new member post rp 6 weeks

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seaofpee
New Member


Date Joined Feb 2010
Total Posts : 17
   Posted 3/5/2010 9:52 PM (GMT -6)   
Hi,  6 weeks after surgery and I am sitting in a sea of pee. Start kegel school next week. not sure if that's for more co-pay or on the level. Anyone have headache or leg pain after? How about, I believe it is called the afex underwear system? This incontenence is creating land fill all it's own. And yes i kegeled before like crazy, didn't about 3 weeks after, caused toe nail curls.
I am new so i will keep it short.
Thank You in advance. 

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 3/5/2010 10:06 PM (GMT -6)   
For most of us, the first 6 to 8 weeks is as you describe it, A sea of pea. I assume you are using pads. Many guys use 6 to 8 pads a day for a while until they start to get it under control. Most guys use the pads. There have been some giys who have bought some real heavy under ware when they are just leaking a little.

Kegels are of course a goodthing, but there are guys and doctors who don't put a lot of stock in them. It is really hard to say. I think most of did them just in case they would help.

For me personally, I decided to go to a Cunningham clamp, which allowed to me work during the day without wetting my pants. They can be adjusted, so that the clamo can be worn for 6 to 8 hours. When your bladder ois full, you just release in front of the toilet like normal. I used it for 2 or 3 months until my leakage slowed to 1 or 2 pads a day.

Doctors generally don't like them. They want us to learn how to hold it. But most of them never had to go around in wet pants either.

I am tolally continent, but it took me 8 months. Still a drip or suirt here and there, but my undreware can handle it.

Welcome to Healing Well. Glad you could join us. Alot of giys put their PC info in their signature, so we can see what kind of a journey you are on.

Please feel free to ask away on here.

Good Luck !
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


seaofpee
New Member


Date Joined Feb 2010
Total Posts : 17
   Posted 3/5/2010 10:21 PM (GMT -6)   
Thank You goodlife.
Just figured out now to put results in at least i think i did it right. I am using underwear, and thank God for the va on that.
Changing 4 to 6 times a day. When i sit usually the bladder fills but when i move around i allways have an extra with me.
 
First surgery October 09, that's when they found psa of 5.4
December biopsy  gleason  7  3+4
January 20 rp
psa 2 weeks after 0.06 Thank God.
I feel blessed.  The surgeon said the cancer was starting to come out of the prostate.
 
 


skeener
Regular Member


Date Joined Dec 2009
Total Posts : 214
   Posted 3/5/2010 10:21 PM (GMT -6)   
Seaofpee
 
Just wanted to welcome you to HW.  You will find this a truly great group.
 
Sorry about the seaofpee.  I'm sure it can be frustrating.
 
I had pretty quick recovery after my surgery but still wearing a pad 4 months later to deal with drips.
 
There are some in the group who have experienced your problem although not quite so descriptively as a sea of pee.
 
I'm sure they will chime in soon.
 
Skeener
Age:  63 
Biopsy: May 09 showed 2 of 12 cores positive for prostate cancer -- 1 at 5% and 1 at 25%.  Cancer indicated as non aggressive.  Gleason Score: 3+3.
RRP on Oct 23/09 in London, Ontario.  Excellent surgeon. 
7 Weeks Post Op -  The fears I had about bad things about the operation and recovery did not materialise except of course ED!!.  Otherwise, everything went very smoothly.  Incontinence not a problem.  Wear a pad when out just in case. Pain was never a problem.
Pathology:  Unremarkable 
First followup PSA and Visit: Feb 11/10 - 0.0.
 
Next PSA May
Next doctor's visit in 6 months      


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 3/6/2010 5:42 AM (GMT -6)   
Hi Seaofpee
Welcome to HW from a fellow Leaker. (Hopefully you won't be walking the Personal Pee Protection Product aisle of CVS as long as I.)

Here are a couple of techniques that might help reduce landfill and makes thing easier for you.

The Depends are great but they havea few disadvantages. They cost $0.52 a piece, you don't really fill every nook and cranny with pee before discarding, and you have to drop trou' to change them.
Here's my solution:
In my earlier days, (1000 ml / day leak rate) I would put a Depends male guard into the Depends Diaper. When the guard will fill up, I'd just just rip it out and shove a new one down there. The Diaper would stay mostly dry and I could do the swap in a bathroom stall fairly quickly. With practice I was able to do it so quickly, I could enter and leave the stall before a "regular guy" could finish and zip up.
When going out I would start the day with a half a Poise Pad inside a guard, inside a diaper and pitch the poise pad when I got to my destination. (I'd blame it on the cup of coffee I supposedly had on the way.)

