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Golf1
New Member


Date Joined Oct 2009
Total Posts : 5
   Posted 12/21/2009 7:47 PM (GMT -6)   
Hello to all of you. I have been following the questions and comments many of you have posted and you have been a big help to me in getting through this ordeal.  I had robotic surgery 10/13/09. The incontinence is almost gone but the erectile dysfunction continues to be a problem. I have been on Viagara for about 5 weeks but I have seen minimal change. I'm interested in your experiences as to how long it took for many of you to get through it and/or does it ever get better. My wife has been wonderful about it, and the entire process. I recently read the comments regarding the differences in Viagara and other similiar medications many of you discussed, but would like to hear more about other options, how long, etc, etc. Thank you in advanced.
 
                                                         Randy

IKE-D
Regular Member


Date Joined Jun 2009
Total Posts : 77
   Posted 12/21/2009 7:55 PM (GMT -6)   
Hi Randy - sorry to hear about this. I just wanted to say take heart. I think it's a little too soon for ED resolution. Over time you'd see some progress. In my case, I lowered my expectations a great deal. I gave myself over a year (especially since I lost half my nerve bundle - only one side was saved) Between 3 to 4 months I saw some progress and I have been seeing more and more of it. You are still healing and so give yourself some time.
 
Regards
 
 
 
>Age 41 (At Dx-July 05) -Psa during annual physical went from previous 2.8 to 3
>Biopsy by 'primary' Urol Aug 05 - Gleason 6 low grade. 2nd opinion at  Hopkins confirmed Dx
>Chose Active Surv (AS)- modified diet etc.
>Around Oct 07 Psa moved up to 5.5. I decide to treat at Hopkins. Not sure what kind yet. My doctor decided on re-biopsy first.
>2nd Biopsy Dec 07 at Hopkins was NEGATIVE for Pca! Nothing found in 14 cores!
>'Primary' Urologist baffled. Planned a saturated biopsy (22 cores) to settle issue once and for all. I wasn't going to do 22 cores wide awake!
>July 07 - Did MRI just for comfort. Nothing significant found. No spread. I'd live! Still in AS mode.
>July 08 - Saturated Biopsy performed. Cancer confirmed again (of course, you took 22 cores)! Same Gleason score, same grade, similar numbers but Urol says treat very soon! I am thinking not so fast - numbers are same and you told me it means not aggressive! In any case I agreed with Urol that I will go the way of the Seeds. I research seeds more and I don't like it.
>July 08 - Dec 08 I re-lapse back into AS mode but seriously researching/considering treatment options beside surgery - went on to Mass Gen and Georgetown to explore proton therapy and Cyberknife respectively. Anything but Surgery! Both experts who are about my age were unanimous in strongly declaring they will chose surgery 'if they were me'. In addition, I learn that if either if these radiation methods (and seeds too!)  failed, no backup plan (or will be complicated)! I got the message!
>Jan 09. Went back to see my doc at Hopkins. I decide to put my fate in the hands  of the 'Da Vinci Robot' then!
> May 09. Had surgery. some Pain and discomfort but normal. Pathology all clear. Gleason 6 as before. Feeling very lucky. I gambled (based on my numbers and got 4 more years!) on the slow nature of the cancer and took my time. Very happy I finally did it. Hoping for a great recovery of all 'key' functions. Great wife and family helping out.
> Sept 09 - 3month PSA - Undetectable!


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 12/21/2009 8:06 PM (GMT -6)   
Randy,
I am 3 months ahead of you but way behind you in incontinence and ED.
The statistics show 2/3 of us will be continent at 3 months and 2/3 of the remaining third will be continent at one year. There are study results somewhere in other posts that show something like 60% of us will have ED at 3 months and 40% will have it at one year. You should look for the study to see the actual numbers. (I'm pretty sure my numbers are close.)

