What should I be doing now?

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henry5
Regular Member


Date Joined Jul 2008
Total Posts : 24
   Posted 7/25/2008 9:50 PM (GMT -6)   
Hi All,
 
It's great to find you.
 
I'm three weeks post-op rad prost.
 
What a ride... Had a biopsy late May. following a visit to a urologist. It was good news, 1mm diameter (1 hit in 8 biopsies) He said it was amazing he hit the tumour at all.
 
By all accounts I'm lucky enough to be ahead of the game. Continence has been excellent.
 
The next step is back to regular activity slowly over the next couple of months.
 
My question is, when should I be starting to deal with the ED medications (Cialis, Viagra etc). What about herbals, like horny goat weed etc.
 
I get some thickening now, but don't know whether that means anything or if it's a post-op thing?
 
John
 
 
 
Age : 45
 
Nerve Sparing Rad. Prost: 3 July 2008
 
PSA: 3.2 (had been high for four years)
 
Gleason : 3+3 = 6
 
T1 .1cm diameter, right apex. Contained, excellent clearance.
 
First Post op PSA: 18 August 2008
 
Continence: Discovered my pelvic floor, continence was great day one...wore pads for insurance, no pads from day five after catheter removal (had a few small stress leaks).
 
Potence: A work in progress...


AndrewJ
Regular Member


Date Joined Jul 2007
Total Posts : 25
   Posted 7/26/2008 1:16 AM (GMT -6)   
Hi Henry,
Welcome to HW. Sorry you have to be here, but you're in the right place for infomation and support.
Why wait with ED meds? My surgeon had me on a small dose of Levitra from the night before the operation and this continued while I was in hospital and right through recovery. He showed me articles about the effects on ED recovery of stimulating blood flow right from the start. Apparently the longer you wait the more things "forget" what they should be doing. Of course, it's not about being able to have sex at that stage but about keeping the tracks clear even if no trains are running, as he said to me. Worked in my case - I woke with a "half" erection at about Day 10 and things were fully operational shortly afterward.
46 years old (45 at diagnosis), Australian living in Germany
PSA: started around 3.5 in 2005, 6.1 at time of surgery
Biopsy: nothing found in 2006, 3 May 2007 3 of 24 cores positive, Gleason 3+3 or 3+4 depending on pathologist
RPE in Munich, Germany on 22 June 2007
Post surgery pathology: organ confined but less than 1mm from margins, Gleason 3+3, pT2c, Lymph nodes removed and clear
First post-surgery PSA 31 July 2007: 0.01 Confirmed in September evry 3 months since. Fully continent immediately after removal of catheter on Day 8.
No potency issues but still taking small doses of generic Levitra "as required" as my security blanket.
This man knows he has been VERY lucky.


henry5
Regular Member


Date Joined Jul 2008
Total Posts : 24
   Posted 7/26/2008 1:48 AM (GMT -6)   

Hi AndrewJ,

 

Thank you. That's great news! Will get on it right away!

 

John


Age : 45
 
Nerve Sparing Rad. Prost: 3 July 2008
 
PSA: 3.2 (had been high for four years)
 
Gleason : 3+3 = 6
 
T1 .1cm diameter, right apex. Contained, excellent clearance.
 
First Post op PSA: 18 August 2008
 
Continence: Discovered my pelvic floor, continence was great day one...wore pads for insurance, no pads from day five after catheter removal (had a few small stress leaks).
 
Potence: A work in progress...


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/26/2008 8:15 AM (GMT -6)   
                                                                         tongue    Hi ~Henry5 and Loved Ones,

 

