14 months post RP- need help

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mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 5/6/2009 6:53 PM (GMT -7)   
For my own situation I recently had prostate mapping completed and am awaiting appointment for seeding. It took a lot of soul searching and research to finally reach a decision on treatment and I would like to extend a heartfelt thanks to all my friends on this forum who have provided advice and encouragement along the way.
 
I am now trying to help a friend. Here briefly is the situation. With a Gleason 7 RP done about 14 months ago-53 years old with a beautiful wife about ten years younger-- excellent health and sex life pre-surgery- surgery itself was uneventful-speedy recovery and no urinary issues. Surgeon said that nerves fully intact -- to date no erections and only advised 9 months post surgery to start on viagra- no response- tried Trimix a couple of times with little response. He now understands that even where nerves are spared the trauma from surgery can cause problems in some cases for two years or longer. 
 
I have done some research in the archives and there is lots to sort through- came across a 2007 video on ED post surgery by a doctor from John Hopkins which was excellent but not detailed enough on solutions. My impression is that my friend's surgeon is too busy saving lives to have the time to deal with ED issues. It appears from my readings that many men are started on ED meds right away to help the healing process.
 
We are trying to sort through the forum material and would really appreciate any advice. Both he and his wife are at wits end and realize that they should have been more pro-active before now. Can somebody help?
 
 
 
 
 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
 
  "There may come a day when the courage of men will fail, but it will not be this day."


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 5/6/2009 7:06 PM (GMT -7)   
I know that a lot of docs start on ED meds almost immediately and there is literature to support this. When I asked my Dr he said that he and the other surgeons he knows used to do this but that it didn't seem particularly effective.

To me, the lesson here is that your friend did not necessarily miss a window of opportunity. That said, this board makes it clear that ED can be a long struggle of trying many different approaches. A couple needs persistence, love, and hope.

As for me, just over 4 weeks from surgery, the journey is just starting but those who have gone before leave me with hope and determination.
Age at diagnosis 67, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3 + 4 = 7
CAT scan 1/09 negative, Bone scan 1/09 negative

Robotic surgery 03/03/09 Catheter Removed 03/08/09
Post surgical pathology report. Lymph nodes negative, Seminal vesicles negative
Surgical margins positive, Capsular penetration extensive Gleason 4 + 3 = 7


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25353
   Posted 5/6/2009 7:59 PM (GMT -7)   
mjluke,
you are right, many dr. will start their post surgery men on ed drugs as soon as the catheter is out. others, wait till their first post surgery psa meeting, to allow proper healing time. my dr. chose the 2nd time period, and by some miracle, when he was prepared to give me the little talk, i didnt need it at all, i was doing fine on my own. whether one nerve bundle is saved or both or even none, each person is different, and how these nerves are traumatized and damaged is just as different. this is why you have so many variations of recovery time even on this forum. some guys start fine, others are at 2 years or more. with your friend, i am a bit curious why his dr. never approached him about the subject this far out, but perhaps there are circumstances that we don't know about. you are right, persistence, love, and hope, are very important factors in the road back to sexual recovery after pc surgery. i wish both you and your friend a good recovery in that area, and more importantly, to be free of the PC that brought you here.

david in sc
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 5/6/2009 8:28 PM (GMT -7)   
Thanks fellas for your responses. You seem to be saying that the timing of Ed drug therapy post surgery is somewhat controversial-some prescribe right away and others wait .
I will find out more info on the lack of direction provided by the surgeon but I understand that for nine months there was none during the five minute consultaions every three months.

I guess the real issue now is where does he go from here. Are there any steps he can take to increase the likelihood of resuming sexual function in the near future. They are really desperate now.
 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
 
  "There may come a day when the courage of men will fail, but it will not be this day."


