18 months post LARP

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sparky5280
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 8/31/2010 4:24 PM (GMT -6)   

And the story continues.  After my robotic surgery (5/2009), I am still cancer free.  I am still having flow issues though.  After 4 trips to the hospital for cystoscopies, and an even dozen trips to 3 different urologists to get dilated (darn that hurts!), my scar tissue is back.  I am now scheduled for another trip to the hospital (University of Colorado)sometime in late September or early October. The plan is to do an open surgery to remove the scar tissue completely, removing the 1cm or so of the urethra, and then to reattach it to the bladder neck.  This procedure is more intensive than the prostatectomy, and will require me to be off work for 4 to 6 weeks.

According to my specialist, they do this only 2 times a year, because normally the scar tissue can be broken up or cut away from inside of the urethra.  Not in my case though.  darn the luck.  I firmly believe the problems started with the use of the “wet clips” that migrated into the urethra, causing some blockage that then had to be removed, causing scar tissue.  The clips are used for the nerves, so that the nerves are “spared” during the prostatectomy. The doc say there is a chance I will lose some nerves, and there is also the chance I may be incontinent after this surgery (I have been fairly dry since the robotic surgery, using normally 1 pad a day).

I feel confident that this surgery will take care of the scar tissue.  I am hopeful for functional nerves after surgery, as well as a functional sphincter.  Even if these two items are not functional afterwards, not having to get dilated every 4 to 6 weeks will be a good trade off, as these two things can be corrected.

Because of these additional problems, I have gotten pretty depressed.  I think that this depression has created some problems at my work, and probably at home also.  I hope that once I get back on feet, I will loose the depression and start enjoying my work and home life once again.  I do have great support from my wife and family, and fair support from co workers.

Wish me luck, and I will try to post back when I can.

Rick Miell

Age at DX: 55

2002 PSA = 2.56

2007 PSA = 4.75

1/15/2009 PSA = 7.51

 Biopsy 2/10/09

Gleason 3+4=7(right): 3+3=6(left)

Bone Scan negative

Laparoscopic robotic da Vinci

Prostatectomy, with nerve sparing:    5/13/09

 

Path Report:

Total Gleason Score: 6(left); 7(right)

PTNM Stage – pT2c Nx Mx

Prostate weighs 40 grams

 

6/25/09 : 1st post-surgery PSA <0.01

9/14/09 : PSA <0.1

12/16/09: PSA <0.01

5/2010 : PSA <0.01

8/2010: PSA <0.01

   


Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 8/31/2010 4:48 PM (GMT -6)   
Hey, Welcome to the board!

Was your original surgery performed at the University Of Colorado Medical Center? Have they been your medical providers from the beginning?
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 8/31/2010 5:11 PM (GMT -6)   
Welcome to Healingwell.

Sounds like you have a game plan and I hope everything works out for you. It's easy to get depressed going through all the subsequent procedures, but hopefully they can get you back on track.

David (Purgatory) will probably be willing to share his experiences with you, once he reads your post. He has been dealing with blockage due to scar tissue as well, although much more complicated situation than yours.

Best of luck.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009     .06
                   6 month Apr 2009     .06
                   9 month Jul  2009     .08
                 12 month Oct 2009     .09 
                 18 month April 2010   .19

SubicSquid
Regular Member


Date Joined Oct 2009
Total Posts : 252
   Posted 8/31/2010 5:25 PM (GMT -6)   
I hope everything works out for you. As a victim of scar tissue problems and the resulting dilations and surgery myself, I feel for you and hope that I have seen the end of this problem.  Hang in there and hopefully this surgery will do the trick.  Squid.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/31/2010 5:59 PM (GMT -6)   
Rick,

I feel for you brother, as your situation is similar to mine. Due to strictures, I am on my 21st catheter. The type of operation you are describing was suggested to me, by a leading uro reconstructive surgeon at Duke, but I have been turned down by the amount of radiation damage I have in my bladder and bladder neck. Also, I was told that with that op, I would have been 100% perm. incontient as the result of having it. That didn't appeal to me, as I was 100% dry prior to Salvage Radiation and suffered no ED.

I have had 6 corrective surgeries for the scarring in the bladder neck, some with laser, some without, none of them last. I was just opened up again by surgery on July 2nd, and when my surgeon checked two weeks ago, he was estimating I was already at least 50% closed up again in that short of time.

I am scheduled to have the ileal conduit urinary diversion surgery in a little over 3 weeks, as they feel my bladder and bladder neck are too damaged to repair. It will mean that I will have a stoma and have to pee into a bag for the rest of my life. Sounds bad, but should beat being on endless catheters and all the pain and suffering that have gone with them.

I wish you the best too, I had two emergency dialations done along the way, no way to describe the raw and utter pain to someone without the same experience.

If you have any questions, want to compare notes, etc, please feel free to contact me. I can honestly say, I understand where you are at.

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 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

sparky5280
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 9/1/2010 10:40 AM (GMT -6)   
Thanks for the replies and support.
 
To Fairwind: My orginal surgery was done at Sky Ridge medical Center in Lone Tree (south Denver), and was with a different urologist, who up till 6/10 did all my follow ups.  He is the one who referred me to Dr. Flynn at UC.  I also saw my local urologist (Dr. Louie, Pueblo) after the emergency trip to the local hospital (La Junta).  He dilated me a couple of times, once will Parkview hospital (Pueblo).  Dr Flynn is the only one who performs this type of reconstruction in Colorado.
 
To SubicSquid, & LV-TX: Thanks for the encouragments.
 
To Purgatory: Good luck in your upcoming surgery.  Hopefully you get everything you wish for out of this.  Keep in touch and let us know how you are doing.
 
Thanks again everyone.
 
Rick
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