Off to see my URO/Surgeon & Followup Report

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/21/2010 10:48 AM (GMT -6)   
Time to see my uro/surgeon again, we meet every 4 weeks.  Normally, he would change out the SP catheter tube at this time, but I am too friggin sore down there.  Had a rough weekend in "painville".  Hurt equally if I rested or if I tried to do something.  By some miracle, had a short window of not hurting too bad yesterday evening, when my kids took me out for father's day dinner.  I was thankful to be able to do that without a problem.
 
Got a long list in front of me.  He's wanting to do a day surgery, perhaps as early as next week, so that he can re-inspect me properly, hadn't been done since first of March.  We are trying to decide if its time to take out the SP cath.  I still have my doubts its a good idea.  When a spasms forces urine through the bladder neck and eventually my penis, the pain is intense.  The more spasms I have during the day, the more the hurt builds up, until I am finally forced to take some prescription pain meds.  Even then, its not always enough to off-set the pain.  So I can't imagine relying on my bladder neck/penis to urinate on its own.  But I do think the doctor needs to see what's going on up there visually.
 
Probably would mean coming home from the hospital with 2 caths in place for the 3rd time.  A thought that frightens me.
 
I also have several ideals and suggestions that I picked up from a few of your guys that I am going to mention to him as well.  He's open minded enough to listen at least.  I am suppose to start my new job two  weeks from today, I still don't see how it will be physically possible, no matter how much my mind and wallet want it to happen.
 
There's no point in a "tube" change today, with the pain I currently have, if he's only going to remove it during the day surgery procedure if that still happens.  It would hurt to much for me to bear with it today unless I was put under.
 
I will post an update here when I get back a little later this afternoon.
 
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

Post Edited (Purgatory) : 6/21/2010 1:26:55 PM (GMT-6)


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 6/21/2010 10:57 AM (GMT -6)   
Good luck.

Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


SubicSquid
Regular Member


Date Joined Oct 2009
Total Posts : 252
   Posted 6/21/2010 11:31 AM (GMT -6)   
Good luck. Hope something good comes your way for a change. Having gone thru the bladder spasm problem for a while, I feel for you. Can't imagine having the problem for such a long time. Squid.
*Age 63, PSA July 2009 5.66
*Diagnosed July 2009, Biopsy: 2 of 12 cores positive, Gleason 3 + 5 = 8
*MRI and Bone Scan Negative.
*open Surgery October 22, 2009
*Prostate, both nerve bundles, seminal vessels, and lymph nodes removed during surgery.
*Post surgery Biopsy, Gleason 4 + 3; 2 positive margins
*Still slightly incontinant after 3 months - 1 pad per day (light). Dry at night. 1-2 trips to toilet.
*ED - Yes (will start Levitra possibly in January)
*30 day PSA (ultra-sensitive) .07
*90 day PSA (standard) <0.15
*01/10 - bladder neck stricture. opened during cysto exam. Cath #2 in for 5 days.
*03/01 - bladder neck stricture. Dilated during cysto exam. Cath #3 in place.
*03/11 - Bladder neck surgery. Cath #4 in place.
*03/15 - Cath #4 out. Great urine stream. Unfortunately, incontinence back to post surgery level.
*04/14 - Six month PSA - .21.
*05/15 - Incontinence basically under control.  99% dry.  Wear pad daily at work "just in case".
*06/10 - Started IGRT.   39 treatments scheduled.
 


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6945
   Posted 6/21/2010 11:41 AM (GMT -6)   
I can say the the bladder spasms were among my least favorite things in life.
Hang in there.

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 6/21/2010 11:41 AM (GMT -6)   
I'll check back hoping for some good news!
Dave, Durango CO
Diagnosed 12-09 age 55
07-06 PSA 2.5
01-08 PSA 5.5 (PCP did not tell me of increase or schedule follow-up!!!!)
09-09 PSA 6.5 Sent for consult with Urologist
11-09 Consult, scheduled for biopsy, found out about PSA from '08 (yes I was pissed)
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5, ain't much but I'll take it.
01-10 Bone Scan, "appears negative"
03-01-10 RRP in Durango CO by Dr Sejal Quale and Shandra Wilson, no naked eye evidence of spread, Vesicles and lymph nodes taken for microscopic exam.

