KW's Journey (Part 2)

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kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 11/25/2007 1:12 PM (GMT -6)   

 (Part 1)  KW’s Journey and battle with incontinence!

                                        (click on link)

 
   I had to start Part 2 because my first Journey is locked!  Thank You to everyone that has posted and been supportive of me and the other "leakers" here.
 
 Runs in the Family!
 
   I found out that my dad's brother has just be diagnosed with Prostate Cancer.  He is 67 years old.  I believe he PSA was 2.something.  He is going to the Dr. that assisted with my surgery.  I believe he is going to have hormone therapy for a short time then have the seed implants.  That is about all I know of his situation.  So far my Dad and older brother have checked clean.
    
 
    I have not posted much of anything here because things are not improving on the incontenance front very fast.  I seem to be stuck at 3-5 pads a day.  Of course this all depends on my activity level and caffeene intake.  As a matter of fact knowing I would not be getting out yesterday and would be watching football all day I decided to make me a pot of coffee in the morning.  Yes, I drank about the whole part while reading the morning paper!  I had several Full bladders and as usual I could make it to the toilet holding it all in.  Maybe a few drips but overall had good control.  If I had been on my feet working around the house I'm sure it would have been a large pad count day!  Anyway, I still go to my physical therapist each month for a check up on the machine.  She said I made another good improvement last time.  I actually getting close to the low end of the range that control normally starts to happen.  There have been days at work that I have done better.  Using only 1 or two pads.  Acutally having the urge to go pee when my bladder is getting full.  So I guess there is hope.
    On the ED front things are working well with 100mg Viagra.  Without, things sometimes work.  I continue to have some night time or early morning fullness at times.  I also use a condom to help with the leaking. Seems to work well.  The only thing I learned was when your "finished" you need to go "clean up" and get back in a pad becuase what is there will leak out when you shrink back up!  So much for the cuddle time!
   At my last visit to the Dr. at the OU Medical Center the Dr. still did not feel total control would come back.  He did say the report from the therapist looked good.  Basically he said it was up to me to make the call to keep trying or to go with the AUS.  I told him I still want to wait until I get to 18 months or stop making progress with the therapy. 
  I go to my primary Dr. for another PSA test and check up in a couple of weeks.  I'm sure I'll be looking at 0.00's agian.  I'll let you all know when I do.
 
        Will update you all later,
 
        KW

    43

    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.

        Biopsy Sept. 27, 2006 - Diagnosis Sept. 29 - 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7

        RRP on Oct. 17, - Nerves on right side saved.

    All Lab's clear.  No Cancer outside prostate

    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006

    First Post op PSA on Dec. 11, 2006  Undetectable 0.00

    Office visit on Jan. 19th due to continued excessive urine leakage.

    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)

    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!

    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 

    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.

    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!

    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!

    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!

    June 1st Start Bio-Feedback to try to control my leaking.

    Oct 17, 2007 1 year Post Op - Still fighting moderate / Severe incontenance. Using 4-6 pads a day.  Erections usable....sometimes!...Better with 100mg Viagra

 

Post edited to add link  : )

Post Edited By Moderator (bluebird) : 11/25/2007 5:23:36 PM (GMT-7)


GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 11/25/2007 2:39 PM (GMT -6)   
Hey, KW - it sounds like you're making amazing progress, based on the multiple pad use from just a few months ago! As another "lingering leaker," we know how continuously frustrating it is. Now, we're at 1-2 pads, but mainly for hygiene purposes. Some days only one and really just to catch a few errant drops. It certainly depends on the activity level and some days are just worse in general. So, we continue to see progress and I think you're doing much the same. Any progress is a huge step, so congratulations!
Husband age 66
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06 - Austin, TX w/Dr. Randy F.A.G.I.N.
T2a (at biopsy)
At pathology - cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/06, 4/07 - undetectable!
11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
PSA test "Un-zero-detectable" on 10/16/07.
9% chance recurrence w/in next 7 years (down from 50% as we understand it)
Future: PSA tests twice-yearly for now.
 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 11/27/2007 10:17 PM (GMT -6)   
Hey GreenAcres, Sorry if I missled anyone about my "improvement". When I say 3-5 pads a day, that is full pads. At work I change more often to keep from having leaks. If the pad is just damp I only count it as a 1/2 pad. So if I were to count every time I changed a pad for any reason I would probably be using as many as 8 pads a day. Hope that is all as clear as mud!
Anyway, I just want to encourage the 5-10% in the long term leakers club to keep working at it and try to keep your spirits up.

KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
        Biopsy Sept. 27, 2006 - Diagnosis Sept. 29 - 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
        RRP on Oct. 17, - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
    Oct 17, 2007 1 year Post Op - Still fighting moderate / Severe incontenance. Using 4-6 pads a day.  Erections usable....sometimes!...Better with 100mg Viagra
   


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 12/12/2007 10:13 PM (GMT -6)   
    Join the Fun!!!
 
    On December 5th I went back to my primay urologist that did my RRP for my 4th post op psa and a check up.  Of course after checking in and then giving a urine sample the medical assistant took me to a exam room.  She took my B.P. and went over my current conditions taking notes on the chart.  She then took the blood for the psa.  Then I sat and waited for the Dr. to come in.  To my surprise the P.A. came in followed by a attractive young lady wearing a white lab coat also.  I did not even notice if her name was on it or if it said Dr., P.A., or anything?  I know the P.A. introduced me to her and said she was here to observe.  But I really didn't catch much because I really thought I was going to see the Dr. today!
  The P.A. went over how I was doing.  We talked briefly about my ammount of leaking, my therapy session, and my second opinion visits at the university medical center.  He basicly said, just keep trying all you can and if you get tired of it we can "go in and fix it" meaning a sling or AUS.  I told him my plans to wait untill at least 18 months or until my therapist says I am not gaining any more muscle tone before I do anything.  But if I do, I will have the University Dr. do the surgery.
  Then he said, Ok....let's do the rectal exam.  He then asked if I would mind letting the young lady feel what it is like where a prostate has been removed?  Knowing they have to start somewhere and having a daughter in nursing school now I said it was ok with me!  So I droped my pants and leaned over the table.  After the P.A. checked me he said all was good.  Then he told her what she should expect to feel.  Atleast her finger was much smaller than His!  After all the fun was over they both thanked me for letting her check too.
    The psa test came back the other day!  I guess it is still considered a Zero but it was 0.01 on the sheet.  I just hate having the .01 on there.  My next visit is not until June!  Will see what happens then I guess.
 
    As far a the therapy and the leaking is going.  It is still about the same as it has been for the last several months.  Still using 3-5 full pads a day.   Some days more.  But never less than three if I have any activity at all.  I had one day that I only used 1 1/2 pads but we were froze in and all I did was lay around and watch t.v. the whole day!  Still going to therapy once a month to get my readings and any new exercises she thinks I need.  I am thinking about trying acupuncture a few time to see if that might help.  I don't care where they stick the needles as long as it helps!!
    We are planning a Alaskan cruise next June so I think I will wait until after that to decide what is next.  I would not want to rush into the AUS right now then have a problem with something at sea.  So I will deal with what ever I need to until we get back from that. 
 
    KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
        Biopsy Sept. 27, 2006 - Diagnosis Sept. 29 - 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
        RRP on Oct. 17, - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
    Oct 17, 2007 1 year Post Op - Still fighting moderate / Severe incontenance. Using 4-6 pads a day.  Erections usable....sometimes!  Almost like before with 100mg Viagra!
   


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 12/12/2007 11:43 PM (GMT -6)   
Hey KW,

Sounds like you are on the right path. The best news is the undetectable PSA!!!

How come you get a chick with small fingers and I get a defensive tackle for DREs?

Hang in...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 10/17/07 0.00. 
Next PSA test on 1/15/08
 
"Patience is essential, attitude is everything."
 


mochapj
Regular Member


Date Joined Jun 2007
Total Posts : 22
   Posted 12/13/2007 6:47 AM (GMT -6)   
KW,
Did you happen to catch the update I did earlier this week on the improvement my Dad has had with incontinence after starting Tofranil?

He noticed a pretty good improvement after only a couple of days, I will talk with him this weekend to see if the improvement has
been maintained.

Julie

GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 12/13/2007 7:40 AM (GMT -6)   
KW - I still think you're doing so well! And you have our admiration for hanging in there emotionally through it all. Those "undetectables" are the best! We asked our doc about why the "less than" 0.1 or 1.0 or 0.001 whatever and he said it's the "stupid" way they print the report even though over on the other side it states the tolerance level is in the 0.00 range. It's all still undetectable. Woo-Hoo!

