Reflections on ED

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maldugs
Veteran Member


Date Joined Jun 2007
Total Posts : 789
   Posted 3/27/2008 12:59 AM (GMT -6)   
Hi everyone, it has been 8 months since my surgery, when I was diagnosed & told I had cancer, the furthest thing from my mind was maybe my sex life was over, now I have come to the conclusion that I really don't care, I have no movement or stimulation "down there"....BUT! I am alive, I can go fishing again, I can ride my bike along our beautiful city cycleways, enjoy a good red wine, cuddle my grandkids, travel, and play lawn bowls again.
 
My wife and I have had 45 happy years, I can look back on my career and be happy that I have had a successful life which has provided me with a comfortable retirement, as you get older, sex is not all that important, your relationship becomes less demanding on both of you, we have had a lot of good intimate times, but now we just get along in a friendly caring relationship.
 
Thankfully, I have an understanding wife, who just wants me to be with her as long as possible, so if I never get another erection....so be it! there is a lot more to life. :-)
 
Regards Mal.


age 67 PSA 5.8 DRE slightly firm Rt
Biopsy 2nd July 07 5 out of 12 positive
Gleason 3+4=7  right side tumour adenocarcinoma stage T2a
RP on 30th July,
Post op Pathology, tumour stage T3a 4+3=7, microcsopic evidence of capsular penetration, seminal vessels, bladder neck, free of tumour, lymph nodes clear, no evidence of metastatic malignancy, tumour does not extend to the apical margins.
 
Post op PSA 0.5 26th Sept.
PSA 23rd Oct.0.5 seeing Radiation Onocologist 31st Oct.
Started radiation treatment on 5th Dec, to continue until 24 Jan. 08.
Finished treatment, next PSA on 30th April.

Post Edited (maldugs) : 3/27/2008 10:54:12 PM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/27/2008 1:24 AM (GMT -6)   
Hi Mal,
Your post hits a perspective on this cancer that affects all too many of us. I too believe that I am lucky to have a chance against this monster. But it has come with a cost. The HT has stopped our sex life. My Ruthie is very understanding as well. Lucky, yes. But I still carry mixed feelings about it. Frustrating at any age, I am only 45. But we do endure and have a great friendship. And I have been receiving very special love from others as well. You might agree with my journal yesterday ~ just click my link below. There is more to life, it's good to be alive, and I choose to Stay Positive!

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
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


StrictlyInc
Regular Member


Date Joined Dec 2006
Total Posts : 357
   Posted 3/27/2008 3:41 AM (GMT -6)   
That's great that you guys have understanding spouses, and, at least in maldugs' case, that life without sex is good.

At only 42, and with a much less understanding spouse, I can certainly relate to not imagining that the sex life would be over prior to surgery, and I am finding it very difficult to resurrect things.
____________________

Prostate cancer diagnosed: May 15, 2006 (age 40)
Gleason score: pre-surgery 3+3=6; post-surgery 3+4=7
daVinci radical prostatectomy: July 25, 2006
size of tumor: approx 1.1 inches; negative margins from surgery

- number of pads/day at 3 months after surgery: 3 to 5
- number of pads/day at 4 months after surgery: 1 to 2
- number of pads/day at 6-18 months after surgery: 0 to 1

- 1st post-surgery PSA: 0 (Nov 2006); 2nd post-surgery PSA: 0 (Feb 2007)
- 3rd post-surgery PSA: 0 (May 2007); 4th post-surgery PSA: 0 (June 2007); 5th post-surgery PSA: 0

The search for timber: took Viagra/Cialis approx. every other day, ErecAid once a day, injections. Peyronie's diagnosed 7/5/07. Now on daily Cialis, L-arginine and pentoxyfylline. Peyronies has stabilized and significantly reversed.

- PGE1 batting average: .364 (4 for 11)
- Bimix batting average: .706 (12 for 17)
- Trimix batting average: .500 (1 for 2) Grand total 17 for 30 = .567

"Lost in the valley without my horses, no one can tell me what my remorse is..."


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 3/27/2008 9:11 AM (GMT -6)   

At six months, I don't have much to complain about.  I have hit zeros twice now, and continent and my health is good.  I am still completely impotent.  I continue the pump/pill/injection routine, hoping one or all is effective in hurrying the regrowth and repair of the nerves...lol  At 61 I ain't no spring chicken, but I still want to scratch in the barnyard and crow occassionally.  eyes   