03-16-10 Removal of cath' and pathology results of samples.
Multifocal carcinoma with areas of Gleason pattern 3, 4 and 5, Overall Gleason grade 4+4 with tertiary 5, Bilateral involving 21% of left lobe, 3% of right lobe, Invasion of left Seminal vesicle, Tumor focally present at left resection margin, 9 lymph nodes removed all negative, Tumor staging pT3b NO MX

04-23-10 PSA <0.04
05-03-10 1 week without pads
06-07-10 PSA <0.04


Jakester
Regular Member


Date Joined Aug 2009
Total Posts : 285
   Posted 6/21/2010 1:11 PM (GMT -6)   
David, one of these visits will be the one when all this is behind you.... we're pulling for you!

Our best,
Jake
Diagnosed 8/2008 Pre-op psa 4.2, Age 60 at dx
7 of 12 biopsies positive 3+3
DaVinci LRP 11/08
Post Op pathology clear margins, confined to prostate, absent extraprostatic extension, vascular or perineural. Gleason 3+4=7, 5-10% of 4 and location in right mid-gland.
3 month psa .1 2/09, 6 month .1 5/09, 9 month .2 8/09
broke ankle bones 6/09
9/21/09 Bone scan clear, psa still .2
11/12/09 chest xray was clear, psa however up to .3,
01/05/10 psa still .3, radiation setup done with tats, 01/19/10 started 39 sessions 70.2gy, psa at 6th week salvage IMRT up to .4
Post SRT psa at 10 weeks (5/31/2010) down to .2


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/21/2010 1:12 PM (GMT -6)   
UPDATED REPORT FROM DOCTOR'S VISIT MONDAY AFTERNOON:

Spent 30 minutes with the doctor, as usual, no rush on his part.

Decided I was too sore to change out the catheter tube (SP), he felt around and agreed. Been in 4 weeks, hes ok letting it go 4-7 weeks out if needed.

Put me on a new med for spasms, Enablex. Take it 1x in the morning, gave me tons of samples and a scropt, wants me to try for a few days to see if it works better than ditropan.

He is going to arrange day surgery this week or for next week depending on hopsital schedule. Wants to look with scope from below through the penis, and correct any new scarring, and wants to scope from the SP site, to see how much inflamation he's sees this time, as compared to his last look in March. Will mean coming out with both a SP cath and a foley at the same time. Which one stays after a few days depends on what he sees.

He has consulted with Dr. George Webster, a reknowned urological surgeon from Duke about my case. He can do advanced level surgeries. Unfortunately, he feels that there is too much radiation damage to my bladder neck/urethra area. He said I might as well had radiation as a primary treatment based on the 72 gys of salvage I had, because the damage is just about as exstenive. The logic is the same, if you have radiation first, then surgery as a salvage is usually a risk and bad idea. This Dr. Webster seemed to agree. Even without the radiation damage, the op considered is high risk to begin with, and was told that I would be certain of being 100% incontinent the rest of my life. My uro said he can arrange a personal consulation for me with Dr. Webster, but he said it wouldn't change the opinion or the outcome.

Our current thinking, is if this 6th corrective surgery bears no positive fruit by the end of August, will strongly consider Plan "B" surgery, which is a urinary by-pass op. In simplest terms, the bladder neck and urethra would be by-passed, and they would make a new tube out of a piece of my intestine (I believe), and exit it to the outside of my body. Don't have the name of the op handy. It would be no more catheters, and no more worries about bladder neck blockages. It would be a 4-5 hour surgery, and he said to expect 5 days min. in the hospital. So this would be no easy matter in itself.

