Leakers! There is hope, don't give up too early.

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cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 1/25/2011 12:09 PM (GMT -6)   
Hi Guys,

I haven't been around HW much for the past year. Nevertheless, many of you here have never been out of my thoughts.

After my RRP in Tampa in Oct. of 2009 I am probably remembered here as one of the more obsessive and distraught leakers who posted during the latter parts of 2009 and early 2010. After the catheter came out I could not hold a drop and this continued for weeks. I researched my tail off, came up with a bunch of crack pot theories to explain my misery, tried to joke it off, and none of it did me any good. Little by little though I got down to 6 pads, then 4, then 2 over a period of around 9 mos. Then I was stuck there. two full pads a day. At one of my appointments, after being asked what he remembered about my surgery that could be causing this, the surgeon joked that he couldn't remember what he had for dinner last night. The Uro who referred me for surgery told me absolutely that I would not improve any more. This was in Sept. 2010 just about a year post op. I began researching slings and the AUS too, followed Tallman's journey, starting to "get my mind right" for another surgery.

Then in about mid-Nov. 2010, 13 mos. post op, I suddenly noticed that I was using only one pad/day and it was basically dry. In late Dec. I switched to a girly pad and several weeks ago it dawned on me that that pad was pretty much dry too at the end of the day. As I sit here writing I have no pad and whatever dampness I have is probably from a few drops after whizzing.

To be completely honest, the above only holds for light activity and I still need a pad for jogging, golf, normal contortions doing house repairs or gardening, and so on. I am not LFPF (leak free, pad free) But.....I went to the driving range last week, hit 30 or 40 balls, and afterwards needed to hit the head afterwards. In other words I didn't lose it all as I had done for month after month and now I'm thinking maybe I have a shot at LFPF one of these days.

During my above mentioned research it became pretty much clear to me that the thinking is that whatever level of leaking one has a year post op is the level that one is going to be stuck with. I remember very few (actually one) members here who reported improvement at 14 months. In my case anyway that is NOT true. There can be hope for major leaking improvement at least 14 or 15 mos. post surgery. So anybody out there leaking in HW Land who can stand it, and wants to wait for corrective surgery a little longer, I offer you hope! BTW, my ED recovery has more or less mirrored the leaking recovery.
While I am not ready to re-enter the world of the stud-muffin, things are certainly looking "up".

My best to all of you,

Steve

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 1/25/2011 12:19 PM (GMT -6)   
Really great news and a pleasure to read that. Your story gives the long term guys hope. Thanks for coming back and sharing with us. Good luck, also, and things looking straight up later... tongue
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RP, Path: pT2c, 110 gms., clear except:
Probable microscopic involvement-left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09, 01/11-.09
ED-total-Bimix 30cc

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/25/2011 12:26 PM (GMT -6)   
Steve,

So glad you checked in. Might have taken you awhile on the incontinence front, but sounds like you just about there. Happy to hear that.

Keep us posted and stay awhile this time.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Pocketman
Regular Member


Date Joined Aug 2010
Total Posts : 121
   Posted 1/25/2011 12:52 PM (GMT -6)   
Steve,

This is encouraging news. I'm relatively new to PCa, but see and hear a lot of stories about guys not seeing long term improvement. Good to read you're leakage in manageable. I can tell by the tone of your post that you are relieved (no pun intended ;o). What did you do over the 12-14 months to help your situation? Kegels or other form of exercise?

Another Steve
Age 61, Diagnosed July 2010
PSA 04/09 - 2.5; 05/10 - 3.7; 07/10 - 4.7
DRE and Ultrasound - Negative
Size at biopsy - 32 grams
T1C, 3+3=6, 1 core of 12 60% positive
da Vinci nerve sparing RP 10/29/10
Post op biopsy indicated bilateral Gleason 6 tumors
Continent 90% and hopeful
Minor ED - 85% naturally, 95% with Cialis
6 week PSA - "undetectable"

ChrisR
Veteran Member


Date Joined Apr 2008
Total Posts : 831
   Posted 1/25/2011 1:26 PM (GMT -6)   
It took me almost 2 years. But it finally happened. you are right dont give up.

MikeS24
Regular Member


Date Joined Oct 2010
Total Posts : 131
   Posted 1/25/2011 1:40 PM (GMT -6)   
Steve: You do give me hope. Sometimes I feel a bit embarrassed to be posting incontinence questions when so many who are regulars to this site have statistics that keep them wondering if Pca will return with a vengeance.

Personally, I am the kind of guy who sees my surgeon's stats on incontinence and ED recovery which say 95% recover and use NO PADS and about 80% achieve sexual function to the level they had before surgery and thinks, I am in that 5% group and the 20% group that won't recover. I begin to think that my "gift" was the organ confined, Gleason 6 pathology and that fate or karma says i have to pay a price for that gift and that price is incontinence on a long term basis.

Like Worried Guy, I am a pad weighing person. Sure, it gives me reassurance when the totals are declining but on the other hand it lets me know if I am not making progress. Right now at 6 months and 2 weeks after cath removal, I feel like I am a bit stalled in the steady slope downward. Massive decreases by 50% each month for second month onward post surgery.

