Incontinence Trial and Some News

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kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 6/26/2008 10:42 AM (GMT -6)   
Had my 6 week check up yesterday (at the 7 1/2 week mark) to participate in an incontinence trial. As a reward, they took some blood for a PSA check. Being a newbie I thought it would take a week to get the results back, but they "cooked it on the spot" as the doctor said. Took about 10 minutes. I have no detectable PSA. (!) But I keep being told that the 3 check mark is the most important.
 
I am working with some doctors affiliated with the George Washington University hospital in Washington, DC - so they do a lot of research and analysis. These guys generally challenge every stat that Dr. Walsh originally published in his book. They admit he is a pioneer in the prostate cancer field, and has made many significant contributions, but nobody has been able to duplicate his "overly optimistic" stats concerning incontinence and sexual function. A lot depends on how each function is defined. They told me Walsh's definition of continence is one or two pads a day. Their definition of continence is no leaking - ever. And Walsh's book talks about having a "satisfactory sex life" which can mean practially anything.
 
So they are measuring the weight of used pads against the same number of unused pads during the previous 24 hours. They are going to halt this trial at 95 patients and they are almost there. At 6 weeks the average guy is leaking 3/4 of a pound of urine. I am leaking a little over a pound. They say they are seeing the most significant improvement between 3 months and 6 months - but that improvement can happen for up to a year. They will not talk to anybody about any kind of surgical help for incontinence until well after the one year mark.
 
This team is led by Dr. Jason Engel - he of the NY Times article posted elsewhere on this board - who essentially said the real truth about sexual function is more grim than the Walsh book may indicate.
 
I also get the impression that there are a lot (?) of urology practices out there gathering their own data, and none of them want to share too much. Probably because if Dr. A has better functional stats than Dr. B, who are you going to go to? So this makes gathering national data about prostate surgery recovery difficult.
kcragman 
Age: 52
March 2006: PSA 2.5
Dec 2007:   PSA taken for insurance application. I did not see the results until late Jan '08 - after I was rejected. Their lab said PSA 4.5. PSA again in Feb '08: 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were cancerous and the 6th did not look good.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.
Post op: Gleason 9 (4+5). 15% of prostate involved. Negative margins. Lymph nodes and associated glands all appear to be cancer free.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 6/26/2008 1:05 PM (GMT -6)   
That's interesting information.  I always was skeptical of those high success rates for incontinence and potency, it didn't mesh with what we see here in actual mens actual results....
James C.
Co-Moderator- Prostate Cancer Forum

Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
10/15/07 ED- begin 50mg Viagra and Vacurect pump nightly, Fully continent
1/14/08 Caverject started/stopped, aching. 2/24/08 .5ml Bimix started-success
5/7/08 ED- Viagra, pump, no response- Trimix .075ml continues
Post Surgery PSA's:  3 mts-0, 6 mts.-0


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 6/26/2008 1:28 PM (GMT -6)   

Interesting info...but playing devil's advocate here a little bit...

GW is close geographically to Baltimore, where Johns Hopkins is located, and might have a little "prostate expert recognition" envy going on and

Guys who have no post-surgery issues.....continent quickly, ED resolved quickly, no follow-on treatment needed....are a LOT less likely to show up and stick around on sites such as this one, imho.


Danman Bob, Born 1951
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14; Biopsy result - 9 of 12 sticks showed cancer
Post-op pathology stated that cancer was confined to the prostate
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of late April 2008)
100 MG Viagra 3 times a week beginning December 2007
Osbon Erec-Aid Esteem manual pump for therapy beginning mid-February 2008
30 MG papaverine/1 MG phentolamine bimix injections beginning late April 2008
Five week post-op PSA 0.2, five month post-op PSA 0.1, next test August 2008


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 6/27/2008 7:11 AM (GMT -6)   
DanmanBob - Oh yes, there definitely seems to be some pushing and shoving going on between GW and Johns Hopkins. And the GW guys are very careful not to say anything specifically negative about any Johns Hopkins work. They just say they are questioning the Hopkins results and are using more exacting standards. And I believe that Walsh's stats were based on open surgery results, while the GW crew are all robotics guys. (I might be wrong on that point, but I think that is correct.)