Unfortunately, somebody has to be at the lower end of the curve. So, for all you guys that are continent without ED, you're welcome!
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8. Start 2 weeks of Cipro to rule out protatitis.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next?
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
. 9/27 2 months: Still 3 pads per day.
11/14 4 months: Still 3 pads per day. 420ml/day, 91 um leak.
12/11 5 months: Still 3 pads per day. 400-450ml/day Experimenting with Nyquil for 10 days: Can sleep through the night but withdrawal is bad. Stopped 12/20.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04 undetectable.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/21/2009 8:31 PM (GMT -6)   
Randy, patience my brother, you only had surgery barely 2 months ago, probably way too soon to start feeling discouraged on the ED front.
Hope you get some signs of life soon there. You are doing good so far with everything else.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA:
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 in place


skeener
Regular Member


Date Joined Dec 2009
Total Posts : 214
   Posted 12/21/2009 8:59 PM (GMT -6)   
Had my open RRP on 10/23/09.  Have been surprised how well the surgery and recovery have gone.  Just drip a bit now.  However, the ED is another story and I can feel your pain.  To go from "springing" into action at the thought of a good time to nothing, zip, nada now is a major disappointment.
 
However, I could not live knowing the cancer was in me and the chances were very good that it would be all removed.
 
From the discussion in this forum, it looks like we may have to wait up to a year for ED reovery.  Gonna be a long cold winter and long hot summer!
 
Skeener
Age:  63
 
Biopsy May 09 showed 2 of 12 cores positive for prostate cancer -- 1 at 5% and 1 at 25%.  Cancer indicated as non aggressive.  Gleason score 3+3.
 
Considering all the controversy about whether action is needed or not (I could die with prostate cancer not from it), gave consideration to active surveillance.
 
Had open RRP on Oct 23/09 in London, Ontario.  Excellent surgeon.
 
7 Weeks Post Op -  The fears I had about bad things about the operation and recovery did not materialise except of course ED!!.  Otherwise, everything went very smoothly.  Incontinence not a problem.  Wear a pad when out just in case. Pain was never a problem.  Forum tells me can't do anything about ED right now.  Give it a rest!!
 
Nothing of concern in the pathology report. 
 
First followup PSA and visit in Feb 09.      


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 12/21/2009 10:55 PM (GMT -6)   
Randy: You are way too soon looking for wood. Recomendation: Keep practicing and pussing for success. I am 14 months out and only started seeing improvement at 1 year in the last 2 months things have started getting better. Incontinence was never a problem for me. Time will have to tell on the ED.

Best wishes

Jeff T
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 12/21/2009 11:20 PM (GMT -6)   
If any of us knew how long, we would be clairvoyant. ED is filled with so many variables. How the surgery went, were the nerves damaged, what was your cindition priuor to surgery, what are your T-levels, etc.

I think some of it is also influenced by the pressure we put on ourselves to "get it on".

I would say just to relax little, be patient, and learn how to make love to yoiur wife without the wood, Make sure she is satisfied, and you may find it amazingly satisfying for you as well. It is different than pre-surgery, but it can be a good different.

Keep exercising Willie, a VED is a good device. You can have orgasm's without an erection to relieve some of your tension.

Wish we had magic answers, but we do have answers, just not the ones we all want to hear. At some point, you may decide to investigate injections if things don't move quickly enough for you.

Goodlife
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


Dilbert61
Regular Member


Date Joined Nov 2009
Total Posts : 21
   Posted 12/21/2009 11:30 PM (GMT -6)   
Greetings,
I'm almost 6 months out and it is very slight improvement at this point. Sometimes some enlargement at night, sometimes not but not because anything I've done. Tried caverject injections, they work but difficult to get to stop working and feels pretty artificial. I think we all just have to keep working on it, stay calm, and know that it takes a year or more to get progress. Stay with it---it is a long a haul.
Cheers.
Initial PSA 4.7 retest 4.9
Biopsy January 2009, two cores 3+3=6 Gleason
Diagnosed Febuary 2009, age 47
open Surgery June 2009, radical, open, nerve sparing retropublic prostectomy
No positive margins and a favorable Gleason's grade of 3+3=6
PSA August 2009 .3
PSA November 2009 undetectable