Now from December 2010 to the present, my rate of decent is negligible. However, over the last 2 weeks, I finally went for 13 hours of pad use and hit single digit weights. My lowest was 8 ml of urine over 13 hours. But then it bounces up and down with more activity or more fluid and I am frustrated that this is as good as it will get. The 8 ml of fluid are just a freak of not drinking enough or the dry winter climate.

If someone could tell me I will be pad free just wait and be patient, I could ride this out a bit better. However, I know that cannot be done. I employ this site to seek the experiences of those who have gone ahead of me and report how things progressed.

While I leak less, I don't perceive much solidness to the feeling I get from my sphincter area. I always feel on the verge of leaking. I get a glimpse now and then when walking and for some reason I feel no leaks at all. It perversely teases me saying " Remember, this is how confident it felt to walk without thinking about leaking."

Again, thank you for the great news on your progress. Its my hope to remain in the Zero Club for PSA and to get to the zero club in pad weight as well.

Mike S.
Dx 56
Biopsy: Gleason 3+3=6, PSA 6.6 One core of 12 with 5% T1c
Surgery: July 2010
Pathology Gleason 6, Neg Margins, Neg Lymph, Neg Sem Vesicles
Recovering from incontinence and ED slowly

Highwayman
Regular Member


Date Joined Sep 2010
Total Posts : 148
   Posted 1/25/2011 2:27 PM (GMT -6)   
Thanks for the info and good news, keep us posted.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 1/25/2011 3:06 PM (GMT -6)   
Steve,
That is great news. I was hoping to reach zero "naturally" and kept weighing, plotting, predicting and waiting. At 9 months, the doc said "this is as far as you will get." But, my line kept trending downward so I waited. At one year he said "this is far as you will get." But the line still was trending downward so I waited.
At 14 months, the line started to flatten out. At 15 months, my forecast line indicated it would never cross zero so I made the appointment to discuss having something done.
I am sitting here at 18 months, 6 days post catheter removal after my sling and I am almost dry. Only about 15 ml/day due to after pee dribbles.
I feel almost human again. :-)
So, to any of you out there that are not as fortunate as Steve, there is still hope.
Jeff

MikeS24 - I am happy to see there are other "enthusiasts " in the world. Are you plotting your data with 2 and 3 day running averages, and linear and 2nd order polynomial forecasts too?
I'll show you mine if you show me yours. ;-)

cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 1/25/2011 3:06 PM (GMT -6)   
James and Purgatory-thank you for the kind words. You are two of those always in my thoughts.

Pocketman-Yeah, I kegeled like mad for the first 6 mos. or so and then came around to the conclusion that since I could easily cut off the stream in the middle of going then my sphincter was ok. I am at a loss to explain why the improvement at 14 mos. The bladder stretched out? Nerve repair that always takes a long time? You are FAR FAR ahead of where I was at 3 mos. and if I were you I'd be very confident of licking the leaking eventually.

Mike24-you are another guy who at 6 mos. is far ahead of where I was. If you plot time on the y axis and ml leaked on the x axis, you wil not see a steady straightline decline. Almost every leaker reports "two steps forward and one step back." Keep the faith!

CrisR and Highwayman-IF I get totally dry believe me I'll keep you posted!
Age-66
PSA-6.5
8/09-14 core biopsy
4/14 cores pos. GS-(3+4)7
10/13/09-robotic RRP Moffitt Cancer Center Tampa
Post-surg path-two nerves spared, capsule, margins, seminal vesicles neg.
GS-(3+4)7, tumor <5% in 83gm sample.
1/5/10-first PSA-<0.1
IC and ED.
1/15/11-PSA 0.0 undetectable

MikeS24
Regular Member


Date Joined Oct 2010
Total Posts : 131
   Posted 1/25/2011 4:43 PM (GMT -6)   
To All: I really love you guys. Were else can we discuss bodily waste with such voracity and enthusiasm!

Worried Guy: No I don't do any fancy math. I do a simple plot of volume on the y axis and dates on the x axis. Not being a mathematician or an engineer, that would just serve to make more work for me. I just simply record my 13 hour work day pad volume and keep a spreadsheet of my ups and downs. I do average the months by day 1-15 and 16 to 30 because looking at the individual numbers does not reveal any easy to see trends. I am following your posts and praying that you achieve the goal of your recent surgery.

cocrgolfer: Yep, my graph lools like and earthquake plot. I am thankful to be where I am in some ways right now. I am not changing pads mid day or worrying that I am about to overflow. Even pushing myself with home projects that involve squatting and bending, I leak more but it mostly turns out to be a weep that give me the "wet tip of the penis" feeling that I have grown so fond of.... I am keeping hope alive and your message has given me lots of encouragement.

ChrisR - Wow! 2 years and by past post we share the same location for our surgery

and 2 of the best surgeons in the mid-Atlantic region. Encouraged again by your statement. Thanks for your post here and your recebtcomments in the Prostate Infolink regarding the large study on Gleason 6 outcomes. You can see my entire journey in the Incontinence Forum on the Infolink where I post as part of my incontinence diary. I look back at the narrative and track subtle aspects of my progress.

