need feedback please

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Hopeso
Regular Member


Date Joined Jun 2004
Total Posts : 231
   Posted 7/18/2009 10:30 PM (GMT -6)   
Hi, I am the wife of a nice guy who had prostate removal by DaVinci method almost 2 years ago now.  The doc said both nerves were spared, but after all this time he cannot get an erection no matter what.  So we go back to the doc at the end of July and I want to ask him if he is sure he spared that nerve, and if he says yes, then is it ok to ask him why it won't work?  I don't want to make him mad, but I just don't get it.  We try and try and have used all the ED drugs, and so forth, and the pump, but nothing works.  The pump works a little, but not firm enough to do anything really.  He will tell us again that we can use the shots, but I don't know why we need to do that if he spared the nerve.  Plus my husband really dosen't want to use the shots.  He already has a curvature of the penis.  All the guys we know that had the old school open surgery, have no problems with potency, but now they don't even offer it.  I personnally only know my husband and his freind,who had DaVinci and both did it a couple years ago, and neither of them can have sex now.  Both were told the nerve was spared.  Any thoughts on how to approach the subject with the doctor?  If it is spared why won't it work?
Hopeso
Les and DB from KC(Les is a member of UC and Ostomy forum also)
DB diagnosed 11-01-07
psa high for several years from 4 to 10, but last one before surgery was 8.6
Gleason 3+3
T1c
Da Vinci on 12-14-07


Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 7/19/2009 1:09 AM (GMT -6)   
Just ask the questions if he is a good doctor he will spend time to answer them if not find another doctor that will your husbands well being is more much important than the doctors feelings
 
 
Age 64 From UK now in Thailand Baby boy born 2/14/2009
 First PSA was showing 9.73 on 1/21/09.   on 5/7/09 PSA 9.78  Free PSA 0.83   Free:Total  PSA 0.08 
1/28/09 Biopsy carried out 12 core results show no adenocarcinoma
5/15/0924 Core biopsy results Gleason'S Grade 3+2=5
Involving approx 30% of one out of 12 cores on each side no perineural or angiolymphatic invation identified
One side PIN High Grade Bone scan clear 
Open surgery planned for 7/27/09
 


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4824
   Posted 7/19/2009 3:31 AM (GMT -6)   
Try the "shots." If they work you'lll probably reach a point where you'll tell yourself - "Who cares how we get there."

Age 54   - 5'11"   205lbs
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
Surgeon - Keith A. Waguespack, M.D.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/19/2009 11:41 AM (GMT -6)   
Hopeso, I had open surgery 22 months ago with nerve sparing.  As of this date, even with aggressive ED recovery attempts of pills, pumps and pricks-err,   injections- I have no response as of yet.  I go next week for my routine checkup and I am gonna ask to see and even maybe get a copy of the surgical notes on my procedure.  Now my prostate was huge (110gms) and the doc has speculated that the gland was so large that it stretched the nerves and they could have sustained damage when the gland was being removed.  Don't know whether I buy that, since I have had zero results so far.  I suppose I am saying that I - and your husband- may fall into the unfortunate category of 2 plus years and beyond for recovery.  In the meantime, I would encourage your husband considering starting injections, if not for sex , then as a part of nerve stimulation and possible regrowth.  There's some studies that say injections do help in those areas.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
21 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4088
   Posted 7/19/2009 2:30 PM (GMT -6)   
Hopeso: My Dr. had a converstaion with me when I questioned the nerve being spared. He said that with the nerve spared that is a 50 50 chance of ed being resolved. I am 10 months out open radical and in 2 wks we are going to try the shot. My hope is that this may start the motor for future events...
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,


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 7/19/2009 3:26 PM (GMT -6)   
I think you need to find a new doctor - one who is willing to aggressively help you find a solution. You might also consider trimix gel as an intermediary step before injections. www.trimixgel.com.
It is a bit expensive, but the one guy I know who used it liked it.
Paul
46 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6 (Biopsy 3/07 just suspicious)
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
-totally contained to prostate,
-10% involvement in L & R Mid lobes
PSA 0 at nine months.
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - Took 100mg viagra every night. for several months
Totally usable erections at 10 weeks, which disappeared over the course of a month or two.
ED bounce is what they call it. Now, at one year, ED is fine with viagra.
One year PSA - undectable!


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 7/19/2009 3:40 PM (GMT -6)   
One of the first 2 things I becasme aware of when decided to have surgery is the potential for permamnent incontinence and ED. It is a statistical fact.

Some of us blame our doctor, which by the time it is discovered is too late, which actually it is too late after they snip out the prostate. We hear men brag how thry had this or they had that, the fact is there is not much proof that this or that did or do not effect ED. I have seen a study about the experience level of a surgeon and ED, but again , so what it is too late.

