Scoped out. Comments and Questions

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Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 6/15/2010 7:05 PM (GMT -6)   
It has been almost 11 months and I am still leaking about 140-150 ml/ day, (5 oz /day, 2 pads /day depending upon your measurement system).
This morning, I went to a urologist with a specialty in incontinence and got scoped out. He went in with a scope that could also fill the bladder to near bursting. I watched on the screen as he looked all around, took pictures and pointed out: "Here is the passage to your left kidney." "Here is to your right kidney." "Here is a congenital diverticulum." "OK, let's take a good look at the sphincter."
There was no scar tissue visible. The remains of my poor sphincter is only about 1 cm long which he called "short". He had me "kegel' and watched it close correctly. Also he had me cough several times and watched it involuntarily close, also correctly.
I showed him my daily measurement chart and both he and I agreed that as long as I was still improving, albeit slowly, we will wait 6 additional months before considering doing anything. He installs AdVance slings and (no surprise) feels I would be a good candidate.

Comments:
1) Now I know what you guys mean when you mention farts from your penis. Amazing! the sounds were so ridiculous I started laughing while peeing in the restroom at Starbucks.
2) I was totally continent today until about 6 hours after the scoping - probably due to swelling. Even though it was only temporary, it sure was nice.

Question:
1) How long is the sphincter supposed to be? Supposedly, mine is 1 cm and was shortened during the surgery. If you recall, I needed to have a a lot of material removed, unfortunately.
2) Has anyone here been told you have a short sphincter? Did you ever regain continence?
Thanks.

Dripping with anticipation,
Jeff (the leaking one)
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 3+4=7, 3+3=6. Bone and C/T scans neg.
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.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. There must be another issue. Uro mtg 4/23.
5/22/10 10 months: 2 pads per day, 190 ml/day Scope on June 12.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05, 4/14 9 months - 0.04 and <0.01 with ECLIA.


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 6/15/2010 8:19 PM (GMT -6)   
jeff
- from what you have stated here - complete with visual props - it appears that you are a little slower than average - there is hope - maybe you just need more time -
-am so glad to hear there is no scar tissue or other things going on
- and with regards to the salesmanship of the doc - they do what they do
- check out the other postings on hw regarding the advance sling - the doc who visited here was very gung ho about the product including the line as part of his pitch ( oops, I mean seminar) ..."EVERYMAN deserves to be continent !!!"

may you leak less day by day

huggies
BRONSON
.................
Age: 54 - gay - with common-law spouse of 13 years, Steve - 60
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - will go for trimix in April when I see doc
Incontinence: Feb 2010- 3-5 pads/1-2 clothes changes/day- March 3, 2010 - week 14 after surgery -finally seeing improvement - March 29- incontinence better - 1-2 pads a day - one pad at night - May 25 - 1 pad during day - 1 pad at night for security (barely needed at all) - stress incontinence at work - lifting trees and shrubs...
location: Peteborough, Ontario, Canada
Post Surgery-PSA: - April 8, 2010 - 0.05 - I am in the ZERO CLUB - hooorah!
Next PSA - October 8, 2010 - TBA -
............


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/15/2010 8:23 PM (GMT -6)   
jeff,

i was just thrilled that the doctor scoped you, and you didn't really try to scope yourself, lol. sounds like idea of a little more time before doing anything more drastic rings well with me. also sounds like you and your doc were working together on your problem, thats a good thing.

david in sc
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
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 6/16/2010 12:03 AM (GMT -6)   
David,
I was very disappointed when I saw his camera. It was a snake-like device about 6-7 mm in diameter. My scope is 3.8 mm and produces images that are crystal clear with at least 2x the resolution. On the other hand, he was able to pump the saline in and mine can't do that.
He also had me prepped with a squirt of lidocaine up the urethra. I couldn't do that either.
Just think how much money I could have saved the insurance company.

