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ED got me down

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Posted 6/26/2007 9:52 AM (GMT -7)
I need some words of encouragement. After going through this whole ordeal, with positive attitude and no complaining, I hit rock bottom last night. My darling wife and I tried for the hundredth time to be intimate with the help of 500 mg MUSE and nothing. Don't know why but it hit me like a ton of bricks. First time since diagnosis that I shed a few tears. Can't seem to get it out of my head that the whole surgery thing was a big istake, the cancer sooo small, maybe I should have waited. But I guess im alive and will be around a while and thats a good thing.
Diagnosed 1/26/07

Stage Tc1

Gleason 6

PSA 3.8

12 samples, positive in one 15%

Biopsy - 1% involvement, no bladder neck, Gleason 3+3, Tc1

Age 51

Surgery (robotic) May 4 2007 City of Hope

Final pathology - fully contained to prostate, TC1, Gleason 3+ 3

Fully continent one month

Posted 6/26/2007 9:59 AM (GMT -7)
Hang in there Pete! you just had surgery in May! that is not enough 2 months yet. Jeff could not get an erection worthy of intercourse until he used the pump. even now, sometimes it doesn't work well enough. We can relate with the discouragement and that's OK to feel that way. but keep a positive attitude and ask your doctor about the pump. are you taking ED drugs? yes, this is not an easy journey. kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump

Posted 6/26/2007 10:43 AM (GMT -7)
Pete, Just six weeks out of surgery and you are not leaking all over the place that is good news. The cancer you had might of taken six years to come out and rear its ugly head but it was on the way. Sounds like you have a loving caring spouse to help and encourage you. Don't give up on getting up because you can and you will. Have you tried working with a pump the Vacurect is very user friendly takes some getting used to but after 9 months since my surgery with the help of the pump I can now get and maintain **** star size erections bigger than I ever was. (wish I ahd known about the pump before I got the PC) Yes, it is different but still a good time can be had by all with a little imagination cooperation and sense of humor. The vacurect is also good for therapy like a work out and helps the blood flow in the area it is needed. They also give you a 30 day money back no questions asked guarantee. Try not be so discouraged at this point your body has just had major invasion and it will take time to heal. You will be ok, most of us have "lost it" like you have just shared. And we have shed tears about the whole @#!&**! ordeal. This forum is a great place for help and encouragment. Thank you for posting this and sharing your story. It is going to be ok, just some more time is involved in the healing process both physical and mental.  I just turned 58 June 8, and  My surgery was the DaVinci 10/12/06.  Everyday it is getting better and better it will for you too.  http://www.fitzz.com/The-Vacurect-OTC-Penis-Pump-P952C0.aspx
Posted 6/26/2007 11:09 AM (GMT -7)
Hi Pete42,

I'm really sorry that you're that your going through this ordeal post surgery. It really is way too soon for most men to see any results in that area. My husband's urologist said that it usually takes 3-6 months before you can see any improvement in ED. Perhaps you can ask your urologist to recommend an ED specialist. Also, try taking 1000 mg of L-arginine at night along with your perscribed medication, it's suppose to help with nerve dammage.

I personally think it's great that you have a such a strong interest in being intimate. For now, just give your body some time to heal from the trauma of surgery.


Best of luck,

AEG
Posted 6/26/2007 11:11 AM (GMT -7)
Simpatico, brother, that's the best encouragement I can offer...

I am 11 months past surgery right now. Penile shortening - yes. Natural erections - big no. Erections with pump - impressive looking, I guess, but they fade fast during intercourse. And, as you can see from my signature info, my injections batting average is in the basement.

But hey, we are on the right side of the dirt, right?!? It behooves us to keep trying to improve in the ED department, despite the frustrations. It would be very easy to give up, though...

I am seeing my urologist for my 1 year follow-up tomorrow... ton of questions to ask him.
____________________


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

ongoing post-surgery treatment: Cialis every other day, Viagra "on-demand", ErecAid pump daily Cialis or Viagra every other day, ErecAid pump twice daily (when I can manage it)

- PGE1 batting average: .364 (4 for 11)
- Bimix batting average: .200 (1 for 5)

Posted 6/26/2007 12:00 PM (GMT -7)
Pete!
Thank you for sharing this part of your journey. Your feelings are completely normal. Bob had one nerve removed and the other, although spared was damaged a great deal. His doctor first prescribed Cialis, which other than minimal "thickening" really did nothing. At one point Bob too was in tears and commenting maybe he should have not had surgery and that he was no longer a "man".

Big thing here is that left untreated the cancer would eventually spread, and the ED would be an issue at that point with terminal cancer as a result.

His doctor recently prescribed Trimix injections . . . there is inital period of time in determining the correct doseage, but once there the erections are as good as ever before. This method doesn't eliminate the potential for healing and normal erections at a later date, but certainly does the trick in the interim. The doctor even said that SOME of his patients use the injections and later when a "spontaneous erection" occurs they decide to continue the injections because they are so much more effective.

Hang in there Pete . . . .things will improve. Do consider the injections, but your doctor may want a bit more time post surgery to pass. But know that your friends here are pulling for you.

;o) Linda & Bob
Bob (61) - Laproscopic Prostate Removal Sept 27, 2006.

2 of 12 malignant biopsy samples - gleason 3 + 3 = 6.

 

Pathology - cancer completely contained, even a second more aggressive, previously undetected cancer)

PSA UNDETECTABLE Nov 2006, Feb and May,2007.