He is still hoping for a natural solution, but realizes that since radiation did so much damage, it may not have that happy natural ending we both hoped would be there.

I did ask him about hyperbaric treatments (think I spelled correctly). He is not opposed to them, but in my case, he feels that the damage is too deep in the body for it to be effective, and that it would be an expensive waste of money. He does uses it in rare cases with other urinary matters, but didnt think it would be good for what ails me.

When I asked outright, he said that I was not medically fit to be working at all, let alone full time. So that still leaves me between a rock and a hard place about starting this new job in 2 weeks. But that is another matter.

Back home, resting, thinking, on meds. Over did things this morning with some painting prep work in my living room, and foolishly tried to mow some outside while waiting for my son to come over and mow. Big mistake, big pain. Just sick of feeling helpless and in pain, told the dr that too, that I was in a purgatory just circling around and around.

I went to that Yanow? site for the first time, and read some good things about this Dr. George Webster at Duke, and a case with a guy with a similar problem to mine.

As soon as they make the arrangements, will let you all know about the next hospital visit. Thrilled.

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


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 6/21/2010 1:29 PM (GMT -6)   
The by-pass sounds interesting. Big surgery with big results.
Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/21/2010 1:32 PM (GMT -6)   
Steve, I am not opposed to the idea of it. Just the thought of going through another major surgery with a whole other recovery schedue sounds spooky at this point. Not going to me much left of me. But the thought of being on an indwelling catheter the rest of my life requiring painful tube replacements every 4-7 weeks doesnt sound good either. And all of this assumes that the salvage radiation ultimately keeps the PC at bay, with one "zero", he said the jury is still out, that we need another 2-3 good readings before relaxing a little. Least he's honest on that point.

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


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 6/21/2010 1:43 PM (GMT -6)   
Sorry to hear the latest from you David. I know your journey is highly unique and unusual for our disease. Just the same it has been a reminder of just how difficult various types of treatments for cancer can be and that these treatments must never be taken lightly or for granted. I know that this has given you a keen sense of empathy for others and I hope you feel that returned to you somehow and in some way.

Keep the sails high and the rudder steady.

Take care my friend
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/21/2010 1:55 PM (GMT -6)   
Thank you much, Les. Each of our journey's is unique here at HW. My uro said he has only had one other patient in all his years, with a similar ongoing problem like mine, but mine I believe is more severe. While it may be rare, its still in there with the risk of having PC surgeries and PC related radiation treatments. Just the cards I pulled from the deck. Really helps to have have caring and understanding doctor. Been seeing him since 2007, and each time, he acts like I am his only patient. That helps when dealing with something like this.

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


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 6/21/2010 3:13 PM (GMT -6)   
avid,
Sorry to hear about the pain and all the problems you are having. As far as plan B surgery, would you be continent?or would you have a bag permanently?
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 5 months
2 months PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 6/21/2010 3:16 PM (GMT -6)   
David, I can't say anything that I haven't said to you before -- just double it, at least.

I post simply to let you know I've got you on my prayer list.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02
PSA on April 9 less than 0.02 
 
  


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/21/2010 4:01 PM (GMT -6)   
ED - some kind of bag, I believe.


Sheldon, thanks, as usual
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


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 6/21/2010 4:08 PM (GMT -6)   
David...is the bypass like this website?

http://www.answers.com/topic/ileal-conduit-surgery
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


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 6/21/2010 4:38 PM (GMT -6)   
I hope it works out. It seems like major surgery given the time. Hopefully if you have to go the surgery route, it will work and you will be free of all the pain you have been enduring.
 
Age 48 at diagnosis
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
22 month  PSA <.04
continent at 10 weeks (no pads!)
ED is still an issue


Sharp18
Regular Member


Date Joined Mar 2010
Total Posts : 78
   Posted 6/21/2010 5:15 PM (GMT -6)   
David,

I wish you good luck!