Good point about the quick healers. In the trial I am in, they ask you to sign up before your surgery, and you are supposed to honor your commitment to come in with your pads. And some guys come in with zero pads (don't need them), and I'm sure some patients just vanish because they are good to go and don't want to come back.

kcragman
Age: 52
March 2006: PSA 2.5
Dec 2007:   PSA taken for insurance application. I did not see the results until late Jan '08 - after I was rejected. Their lab said PSA 4.5. PSA again in Feb '08: 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were cancerous and the 6th did not look good.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.
Post op: Gleason 9 (4+5). 15% of prostate involved. Negative margins. Lymph nodes and associated glands all appear to be cancer free.


BamaCoast
Regular Member


Date Joined Apr 2008
Total Posts : 39
   Posted 6/27/2008 9:07 PM (GMT -6)   
It appears to me that men who recover quickly from incontience and ed issues are rare. My urologist told me most of the time it takes three months and it was almost to the day with me. I generally think doctors give you the best case scenario's and that is not what happens most of the time. I think doctors need to straight and give you time frames that are realistic....
BamaCoast - Kenny & Renae
from the Gulf Coast of Alabama
Age 51
Di Vinci Robotic Surgery March 5th, 2008
by Dr. Scott Tully
PSA 3.5  Gleason 3+4= 7
Confined to Prostate
1st PSA 6-20-08 .0 negative
Dry approximately 6-15-08
 
 


jackcc
Regular Member


Date Joined May 2006
Total Posts : 80
   Posted 6/28/2008 10:53 AM (GMT -6)   
Those guys in DC are so right. Walsh's book is definitely over-rated. Some people think is like the Bible but its not. It has caused a lot of people great anguish.

Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 6/28/2008 11:48 AM (GMT -6)   
What is commonly known is that Walsh carefully picks his patients - only operates on those for whom he expects great results. So "overly optimistic" might = self-delusion or worse.
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 6/28/2008 1:31 PM (GMT -6)   
kcragman - congrats on the psa. that is good news. i am in good shape at 7 week mark as far as continence goes. i didn't wear a pad last night and haven't had one all day today. i will wear to work next for for "insurance". on the ed side i am not back to normal. the doctor started me on viagara at the 6 week mark. even if i didn't have ed issues, i'm just now getting back to normal. my stomach is still a little sore so i have been careful lifting and moving around. good luck on future psa's etc.
 
Age 48
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
decision - surgery (robotic)
surgery may 9, 2008 - houston, tx
pathology report -gleason 8
margins clear
4 week and 6 week PSA .04 (undetectible)
continence ok during day - 1 pad
night time different story
kegel's twice a day 20 reps


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 6/28/2008 4:58 PM (GMT -6)   
Rob2 - Congrats. As far as continence goes, you are beating the pants off of me (ha-ha). The trial doctor was trying to explain what is happening to me, and how my bladder rides inside when I am prone and standing, etc. The bottom line is, I'm just not there, darn it. And I just cannot see any improvement. Oh well..

I am doing one Cialis per weekend, strictly for medicial purposes. When you leak as much as me, and have to fight head rash as much as me, sex is not way up on the priority list.

However, I DID have one strange experience last week. If we ever get down into the real nasty details, I'll tell you about it.
kcragman
Age: 52
March 2006: PSA 2.5
Dec 2007:   PSA taken for insurance application. I did not see the results until late Jan '08 - after I was rejected. Their lab said PSA 4.5. PSA again in Feb '08: 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were cancerous and the 6th did not look good.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.
Post op: Gleason 9 (4+5). 15% of prostate involved. Negative margins. Lymph nodes and associated glands all appear to be cancer free.

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