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Posted 10/27/2007 11:52 AM (GMT -6)
I first logged in around the beginning of June after being diagnosed. There's been a long interruption. First I went ahead with hip replacement as planned, on July 27. I'd originally decided to wait for the prostatectomy so as not to have two consecutive surgeries, but then I ended up having a Da Vinci procedure on Sept. 20. I got the results of the first post-op PSA yesterday, which was 0. So that's good. The prognosis for continence seems good, though I haven't mastered it yet, by any means. The sexual prognosis isn't optimistic, since the prostate was enlarged and the majority of the nerves apparently were embedded in it, so I lost them. Since the surgery there's been virtually no response to direct stimulation of the penis, though I have slight nighttime erections and two that were somewhat more substantial, though nowhere near usable. I've been told by the surgeon not to expect much for the first three months, anyway. He recommends using a vacuum pump just to kind of exercise the poor guy, even if I don't choose to go that route for sex.
One question is what sort of pump to use. The surgeon recommends going to a sex shop, since I can get a product that's as effective as the medical type but much cheaper. Any recommended brands or styles? My wife and I have decided to call it a field trip.
I'm sure many have had this experience, of expecting more nerve survival and then feeling as if the rug has been pulled out from under us. I've had the depression and anger. Fortunately, I have work I like to keep me occupied, and my wife is terrific. We've had some sexual fooling around, enough to confirm that both of us still can have orgasms.
I guess I'm asking if people have suggestions on how to deal with this change of life. Realistically, the odds against regaining potency don't look great. Is there anything that give me a better chance? The various drugs? the injections? Exercises? Mystical incantations?
Thank you.

 
Age: 56
Pre-op PSA: 10.2 (one lab) or 6.4 and 6.7 (another lab)
Da Vinci 9/20/07
Gleason 6
1st post-op PSA: undetectable
Continence: dry some days, typically a couple of leaks per day
Sexual: most nerves lost because embedded in enlarged prostate. Apparently some blood flow--some nighttime enlargement--very little response. Grateful for desire and orgasms. Just ordered pump; don't know what to expect from it. Great wife.
 

Post edited to add signature : )

Post Edited By Moderator (bluebird) : 11/13/2007 5:31:53 PM (GMT-7)

Posted 10/27/2007 1:21 PM (GMT -6)
KMC51,

Read Tamu and Swimom's threads on E.D. 
There are many more threads and posters on this topic but I can't recall who started which thread.
Scroll down to the third or fourth post on the "....Helpful Hints" thread at the top of this page.
Our Moderators (Bluebird and Idaho) keep informative threads indexed there by topic.
Just point and click....

The main thing I point out is that most patients don't get usable erections without PDE5's (like Viagra), Vacuum Pumps, and/or injections until one to two years have gone by.

Using these things statistically improves the time required to achieve erection function.
They also provide therapy to the tissues in the meantime as nerves heal and trauma subsides.  Most of what I read suggests you create an erection one way or another once a week until your function returns.  It prevents peyronies and stimulates both tissues and nerves.
I also read that those who use injections get their function back, as a rule, sooner than those just using pumps and PDE5's.

Best wishes and warm regards.

CCedar
ICTHUS!
2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined.  :)
Pad Free @ 14 weeks.  Six Month PSA <.003  :)
At 6 months, ED treated with Pump Exercises & 50mg Viagra Daily
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?

Posted 10/27/2007 1:50 PM (GMT -6)
Boy, I hear ya . . . Most of the advice you'll see on this forum, and echoed by my dr certainly, is patience, patience, and more patience. The fact that you're getting even some degree of natural erections suggest to me that some nerves are still present and beginning to regenerate. Cedar's correct that it takes a lonnnggg time for nerves to heal. My dr told me not to expect much of anything in the first 3 months, and then very slow, gradual improvement over the next 12-18 months. Some guys are luckier and recover much more quickly, but that's pretty rare. Good luck!
Puget
60 years old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Clinical Stage: T1c
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07 = <.01 (Hooray!!)

