LFPF ( Leak Free - Pad Free )

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Modelshipwright
Regular Member


Date Joined May 2009
Total Posts : 215
   Posted 11/17/2009 8:30 AM (GMT -6)   
An interesting article on LFPF is at the Prostate Cancer Infolink. Any thoughts?


Read article here....



Regards,

Bill

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 11/17/2009 9:00 AM (GMT -6)   
That is depressing information. The data is only for Robotic. (LFPF means leak free pad free.)
"Based on the authors’ strict definition of LFPF continence, they observed the following:
* Prior to surgery, 734/1,005 (73 percent) of these patients were LFPF.
* The proportion of patients who met LFPF criteria decreased to 4, 9, 17, 24, and 28 percent at 1, 3, 6, 12, and 24 months after surgery, respectively."

Can it really mean that 91% of the RP guys here are walking around with pee pads on at 3 months?
What about all those lucky b*stards that were dry the first week, and were holding flag poles the next? Lucky indeed. (You know who you are!)

I wonder how these rates compare with open surgery? Maybe we should do a poll.
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
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. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
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 month: Still 3 pads per day. 420ml/day, 91 um leak. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


CharlieTuneA
Regular Member


Date Joined Aug 2009
Total Posts : 37
   Posted 11/17/2009 9:01 AM (GMT -6)   
Thanks for this link, Bill. If not totally encouraging, at least it provides us leakers with good empirical data and a reasonable expectation of what's down the road, and allows us to make plans for dealing with the future. Wish my uro/surgeon hadn't been so nonchalant about this issue.

-Charlie
Age at diagnosis 59, PSA 1.4
Biopsy 12/08 12 cores, 6 positive
Gleason 3+3=6
CAT scan negative.

DaVinci surgery 6/16/09
After 10 days, cystogram revealed fistula
Catheter Removed 7/17/09
Fistula still evident week of 8/24
PSA 0.03
Catheter Reinserted 8/28/09
2nd catheter removed 9/28/09
 
Still minor evidence of fistula 10/21/09
Doctor recommends close monitoring, continuation of low residue diet, possible temporary colostomy if resurfaces.

Continence is a future goal. Progress slow.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/17/2009 9:26 AM (GMT -6)   
Jeff, my own non-scientific hunch is that incontinence would prove to be more of an issue with robotic ops than with open. Never seen any hard evidence, but the poll going on here might help put some numbers together.
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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 11/17/2009 9:34 AM (GMT -6)   
I know as much anyone the great desire to be LFPF.

BUT, I went into this thing knowing it may take a year to get to normal. I even understood I may never be as good as I was before the "dance with Davinci"

I have found in my own life a kind of peaceful place, that says, it is what it is, I'm cancer free, and when the leaking stops, I'll be glad, but if it never gets any better, it's still better than dying of bone cancer or some other offshoot of bone cancer.

It has allowed me to relax a little and just take it as it comes. Do my kegels (sometimes), and do whatever else I'm supposed to do or not do (sometimes), and just take it a day at a time. For my first month, I used a clamp, which may have set me back on my pee pad count, but definitely made my life more tolerable.

After reading hundreds of posts, I have come to the conclusion that there is no secret formula, no special surgical technique, or some other way that allows sonme guys to be pad free quickly, and others not.

I liked the guy who said he clenched his but cheeks so tight, a tractor couldn't pull a needle out of his ass. I just can't clench mine that tight, and after a while, the needle will fall out.

All I can say is patience appears to be our only hope in this deal.

Good luck my wet brothers !
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


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 11/17/2009 10:02 AM (GMT -6)   
Hey Goodlife,
You know me. I just have to keep trying to "fix what's broke". I'm hoping for a magic can of Bladder Stop Leak that contains 92 micron balls to plug my leak - But not plug it so much as to send me to the hospital. The can might include some ED therapy in the mixture as well - I told you I was looking for magic.

In case a pharmaceutical marketing guys are out there, I'd pay $10 for a can and would use it on special occasions a couple of times a week. Is that enough market research for you?

Jeff
On the positive side, at least I am mowing the grass rather than being under it.