With three layers you present a proud package that some women notice. Feel free to strut your stuff with pride.
Good luck,
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 6=3+3. 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 cutting down on fluids. Bad idea. I know.)
12/11 5 months: Still 3 pads per day. 400-450ml/day
2/26/10 7 months: Still 3 pads but leak is now 320 ml (5 day avg.)
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05.


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2840
   Posted 3/6/2010 6:11 AM (GMT -6)   
Dear C of P:
(seaofpee)
Been there - doing that ... slow improvement ...
You will get through this watery mess - the double and triple layer is a good idea - especially to help self-esteem , so you don't just hang around the house worrying about messing yourself. I use Male Guards ( you can get EXTRA absorbent generic ones that cost less) - and make sure you check the label ...

Is there a reason not to restart Kegels now? - my uro/doc/surgeon had me doing standing pelvis thrusts ( and clenching the muscle as if trying to stop a fart ) - sorta like "the time warp dance" from Rocky Horror Picture Show movie.... and don't overdo it ( your mention of curling toes) ... it takes time and patience ....

One of the best things I learned here from the great group of guys (who have been through what you are experiencing) is that the muscles and nerves that have been traumatized by the surgery are finally reconnecting and with regular kegels ( my doc said 5 times a day - 20 reps each) .. the body and brain reconnect.... my surgery was in nov 2009 and finally on first week in march things started to connect properly...

good luck with your journey - keep us updated....

hugs
BRONSON

....................
POST EDITING - keeping original letter -

seaofpee - sorry , I thought you meant in a joking turn "kegel school" - just reread your note and you state are going to start a programme using an external catheter - the apex system
- my personal concern is that if using the system so EARLY in your recovery, your brain/body/nerves would not even try to reconnect to help gain control of your bladder again.... and lead to total incontinence...

- may I ask who recommended this system and approach to you -

-my questions and concern are sincere - I felt totally out of control at that same stage of recovery as you - your initial reason might be for work or driving or going out - but an easy trap to fall into - ( I know, I was looking up external catheters last week before things finally started kicking in)
hugs again
BRONSON again
.................
Age: 54 - gay - with spouse, Steve - 59
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: 3-5 pads/1-2 clothes changes/day- finally seeing improvement - March 3, 2010 - week 14 after surgery -
location: Peteborough, Ontario, Canada
Post Surgery-PSA: to be announced - April 8, 2010
............

Post Edited (tatt2man) : 3/6/2010 5:21:28 AM (GMT-7)


In This Together Wife
Regular Member


Date Joined Dec 2009
Total Posts : 135
   Posted 3/6/2010 7:26 AM (GMT -6)   
Just wanted to include a welcome
CareBear
(Bear's stats) Age 49
 8-4-09    Family Practioner for back pain  PSA 4.9
8-20-09  Consult with urologist                PSA 4.89
9-2-09    Biopsy          3 cores positive 7% 3+3 (6) gleason
11-13-09 DaVinci
11-23-09 Cath removed  Path report cancer contained neg. margins
 2-22-10  PSA 0.01 !!!


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 3/6/2010 8:34 AM (GMT -6)   
First, welcome to HW. The leakers and drippers have taken you well in hand, so I don't have anything to add, except you are welcomed and hope you stay with us during your journey.
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 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


jacketch
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 3/6/2010 9:30 AM (GMT -6)   
Welcome CofP. Sorry that you need to come here but glad to see you found HealingWell.

62yo
V10.46 Dx Feb-09

RRP 5-5-09

No adverse SE

PSA 6-19-09 -0-

PSA 9-21-09 -0-



Thriving, not just surviving!


seaofpee
New Member


Date Joined Feb 2010
Total Posts : 17
   Posted 3/6/2010 9:52 AM (GMT -6)   
Good morning everyone. Sure is great to talk to someone who knows. And the suggestions are so welcome. Worried guy thank you for the pad in the diaper idea, that will allow me to go to town and back without dropping trou on wally worlds filthy floors, and the extra package won't hurt cause the little fella isn't to excited these days.
Bronson, thank you. i agree with you that this would be to early for any external device good heads up so to speak. Getting frustrated and need to be patient.
Thank You carebear.
Thank You Jamesc
and jacketch.
First surgery October 09, that's when they found psa of 5.4
December biopsy  gleason  7  3+4
January 20 rp
psa 2 weeks after 0.06 Thank God.
I feel blessed.  The surgeon said the cancer was starting to come out of the prostate.
ed. still there no progress uro says pump will help
age 58
cialis caused 3 day headache
surgery done in Denver


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 3/6/2010 9:52 AM (GMT -6)   
Welcome to our corner of the world.

You are getting good advice from several men that are still dealing with incontinence issues. Glad you found us, and hope you continue to post your journey with us.