Posted 10/27/2007 3:42 PM (GMT -6)
http://www.rejoynstore.com/impepu.html

Rediscovering what works can be an adventure.
Age: 57 (49 when diagnosed)
PSA 100+ 3/1999
Biopsy -positive, both nodes 03/1999
Bone Scan and CAT scan negative 4/1999
Radical prostatectomy and bladder neck removed 04/19/1999
HT - 05/1999 (Lupron every 3 months for 9 months)
RT - 6/1999
PSA 0.0-0.2 until 2001
Casodex 150mg 2001 until 2006
Casodex 100mg 2006-present
PSA 0.4-0.6 2001-2007
 

Posted 10/27/2007 4:04 PM (GMT -6)
Hi KMC51,
Congratulations on your zero PSA result! That's a very good start. It seams that most of us here have an bigger issue with ED. Patience is definitely needed. It took me about 10 month to get anything 'usable' using about 50mg of Sildenafil. Hopefully in a few more month I won't have to use the chemical assistance :-). Best of luck with your continuing recovery.
 
Magaboo
Born Sept., 1936
PSA 7.9
Stage T1C
Gleason's Score 3+4=7
Open RP 28 Nov 06
Dry since early Jan 07
1st PSA result on 15 March 07 = 0
2nd PSA result on 15 June 07 = 0
3rd PSA result on 12 September 07 = 0
 

Posted 10/27/2007 6:45 PM (GMT -6)

The fact that you are getting anything resembling an erection after just six weeks is very good.  I don't recall seeing your age, but it can make a difference.  If you are in your forties rather than your sixties there is a good chance that things will get working.

I had very little response early on, and used a pump with Viagra.  It was awkward and uncomfortable, so I was glad when I moved on to Caverject injections. I am still fine tuning. I see some response now without the chemical or mechanical help and hope the future will be looking up.

You can buy a pump online for about $60.Shopping.com lists recreational pumps from about $25.  The high priced model is $300 or $400, but it can be prescribed by your urologist and paid for in some cases by insurance.  Thus the much higher price.Check on line, I think mine was an Encore.  Happily I am not using it any more.  Use the Viagra regularly. It helps to keep things doing there thing.  If your insurance won't pay for Viagra you can get a generic from "All Say Chemist" an online pharmacy located in India.  There product is good. www.alldaychemist.com

 

 
Biopsy 10/16/06
T2A,  PSA 4.7
Gleason 4+4=8 right side
adrenocarcinoma of prostate
DaVinci Surgery 01/16/07
Post op report,confirms Gleason4+4=8
no extra extension/invasion identified
age 65
no continence problems
Back on the golf course...
90 day PSA  less than 0.01 (undetectable)
Six Month PSA still undetectable
Dealing with ED problems with Caverject/Viagra
 
 
 

Posted 10/27/2007 11:08 PM (GMT -6)
Talking about the pump. My surgeon scheduled me an appointment with the rep who handles Response II from SomaTherapy-ED By Augusta Medical Systems Augusta, GA. Their web site is www.augustams.com It can only be purchased by prescription. The unit costs about $515. Medicare or Medicaid covers 80% and my supplement paid the rest. I wasn't out anything except the trip to the appointment. The company rep had some suggestions to follow and the literature with the unit backed his words. The booklet said to use the unit 5 to 7 times each week for several months. The idea is to get the penis back to accepting blood in quantity so every thing will get back on line. My surgery removed most of the nerves and I was told it might be 10 to 12 months until ED is not a problem. This said I am starting to use the pump and can see that it does get the blood pulled in. It is working. Good Luck and God Bless, Uncle Dan
Age 67
No symptoms, DRE negative, 10 - 06 PSA 5.44, 01 - 07 PSA 6.47
5 - 07 CT and Bone scans negative, 05 - 07 Biopsies, 2 of 6 positive
Gleason Score (3+4) 7 Stage T1c
08 - 14 Dr. Dasari - Baptist Hospital, Nashville da Vinci RAP, five hours surgery
Some right nerve and all left nerve removed,
Hospital discharged 8 - 16
Pathology report Negative margins, Encapsulated, 50% left side
Lymph nodes 2 R & 1 L - Negative, R & L seminal vesicles - Negative
Gleason changed (4+3) 7 closer to 8 than 6
9 - 26 Great PSA 0.000, 9 - 27 Starting on meds for ED
10 15 Dry most of the time, occasional leak (dribble )
Viagra no help yet, will try Lavitra ?

