ED Is my Doc on the right track?

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LenB
Regular Member


Date Joined Jul 2009
Total Posts : 102
   Posted 6/10/2010 8:24 AM (GMT -6)   
Hi guys:
 
My last visit to the uro he put me on Celas 10mg 2X per week to start things going.  My Davinci surgery was in September 09.  I am still leaking 1-2 pads in a 24 hr period.
After seeing the Dr. John Mulhall lecture, I am worried that it might be too later for me to ever get an erection.  I haven't had an erection since surgery.  Did the Doc wait too long? In the beginning he told me his plan and he is moving accordingly.  I would like to hear other experiences. I realize everyone is different but I am concerned.
 
Thanks,
 
Len mad

Age: 65
DX: 7/10/09
Gleason: 7
Biopsey: 2 chips with some cancer cells out of 30.
Robotic Surgery: 9/10/09
Cath out: 9/23/09
1st post op PSA: 10/20/09 <0.1
2nd post op PSA:  1/25/10 <0.1
3rd post op PSA  4/19/10 <0.1
As of 4/26/10 Still Wet 3 pads per 24 hr. period


bsjoplin
Regular Member


Date Joined Feb 2010
Total Posts : 308
   Posted 6/10/2010 9:17 AM (GMT -6)   
good morning Len!
i don't want to seem overly pessimistic, but the reality of the situation is: it could (and often does!) take a couple of years to get that function back!  of course, some never do get it back, due to damage (from the surgery and from the PCa), but from what i'm hearing, most guys get back with the program after MANY months.
my situation, for instance: my open RP was in January of 09, which puts me, what, 16 months out ?  i am often getting nocturnal erections, and just within the last few weeks, with some excitation, it will sorta stand up on its own, not enough to operate like before, but an erection-on-demand is, for me,  BIG PROGRESS, as you can probably imagine.
it seems like every month, it's closer to what i'm expecting/remembering, and my story seems to match with others i read, so i'm just hanging (so to speak) in there! of course i give it other exercise, which i assume helps the cause also...
doc has me on the daily cialis 2.5, and i occasionally pull out the pump and help open up the blood passages, but from what i'm hearing it just takes TIME for those nerves to repair.
about 5 years ago, i had Bell's Palsy, (where half your face goes limp), and maybe that helped show me that nerves back at their own special rate, and you just can't rush it!
 
just for your info, i'm coming up on 57 years now
anyway, i wish you all the best, but all i can say is you can't speed up Mother Nature (or is this more  like Father nature ??)
have a good one,
bob
 

Age@dx: 55

5/05             PSA test 1.8  --12/19/07  PSA test 3.7  --7/25/08    PSA test: 4.7

8/26/08        1st Prostate Biopsy: 3 samples out of 6 have irregular cells

11/25/08      PSA test: 6.5

12/11/08      2nd Prostate Biopsy :  of 12 samples, 3 are cancer, and all other 9 are irregular.  original NJ lab sent samples to Johns Hopkins for special reading.  Gleason 3+3=6.  now:read book, and think about options: radiation, surgery, etc

1/22/09        Radical Retropubic Prostatectomy.  main issue was use of BOTH pre-donated units of blood during surgery, and then required 2 additional units in recovery, before going to room

1/25/09        Released from hospital. No drive, no lift >5 lb

1/28/09        Pathology results from removed tissue:  Cancer was seen on 10% of gland, lymph nodes & SV were benign, nothing seen outside of the prostate.  One area of cancer extended right up to edge, but not beyond.  Gleason was re-typed as 3+4=7, staged T2c

2/13/09        PSA=0.1

3/6/09          6week appt, start back to work Monday, 3/9.  script for Cialis

6/8/09          PSA=0.1

10/9/09        PSA=0.1

2/10/10        PSA=0.3 discussed possibility of radiotherapy and/or hormone.

4/7/10          PSA= 0.4  Recurrence of the cancer is probable. Referred me to RO

5/4/10                   First RT.  RO is recommending 37 treatments x 1.8Gy=66.6 Gy


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 6/10/2010 9:33 AM (GMT -6)   
"My Davinci surgery was in September 09"
What date was the last visit?
Have you been using a pump?
 