Regards,
Sharp

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 6/21/2010 5:41 PM (GMT -6)   
David, all I can say is "ouch." At the children's charity I work for, we have had children who had similar bypass surgery for Wilm's tumors and they did fine. Of course, they didn't have the preexisting damage from previous treatments to complicate the situation.

It does sound like your uro is approaching the situation from as many angles as he can, and is not hesitating to consult with leading specialists. I do hope that they can come up with something to get you off the darn catheters.

Peace be with you.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/21/2010 7:25 PM (GMT -6)   
Thank you, Rob and Sharp.

Sephie, thanks too, my uro is very cautious and wants to make sure, that if we have to go forward with a more serious surgical approach, it will be one that gives me the best chance of returning to some kind of normal, pain free life. On the surface, the bypass surgery would do that. The reconstructive type surgery as performed by Duke, was not intended for someone damaged by radiation, so that is why is not a good option, especially knowing that it would leave me incontinent, where that hasn't been an issue for me. My doctor is very concious of the daily pain I suffer, and agrees, that we need to come up with something that will eliminate that long term.

Now I am trying to think what I want to tell my future boss, we are suppose to have a lunch meeting later this week. My dr. feels that I should tell him what is going on, as he says that I am not in any kind of medical condition to be working full time. That sucks when I finally have a real offer in hand.

Sometimes life never gets any easier. That's why I am a one day at the time kind of person.

Give my best to John. How's he liking that 3 way tie between the Yankees, the Rays, and the Red Soxs. Of course we know the Red Sox will win the world series this year.
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


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7201
   Posted 6/21/2010 10:13 PM (GMT -6)   

David:

 

What a bummer about the job situation. You obviously have to level with your boss. Maybe they can delay your starting date?

 

Mel


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.

Second post-op PSA on 6/21/10--still awaiting results


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 6/22/2010 12:08 AM (GMT -6)   
David
I'm sorry about the job aspect being added to all your other difficulties.

One of my wife's uncles had the bypass thing a couple of years ago after bladder cancer. He is on a bag. Reports say he's okay, but I'm sure he hates it. And in relation to working he was confronted by it after he had retired.

I think you and your uro are going to have to judge this in terms of your whole body and mind and future and not just in relation to those painful few cubic inches down below. And drawing a line in the sand for August sounds like the sensible decision after all this time. (At least lines in sand can be scuffed away with your foot and drawn somewhere else if needed.)

All the best
Alf
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking of urine
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc. but...
Nov 17th 2009 PSA = 0.1
Can still get erections okay, and almost no leaking of urine, but since December 2009 I don't have orgasms, instead I just have intense pain in place where prostate used to be.
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)
June 11th 2010 finished RT - main side effect tiredness, but also the occasional small leak


pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 437
   Posted 6/22/2010 12:42 AM (GMT -6)   
David,

You and your wife have had such a tremendously difficult path to travel that many times I do not feel I can come up with the proper or adequate words to express my feelings and support for you. All I can say is that you have been a true blessing of inspiration, support and words of wisdom to many of us on the board. I can also tell you that my prayers are with you.