I started two surveys:
3 months and one year. Answer what you can.

cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 11/17/2009 10:31 AM (GMT -6)   
Edit. This post was a result of sloppy reading of mine. At the end of the study, at 24 mos., they state that 28% of patients were LFPF, 40% had an occasional leak, and 22% needed a light pad. Much more encouraging. Steve


Another thought on this subject. When they say Leak Free Pad Free they make no mention of HOW MANY PADS. If I get out there six months, nine or twelve months, and just need one light pad, then maybe by their definition I'm still incontinent, but I'll be a happy camper.

Carlos
Regular Member


Date Joined Nov 2009
Total Posts : 486
   Posted 11/17/2009 11:24 AM (GMT -6)   
At the other extreme, my surgeon and his partner have made presentations claiming 100% continence at 6 months for men 60 and under. They use a bladder neck sparing procedure and pelvic floor reconstruction to aid with a quicker recovery. I was lucky and was pad free at 6 weeks. My neighbor was not so lucky. He is still incontinent, 2 pads/day, 10 yrs. after open RP. PCa is just too unpredictable.

Carlos
Diagnosed 2/2008 at age 71, PSA 9.1, Gleason 8 (5+3)and stage T1c.  CT and bone scan neg.
Robotic surgery 5/2008.  All margins, SV and lymph nodes were neg. 
Staged pT2c, Gleason sum 8 (5+3). 
PSA <0.1 at 18 months, Nov. 2009


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 11/17/2009 5:19 PM (GMT -6)   
This post has certainly excited a few guys. The surveys are getting answered slowly but there is useful info. The voting is still out, with many state not reporting ;-) but it looks like we have 2x as many robotics than opens and the results are very interesting. We need more data so go ahead and answer if you haven't already.

Disclaimers: The survey is unscientific; your mileage may vary; past performance does not guarantee future performance.
Jeff

Modelshipwright
Regular Member


Date Joined May 2009
Total Posts : 215
   Posted 11/17/2009 5:57 PM (GMT -6)   
As mentioned they did not specify how many pads per day. I am now down to one pad per day and my Da Vinci Surgeon and the Phtysio guy for the pelvic floor exercises consider that to be continent. I differ on that.

Regards,
Bill

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 11/17/2009 6:23 PM (GMT -6)   

Maybe we need to talk about comparative continence.

When the PA pulled my cath, and gave me a container to hold under Willie, I kind of forgot what I was supposed to do.  As I was standing there talking, I wasn't aware that I was peeing all over the floor.  I couldn't stop it.

Today, I can go out for an evening, or on a light day such as Sunday, I can skip my pad.  I would say comparatively, I am continent, but when I lift something heavy, bend awkwardly, or sneeze, I squirt a little, just like my wife does as a result of having 5 kids.

So, I would say that comoaratively speaking, I am continent, but my wife still has to wash a lot of underwear.  I kind of feel naked without my pad.

Now if I had Jeff's shocker pad, that lit me up when I leaked, I would probably be totally continent.


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


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 11/17/2009 6:26 PM (GMT -6)   
I'm with you. I would not call 1 pad per day "continent". Nor does the study you posted above.
Ask your Uro and the PT guy if they would consider themselves continent at 1 ppd.

We are up to about 20 people on the poll. I hope more guys answer.
So far, "open" has quite a lead over "Robotic". This lines up with what I noticed when reading signatures on this site. Yes it is unscientific, and we are not comparing pathologies, but still...

Jeff

Post Edited (Worried Guy) : 11/17/2009 4:36:49 PM (GMT-7)


pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 11/17/2009 8:17 PM (GMT -6)   
For the first three months after my surgery I was using 10 to 12 pads per day. At that time I said I would be satisfied and thankful if I could get down to 1 pad per day.

Well at this time I am using only 1 pad per day and find myself wishing I was dry. I'm stepping back a little and remembering what it was like several months ago. With that thought I really am satisfied with my quality of life. Heck, 1 pad per day is nothing! I have no pain and no restrictions on what I can do, no prescription drugs.

Maybe by definition I am not continent but I'm continent enough.

Bob
Age 70, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin
Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative
Four PSA tests undetectable, latest Oct 30

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