The pump and the pills after surgery are to help keep mr pee wee alive and healthy and if you get erections->GREAT
 
My surgeon said that at the two year mark - I have what I have and it ain't much unless I use my Trimix and then all is well.
Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 6/10/2010 11:40 AM (GMT -6)   
Len

You didn't say whether or not, any nerves were spared which makes a big difference. I'm right at two years post open surgery and have nocturals many times a night now. But I'm on daily Levitra, also take L-Arginine 3 times a day. I also use the VED on a morning basis and use Trimix as needed.

My urologist said 36 months was the cut-off, so there is quite a difference in opinions regarding when you start considering an implant.
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
PSA Sept 2009 0.00, PSA Dec 21, 2009 0.02, PSA March 29, 2010 0.03
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.
Stopped the injections except for "Fun" weekends. Really don't need them anymore.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 6/10/2010 4:19 PM (GMT -6)   
Be sure and try tri-mix before you throw in the towel.

Bsjoplin, thanks for the encouragement. Sure would like to see those covers rise up some night!
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 injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


reputo
Regular Member


Date Joined Apr 2010
Total Posts : 26
   Posted 6/10/2010 4:24 PM (GMT -6)   
I too was shocked at the Mulhall video and have a call in to my Uro. (I was on hormone therapy before RPP so haven't seen Mr happy since Nov 09).

I may have heard it wrong, but I think Dr. Mulhall said it is best to start exercising early else it may take 2 years to reach maximum function. But he didn't say all is lost!

The surgeons seem to be more interested in saving our lives than saving our sex lives but both would be nice.
Age: 57
Biopsy: June 2009. Gleason Score: 3+3.
Zoladex 10.8 mg subq implant on Nov 2, 2009
da Vinci RRP March 2010 Virginia Mason Hosp.
Pathology: margins clear
6-week post-op PSA .06
April '10, Cialis 10 mg 2xweek, 1/4 of the time results in partial erection
Bladder neck dilation May 2, 2010


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 6/10/2010 4:26 PM (GMT -6)   
Len, My Uro did not push the issue of ED with me either. Every visit I had to ask and push. You are just ahead of me my surgery was Oct 09. I have and still do use the pills, I pump and have graduated to injections. My Dr is pushing for implant. (I did not want to hear that)

He said 2 years is the mark that he looks at. What it is at that point will be. I have noticed that very slowly things are getting better.

If you wish shoot me an e-mail. My e-mail is open.
 
I might add that you possibly could visit franktalk.org  This site deals with ED sepcificly.

Cajun Jeff


9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1 pre cancer core
10/08 Nerve-Sparing open radical
Surgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clear

3 month: PSA <0.1
6 month: PSA <0.1
10 month:PSA <0.1
1 year: PSA <0.1
16 month:PSA <0.1

ED - Started Cialis at 3 months, tried all 3, 6 months added pump, 9 months Tried MUSE (YUCK) Bad experience.
1 year mark Found new Urologist visit was at 14th month post surgery
Started Injections, Caverject! (Success)
17 month: ED making improvements : Oral Meds gets me 85%


Red Nighthawk
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 6/10/2010 7:07 PM (GMT -6)   
Hi Len,
I think we are in the same boat. My surgeon did not put me on anything for ED and preferred to wait for some natural healing to come around first. Now that some natural healing is starting to take place, he has me take a pill just for sex, not for rehab purposes. It is frustrating to read about all the guys on this board who are on various treatment protocols, while I'm sitting on the bench waiting for nature. So I decided to get a little proactive and have started taking generic V every other night. So far improvement has been slow but with the pill I am able to get a partial erection. Since I'm nine months post-op, I'm still optimistic. Surgeons want to save our lives, get rid of the cancer, and the QOL issues are plan B. I wish you luck and keep us posted.
Age: 62
Pre-op PSA: 4.1
Post-op pathology:
Gleason grade: 3+4=7, present in both lobes, at least 1.1 cm, and occupying less than 5% of prostate by volume. pT2c NX MX
No lymphatic/vascular invasion present.
Seminal vesicles and extraprostatic soft tissue free of tumor.
Inked margins are free of tumor.
High grade prostatic intraepithelial neoplasia is present
Robotic RP: Sept. 15th, 2009 1 day in hospital, cath out on 9th day
Post-op PSA: at 4 weeks ---> .04
at three month intervals -> .03; .02 (the trend is my friend!)
ED: Improvement is very slow but there are positive signs. Doc has NOT put me on ED drugs yet but I am starting to anyhow.
One pad/day for the first six weeks. Two pairs of underpants, just to play it safe, for a few months.
Surgery: Dr. Jim Hu. Brigham & Women's Hospital, Boston