Bronson,
I am leaking less and less each day. My data curve shows a decrease of 1.023 ml per day - a very slow decline but still a decline. If it flattens out before the 6 months I might ask for an earlier appointment but at this point I will wait.

I sure would like to know the length of a "normal" sphincter. I wish I had thought to ask the Uro at the time.
Jeff

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 6/16/2010 12:23 AM (GMT -6)   
Jeff, So happy that you got scoped. Was thinking about that this very day. Started to make a call but said to Pat. Think I will wait a bit to see if he post something.

I do agree that waiting sounds like a good plan for now.

Take care buddy.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1 pre cancer core
10/08 Nerve-Sparing open radical
Surgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clear

3 month: PSA <0.1
6 month: PSA <0.1
10 month:PSA <0.1
1 year: PSA <0.1
16 month:PSA <0.1

ED - Started Cialis at 3 months, tried all 3, 6 months added pump, 9 months Tried MUSE (YUCK) Bad experience.
1 year mark Found new Urologist visit was at 14th month post surgery
Started Injections, Caverject! (Success)
17 month: ED making improvements : Oral Meds gets me 85%


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/16/2010 8:52 AM (GMT -6)   
This isnt much, but does this info help

http://en.wikipedia.org/wiki/External_sphincter_muscle_of_male_urethra
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
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/16/2010 8:56 AM (GMT -6)   
or this one........was way over my head, but might be right up your alley:

http://www.wormatlas.org/male/musclemale/mainframe.htm
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
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 6/16/2010 9:19 AM (GMT -6)   
Jeff, I'm glad to see that your tests indicate a slow improvement. If you consider your prediction curve to continence accurate, are you planning any celebrations the morning or evening of the day? wink
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 110 gms., margins clear
3 Years: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 6/16/2010 9:43 AM (GMT -6)   
Jeff,

I have been told I was short also, but don't think they were talking about my sphincter.

I actually thought they said they removed all of the sphincter, so I am surprised that any of it is there. I guess that is good news.

Glad they didn't find any scar tissue, and everything looks good.

Time is a good thing in these situations sometimes. I hear mixed reports on slings and those kind of things, so I think you were given logical advice. Did he examine your polynomial formula to insure that it was done correctly ?

Keep on squeezing my friend.
Goodlife
 
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 injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 6/16/2010 10:27 AM (GMT -6)   
James,
If my curves are correct and continue to decay linearly, my predicted dry date is 10/22 with a standard deviation of about 15 days. The Uro tells me that I can expect to see a leveling off (that should have occurred already) which will move the date further out. As the time draws nigh I will send out invitations.

My curves are quite detailed with only a few minor gaps. It has been almost 300 days so my forecasts and R-squared values almost have the gravitas of a NIH research paper. Maybe I should publish.

David,
I enjoyed the paper. The second one did not apply to me (or any of us for that matter) although I did learn a few things. Thanks.


Goodlife,
I will keep squeezing. The Uro actually scans my plots into my medical file. I'm pretty sure he trusts my numbers. After all, it is not like I'm selling anything.
It sure was very interesting to watch the muscles contract and seal off when I kegeled. It is impossible to hold it for any length of time but at least I know they are working.
Things are still quite good today. Must be due to swelling. Even though it is temporary, I'll take the relief.

Stay dry
Jeff
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 3+4=7, 3+3=6. Bone and C/T scans neg.
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.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. There must be another issue. Uro mtg 4/23.
5/22/10 10 months: 2 pads per day, 190 ml/day Scope on June 12.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05, 4/14 9 months - 0.04 and <0.01 with ECLIA.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 6/16/2010 12:40 PM (GMT -6)   
Maybe we can have a pad burning ceremony at the GFMPH weekend !

Oh, did you see Tony's post about meeting up with Todd. He said Niagara is on his list of places to see.