Posted 10/28/2007 7:03 AM (GMT -6)
KMC51,

Sounds to me that you are really motivated to get back into quality sexual intercourse. If this is true then you are a good candidate for injections. It takes a certain level of motivation to get pass the fear and anxiety of injecting you penis. Injections work whether or not the nerves were spared. You can try the pump and it is good for rehab but if you are like a lot of us on the forum the erection produced by the pump, while providing for penetration, just does not have the closeness to a natural erection as what you get with injections. My suggestion would be to get a pump of some kind and start using it everyday for rehab and intercourse if you so desire. If you have insurance they will pay for a prescribed model. In my case they paid 80% of the Vacurect pump I bought. You should discuss injections with your urologist. There have been a few cases on the forum where the urologist never discussed penile rehab or injections with the patient. The threads here on injections have a lot of good information and you can search the internet and find more. Properly done injections are nearly 100% effective.

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
Undetectable PSA on 6/25/07

Posted 10/28/2007 12:58 PM (GMT -6)
I think I lost my reply looking for the Helpful Hints. Anyway, thanks to everyone for your advice and experience. It makes me more hopeful. I'm 56, by the way.
While I'm at it, I have some questions about kegeling for continence. One source said to practice stopping during urination and holding for 10 seconds or so, so that's what I did for the first four weeks. The urologist just told me not to do that, but to kegel at other times. I think it was Walsh's book that said too much of this can make the muscle tired and lead to leaking. I suppose it varies from person to person, but is there any consensus about the best approach?
Thanks again.
Posted 10/28/2007 1:02 PM (GMT -6)
I haven't been able to find that Helpful Hints thread.
Thanks.
 
 

Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)

 

 

Post edited to add link ; )

 

Post Edited By Moderator (bluebird) : 11/12/2007 7:57:16 PM (GMT-7)

Posted 10/28/2007 7:54 PM (GMT -6)
KMC51,

The Helpful Hints Thread is actually at the top of each page.  For example, at the top of this very page where we find your thread.
It is the second (shaded sort-of yellow) "Thread" and it is actually called

Prostrate Cancer Resources, Helpful Hints, and Topic Thread Links

After you open the thread, you need to scroll down several posts to get to the index of topics.

As for the Kegel question, stopping the stream is one of the best ways to isolate the muscles for kegel exercises - Kegel exercises to be done while not urinating.  (I still do them all the time....)
One of my favorites is to stand over the toilette with a full bladder and cough and see if you can keep from leaking.....
The argument against doing the "urine stream stop exercise," after you have isolated the muscles - is that this flexing confuses the unconsciously controlled valve at the base of the bladder that your kegel sphincter is supporting.  The kegel muscles are not a vice-grip, but rather a "muscle tone" of many many pelvic floor muscles that are recruited in a coordinated effort/pattern/frequency -  to avoid fatigue and jump in to close the urethra and aid the bladder valve that opens and closes - more by your suggestion than command........
It is an art, like riding a bike that cannot be learned theoretically!

Thanks for your question on E.D.
The responses you received helped me a lot as I need motivation to take the time to work on these tissues.

CCedar
ICTHUS!

