and give you more and better hints as to how to try and overcome your ED. It would be helpful if you could give us some idea, in a 'signature', as to your background (PSA, gleason, stage of cancer etc).
Hoping for a quick and complete healing for you.
 
Magaboo

Born Sept., 1936
PSA 7.9
Stage T1C
-ve DRE
Gleason's Score 3+4=7
2 of 8 positive
Open RP 28 Nov 06
Post op staging T3
Gleasons still 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 test Mar., 08 =.04 
 
 


bluedolphon
New Member


Date Joined May 2008
Total Posts : 2
   Posted 5/18/2008 1:29 AM (GMT -6)   
God Bless you all. I am touched by your generosity of spirit. Thank you so much!

Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 5/18/2008 5:14 AM (GMT -6)   
BlueDolphon -- welcome to the group, and wish you weren't here :-)
 
You seem  to have the incontinence well under control -- keep doing the kegels and exercise -- walking is as good as anything -- but jog if you must :-) Others here will report it does get better.
 
You have nerve-sparing surgery -- I have non-nerve-sparing surgery. I know there is only a faint chance of my ever getting natural erections again -- if ever. But am I discouraged? -- not a bit of it.
 
To put some perspective on it, about 1% of my time before surgery I needed an erection. The other 99% of my time I didn't want one -- in fact some times it would have been a serious disadvantage. Similarly, about 1% of my anatomy doesn't work any more, but the other 99% still works the way it used to. That is a great deal better than one alternative -- none of it working. :-) Your numbers may be similar.
 
So this is a round-about way of saying those of us in here stressing out over ED have a great deal to be thankful for.
 
In your case with nerve-sparing surgery, the odds are you will recover your erectile function, but it will probably be a year or two. It would have been a big surprise if your first trial with Viagra was successful. You will have to keep working at it.
 
As to whether your attempt was premature -- absolutely not! Three months is too long to wait. I achieved penetration soon after the catheter came out -- yes it is possible with a complete flat tire and lots of lubrication. But try anything more than that, and it came straight out again.
 
I was able to achieve orgasm without erection via musterbation (and a big thank-you to the inventor of that word!). Eventually one month after surgery we (my wife and I) had complete success with the aid of an injection. Since then two more successes, two partial successes and about 8 complete failures.
 
You may not feel like injections -- and they certainly are scary at first and I still have injection anxiety. Consider a pump (VED) -- many doctors recommend them for exercise, and I find it makes musterbation a lot easier too. And of course there is a lot of other enjoyable sensual/sexual activity that a willing couple can indulge in that doesn't involve penile penetration.
 
So at this early stage, keep trying -- but expect nothing and you won't be disappointed.

Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week PSA: 0
No erections (of course!)
Experimenting with VED and Bimix
 


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 5/18/2008 10:11 AM (GMT -6)   
Good morning and welcome Bluedolphon. I can understand the depression and frustration you are going thru. Many people that are not dealing with this tend to forget that our sexuality is part of who we are, and without it we feel incomplete. Sad truth is at this stage of the game you may not be able to do much, however as time passes and you keep yourself healthy the body will begin to respond. Probably not like it once did, but still it will respond. During this time of healing I would encourage to find new ways to express your love, and to allow love to be expressed to you. this is a time of developing strong friendships with in your existing relationship. God is providing you a new road in life and yes it is the road less traveled, and it is a road under normal circumstances we would not choose, but here we are on it anyway. Keep your head held high, your spirits growing strong, and your love for your family friends and god moving in the right direction. This is a new chapter in the book, and trust me there are many happy chapters left to write.

peace and love
dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
 


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 5/18/2008 10:20 AM (GMT -6)   

bluedolphon,

First of all, welcome to the group.

To reiterate what others have mentioned, ED recovery is typically not an immediate thing, even with Viagra.  Some are very fortunate and have erections as early as when the catheter is still in.  Others never have an unassisted erection again, even with nerve-sparing surgery.

From what my urologist told me, what I have learned from the folks here and from what I have read in numerous web articles, here are some suggestions:

1. As biker Jim said, search for any ED-related threads here and read them.  Lots of great information.
2. Try using the Viagra to stimulate blood flow, not just when you want to try sex, but a few times a week.
3. Consider supplements such as Vitimin B-50, Vitamin C, Vitamin E and L-Arginine.
4. Get a prescription from your urologist for a medically approved Vacuum Erectile Device (VED).  Some insurance plans will pay for all or most of the cost.
5. Investigate penile injections...the most common being Caverject, bimix and trimix.  There are many threads on this topic here at healingwell....and the men here who use them are more than happy to answer questions about their experience.

Best of luck to you, blue.

DanMan



Danman Bob, Born 1951
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14; Biopsy result - 9 of 12 sticks showed cancer
Post-op pathology stated that cancer was confined to the prostate
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of late April 2008)
100 MG Viagra 3 times a week beginning December 2007
Osbon Erec-Aid Esteem manual pump for therapy beginning mid-February 2008
30 MG papaverine/1 MG phentolamine bimix injections beginning late April 2008
Five week post-op PSA 0.2, five month post-op PSA 0.1, next test August 2008

Post Edited (DanmanBob) : 5/18/2008 9:24:39 AM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/18/2008 12:17 PM (GMT -6)   

tongue  Hi ~ bluedolphon and Loved Ones,

 

Welcome   to…   ~ HealingWell ~

 

and

 

A   Special   Warm Welcome  to  You !

 

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 Click  on  link  below for important information that will help you ~ help us!!

 

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The information (link) listed above is to help you get around the forum! 

 

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Welcome ~ New Friend from all the members here... on HealingWell.com

 

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/18/2008 12:20 PM (GMT -6)   
bluedolphon,
Welcome to the best site on the web for patient to patient interaction. I too am in the no sex club. My surgery fared well but I had advanced diease and the HT just stopped the opportunities all too young. But you can indeed give this more time. Others have gone this long and were able to restore their sex lives. I remain Hopeful, and would wish you the best in your healing. God Bless and see you around.

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (1/08): <0.1
I will continue HT until May '09. 
Years in Remission (3/23/07): 1
Visit my Journey at:
 
STAY POSITIVE!
 
Prostate Cancer Forum Moderator


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 5/18/2008 12:27 PM (GMT -6)   
"gornisht"

Even if the old 'Krauts" don't understand, some of us do.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.

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