NV RTRD 2007
Regular Member


Date Joined Jan 2009
Total Posts : 75
   Posted 5/6/2009 8:31 PM (GMT -7)   
My Dr did not prescribed ED meds until my second post PSA with 20 mg but my PCP at the VA gave me the lowest dose (5 mg) I have taken it 5 times already (once a week) and haven't seen any life yet. It does stiffen a little but won't last long. But again different patients have diffrent results and outcome. Some never had to use prescription meds for their ED, (lucky ones) others still dealing with ED and some took over two years or more. I am patiently waiting for the time. Don't worry, it will come back.
Age 54; Age DX 53
PSA: May 07- 2.9; Dec 07-4.3; Jan 2008- 6.1; May 2008- 6.4; Sep 2008- 7.3 ; Sep 2008- 9.6
Bone Scan: Mar 2007- Normal without evidence of metastatic disease.
Biopsy Mar 2008: 6/6 core right gland- No evidence of malignancy; 5/6 core left gland- positive Gleason score 3+3=6 average tumor volume 5 mm.Clinical Stage II.
Transrectal ultrasound at UCSF Jun 2008: 7x14x10 mm hypoechoic lesion in left gland. DRE positive, PSA Density- 0.23 and Prostate volume - 27 CC.
RRP: 4 Dec 2008; Discharged - 8 Dec 2008; Cath removed- 18 Dec 08.
Pathology Report: Prostate- 33 grams; L/R pelvic lymph node -No evidence of malignancy; Right Lobe- No definite tumor; Adenocarcinoma, Gleason 3+4.
Post PSA: 7 Jan 2009 - <.05.
              10 Mar 2009 -<.05


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4044
   Posted 5/6/2009 8:41 PM (GMT -7)   
mjluke: My Dr. is a bit like yours. He seems reluctant to discuss the ED issues. On my 6 month appt. He was stacked up with patients and I felt he rushed me through like being in a squeeze shoot (cow talk) Drew blood, stuck his finger and I pressed for info he gave me a script for MUSE. and the said see you in 3 months. I was frustrated, this appointment was on a Friday. I called his office on Monday and asked to speak with him. The nurse returned the call, I told her I needed to speak with the Dr. I needed info from him. He returned the call at the end of the day and I told him that I felt completely neglected and I was in his office for info and felt he was too busy for me. He then was welling to talk. We discussed other options and I sometimes feel that they are just shooting in the dark and do not think that this ED thing is much. I think it is a BIG DEAL and He said give it time. My responce to that was. Easy for you to say.

Sorry for the rant. I am frustrated for sure.
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
 ED- 5 mg Cialis daily, pump daily,


mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 5/7/2009 10:14 AM (GMT -7)   
So it seems that the doubt and uncertainty one experiences at the treatment decision stage continues later when the side-effects set in. You may have ED for a week, a month, two years or forever regardless of nerve sparing or the skill of the surgeon- no one can predict and there doesn't seem to be much concern by physicians about your quality of life post- surgery. You are left to try and sort it out yourself - an impossible task if it were not for places like this forum and the caring folks that take the time to help.
 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
 
  "There may come a day when the courage of men will fail, but it will not be this day."


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 5/7/2009 10:52 AM (GMT -7)   
mjluke...there are therapist that specialize in the ED recovery that you might want to suggest to your friend. Not all urologists or surgeons are trained or equipped to deal with this sensitive issue properly. As you have already seen on this forum...some folks respond very well to the drugs or injections and some that don't. I would advise your friend to not give up hope, but rather seek out new sources of medical or therapy assistance. He maybe one of those men that it takes awhile, but regardless of the physical part...there is also the physcological and emotional part as well, not only for him but for his wife.

A good counsellor or therapist can not only help with the physical but the emotional well being during the recovery part.

Just another option.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month April 2009 .06


KeyWestPirate
Regular Member


Date Joined May 2009
Total Posts : 60
   Posted 5/7/2009 11:55 AM (GMT -7)   

MJLuke

I had two months of testosterone after my first clear PSA in January 2009 (surgery November 2008).  I was a special case since I had a Lupron injection (long story) and needed the T to overcome the effects of the Lupron.

The testosterone really made a big difference in my INTEREST in sex, and that interest drove my renewed confidence.  I was disappointed and anxious about something I had always taken for granted.  This might have created some psychological barriers.  After the testosterone I found myself smiling at the young mothers in the supermarket.  I'm sure they were thinking  "Old Pervert!" but they all smiled back.   Over-confidence is better than no confidence!