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
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, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


deer hunter
Regular Member


Date Joined Jan 2010
Total Posts : 246
   Posted 3/6/2010 9:56 AM (GMT -6)   
Hi seaofpee thats a goodone welcome to the brotherhood of pc the others have somed it up pretty good not much to add but it should get better with time. I think the guys around here know about as much as the DOCS.kept us posted
DEERHUNTER
dx age 57 01/06 open RP 4/06 psa in 01/06 8.1  surgery path report Gleason 3+4=7 poorly differentiated  tumor was 90%involved in both lobes surgical margins postive. in the right apex and right radial margins tumor grade G3  perineural invasion present high grade of PIN found  T2c NX MX PSA 0706  .01 10/06 .02 01/07 .03 04/07 .04  06/07 .05  07/07 .08 07/07 bone scans pelvic ct neg. 08/07 proscintic scan neg.9/07 psa.10 net with rad onc. wanted to do SRT but i did not do it 10/07  saw a new dr at Emory University [my old dr urg. suggested second opinion ]  bone scans negs ct scans pelvics neg. biopies of the bladder and adrinal glands neg.another proscintic scan neg.12/07 Psa .11 clinial trial Emory injected with protons to try and find the cancer cells no luck 3/08 psa .17 06/08 psa .23 psa 09/08 psa .32 12/08 psa .39 3/09 psa .39 6/09 psa .43  meet with medical onc. he said  i might have waited to long to start SRT 7/09 psa .50  another bone scan ct scan all neg.MRI neg. meet rad. onc. 7/09 started casdex 50mg 1 day for 30 days 2 shots of lupron started rad treament 10/09 40 treatments 75 gm 12 shots each time all aroud pelvic finished 12/09  psa .07 and psa 01/10.05 next dr visit 03/10 wait and see!!!!!!


JB71
Regular Member


Date Joined Nov 2009
Total Posts : 206
   Posted 3/6/2010 11:59 AM (GMT -6)   
Hello S.O.P. and welcome to our temporary little group of non-stop pee,ers.

I'm 6 weeks out of open surgery and still need to wear Depends pull-ups. I was waking up twice a night, first around 2am. and then again around 5. Something tells me to wake up and go and I usually have a nice stream.

I do think I'm SLOWLY getting better but last night, after a couple (?) nice rum drinks and wine with dinner (must have been celebrating something) I didn't wake up untill it was to late. Good thing the good wife was thinking ahead and bought a full size plastic bed sheet. Still, she wasn't all that happy at around 3am.

I do have a problem with some of the Depends Super pull-ups though. Noticed when walking a lot, the padding, by gravity, will fall down and form a large ball, making it harder to walk and sit. I'm going to try the TENA brand tomorrow.
.
Age, only 71.
 
July 2009, PSA 9.1, free ratio 0.16
September GLEASON 4+4=8, T2A
Prostate 44cc.
 
Calcium: 2.46  (range: 2.20 - 2.65 mmol/L)
25 Hydroxy Vitamin D: 102 (range: sufficiency:
76 - 250 nmol/L)
 
Bone Scan: Negative
CT Scan scheduled for Dec. 1st. Negative.
 
Started Casodex 50mg. on Nov. 6, first pill of 30.
Got Lupron 22.5mg ( 90 day ) on  November 19.
 
No real side effects as of Dec. 15 except dry skin and hair but getting quite 'porky' in the belt area even though now I go to the gym, three times a week. Also I dont have a need to shave anymore so now I can save my 'shaving' allowance and direct it to my stash of Depends !
 
Christmas Day got my first hot flashes. Thanks Santa!
 
Open surgery scheduled for Jan. 22 by Dr. J. Chen
 
Open surgery done on Jan. 20th. by Dr. J. Chin at London's University Hospital.
 
Cath removel scheduled for Feb. 8th. Yes, I know,
that will be 19 days. Dr. is out of country until then.
====================================
Pathology Report:
 
Gleason Score: cannot be determined due to hormone therapy effects. ???????
 
Extraprostatic Extension:
present, left radial, multifocal
present, left basal, multifocal
 
Resection Margins:
Apical: involved by invasive carcinoma, multifocal
Bladder Neck: involved by invasive carcinoma, unifocal on left side.Other: non-tumoural prostatic present at resection margin.
 
Perineural Invasion: present.
Seminal Vesicle Invasion: absent
Lymphovascular Invasion: absent
Lymph Node Status: no malignancy in regional lymph nodes
 
Additional path. findings:
high grade prostatic intraepithelial neoplasia
 
Pathology Stage: yp T3a NO MX
==================================
Radialogist appointment was on Friday Feb. 26 with Dr. Glenn Bauman in London.
 