God Bless,

pasayten
After 3-4 years of annual PSA 4-6, biopsy recommended
59 y/o
3/13/2007 - 12 point biopsy - Left 0/6  Right 1/6 Gleason 3+3 T1c
4/24/2007 - DaVinci performed at Virginia Mason hospital in Seattle
5/2/2007 - Catheter Out! Final pathology of Gleason 6  T2c Nx Mx, approx 20% of prostate involved, positive margin, but only at 2 focal points.  
6/28/2007 9 weeks incontinance... Overnite, went from 4-6 soaked pads a day from prev 8 weeks to 2 barely wet pads a day.
7/12/2007 11 weeks post-op  Minimal leakage...  one small pad a day
7/18/2007 First Post-Op PSA...  0.01 !!! 
9/10/2007 Pad free and ED at 75% with 100mg Viagra generic
6/26/2008 2nd Post-OP PSA at 14 months...  0.02 
12/2/2008 3rd Post-OP PSA at 20 months...   0.03
10/30/2009 4th Post-OP PSA at 31 months...   0.13 (moved and diff lab)
11/3/2009 Retest at my original lab...  0.11  (followup with Doc sched 11/10)
11/10/2009 Discussion indicated biochemical reccurrence and need for salvage radiation treatment. 
1/21/2010 Another PSA test at 34 months...  0.14
1/26/2010 IMRT Salvage Radiation Treatment started
                  32 sessions for 64 gys total.
3/12/2010 Finished 32 sessions...  No side effects to date except a little
tiredness.  Slight changes in bowel movements the last week...  
4/8/2010  Some rectal prostitis, but no change in urgency.  No urinary effects at all.  Now just waiting for the upcoming PSA test in June.
6/7/2010 First 3 month PSA result after SRT = 0.02   WAHOO!  as good as could ever be expected at the 3 month mark!  Thank You Jesus!
 


Aimzee
Veteran Member


Date Joined May 2010
Total Posts : 1404
   Posted 6/22/2010 3:30 AM (GMT -6)   

David, I am so sorry all methods thus far have not been succesful.  You have endured so much pain.  I hope it will end soon, and new doors will be opened for you!

Aimzee


Husband Ron, age 63
Had Progesterone shots for 6 months.  January PSA was .05. 
4/1/10 PSA 5.5  Prostate size = 50 cc.
On Cipro (antibiotic) for 16 days
Bone Scan/CT Negative
Biopsy 4/20/10  12 samples... Adenocarcinoma:  3 positive on right side,
one core left base (5% ` 0.5 mm) -  two cores of left lateral mid
(20% ~ 2mm, 10%, 10% ~ 1mm) - No Perineural Invasion
Gleason 6 (3+3)
Surgery to be scheduled: da Vinci Prostatectomy
 
(I do the posting for both of us.)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 6/22/2010 5:23 AM (GMT -6)   
David, the job issue is going to be a tough nut to crack...I know you are anxious to "get back in the saddle" so to speak but I also know that you will look at the situation from a pragmatic point of view and will do what is best for you. With the clock ticking towards July 5, it would seem that commuting and working full-time is not in the cards for you right now. I would hate to see you commit to something and then not be able to meet that commitment - I know that this would upset you. Is there a chance you could discuss your situation with your new boss and see if it's possible to postpone your start date, say, for 1 month?

I do hope things work out for you...you are way overdue for a break.

Will give John your best ... as to who's winning the Series this year - we'll just have to see about that!

Hugs and kisses to you and Peg.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/22/2010 8:08 AM (GMT -6)   
mel - that's the advice my dr and even my former boss is telling me, that when i meet with future boss thursday, go ahead and spill the beans to some degree, too much to hide at this point, as i had hoped to had this behind me and not an issue, but since it is, go for it

alf - a bag is one possibility, but it would allow me to do almost anything again with my life, like taking a bath, swim, horseback ride, bicycle ride, hot tubs, etc, all things I can not do with a catheter, and it would greatly cut down risk of bladder cancer and future UTI's

pasa - thank you, brother

thank you, aimzee

sephie, the job is not the end of the world to me if it cant work out. think i will be laying the cards on the table to the future boss when we meet thursday, at this point i have nothing to lose. if he has no compassion or care, then so be it. i could work my pay at hourly rate and start part time until i am well enough to be full time and back on salary, that way, he wont be paying me for missing work. this is a newly created position, so i am not replacing someone with a set schedule. now, if i end up having the by pass surgery later, it is major, and the recovery will be slow, so i dont know how that will play into it. if i could just get the VA to hurry up my agent orange disability claim, then this job or any other job would become an option, not a need. right now, all the financial burden is on my poor wife. we have done much the last 2 years to eliminate debt eveywhere. got one year left on my car, and without that payment in the way, we could actually get by on one salary. but trust me, i just want to be well and back in my trade and earning real money again.
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

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