My wife is content, she says, with having me well and healthy.  We can manage to have sex with artificial help as needed and she seems content with that.  What she really feels or thinks, is kept to herself, I suppose....lol   Like I told her last night, I don't want to regain function so we can have sex every 2 days or week or whatever.  If I could regain it to the point that I could have it when I wanted it, even if only once every 3 months, that is my goal.  I want working equipment, even if it isn't practical to use it every day...  I don't want to yield a single thing to this disease.  I want it all back the way it was before surgery.  Impractical, maybe, but everyone's gotta have a goal.  If I end up with the pills not working, and having to rely on injections, then so be it, but I ain't giving up the fight yet.  Just the fact that we want to have a natural erection after all this is a big deal mentally for most of us in our road to full recovery, I think.  Sure, we say we will be satisfied with being cancer free and having dry pants.  We have the plan when we begin- first treatment, then continent, then ed overcome.  We want to check off each item on our way to full recovery, and it does bear on our state of mind if we aren't completing each one, I think.  Maybe not consciously, but sub-consciously, maybe.  Deep down I think we want it all, even if we won't say it or admit it to others.  Now as has been said, as we age, we begin to put less stress on sex and more on companionship and contentment.  This state can be reached by each of us by just the fact of aging, but to have it interrupted by cancer or to not be able to reach this stage because of early age diagnosis seems to bring out our fighting side on a lot of us. 


James C. 
 
Help support the forums so they can support you:  http://www.healingwell.com/donate 
 
Age 60 
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
01/14/08  Caverject started/stopped, aching.   .5ml Bimix started-success
 3/24/08   ED- 6 mts.-Viagra, pump, Bimix continues- no response
              Post-surgery PSA's:Nov-0, Mar-0


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 3/27/2008 9:30 AM (GMT -6)   

James, my perspective is very similar to yours.

My priorities were and remain to beat the cancer itself, regain continence (really, really close to that one now) and then beat ED.

The only slight difference, in my case, is that I am thrilled that I might be able to use injections for therapy and to achieve very usable erections.  I discussed injections with my wife a week or so ago and she was very happy to learn about them.

While I am not looking forward to the act of injecting myself, the fact that it might allow my wife and I to have sex is exciting to both of us, as we were unaware of that option until recently.

My hope is that a combination of regular pumping, Viagra, injections and time will result one day in ED recovery, at least to the point that I would just need Viagra....but time will tell that story.


Danman Bob
Age 57
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14
Biopsy result - 9 of 12 sticks showed cancer
Despite high Gleason score, cancer was confined to the prostate
Possible post-surgery radiation therapy...decision likely in late April 2008, depending upon PSA at that time
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of March 2008)
Began using Viagra 3 times a week December 2007 to stimulate blood flow
Began using Osbon Erec-Aid Esteem manual pump for therapy mid-February 2008
Will probably begin using bimix injections in addition to Viagra and pump in May 2008


smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 3/27/2008 11:33 AM (GMT -6)   
Mal, Your post brought tears to my eyes.  I feel much the same way you do. In my case I was fighting ED long before I knew I had PCa.
 
I think I can understand how younger guys might find the situation a little differenly as I probably would have 20 years ago also.
 
I know that a loving wife is a blessing that we should not take for granted.
Retired USAF Richard & Debbie on The Shores of Toledo Bend Lake Louisiana
Neg Bios 1997 & 2000 PSA within considered normal range
11/06 PSA 1.9 PSA 11/07 was 4.9 PSA 12/07 was 7.7 MDA 2/12/08 3.3 On Proscar so shud double
Biospy 1/10/08 Gleason score (4+5)9, Stage T1C  8 of 12 samples positive 
Bone scan 1/17/08 hot spot on ribs, CT shows rib enjury CT CHest 1/30/08 Clear
M.D. Anderson appt 2/12/08 CT Abdomin & Pelvis Clear Recommended Hormone&Radiation
2/19/08 Dr Fagin, Austin, TX did not recommend surgery based on medical history
2/22/08 Contacted U of Florida Proton Therapy Institute - Appt 3/13/08 awaiting acceptance
Scheduled for PET Scan and Prostascint Scan 2/24 - 3/2/08 Lake Charles, LA
Turn Stumbling Blocks into Steping Stones and Keep Smiling


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 3/27/2008 12:11 PM (GMT -6)   
Well here's the observations of another old coot.

I had ED before cancer and used Levitra for several years. It was acceptable but our sex life slowly deteriorated. After surgery and some setbacks due to low testosterone I became determined to get our sex life back. I used Viagra (from India), L-Arginine (a supplement that promotes blood flow) and finally Trimix. Slowly my erections started coming back. During that time we experimented with some sex techniques that we had not used before. (This is not the place for the details.) Now we are more active than we had been for 20 or so years. Orgasms are more intense and longer lasting than before surgery.

My point is that giving up on sex may be acceptable for some but it is not required.

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.
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
"Patience is essential, attitude is everything."
 


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 3/27/2008 12:44 PM (GMT -6)   
Jim, you mentioned that erections slowly came back.
 
Do you still use the trimix or are the erections adequate without it?
 