Testosterone replacement is getting to be a big deal.  It's starting to be advertised on television.  You won't hear urologists talk about it being needed because of its connection to PC, but a lot of other doctors are beginning to relalize the need for it.  Not only are we living longer, but we expect to be sexually active longer.  Insufficient testosterone drives many health and mental issues.  Google   low testosterone  to see what I am talking about.

I highly recommend Dr Eugene Shippen's book  The Testosterone Syndrome  available on Amazon for $16.  Chapter 10 about the role of testosterone in women is a real eye opener.  I don't take testosterone replacement any more,  but my wife does!

Shippen also contributes to the books by Suzanne Somers.   Ageless is a good read.
 
T replacement has almost zero side effects.  I didn't see any.  You may need to go beyond your urologist.  That's what I did.  It's a tightly controlled drug because of its abuse in the sports world, but readily available with a prescription from your doctor.  It's certainly worth a shot for your friend.
 
MJluke:
Do you mind disclosing your prostate size?  It's none of my business, of course,  ...(but I want to run your numbers)

RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 5/7/2009 12:03 PM (GMT -7)   
I agree that ED is a significant consideration, and especially for the younger the person. ED is the one disappointment of yours truly, but I am a little older and have accepted it as a manner of life.

That is not to say there is no hope. Although things may not be exactly the same, there are supplimental things to aid. I would suggest a lot of experimentation with the various drugs: Viagra, Levitra, & Cialis. They should also try Trimix, and Bimix at various strengths along with the drugs, and even in combination with a VED. These things are inconvenient, but can be and are effective. Along the way of using these things the area is being exercised and there remains hope of recovery. I agree that a doctor conducive to these things is necessary, but don't expect any doctor to have the answer. I think the necessity of the doctor is more an issue of having one who is willing to listen to you, and write prescriptions according to what you want to try and do. Blessings.

RB
Age 62
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) 5/19/2008
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved

PSA <.04 7/12/2008

PSA <.01 10/30/2008

PSA <.01 4/03/2009

 


mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 5/7/2009 12:56 PM (GMT -7)   
KeyWestPirate: Testosterone may not be the answer for my friend as the desire is there -just can't achieve the erection- also doesn't testosterone actually feed cancer cells.
My prostate size is 30cc. by the way and I don't mind disclosing.

RB
Ithink experimentation as mentioned in your post is the next step for my friend. Whatever the outcome , it's better than just sitting and waiting for it to happen.

I think the sex therapist is a great suggestion also. Thanks to all.
 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
 
  "There may come a day when the courage of men will fail, but it will not be this day."


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 5/7/2009 3:21 PM (GMT -7)   

Greetings, MJLuke.  Sorry you have to be here and also that your friend is having difficulties.  I am just a couple of years older and also have a beautiful wife (although she is not younger) turn !  I suppose I am fortunate in that my doc is a very personable, caring person and takes lots of time with me every appointment and makes sure he asks all the right questions including whether or not I am getting good erections.  He wanted me to take the drugs right away.  I too would suggest that your friend try all 3 in various doses.  My doc is always willing to give me samples although I order mine from ADC.

I would also say that there are lots of ways to be intimate.  Maybe your friend needs to try some of those variations and who knows before too long something might happen.  Best wishes.  David


Age 55
Diagnosed Dec 2007 during annual routine physical
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 positive with 2 marginal
Gleason 3 + 3 = 6
RRP 4 Feb 08
Both nerves spared
Good pathology - no margins - all encapsulated - Gleason 4 + 3 = 7
Catheter out Feb 13 - wore pad for couple of days - pad free Feb 16
Great wife and family who take very good care of me


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 5/7/2009 4:06 PM (GMT -7)   
  Almost 3 years post RRP for me and no major ED issues but I wonder if it might be time to start looking at the IPP (Inflateable Penile Implant)?  There are a few guys here that have had that inplant done and seem to be happy with it.  Not trying to sell anyone on the idea just putting out a suggestion.
  Hope thing get better.  Hang in there.
  KW
    43 at Dx and Surgery (RRP)
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    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.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
    Oct. 6th, 2008 - AUS Activation by Dr. Morey.  Working Great, only light drips and dribbles.
    Jan, 31st, 2009 - PSA 0.00  Next test in July, 2009  
 
 
 
 
 
 
 
 
   
 
   
     

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