Keeping my spirits up and my kegeling on full power....

Mike S.
Dx 56
Biopsy: Gleason 3+3=6, PSA 6.6 One core of 12 with 5% T1c
Surgery: July 2010
Pathology Gleason 6, Neg Margins, Neg Lymph, Neg Sem Vesicles
Recovering from incontinence and ED slowly

cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 1/25/2011 6:42 PM (GMT -6)   
Jeff-until this minute I didn't know you had opted for the sling. From your post it sounds like it was a great success. Hey man, congratulations! Dry! Dry! Dry at last! Is there a prevous post of yours going into more detail? (Shows you how far behind the HW curve I am.)

I hope I was sufficiently careful in my post to not give a wrong impression. I am not totally dry....I can smooze around, do errands, etc. and it's ok. Any strenous activity and all bets are off.

Steve
Age-66
PSA-6.5
8/09-14 core biopsy
4/14 cores pos. GS-(3+4)7
10/13/09-robotic RRP Moffitt Cancer Center Tampa
Post-surg path-two nerves spared, capsule, margins, seminal vesicles neg.
GS-(3+4)7, tumor <5% in 83gm sample.
1/5/10-first PSA-<0.1
IC and ED.
1/15/11-PSA 0.0 undetectable

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 1/25/2011 7:05 PM (GMT -6)   
Steve,

A while back I started the thread Worried Guy's Incontinence Journey - Sling.
It has the whole story in sordid detail. Plus I still have my data if anyone finds it useful. A couple of guys have used my excel spread sheet and plotter to keep track themselves. I am not the only nutcase engineer in the group.

http://www.healingwell.com/community/default.aspx?f=35&m=1971100

Jeff

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 1/25/2011 7:36 PM (GMT -6)   
Just now I am sitting on my newly installed AUS which was done two weeks ago and 13 months post RRP. My situation is like your was in some ways but worse, i guess, as my improvement stopped only 3 or 4 weeks after cath. removal. I could always and still can cut off the flow mid stream. I had an extensive round of PT that included all sort of kegels but that produced nothing. I also decided that my sphincter did work, but only if there was conscious effort and my sphincter must normally be just barely shut. I am glad ,I guess, that you didn't post earlier or I might have waited to have the AUS. Maybe one fine day, the AUS can be turned off and just might become a "backup" system?
Yor story is a great one and great that you have achieved dry-ness without more surgery. Congratulations!!
Ron
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent @ 12 months
ED, pre-op severe, post op total
10/10 Dr Boone, Methodist recomended AUS
AUS/ IPP performed 1/11/11 Methodist Houston
post op psa's 0.04,<0.1,<0.1,<0.01@12 mo.

pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 1/25/2011 8:45 PM (GMT -6)   
After my catheter was removed the only time I had control was when I was lying down or sitting. It was so bad that I would overwhelm the pad when I got out of my chair after a half hour of sitting. I was using around 10 to 12 super absorbent pads per day. I then resorted to a condom catheter that I used for about a year.

At that time I began to regain control and returned to using pads at a rate of about 2 or 3 a day. As time progressed I was able to completely eliminate the need for pads at around 15 months after surgery.

I did the Kegal exercises and maintained my fitness level which I believe helped me immensely. I drank a lot of water and tried to hold relieving myself as long as possible. My reasoning was it would help stretch my bladder and improve the muscle tone of my sphincter. No medical advice here, just my own crazy logic.

Currently, I need to wear a light pad if I do intense exercising or running. I don't need a pad for heavy lifting.

Bob
Age 71, 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
Seven PSA tests undetectable, latest Aug 2, 2010
Pad free beginning Mar. 18, 2010!

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 1/25/2011 9:12 PM (GMT -6)   
Pa69 Bob,

You were my inspiration for waiting 15 months. Up until that point I figured there was a chance. But when I went for a full month at 150 ml per day, I had to have an honest look in the mirror and study the cards I was dealt.
Kenny Rogers said "You gotta know when to hold 'em. Know when to fold 'em. Know when to walk away. Know when to run."
I folded at 18 months. Now I can walk to the bathroom instead of running. I'm smiling!

Jeff

cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 1/25/2011 9:34 PM (GMT -6)   
pa69-your reasoning doesn't sound at all crazy to me. After they remove the prostate, and the accompaning prostatic urethra, the bladder is stretched to join it to the remaining urethra. (Which is also stretched and causes that horrifying discovery in the beginning where Willy looks like a turtle hiding inside his shell.) Makes sense that it needs some amount of time to re-accomodate itself and who knows in which patient it gets stretched more or less than in others. Our journey's timeline seem to mirror each other to a great degree. That's great that you beat the stats and dried up!

Steve
Age-66
PSA-6.5
8/09-14 core biopsy
4/14 cores pos. GS-(3+4)7
10/13/09-robotic RRP Moffitt Cancer Center Tampa
Post-surg path-two nerves spared, capsule, margins, seminal vesicles neg.
GS-(3+4)7, tumor <5% in 83gm sample.
1/5/10-first PSA-<0.1
IC and ED.
1/15/11-PSA 0.0 undetectable
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