I plan to start injections in less than two months...and hope for good results.
Danman Bob
Age 57
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14
Biopsy result - 9 of 12 sticks showed cancer
Despite high Gleason score, cancer was confined to the prostate
Possible post-surgery radiation therapy...decision likely in late April 2008, depending upon PSA at that time
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of March 2008)
Began using Viagra 3 times a week December 2007 to stimulate blood flow
Began using Osbon Erec-Aid Esteem manual pump for therapy mid-February 2008
Will probably begin using bimix injections in addition to Viagra and pump in May 2008


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 3/27/2008 2:05 PM (GMT -6)   
Hey Danman Bob,

I started getting some swelling when I started Viagra and L-Arginine. That was about 7 months after surgery because as I mentioned, I had some setbacks due to low testosterone. At 9 months I started Trimix and it worked instantly for good erections. I am now 16 months out and can get a useable erection without injections but it is still inconsistent so I still use a small amount of Trimix. No pain, up for about an hour, great for sex.

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.
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
"Patience is essential, attitude is everything."
 


Bob D
Regular Member


Date Joined Mar 2008
Total Posts : 199
   Posted 3/27/2008 10:23 PM (GMT -6)   
I was fortunate and had bilateral nerve sparing prostate surgery. I got my first erection 5 days after
the surgery with the catheter still in. Three weeks after the surgery I am still a little sore down there,
but my erections are good. Not as firm as pre surgery but I am confident It will continue to improve.
My wife and I have always had a great sex and it is continuing even now.
I wish all here the best and hope all stay cancer free and regain erections.
 

Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 3/28/2008 7:26 AM (GMT -6)   
Before I run in where angels fear to tread...

There are soooo many alternatives to a healthy, intimate sex life besides intercourse. Biker 90 said that This was not the place for details. Is there some thread which could be started which wouild be marked "Frank sexual discussion" so that these very details could be discussed? This isn't a porn site, but techniques for mutual sexual fulfillment should certainly be part of any PCa survivor discussion, it seems to me. If some people are uncomfortable with the topic, they don't need to open it if they are warned.
Thoughts?
Paul
47 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6      (Biopsy 3/07 just suspicious)
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
-totally contained to prostate,
-10% involvement in L & R Mid lobes
 
 


StrictlyInc
Regular Member


Date Joined Dec 2006
Total Posts : 357
   Posted 3/28/2008 5:28 PM (GMT -6)   
I see no reason why these things can't just be discussed, but acknowledge that many here seem reluctant.
____________________

Prostate cancer diagnosed: May 15, 2006 (age 40)
Gleason score: pre-surgery 3+3=6; post-surgery 3+4=7
daVinci radical prostatectomy: July 25, 2006
size of tumor: approx 1.1 inches; negative margins from surgery

- number of pads/day at 3 months after surgery: 3 to 5
- number of pads/day at 4 months after surgery: 1 to 2
- number of pads/day at 6-18 months after surgery: 0 to 1

- 1st post-surgery PSA: 0 (Nov 2006); 2nd post-surgery PSA: 0 (Feb 2007)
- 3rd post-surgery PSA: 0 (May 2007); 4th post-surgery PSA: 0 (June 2007); 5th post-surgery PSA: 0

The search for timber: took Viagra/Cialis approx. every other day, ErecAid once a day, injections. Peyronie's diagnosed 7/5/07. Now on daily Cialis, L-arginine and pentoxyfylline. Peyronies has stabilized and significantly reversed.

- PGE1 batting average: .364 (4 for 11)
- Bimix batting average: .722 (13 for 18)
- Trimix batting average: .500 (1 for 2) Grand total 18 for 31 = .581

"Lost in the valley without my horses, no one can tell me what my remorse is..."


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 3/28/2008 6:12 PM (GMT -6)   
Hey guys, I certainly did not mean to put a damper on any frank sexual discussion here. I just meant that I didn't think a discussion of two old folks fumbling around in the dark would be of much interest.

So go for it....

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.
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
"Patience is essential, attitude is everything."
 
 

Post Edited (biker90) : 3/28/2008 5:15:47 PM (GMT-6)


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 3/29/2008 7:21 AM (GMT -6)   

Biker!

No! I didn't mean it as a disparagement against what you said, but had noticed that many guys, very naturally, are a fairly nervous about bringing this stuff up. Fumble Away - as long as it's fun!

I remember reading one really old post on here where one guy laid out all his sexual troubles, then was so embarassed that he had. But the response was like a dam opening. They guys were all so relieved that they were not the only ones.

It just goes to show, we're all still like kids and not sure we want to be the first to admit we're not sure what to do..

Paul


47 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6      (Biopsy 3/07 just suspicious)
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
-totally contained to prostate,
-10% involvement in L & R Mid lobes
 
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/10/2008 10:57 PM (GMT -6)   

Dear Forum Friends,

 

I’d like to “chirp” in here and state that we have been given a broader range to our discussions on the recovery issues (urinary continence and ED) issues that we face with our fight to be cancer free…

 

Please ~ feel free to talk and share but be sensitive to the fact that minors are permitted on this site.  Wording is important…

 

I too remember the thread that had a member opening up completely and it truly did open the doors for many of our members to reach down deep and open up some areas of sensitive issues.

 

Again ~ talk freely but remember that the interpretation should remain on a clear ground of healing/recovery mode.

 

Thank you for making HealingWell.com  the best prostate forum!!

 

v       bluebird ~  Moderator for Prostate Cancer Forum

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