Bob also has two secondary conditions -- Polycythemia (elevated red & white cells & platelets) and . . Myelofibrosis) -- If anyone has experience with or information on these, please email us.

Posted 6/26/2007 5:41 PM (GMT -7)
I am 14 months post opp and have just reached the point where anything at all is happening. The main thing is to not give up - it just takes time. Not much time for some and lots of time for others but as Raheeb posted, "we are on the right side of the dirt".

Live the life you have with all the gusto available - the rest of the stuff will catch up in time.
Age 67

Posted 6/26/2007 5:47 PM (GMT -7)

    I hate to bash anyone but your only two months out?   Chill out,  Try wearing my shoes!  8 months out and still leaking 10+ pads a day.  I have had some sucess with erections though!

    Take your time and count your blessings!

    KW

    43

    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.

    Gleason 7

    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate

    RRP on Oct. 17, 2006 - Nerves on right side saved.

    All Lab's clear.  No Cancer outside prostate

    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006

    First Post op PSA on Dec. 11, 2006  Undetectable 0.00

    Office visit on Jan. 19th due to continued excessive urine leakage.

    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)

    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!

    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 

    March 8th Started Detrol LA to see if it helps with the leaking?

    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.

    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!

    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!

    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!

    June 1st Start Bio-Feedback to try to control my leaking.

   

Posted 6/26/2007 8:22 PM (GMT -7)
Hey Pete,

Like others have said "hang in there". I'm still hanging real loose after 6 months wth a little improvement but not enough for intercourse.

My wife and I have almost daily discussions about ED and what we need to do next about it The folks on this forum have lots of different experiences with the many forms of treatment. We are all different. The one common thread that we all have to contend with is patience...

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.

RRP 12/7/06. Nerves and nodes okay.

Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.

PSA on 1/3/07 - 0.04. 

PSA on 4/4/07 - 0.00  T level - 48  Restarted T therapy.

Next PSA on 7/18/07.

 "I have cancer but cancer does not have me."

Posted 6/27/2007 5:49 AM (GMT -7)
At just 6 weeks, you seriously need to relax Pete. The body will heal at its own pace. Sending stress into high geer can only slow you down. You 2 will either have to enjoy what you have until your body heals or try shots for the short term. Can't say we weren't worried but we also knew what to expect. Not many men recover quickly. Most of us take up to 12 months. Even then it isn't an overnight process. Takes time.

There are Doc's who believe shots starting a month after surgery promotes more rapid recovery. Others, the majority say 3 months then use shots. Good Luck.

Paul
 

Posted 6/27/2007 6:58 AM (GMT -7)
Pete. first I'm very glad your surgery was a success and you're cancer free.

Give it some time. I have a stage3 cancer that spread to the left side of prostate. So the surgeons were not able to save nerve bundles on left side.

Now, for a lot of medical, life-saving reasons,
I'm on Hormone Therapy which causes ED.
And I voluntarily agreed to this thretment.But its intermittant (every other 3
months), so I'm on for 3-months and flat the other three. What a hoot!

Seriously, Pete, be patient and give your body time to heal. You'll be ok. And thanks for bringing up an important topic.


All Good Thoughts.

Vet
Diag: 12/03/05
Biopsy: Gleason 10
Intermittant HT: 12/15/05
Surgery: 2/14/06
EBRT: Early June Thru July, '06
Diag: T3b Seminal Vesicle Involvement, Gleason 5 + 4=9
Current PSA: .01
Posted 6/27/2007 7:54 AM (GMT -7)

Pete,

Hey, I know how you feel.  At the six week post surgery point and with no semblance of an erection using Viagra I too became depressed and wondered it I chose the wrong treatment.  I had considered proton beam because of the half dozen or so guys I had contacted that chose that treatment and they had very little side effects and all were fully potent.  I chose Da Vinci for the piece of mind. 

As recommended by several who have responded try the pump.  It allowed me to be able to have intercourse but lacked in quality.  It is very good for rehab.  I eventually moved to injections.  I am using Bimix due to pain with Caverjet.  The Bimix gives me an erection that is very firm and almost like the ones before surgery.  I just had an appoitment with my urologist on Monday for my six month post op check.  We discussed the ED and he recommended that I combine the Viagra with injections to further stimulate the penis.  He told me that it can take up to two years after surgery to get normal erections back. 

The best way to get passed the depression is to take action so I would try the pump or talk to your urologist about injections.  As my urologist told me men that are highly motivated generally will go straight to the injections.  Those that are not will go the pump first.  You have to try the pump to know whether or not it is for you.  It was not in my case.

Note that you are still healing. 

Tamu

Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3

Da Vinci on 11/01/06, Catheter out on 11/13/06

56 Years Old

Post Op Path, Gleason 3+3, Approx. 5% of prostate involved

Prostate Confined, margins clear

Undetectable PSA on 12/18/06

No more pads as of 1/13/07

Began injections in April '07

Posted 6/27/2007 9:39 AM (GMT -7)
Thanks to all who responded with gracious support and thanks too who responded with a "stop whining" kick in the pants. Sometimes it just feels good to get something off your chest, and for me, this is a good place to do it.

Diagnosed 1/26/07

Stage Tc1

Gleason 6

PSA 3.8

12 samples, positive in one 15%

Biopsy - 1% involvement, no bladder neck, Gleason 3+3, Tc1

Age 51

Surgery (robotic) May 4 2007 City of Hope

Final pathology - fully contained to prostate, TC1, Gleason 3+ 3

Fully continent one month

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