Got another Lupron 90 day shot today and he wants to start IMRT soon. CT Scan plus measure scheduled in about 3 weeks. ( march 20)
 
First PSA test since surgery on March 25th.
 
Next appointment with the surgery Doc is April 13.
 
.


seaofpee
New Member


Date Joined Feb 2010
Total Posts : 17
   Posted 3/6/2010 1:33 PM (GMT -6)   
Hi JB71, this is a second reply don't know how this site works yet. I use tenas they don't seem to ballup and stay up better. 6 weeks post here to, ready for a vise grip. my patience is thin and my pants are thick. Still can't wear my wranglers.
Rich
First surgery October 09, that's when they found psa of 5.4
December biopsy  gleason  7  3+4
January 20 rp
psa 2 weeks after 0.06 Thank God.
I feel blessed.  The surgeon said the cancer was starting to come out of the prostate.
ed. still there no progress uro says pump will help
age 58
cialis caused 3 day headache
surgery done in Denver


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2840
   Posted 3/6/2010 3:42 PM (GMT -6)   
Rich - have you tried the extra absorbent guards? - shaped like a tena pad but for men and their forward thinking - they fit snuggly in underwear and don't show
you can wear your wranglers with them ( unless they were too tight to start with) and with a little rearranging - your wedding-tackle - one-eye trouser trout - packing heat - (pick a name) would be comfortable.
Just remember if you dress left or right ( the side mr. happy normally hangs towards - left or right leg) and shift the guard that way to avoid any surprise side leaks..

(please disregard this if you are having troubles with B.M.'s as well ( you mentioned the pull up diapers)

hugs
BRONSON


P.S. Rich _ I found your first reply in another topic area - it appears you pushed the new topic button instead of post reply - check out the FAQ's and help manual at top of page ... I have yet to get the smilies to work for me !!
.................
Age: 54 - gay - with spouse, Steve - 59
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: 3-5 pads/1-2 clothes changes/day- finally seeing improvement - March 3, 2010 - week 14 after surgery -
location: Peteborough, Ontario, Canada
Post Surgery-PSA: to be announced - April 8, 2010
............

Post Edited (tatt2man) : 3/6/2010 2:46:40 PM (GMT-7)


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 3/6/2010 4:32 PM (GMT -6)   
Rich,


I see you have gotten a lot of good advice. The "King" of leakers has already answered but I consider myself the "Crown Prince" so I'll give you some hope. Your chances of being pad free in a year are 90% and you have a good chance of getting there between 3 and 6 mons. You are already in the "zero" club so, you know, just go with the flow, and deal with the misery knowing the chances are big time in your favor.



Steve

Floyd
New Member


Date Joined Feb 2010
Total Posts : 18
   Posted 3/7/2010 11:11 AM (GMT -6)   
Seaofpee, (what a great name, I wish I had thought of it,) I am 4 weeks post - op and still see no improvement except that I can now hold most of it in for 30 seconds rather than maybe 10 seconds last week, on the way to the bathroom after sitting. Otherwise, with anything other than supine or sitting position I constantly leak. I too have found the best protection for me is the absorbant shorts with a guard inside (I use the Depends with the boost insert inside.) That way all that has to be done is to go to the BR and drop trou partially and change the insert (I`ve gotten pretty fast at this) as long as you don`t wait too long to change it and it starts to overflow into the main garment. The one thing that I might add to this is don`t try to avoid fluids and dehydrate yourself when busy as in at work like I`ve done a few times. It did not seem to slow the inevitable pad change much and just made the urine more concentrated and irritating when it passed to the point that every few seconds you not only were peeing but you also felt burning discomfort with each wonderful squirt. I hope that we both dry up soon.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6885
   Posted 3/7/2010 2:05 PM (GMT -6)   
(I moved this to get it into your main topic)

(In my opinion) the Tena male pants are slimmer than Depends, so fit better in general. Downside for me is that they are a less robust construction, so you have to be very careful taking out pads, lest they tear up. They are also by far the most expensive.

Depends pant beats the generic store brands by far, and if you watch for sales, they can be had for an equivalent price. I've compared to Kroger, CVS, and Walgreens (Certainty house brand).

However, none of them will work well alone for me. I use a Walgreens or Depends Guard, and change when needed. The Tena guard is also good, but also the highest-priced.

All of these companies make both a unisex, womens, and men's version. In all cases I have tried, the men's version is the better fit compared to the unisex. The Tena unisex is much bulkier than the Tena male.

Also, I've noticed over the last few days that Walgreens in my area is clearancing the Tena pants of both types - they are going to carry just the Depends and Walgreens brand pants, the manager tells me.

Have not been to CVS in a couple of weeks, so don't know what they are up to.

I am 19 weeks out from DaVinci, so have had time to try them all.
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