Hope you all are starting to melt up there!
Husband age 66
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06 - Austin, TX w/Dr. Randy F.A.G.I.N.
T2a (at biopsy)
At pathology - cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/06, 4/07 - undetectable!
11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
PSA test "Un-zero-detectable" on 10/16/07.
9% chance recurrence w/in next 7 years (down from 50% as we understand it)
Future: PSA tests twice-yearly for now.
 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 12/13/2007 10:33 PM (GMT -6)   
Mochapj, Yes I did read the post. I have not asked about it yet. Will keep it in mind. I really do not like to take any medicine unless I really have too.
Thanks for the advise.
KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
        Biopsy Sept. 27, 2006 - Diagnosis Sept. 29 - 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
        RRP on Oct. 17, - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
    Oct 17, 2007 1 year Post Op - Still fighting moderate / Severe incontenance. Using 4-6 pads a day.  Erections usable....sometimes!  Almost like before with 100mg Viagra!
    December 5th, 4th post op PSA 0.01!?!?!?   Is that still a 0?  Still leaking!!!!
   


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 12/24/2007 1:13 PM (GMT -6)   

    I just wanted to thank everyone out there that has followed My Journey.  I truly appreciate all the kind words and advice from all of you.  There are also a few of you that I consider Very Dear Friends.  You know who you are.  Thank You so much for being there to talk.  I would not have faired so well without you!

    For those of you just beginning your journey.  Try to keep your spirits up.  When they are down...lean on your friends here on HW. 

    Merry Christmas to ALL.

   KW


    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
        Biopsy Sept. 27, 2006 - Diagnosis Sept. 29 - 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
        RRP on Oct. 17, - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
    Oct 17, 2007 1 year Post Op - Still fighting moderate / Severe incontenance. Using 4-6 pads a day.  Erections usable....sometimes!  Almost like before with 100mg Viagra!
    December 5th, 4th post op PSA 0.01!?!?!?   Is that still a 0?  Still leaking!!!!
   


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 12/26/2007 7:35 PM (GMT -6)   
Hi Kelly,
 
I really hate it that you are still having problems with leaking.  I know that the absence of cancer is most important, but peeing all the time is no fun, either.  Sure hope you don't require another surgery.  The best of the new year to you, my friend.
 
Regards,
 
Bill
August of 2006, PSA up to 4.2 from 2.7 one year ago. 
October free and total PSA 12% free and 5.0 total.
A month, or so later, 4.7.
Late in the year decide on Image Guided IMRT.
Begin 43 treatments on January 23, 2007 and finish on March 23.
Four month post treatment PSA is 1.9.
Seven month PSA is 0.8.


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 12/28/2007 7:05 PM (GMT -6)   
tongue  Dear Kelly,
 

You are a very important member of this forum.  You continue to update us on a regular basis and sharing your strength (positive attitude) is a true gift to all of us and newbies to come.  Thank you dear friend for staying so close!!!

 

June will be here before you know it for your Alaskan cruise…  We enjoyed our Alaskan cruise in September 07…  so much that we’ve already scheduled another one for September 08.

 

Hopefully Berb will let us know how things are going with his treatment

Thread started by Berb:    Acupuncture treatment for incontinence

 

Take care friend ~ and continue to stay close! 

Gentle hugs and warm thoughts surround you.

In Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 12/28/2007 7:07 PM (GMT -6)   

tongue tongue tongue tongue  Yea!! ~ KW,

 

4th   PSA  !!!~~~>>>  Woo~Hoo <<<~~~!!! undetectable

 

Cause for celebration!!!!!  Definitely!!!

What a wonderful day it is ~ each and every-day….   

Enjoy it to the fullest. 

 

In Friendship ~ Lee & Buddy

*     *     *     *     *     *

The ultimate “goal”… we all strive for… Thank you for sharing!

It is very important to “all ”of us!  This is a way of positive feedback…

A way of showing others Hope… and a way of Sharing.

 

J  Caring is Sharing ~  Thank You for Sharing  J


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 1/11/2008 10:36 PM (GMT -6)   
   
    Worth a Try!
 
     Hey All,  Aproaching 15 months post op so I thought I'd send out an update.  Still using up to 6 full pads a day depending on fluid intake and activity level.  I still go once a month to my Physical Therapist for a bio-feedback check up.  Each month I have gone we see a little gain in muscle tone and striength in the pelvic floor area.  But I have yet to reach the level where I should start seeing control return. 
   After seeing some guys here try accupuncture I have decided to give it a try for a while.  I will have my first session tomorrow.
 (1-12-08)  I figure it can't hurt!  I am doing some research on the internet so I do not know how many sessions I will go to at this point.
    As far as my Plan!  I will continue with the PT exercises and check up's as long as we see a gain each month.  I will continue this until June due to personal reasons.  If things are not much better by that time I will consult my Dr. at the OU Medical Center to decide if I will go with the Sling or AUS to try to put an end to all of this.
    I appreciate everyone's kind words and support.  I hope my story will give those guys strugling the drive to keep working at it.  Although incontenance is no fun. And even if a attempt at a surgical fix is in the cards I have to remember to appreciate the fact that at this time I am still scoring 0's on the PSA!
 