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James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/26/2008 8:38 AM (GMT -6)   
Welcome, henry5.  It seems to tbe the trend, after some recent research studies being released, for docs to be more aggressive in treating ed problems post-prostatectomy.  The 'standard' course, for my doc and the others in his practice is to begin ed drugs at a low dosage at catheter removal.  I started with 25mg of Viagra along with 2000mg of l-Arginine, until I could get my order for generic viagra from alldaychemist.   I am just now beginning to look at herbal alternatives, including horny goat weed.  At the 6 weeks mark, he started me on a penis pump, to keep the penis exercised, blood vessels filled and emptied and such.  Sometimes I use the bands to hold it in a couple minutes, mostly, I just pump up and release, allowing the drawn in blood to run back out.  One of the first signs of recovery is when the veinous valving starts to keep some of the blood in the penis, by the way.  Most guys will get a thickening when sitting on the toilet during a bowel movement or when you do a squeeze and milk action on the penis, which is forcing a small amount of blood into the penis, while stretching it.  Also, along with frequent exercise with a pump or otherwise, it is usually recommended to frequently stimulate yourself to orgasm (gotta work around the word editor in this software), either by yourself or with a willing partner.  This can be done with or without an erection, and helps to stimulate regrowth and healing in the nerve bundles that have been injured, bruised and such during surgery.  At the 3 months mark, if no improvement is shown, he starts penile injections, most doc want to start with Caverject, which is usually problematic for most men, and settles on Bimix or Trimix.  There's lots of good info here and elsewhere on these, so I won't go into detail now.  As AndrewJ and his doc says, use it or lose it, penile atrophy can be a real result of surgery and needs to be addressed aggressively and early.  Hope you hang around with us and share your journey with us.



James C.
Co-Moderator- Prostate Cancer Forum

Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
10/15/07 ED- begin 50mg Viagra and Vacurect pump nightly, Fully continent
1/14/08 Caverject started/stopped, aching. 2/24/08 .5ml Bimix started-success
7/31/08 ED- Viagra, pump continues, no response- Trimix .10ml x 2 weekly continues
Post Surgery PSA's:  3 mts-0, 6 mts.-0, 9 mts.-0.

Post Edited (James C.) : 7/26/2008 8:46:48 AM (GMT-6)


chonburiman
New Member


Date Joined Jun 2008
Total Posts : 2
   Posted 8/9/2008 8:31 PM (GMT -6)   
This is a really great site and I wish I'd found it a while ago.  I had a radical almost 20 months ago
and like many are having problems with ED.  What I'm really "miffed" about is the lack of direction from my Urology guy (the surgeon) who I see every six months.  My PSA has been undectable and so are my erections.  I'm concerned that other than a couple of sample Viagara's from the doc after a year, he's not suggested any other treatment for my ED.  What's I've learned from this site suggests I should have been working on stimulation, pumping and so on.  I've heard about "use it or lose it" and I'm concerned that it may be too late to start anything - I'd really appreaciate your thoughts and suggestions.    

henry5
Regular Member


Date Joined Jul 2008
Total Posts : 24
   Posted 8/10/2008 1:05 AM (GMT -6)   
Hi There.

Great news about the PSA!! 20 months!! Wonderful!!! :)

Guess your continence is really good too?

I'm only five weeks into this journey. And I have been lucky, continence excellent almost immediately. too early for 'woody' down there. tBut, time is the key.

I got a little panicky about it early this week. Spoke to the ED nurse at my urologist. She was unconcerned. Yes, she indicated that it was a good idea to start early...but...she spoke to me about a guy who she was working with, and having good results...after five years! He'd just decided that he wanted to... Go figure!!

I heard something a while ago that sounds true for me. This is your journey. Forget about being miffed...nothing you can do about it. You havent wasted 20 months. You havent wasted anything. Just act...now. There are SOOOOO many stories, so many journeys here, all of them with different experiences and outcomes.

I think that, when you focus too much on the problem...it becomes a problem. Life has a funny way of turning out. Seek out advice from your uro about the problem. Then, go see someone else. No 'one rule' applies...ever!

J
Age : 45
 
Nerve Sparing Rad. Prost: 3 July 2008
 
PSA: 3.2 (had been high for four years)
 
Gleason : 3+3 = 6
 
T1 .1cm diameter, right apex. Contained, excellent clearance.
 
First Post op PSA: 18 August 2008
 
Continence: Discovered my pelvic floor, continence was great day one...wore pads for insurance, no pads from day five after catheter removal (had a few small stress leaks).
 
Potence: A work in progress...

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