Posted 10/29/2007 2:28 PM (GMT -6)
Cedar/Icthus,
Thanks for the clarification of the kegeling. I've been researching on-line, and it's not as simple as the urologist makes it sound. I think I have a basic hang of it, but it's probably not as precise as it could be. That was an elegant explanation, by the way.
Posted 10/29/2007 2:46 PM (GMT -6)
I also am having problems with this kegel thing.  So far "doing a kegel" seems to make the urine come out instead of stopping it.  Maybe it just takes time.  Also, I had no nerve damage and have reason to believe at this point (about 3 weeks post surgery) that I will be functioning ok sexually, but you asked about an inexpensive source for a pump.  I have no idea if they are any good, but the following site advertises pumps at $25-$30:  Xandria.com.  I hope that this doesn't violate any rules, but feel free to delete it if it does.
Posted 10/30/2007 6:08 PM (GMT -6)
I found good, specific info about kegeling online and also through the Helpful Hints entry, Sex and Incontinence, under the ED heading.
Posted 10/30/2007 9:51 PM (GMT -6)

I would highly recomend having your Dr. refer you to a Physical Therapist that specalizes in bio-Feedback to treat incontenance.

I did not find mine untill about 6 months post op.  She now thinks alot of my problem is that my hip area muscles are too tight and the do not let the pelvic floor muscles pull upward to support the bladder like they should.  I have been gaining streingth and tone.  Only a slight improvement with the leaking.

 

 

    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
        Biopsy Sept. 27, 2006 - Diagnosis Sept. 29 - 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
        RRP on Oct. 17, - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 28 days 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 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.
    Oct 17, 2007 1 year Post Op - Still fighting moderate / Severe            incontenance. Using 4-6 pads a day.  Erections usable....sometimes!...Better with 100mg Viagra
   

Posted 11/10/2007 11:09 AM (GMT -6)
tongue  Hi ~  again.....KMC51  & Loved Ones…

 

Welcome   to…   ~ HealingWell ~

 

and

 

A   “Special”   Warm Welcome  to  You !

 

Knowledge gives us POWER….  POWER takes away the fear.

 

~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~

 

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

 

Welcome New Members ~ to HealingWell

 

 

The information (link) listed above is to help you get started on your journey. 

     It is a journey best traveled with friends. 

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

 

v      IdahoSurvivor ~  Moderator for Prostate Cancer Forum

http://farm2.static.flickr.com/1160/1313099593_9f819e3ff8.jpg

 

v      bluebird ~  Moderator for Prostate Cancer Forum

http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebirdWelcome.jpg

mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)

Posted 11/10/2007 11:14 AM (GMT -6)
  tongue Hey ~ KMC,

Glad to see you're back.... The forum has grown tremendously over the past year so I'm so thankful you touched back base with all of us.  You definitely have had a busy schedule and now to know you are recovering is wonderful on both the hip and pc surgeries.

 

I've recently updated our Welcome Message...  It will help make things a little easier for you to navigate.  You can copy and past the links into a WORD document and save it on your computer.  Then when you need to look something up you have it at your fingertips.

 

Glad you’re back…. Stay close!  In Friendship ~ Lee & Buddy

mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)

Posted 11/10/2007 11:16 AM (GMT -6)

Partial quote from above:

Da Vinci procedure on Sept. 20. I got the results of the first post-op PSA yesterday, which was 0. So that's good.
 

tongue    Yea!! KMC,

 

1st   PSA’s…   !!!~~~>>>  Woo~Hoo <<<~~~!!! undetectable

 

Cause for celebration!!!!!  Definitely!!!

What a wonderful day it is ~ each and every-day….   

Enjoy it to the fullest. 

 

In Friendship ~ Lee & Buddy

*     *     *     *     *     *

The ultimate “goal”… we all strive for… Thank you for sharing ~ that your goal has been met….

It is very important to “all ”of us!  This is a way of positive feedback…

A way of showing others Hope… and a way of Sharing.