Told him we would meet him there.
Goodlife
 
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 injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


brainsurgeon
Regular Member


Date Joined Jul 2009
Total Posts : 137
   Posted 6/16/2010 12:40 PM (GMT -6)   
On "They do what they do". Of course "they " do, and they better pick out good candidates, if they want to enhance their reputation as being good.
70 years old (1939) USA citizen
Prostatic carcinoma dxed June 2009 by PSA (7.0) and then Bx
PSAs yearly since 2001 ranged 1.52 to 7.0. Doubled from 3.5 to 7.0 in one year.
Neg. CT and Bone Scan
4 of 8 biopsies positive (all right side) Gleason Score 3+4=7
Robotic assisted total prostatectomy and node excision July 2009 in Luzern, Switzerland by Dr. A. Mattei in the Kantonsspital. New Gleason was 4+4=8
pT2c G3 pN0 (0/14 nodes +, Margins, etc. clear
Catheter out in 5 days (home in 3 days). No incontinence
Positional neurpraxia in hip and knee resolved 90+% in 5 months.
Potency: beginning tumescence??? at 3 weeks post-op. Still happens at 3 months PO. Nearly usable one month later. At 5 mo. with 100 mg Vitamin V, pretty good. Now beginning 5 mg Cialis daily. 11 months post-op had first usable erection.
3month PSA less than 0.01, 6 month PSA less than 0.01, 11 month PSA remains less than 0.01


male_sling_problems
Regular Member


Date Joined Nov 2009
Total Posts : 134
   Posted 6/16/2010 12:56 PM (GMT -6)   
Hello Worried Guy,

I used 1-2 pads per day for ten years. I was implanted with an AdVance sling by American Medical systems six months ago. I have not required a single pad since the day following my surgery. The results have been fantastic!

Best regards,

John

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 6/16/2010 1:03 PM (GMT -6)   
John,
I read every posting you made about your journey. When the Uro said he only does AdVance I had your experience in mind.
Thanks
Jeff

male_sling_problems
Regular Member


Date Joined Nov 2009
Total Posts : 134
   Posted 6/16/2010 4:35 PM (GMT -6)   
Hello Jeff,

You may have read where I went to The Cleveland Clinic last December to have the Virtue sling removed and the AdVance sling implanted, all in one extended surgery.

As most people know, The Cleveland Clinic is among best rated urology centers in the USA. The senior urologist, that did this second surgery, told me that they only implant AdVance slings at The Cleveland Clinic.

I only wish I had started there instead of going there in total desperation.

Best wishes,

John

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/16/2010 5:04 PM (GMT -6)   
John - its just great to know that you found a good solution to a long lingering problem, hopefully it will always stay like that
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
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 6/16/2010 6:54 PM (GMT -6)   
My incontinence issues may be similiar to where you where 5 months ago, I guess. I am 6mo. post da Vinci. I don't measure my output as I see no point in that, yet, as 100% leaks out when I am on my feet and active. Nite time and sitting while reading, I am 80-90% continent and can collect what looks like 200-300ml. My surgery was at Tulane NOLA and I think my surgeon was great for the op but not much help after. Seems most of his patients do a lot better than me and don't have much issues. Good thing for him. Anyway, he did put me on Imipram at 3mo. It didn't help at all. Recently I have returned to my local uro who diagnosted me last fall and he sent me off to PT. Three weeks now on bio,stim and kegels in ten different positions. PT says I am making good progress but that is just on their computer not my incontinence. I also had huge gland estimated at 60gr pre-op so that commonality had me not expecting to make the ususal progress. But now I am begining to get concerned. My PT has asked if I have been scoped and I guess that will be next after I finish the closely followed part of the PT. By the way you could have not mentioned 6-7mm. I had assumed it would be smaller.
It gave me some hope to hear that you are still making progress even if it is small. I basically have not improved at all since the few weeks after cath removal. The cath removal was something to remember, I had so much "leakage" all I could do was laugh.