    Good Luck to you All!
 
    KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
        Biopsy Sept. 27, 2006 - Diagnosis Sept. 29 - 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
        RRP on Oct. 17, - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
    Oct 17, 2007 1 year Post Op - Still fighting moderate / Severe incontenance. Using 4-6 pads a day.  Erections usable....sometimes!  Almost like before with 100mg Viagra!
    December 5th, 4th post op PSA 0.01!?!?!?   Is that still a 0?  Still leaking!!!!
   


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 1/12/2008 12:29 AM (GMT -6)   
Good luck KW.

Your bumpy journey and fortitude are an inspiration to all of us...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 10/17/07 0.00. 
Next PSA test on 1/15/08
 
"Patience is essential, attitude is everything."
 


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 1/12/2008 8:46 AM (GMT -6)   
Hey Kelly,
Sounds like your trying all options before surgery. I think your a smart guy to try everything before it. I've had accupuncture plenty of times, most of the time you don't even feel it except if he hits a nerve directly, but that seldomly happens. Good luck and hang in there!
Your friend,
Pete  
54 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. Testosterone Theropy since 12/06. I am's what I am and that's all that I am!!! 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 2/3/2008 10:00 PM (GMT -6)   

    Change of Plans.....I Quit!!!!!!!

    Hello Everyone,  After another bad week at work and more reading and soul searching I have dedided to look into a surgical fix to my continuing incontinance (4 - 6+ pads a day).  I will meet with the Dr. that did my RRP and get his opinion first.  I am doing this first because he has scoped me three times.  He is also about my age so he can somewhat relate to my concerns.  I am just guessing but he will probably recommend that I go see the Dr. at the OU Medical Center I have been seeing as a second opinon.  But I will find out for sure tomorrow (Feb. 4th, 2008)

    Thank you all for your support.
 
    KW
    43
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second
    opinion Doctor at OU Medical Center Bio-Feedback training,   
    Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day).
    Feb. 4th, 2008 - Appointment with Original Dr. to discuss options and recomendation for
    surgical fix for incontinance.
 
     


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 2/3/2008 10:23 PM (GMT -6)   
Good luck KW,
 
You deserve to find a fix.  Your patience and courage have inspired all of us...
 
Jim

Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 2/4/2008 6:38 AM (GMT -6)   
KW -
You've been through the mill with all this. You deserve to get this taken care of. I truly hope they find the best way to resolve this for you. Keep us posted.
Paul
47 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6      (Biopsy 3/07 just suspicious)
10/07 PSA 5.06   (Biopsy 11/07  1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC  www.roboticoncology.com
Saved both nerve bundles.
Path Report:  Stage 2cNxMx
-Gleason (3+3)6
-totally contained to prostate,
-10% involvement in L & R Mid lobes
 
 


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 2/4/2008 9:55 AM (GMT -6)   

KW,

The best to you.  And thanks so much for the updated journey.  I will be one year post surgery in a little over a week and still no sign of slowing up.  My uro has said we will talk about intervention at one year to a year and a half, so I expect to at least start discussions with him about a surgical fix also.  I will see him on 02/28.  So keep us updated as soon as you know something.

Gene


Age: 64
07/05 - Biopsy: Suspicious looking cells. 
12/27/06 - Biopsy
1/24/07 - Dignosed cancer: Gleason Grade: 3+3=6
02-14-07 Radical Open Nerve-sparing surgery
Pathology Stage of cancer: T2c
4-18-07: First Post-Op psa = 0.011
05/31/07: Cystoscope reveals "Stricture"
06/12/07: Procedure to remove stone & dilate uretha at stricture: Successful procedure..
8/31/07: Back to new urologist for regular check up & received 2nd post-op Psa.  It was 0.05
8/31/07:  First Bio Feedback session.
9/19/07: Finished 4 Bio Feedback sessions.  No imporovement with leaking. 
9/26/07 - Started injections 
10/27-07 - Began using clamp at uro's encouragement.
02/01/08 - Still leaking & cannot contain urine in bladder except when sitting or laying down.  Can hold it for abut one minute before drip, drip, drip.
02/28/08 - See Uro. Will discuss artificial sphincter 
 