apacker1950
Regular Member


Date Joined Nov 2008
Total Posts : 122
   Posted 12/22/2009 12:28 AM (GMT -6)   
Golf, I just passed my 4 yr mark.... open rp with both nerves supposed to have been saved.  I have never regained natural erections, but with the used of trimix I have as active of a love life as I can handle.  I just turned 59, so I am somewhere in the middle of this group agewise.  I don't write this to discourage you, rather to let you know that even without natural wood you can have an active love life.  I hope you have a complete ED recovery, but if not, don't dispair. Many of us enjoy better living (or should I say "loving")  through chemistry.  Best of luck to you and a Merry Christmas and Happy Holidays to everyone.
Allan
Dx PCa age 54. Jly 05- PSA 8.1 Sept 05- PSA 10.7
Sept 05- Biopsy  9 of 12 cancerous, Gleason 3+3=6, T2
Bone scan and cat scan showed hot spot on hip bone.
Oct 05- bone biopsy, ouch.  benign , no cancer in bones.
Nov 05- PSA 15.4 Nov 18, 05- Nerve sparing open RP at Huntsman Cancer Center, by Dr. Robert Stevenson. 100% continence at 3 months. ED- Tried the big 3 pills with no results. Feb 06-Started VED, worked, but painful with constriction rings. May 06 started Trimix injections.
ED appears to be perminant but doing great with Trimix.
PSA remains undetectable.


MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 12/22/2009 10:27 AM (GMT 0)   
Hi Randy,

At the early post op stages the Viagra is primarily used to promote blood flow to the penis. Manual exercise of the muscle helps keep it from developing atrophy.

Myself I can see that at 8 months there are far more (non-medicated) erections than at 6 months, I suspect at 1 yr things will be even better

I switched to the Trimix injections at the 5 month mark and stopped oral meds, the shots are light years better than the oral meds. Far cheaper, less side effects and once you get the process down it is a fool proof way to get Love making back into a relationship. Biggest benefit is the self esteem boost knowing that anytime we want I am ready to go. We are having a far better time know than at anytime in my life, picked up the Kama Sutra book, its amazing how many things one can try in a day or night when a penis is rock hard erect for 1 1/2 hour

You may be to soon for these but seriously consider them when you get to 3 or 4 months, talk to your Dr
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 12/22/2009 7:59 AM (GMT -6)   
Randy,
I have spent the last four months doing so much research on ED treatments for my website, that sometimes i think my brain is going to explode. what I have learned more than anything, is that while natural erections may be slow to return, there is no reason to not have manufactured ones! There are soooo many things on the market now. There are people all over the country that are making innovations on existing treatments, inventing new methods. You need to hire a new doctor if he is not responding to your sexual needs.

I have also learned that surgeons are generally the worst at dealing with the sexual aspect of urology. I've been working with the head of sexual medicine at a major hospital in NYC and have to tell you, that even most urologists don't even know stuff beyond oral meds, injections and implants.

Don't give up. My latest campaign is becoming the fact that post surgery patients should not have to wait for natural erections to return before a natural sex life can be resumed. If you want sex badly enough, fight for it. Don't be a victim of this disease or poor clinical treatment anymore!
Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
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
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 12/22/2009 1:30 PM (GMT -6)   
WOW Paul. What a post! I think you hit the nail on the head when you stated that most urologist don't know much about ED. The problem is how do men like us find the ED specialist?

Jeff T
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.


T40
Regular Member


Date Joined Oct 2009
Total Posts : 103
   Posted 12/22/2009 10:51 PM (GMT -6)   
Well, I just tried my first injection at home with some success. Used .1 trimix at the doctors office. Went up to .15 tonight at home and it gave a useable response. Not perfect but definitely usable. Next step will be to use .175 which should do the trick. PA told me it would probably be .20 but if I can do it with less I will. Since he told me I can substitute the injections for using Muse for my therapy I have a new come on line for my wife.... Wanna save $20?