I have become fatalistic to some degree. It is what it is. Asessing blame may help us feel a little better, but Willy still sleeps.

I know the idea of sticking needles in our dearly beloved bodu part is disdainful, but after fingers up the you know, tubes down THE tube,
layomg on a surgery table with Lord knows how many people watching, etc. etc, how much more disdainful can it be?

I love my wife enough, and I enjoy sex enough, that if that what it takes, thats what it takes.

I have an appointment next week to see where to stick it. I'm ready to do whatever it takes to breathe a little life into poor Willy !
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 7/19/2009 4:46 PM (GMT -6)   
Nerve sparing simply means that the nerves were not removed. Any surgery, open or robotic, will do damage to the nerves. The amount of damage depends on both the skill of the surgeon and the physiology of the patient. Don’t think of the nerves as separate electrical wires – in surgery the nerves need to be pealed from the surface of the prostate.

When I was first diagnosed and started to learn about the effects of prostate surgery I read about injections and implants and I was horrified. After reading the experiences of members of this board (you can use the search function) I have become more accepting of what the future might hold for my wife and me. You will find that both treatments lead to very satisfying sex lives for many (and to failure for others) I am still in the healing process and I hope these will not be needed, but I know that my wife and I will continue to find ways to have pleasure from sex.

I urge you to put the past behind you and to look to the future. The people on this board are here to advise, encourage and support you
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0


mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 370
   Posted 7/19/2009 10:36 PM (GMT -6)   
Honey, (and please don't take that the wrong way, the fact that you posted means that you care alot about your husband), just because your husband/boyfriend had  a bilateral nerve sparing surgery DOES NOT MEAN YOU WILL EVER HAVE NORMAL SEX AGAIN!  I knew this before I had my surgery by reading all the blogs of the guys who had devinci surgery with nerve sparing and still didn't get normal erections. The bilateral nerve sparing surgery is overhyped for effectiveness, whether open or robotic. As somebody already told you above they have to peel the nerves off the prostate before removing it which does damage to the nerves. How much depends on the surgeon and the patient's anatomy. If viagra, cialis and levitra don't work trimix/bimix is your ONLY answer.Opps I forgot the VED, but that never worked for me.  The injections are not that painful, I look forward every week to my trimix injection. I would inject 2x/wk but my penis has kind of bent a little from the injections and I don't want it to bend a whole lot more. I'm treating that now too with vitamins and traction device. With trimix/bimix you get a nice, dependable erection without a whole lot of effort. True the kisses in the dark, the foreplay before spontaneous sex are gone, but if you want intimacy with your husband again, this is all there is, and it sure beats the alternative of no sex..
my age=52 when all this happened,
DRE=negative
PSA went from 1.9 to 2.85 in one year, urologist ordered biopsy,
First biopsy on 03/08, "suspicious for cancer but not diagnostic"
Second biopsy on 08/14/08, 2/12 cores positive on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 6 both cores,
Clinical Stage T1C
Bilateral nerve sparing Robotic Surgery on 09/11/08, pathological stage T2A at surgery
No signs of spread, organ contained,
3 0's in a row now, 10 months out
Incontinence gone in early December '08,
ED remains,  still taking daily viagra for penile rehab, uro said try oral meds and then trimix for sex only now, Peyronie's Disease a problem now


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 7/20/2009 7:50 AM (GMT -6)   
Hopeso said...
 Any thoughts on how to approach the subject with the doctor? 
The Urologists / Surgeons have heard all the questions before, so don't be hesitant or too shy to raise any questions you have.  I write-out on an index card all of my questions before arriving in the doctor's office, so I don't forget to ask something I think is important . . . but get sidelined asking because the discussion(s) go in another direction.

Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1/2 light pads per day)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0

 


Hopeso
Regular Member


Date Joined Jun 2004
Total Posts : 231
   Posted 7/20/2009 8:49 PM (GMT -6)   
Thanks everyone for the good advice. I didn't really know about the peeling off of the nerve, but I do think some damage must have been done at that time. We will just live with that and maybe do the shots if that is what is next.
Hopeso
Les and DB from KC(Les is a member of UC and Ostomy forum also)
DB diagnosed 11-01-07
psa high for several years from 4 to 10, but last one before surgery was 8.6
Gleason 3+3
T1c
Da Vinci on 12-14-07

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, April 23, 2018 1:45 PM (GMT -6)
There are a total of 2,954,693 posts in 324,141 threads.
View Active Threads


Who's Online
This forum has 162181 registered members. Please welcome our newest member, smuel301.
414 Guest(s), 15 Registered Member(s) are currently online.  Details
FATPRO, California Dreamer, countess18, Serenity Now, smuel301, 1000Daisies, Girlie, Dharmacolm, WalkingbyFaith, RogueMk, kit49, debee, lymelearner, Tall Allen, straydog