brodie12
New Member


Date Joined Dec 2007
Total Posts : 18
   Posted 2/4/2008 4:33 PM (GMT -6)   
KW     Sorry to hear that your are packing it in.  You sure have been though a lot.  Question- you are still fairly young-have you thought about waiting for stem cell injections- they have had great results in Europe and might be available here pretty soon.           
Best of luck to you     Brodie12   

kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 2/4/2008 10:01 PM (GMT -6)   
Just a quick update on what the Dr. said today! Basicly considering my age he would recomend doing a sling to see it that would give me the relief I am looking for. He did say that 1 pad day for a few drips and squirts would not be out of the question. There is also the option to firm up the area with some collagen injections after the sling is in a while if I am still leaking more than the 1 per day. The AUS is also a option I still require more control.
He does prefer the newer AdVance sling that does not require and screws into the pelvic bone. The only down side to having him do it would be that I would be only his third "Male" sling. But, he does the female slings on a routine basis. He said it is basicly the same surgery once they make the vertical incision under the scrotum. He did do a sling on one of my wife's Aunt's and everything went well.
We discussed going back to the Dr. at the OU mecical center. My Dr. actually was offered a job by him in his last year of residency but decided to go into private practice. One thing that concerns me about the University is that there will probably be several other Dr's in there and they will all want a little part of the surgery. As he put it, "there will be alot of cooks in the kitchen stiring the pot." Not that they would not do their best to give me the results I want, But I just do not like the idea of being a learning tool!
My Dr will be assisted by another one of the Dr.'s in the Urology Group they belong too! So, I am leaning to going that way. I will call tomorrow to ask his nurses to see if there is any way I could have one of his other "male" patients call me to talk about his sling!

Brodie, No, I have not considered waiting for the stem cell thing. The Medical community moves way too slow approving something like this. Also, My sphincter is working and closing. My problem is basicly due to the lack of support for the urethera and bladder. I do not think any work on the sphincter itself would give me any improvement without additional support.
Will keep you all informed,

KW
    43
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second
    opinion Doctor at OU Medical Center Bio-Feedback training,   
    Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day).
    Feb. 4th, 2008 - Appointment with Original Dr. to discuss options and recomendation for
    surgical fix for incontinance.
 
     


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 2/5/2008 10:50 AM (GMT -6)   

Kw,

Thank you, thank you, thank you... for willingly sharing this information.  As I mentioned to you, you are not alone in this "boat".  You have been tops in sharing your journey, the good, the bad, and the ugly.  I feel as if it will all be a big help to me, and probably to others too.  It seems I am good at getting doctors who just share bits and pieces of info.  So thanks,

Gene


Age: 64
07/05 - Biopsy: Suspicious looking cells. 
12/27/06 - Biopsy
1/24/07 - Dignosed cancer: Gleason Grade: 3+3=6
02-14-07 Radical Open Nerve-sparing surgery
Pathology Stage of cancer: T2c
4-18-07: First Post-Op psa = 0.011
05/31/07: Cystoscope reveals "Stricture"
06/12/07: Procedure to remove stone & dilate uretha at stricture: Successful procedure..
8/31/07: Back to new urologist for regular check up & received 2nd post-op Psa.  It was 0.05
8/31/07:  First Bio Feedback session.
9/19/07: Finished 4 Bio Feedback sessions.  No imporovement with leaking. 
9/26/07 - Started injections 
10/27-07 - Began using clamp at uro's encouragement.
02/01/08 - Still leaking & cannot contain urine in bladder except when sitting or laying down.  Can hold it for abut one minute before drip, drip, drip.
02/28/08 - See Uro. Will discuss artificial sphincter 
 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 2/6/2008 9:55 PM (GMT -6)   
    Decision Made!
 
    I have decided to have the AdVance Sling installed on Feb. 22nd, 2008.  I would like to thank all of you that have supported me through all of this.  I will let you all know how things go.
 
    KW
    43
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second
    opinion Doctor at OU Medical Center Bio-Feedback training,   
    Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day).
    Feb. 4th, 2008 - Appointment with Original Dr. to discuss options and recomendation for
    surgical fix for incontinance.
 
     


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 2/6/2008 10:04 PM (GMT -6)   
KW,

Good for you! No one could ever say you haven't tried everything there is to try first.

Swim
 


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 2/6/2008 10:20 PM (GMT -6)   
Hey KW,

That's great news. You have been through the mill and its time to fix the problem. Good luck...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
 
"Patience is essential, attitude is everything."
 

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