I would like to reiterate that the injections so far have been basically painless.
Age 40
Pre-op PSA was 5.8 from wellness test on May 19, 09
Follow up test from uro was 4.6 with a 9.3% free psa
Gleason 3+3 in one core, 3+4 in second core of 12 samples taken
Uro recommended Robotic for someone of my age. My research confirms.
Surgery performed August 19th, 09.
One side nerves spared. Nerve graft on other side.
Six weeks incontinence almost over. ED a work in progress but seeing some response.
Post op October 2nd, 2009 All margins were negative. PSA results in a few days.


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 12/23/2009 8:20 AM (GMT -6)   
T40 - Yahoo! Injections are such a great answer for the vast majority of guys. There are some really cool new developments in the pump world that make them more effective, more comfortable and just plain better.


Jeff, - the fact is virtually all urologists are surgeons. Surgeons tend to be introverted, focussed and often uncomfortable with the emotional/interpersonal aspect of their patients. But that's OK, in my book. We want them to be good and focussed. It's almost too much to expect them to do it all. First, ask your surgeon for an ED specialist. most often, They will be relieved to get you into someone else's office for that stuff. Be aggressive and assertive. The vast majority of PCa guys are healthy enough for sex and should be having it.

Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
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
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!


Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 12/23/2009 9:35 AM (GMT -6)   
Hey Paul ...

Yes Uro's should be focussed on what they do best. And for the rest, well, that is why they have PAs! I have used my PA for all of my visits since post surgery. PA is a She also so I would say more empathetic too. So for all of you that have Uro's that are Dummkopfs when it comes to ED things ... try the PA route instead.
Age 58, 195lbs, 6'4", 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
Biopsy Nov2008 1 of 12 cores 5%, Gleason 3+3 - Sona showed size 140+ cc (110 grams post op).
02/03/09 open RRP surgery , Nerve sparing both sides, 1 day in hospital, Day 4 first BM,
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
02/18/09 Cath out, passed a 1cm oblong STONE within hours.
03/06/09 Started Levitra@20mg / Viagra@100mg / (04/01) Cialis@20mg -- no real effect (thru 11/2009).
04/01/09, 07/07/09, 10/01/09 PSA <0.1 - Stone Was Oxalate stone -- X-ray no stones.
08/09 - started MUSE@1000mcg ... pump&plump - success(80-90%) (alpro ache).
09/09 @500mcg +pump&plump + 2 advil - success(80-90%) - (less Alpro ache).
10/09 TrimixGel (500/300/100mcg): 1st:60%, 2nd:(pump&plump) 60%, 3rd(added 500mcg muse):70-80% -- (no Alpro aches!) but none @ useful hardness!


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 12/23/2009 10:16 AM (GMT -6)   
Greetings, Randy.  You may want to ask your doc about Cialis or Levitra.  Most doc's have samples and these 2 drugs work slightly different from each other and totally different from the way Viagara works.  Just a thought.  David

Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 12/23/2009 10:50 AM (GMT -6)   
Hi Randy,

CPA,s idea is superb, your Dr may have all 3 in sample packs

Vigra's absorbtion is VERY dependent on the food you ate prior to and after you take the drug, in most cases if you do not get that timing right, it is useless, most likely the full 100mg is needed for intercourse after PC treatment

Cialis, is the least food dependent and has the longest half life, but many including myself get back backaches when taking it 20mg is the dosage for someone who had PC treatment, the daily 5mg or even 10mg is not enough. 20mg should keep you "on demand" for 12 hours maybe even 18

Levitra works similarly to Viagra, not as food sensitive, lasts a bit longer than Viagra 5 vs 4 hours , 20mg is the full dosage
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 12/23/2009 10:56 AM (GMT -6)   
Randy
 
I would request a prescription for Levitra from your doctor. I tried all 3 ED drugs and Levitra is the only one that seemed to work for me. But I had to go the Injection Route first. Now at 19 months post-surgery, Levitra does make me hard. The injections work, too.
Age 60, PSA 2007 4.1, PSA 2008 10.0
Diagnosed April 2008, Biopsy: 6 of 12 cores positive, Gleason 4 + 5 = 9
CT and Bone Scan negative, Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared, Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th, pT2c, lymph nodes negative
PSA Sept 28, 2008 0.00, PSA Jan 22, 2009 0.00, PSA June 29, 2009 0.00
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.

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