 

J  Caring is Sharing ~  Thank You for Sharing  J

 

 

Threads started by:  KMC51

10-27-07  post surgery

06-18-07  new diagnosis

 

Posted 11/13/2007 6:55 PM (GMT -6)

  tongue  Copied postings to help keep KMC51’s journey together…

 

11-12-07  Quote from KMC51's thread with no subject/title… (No Subject)

I hadn't included the personal history info with my previous entries. It seems as though those become permanently attached to our names when we post messages. I'm not sure how to do that part, but here's the info:
Age: 56
PSA: 10.2 according to one lab, 6.4 and 6.7 according to another lab (two separate occasions)
Gleason 6
Da Vinci robotic prostatectomy 9/20/07
Continence seems to have come out pretty well. At this point I have some dry days but usually not more than 3-4 leaks a day.
I was told the nerve bundles were largely embedded in the enlarged prostate, so I lost the great majority of them on both sides. There seems to be some blood getting down there, some response at times during stimulation, some very partial night time erections, nowhere near usable.
I've ordered a pump and don't know really what to expect from it, considering the nerve loss.
Great support from my wife.
We've been able to enjoy sex. I'm grateful to still have desire, and orgasms. I'm frequently knocked over by the sense of loss, which I'm sure is not a unique experience. 

 

cool  Quote from Tony *TC-LasVegas… copied here

Hi KMC,
If you are logged in, then next to the "Log Off" on the blue bar above you'll see "Control Panel". Click that then a new bar will appear, click "Edit Profile". You can put in as much information as you like on that screen. The bottom box is you signature. You can put all the above information there.
Tony
 

:-) Quote from KMC51… copied here

Tony, Thanks for the directions. It sounds as if you had an advanced case for someone so young. What is HT? So your PSA dropped after surgery but you still needed all the followup treatments? If your PSA is undetectable, do the doctors think you're pretty much out of the woods?

 

cool  Quote from Tony *TC-LasVegas… copied here

Hi KMC,
Unfortunately, this disease is not discriminant about age. I have late stage III disease. It is considered advanced prostate cancer. If I do nothing, I bear a 92% probability of relapse, depending on which nomagrams you look at, but there is no chance I won't fight it. For that reason we added the adjuvant therapies to swing the odds back to a more reasonable 50-50. For my case, and others like me we are not truly out of the woods for years, if ever. I am doing well and have already shown signs of a durable remission. While I have an undetectable PSA, the best sign of things is that it doesn't really bother me and I am living a normal life. HT is Hormonal Therapy. We are basically removing the male hormone testosterone and trying to starve any cancer that was not removed by surgery. An undetectable PSA is not to say there are no more cancer cells, but rather there are not enough to detect. When my prostate was removed the margins where they cut it out were positive for carcinoma and local metastasis. Which does mean that cancer was on the other side of the knife and still in my body. All stage III (T3a or T3b) many members here have a similar issue. T3b is evidence that the disease may be stage IV but there is no proof yet. What makes mine a high risk is the grade 4 disease (Gleason 4+3) and the high PSA before surgery 19.8 and the staging. But again, I am well and very much interested to help others in any way I can. By being here at HealingWell I have encountered all stages and people with prostate cancer. I have learned that the guys who are more advanced than I are just like us all and most are leading very productive lives. That was very important for me to see and it is very inspiring. I kinda grew up with this disease and I consider these people my dear friends. While I'm sorry to meet you here, it's still a pleasure to do so. You appear to be doing well. My mantra is diet, exercise, and a positive attitude.  Good luck to you!  And may God Bless you as well.

Tony

 

  tongue   Quote from KMC51… copied here

Thanks to Bluebird for navigating the technical challenges. I feel kind of speechless at some of these entries, like Tony's. People face these situations with such bravery.

 

 

smurf   I'm really happy you didn't mind.... The information is too important to lose!!! 

Powerful stuff huh!!!     Your "Signature" looks GREAT!!!!  Good job... yeah

v      bluebird ~  Moderator for Prostate Cancer Forum

Post Edited (bluebird) : 11/13/2007 5:41:33 PM (GMT-7)

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