reputo
Regular Member


Date Joined Apr 2010
Total Posts : 26
   Posted 6/11/2010 11:31 AM (GMT -6)   
I haven't always been getting a response from the drugs, so yesterday based on what I recently learned about 'sleeping nerves' I tried more vigorous stimulation. Giving up romance in favor of rehab at this point it is exercise not pleasure. It seemed to help so am hopeful about the future (and trying to be patient).
Age: 57
Biopsy: June 2009. Gleason Score: 3+3.
Zoladex 10.8 mg subq implant on Nov 2, 2009
da Vinci RRP March 2010 Virginia Mason Hosp.
Pathology: margins clear
6-week post-op PSA .06
April '10, Cialis 10 mg 2xweek, 1/4 of the time results in partial erection
Bladder neck dilation May 2, 2010


chitown
New Member


Date Joined Apr 2010
Total Posts : 14
   Posted 6/11/2010 2:36 PM (GMT -6)   
My advise - Be very aggressive with the docs and nurse on the ED issue and force the need that this is as important as getting rid of cancer.
Generally they will respond. If not ask for a urologist that does ED, especially for RP patient and engage them
Dont be bashful. This is your life and if the doc gets his golf and BMW money from surgery, he is not interested in your ED $.

Right now the protocol is 3-4 weeks after surgery get the the injection else the muscle atrophy will start in the penis.
The nerves recover in 1-2 years and if your muscle and collagen in penis is compromised in that time (and it will if you are using tabs only) then you are out of luck rest of your life.

profman
Regular Member


Date Joined Jan 2010
Total Posts : 55
   Posted 6/11/2010 2:41 PM (GMT -6)   
My surgery was six months ago, and on the day the catheter came out I was given a script for Viagra and told to take 50 mg every other day, and the doc's office also made an appt for me to see the pump salesman (that was fun). I viewed this as exercise, so every morning I would pump up, while taking the V at night. After six months I can get a usable erection with drugs about half the time - but it was very slow progress in the beginning - but still continues slowly. I am thankful the doc believes in the rehabilitation process (although most of the discussions occur with his nurse), as it seems to work for me.
Diagnosed 9/4/09, age 59
PSA 3.5, up from 1.8 year before
First biopsy showed 3/10 positive cores, Gleason 3+3, less than 10% involvement in all three cores, diagnosed as T2a; prostate size estimated at 32 gram
Thinking of Active Surveillance but
Second biopsy showed 5/10 positive cores, Gleason 3+3, left side (4 postitive cores) had 40% involvement
RRP on 12/15/09, home 12/16
Catheter out on 12/29/09 (failed cystogram earlier)
Path report was all good news, Gleason 3+3, no margin involvement, no perineural involvement, everything clean other than core of prostate, tumor on both sides, but more prevalent on left side, 5% involvement, 42 gram organ
Within two days down to one pad a day, pad free at six weeks
Back to work 1/4/10
First PSA 1/28/10 - nondetectable (<0.1), next scheduled June 2, 2010
ED present, although blood does flow after Viagra. working with pump now - still trying!


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 6/11/2010 6:10 PM (GMT -6)   
Len,
I had my nerve bundles removed during surgery. I started using the pump a month after surgery to keep it alive. Recently I started using Viagra (40mg) that gives me better than 50% erection. I use trimix injections for sex.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 5 months
2 months PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005

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