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 6/17/2010 9:05 AM (GMT -6)   
Jeff, at what point did you stop having 100% leakage while on your feet. It sounds like you are now able to void occasionally during the day. I have the urge and I am able to void during the day only if I am in the house and not outside working on something. I have tried to image what effect the large gland might have on the results and maybe the shorter sphincter is something that I have too.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 6/17/2010 9:27 AM (GMT -6)   
Hey knotreel,

Welcome to Healing well. Too bad you are here checking incontinence postings.

I did not bother to take detailed data for the first month thinking I was going to be dry by then. When the second month rolled around I decided I'd better start documenting. I moved the lab scale into the kitchen and the rest is history. Weight is a much more accurate measure than simply counting pads.

I did PT for a few months, bio feedback, etc., and the therapist basically told me I had good muscle tone, I was doing everything right and that after 9 months, improvements will be unlikely. It was time to see an incontinence specialist. He told me the same thing. I still do the kegels and after seeing the action on the video screen I know I am doing them correctly.
The only way I know I am improving is by looking at my data plots. I have three curves: raw data, 2 day average, and three day average. Then I add a linear curve fit and a 2nd order polynomial curve fit. I use the computed curves to predict when I will be dry. As long as the curves keep indicating an ever closer dry date, I will figure I am improving and will not ask for surgery.
I'm an engineer and data helps put things in perspective for me.

Jeff (the leaking one)

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 6/17/2010 10:53 AM (GMT -6)   
Knotheel,

My prostate was the same size as yours. But my PCa was further along, so who knows how much material was taken out.

By the end of the second month I was able sit and be dry but the second I stood up I would begin to flow. I could run outside and let fly if I was wearing shorts. At this point, ~11 months, I am dry at night, dry when sitting. However, I leak when walking or if I make any sudden movements, or hear a loud sounds or sneeze. If I have to blow my nose I must sit down.
I can stop my stream when flowing and can hold it for 10-20 seconds or so, but it is a sisyphean task. Eventually it will pour down my leg.

Improvement is slow... glacially slow, tectonic plate movement slow ... but still improvement.
Stay dry,
Jeff

Post Edited (Worried Guy) : 6/17/2010 9:58:17 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/17/2010 11:27 AM (GMT -6)   
What does "sisyphean" mean?
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
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 6/17/2010 11:47 AM (GMT -6)   
I am just looking foward to the day where I am able to pee a tiny bit while i am up doing stuff.
My surgeon turns out be just that, at the 3 and 6mo. he mentioned the cuff. I told myself from the start that I would not even let that thought into my brain till well after a year. Well, it is starting to slip in. My management of the pads ran into trouble at the begining of the hot weather in Louisana. Long story short, they really can't be worn between my legs while working outdoors. The rash sets in and no cream will stop it.
So, I am counting on you to bust thru, and blaze the way for me.
ps, our surgeons probably sent our trophy sized glands to a taxidermist and they are on their walls to be admired by their peers with wild stories told of how they were bagged.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 6/17/2010 1:17 PM (GMT -6)   
Hey Knotheel,
Our prostates are nothing compared to James C's, (the moderator). His was 106 I believe. I heard that one is displayed in the Smithsonian someplace. Yikes!

My surgeon was basically through with me the instant my prostate plopped into the bucket. After that, I met with his PA. Sure, he said he'd respect me in the morning, but you know how men are.
You have to figure, if you are #1327 on his score card, you'll be as memorable as the last glass of water you drank. (unless your check bounced)

Did you try the pad in pad technique? Stuff a smaller pad onto the larger pad. That way you can change more often.

Jeff

Post Edited (Worried Guy) : 6/17/2010 2:32:25 PM (GMT-6)


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 6/17/2010 3:26 PM (GMT -6)   
I have to admit, this is a funny thread.
 
Jeff, glad you are improving, even if it is logarithmically.
 
Mel (killing lots of time at an airport due to flight delays!!)

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week).

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 6/17/2010 5:38 PM (GMT -6)   
Jeff, ahem, (blushing slightly) 110 gms, actually, if we wish to be accurate.... but really who's counting...devil blush smilewinkgrin
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 110 gms., margins clear
3 Years: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN

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