Lastest Testing of being off the Cath

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 3/22/2010 3:07 PM (GMT -6)   
After resting my bladder neck for a full week, as my dr. advised, I did as instructed and turned off the cath and went "natural", didn't make it even a full hour.  Too much pain, and pressure, hurt terrible.  So, quit, as dr. advised this time, and back on the cath 100%.
 
Sitting here, aching pretty bad down there, despite being on a pain tab.  Very very disapointed, after having went through 2 surgical corrections 6 weeks apart, and 2 periods of recovery where I was wearing 2 catheters at the same time  (no way to really explain how that feels unless you experience it, and I trust no one ever does).
 
I see my uro/surgeon next Monday, won't be any more testing in between.  He is wanting to look up me again with the scope, under heavy sedation, but if hurt as bad as I do right now, that's not going to happen.  I believe that most of the issue right now, is still post-radiation swelling and damage to the area.  One version of what will happen is simply nothing.  Swap out this SP cath for sanitary reason, of course, and not poke around or doing anything invasive down there for another 3-6 months to see if I can get some natural healing.
 
David in SC
 
April 1 will make six months on the SP, never would have dreamed of that.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
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


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 3/22/2010 3:12 PM (GMT -6)   
Hi David,

Not the outcome at this point I'd been hoping for, or expecting, for you.

I'm the last person to consult when it comes to medical matters, prostate or otherwise, but I must say your idea of a several month sabbatical from further 'treatments' that might inflame the area seems like a good one to me.

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"
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  
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
Feel free to email me at:  sheldonprostate@yahoo.com    


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 3/22/2010 3:13 PM (GMT -6)   
David,

I would agree that freeing Willie of the cath, and letting it rest would certainly sound logical. The only question is, will the scar tissue continue to grow, and make any future repair attempts that much more difficult ?

I realize that is and unanswerable question, just a musing on my part.

Sorry about the failure, good luck on the big decisions that need to be made. Maybe a motorcyle would help things ! GFMPH
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 3/22/2010 3:43 PM (GMT -6)   
goodlife, I am not on a Willie cath, the SP exits just below my belly button, to the left. Once it exits, looks and acts like any other catheter.
I had a foley (penis) type for 3 weeks after the one surgery, and for 4 days after the most recent. It is a little confusing story to follow with this many events and changes.

sheldon, thank you, my good friend to the north. and yes, by allowing the "rest" time for healing, you are right on target, the bladder neck is guaranteed to seal shut again. But hopefully, the next time it has to be opened, the damage from the radiation will be past tense, and perhaps we can get somewhere.

the other more advanced surgical fixes would be on hold, regardless, right now, due to all the radiation swelling. but those ideas are not off the table. as long as there is so much swelling and pain going on, not a whole lot that can be done without complicating the situation.

not the answer I wanted either, but trying to make do with what the reality says it is.
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


SubicSquid
Regular Member


Date Joined Oct 2009
Total Posts : 252
   Posted 3/22/2010 4:37 PM (GMT -6)   
David, sorry it hasn't gotten any better. Letting the radiation damage heal might do the trick. Hope so. So far so good on my recent surgery. Still a good stream, but incontinence is not getting better. I'll just wait it out and hope for the best. Guess you are doing the same. 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.
*IMRT/IGRT delayed until April pending 180 day PSA result
*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.


deer hunter
Regular Member


Date Joined Jan 2010
Total Posts : 246
   Posted 3/22/2010 4:52 PM (GMT -6)   
sorry , it didn't go as planned but hope the pain will ease up some !!!!!!!!!!!!!!!!
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. psa the last of 7/09was .55 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 3/10 psa.05


t-dog
Regular Member


Date Joined Dec 2009
Total Posts : 154
   Posted 3/22/2010 5:07 PM (GMT -6)   
Hey David, was hoping for better for you this time. I was wondering when you talk of the radiation damage was this due to too much of a dose or bad aiming or just a bad reaction of your body? I have learned alot from your postings and was wondering about this. Tim
Dx at 50 in 12/09 Merry Christmas its cancer....
3 of 12 positive, right side only, psa at dx 2.6 free%14
gleason 3+3=6
routine physical, no symptoms
Da Vinci performed Feb 2k10 by Dr Marc Milsten [hes got mad skills]
99% continent from cath out, mr happy fully functional at 2 weeks out!
path showed same gleeson with no other blips other than one slight margin, organ confined 20% right, 5%left, 34grams
 
 


Jakester
Regular Member


Date Joined Aug 2009
Total Posts : 284
   Posted 3/22/2010 5:53 PM (GMT -6)   
David, hate to hear of the continued pain and frustration... a break from it might do a lot for you both mentally and reduce the inflammation. You've talked affectionately about your family and their activities so you have a lot of good stuff to divert your attention for a bit and the Spring weather just might co-operate too.

Our best to you and all the gang,
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


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 3/22/2010 5:57 PM (GMT -6)   
David, I can feel your disappointment and your pain. My heart goes out to you. It just doesn't seam fair that you have to go thru all of this. All I can do is hope and wish that with additional treatment your situation will improve in time. I know you are a fighter and will not give up.
I'm just hoping that things will improve for you soon.
 
Magaboo

Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
Open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 sessions - 66 Grays) on the 19th Dec., 08.
PSA in Jan., 09=0.05; July 09=<0.04; JAN 10=<0.04


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4088
   Posted 3/22/2010 5:58 PM (GMT -6)   
Oh David: Im so sorry that you are in pain again. I agree with you. It is just time to lest you body heal from the RT. Looks like nothing is going to help that situation untill you have clear healed tissue in the bladder neck. Don't let this tear you down buddy. Know that so many of us are waking with you in the journey and praying for you.

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

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

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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 3/22/2010 7:05 PM (GMT -6)   
subic - sorry about the leaking, but glad you are flowing fine, not sure which is worse. good luck on your end

deerhunter - thanks buddy

t-dog - kind of hard to say, but i believe its all 3 things, the dose might have been too strong to radiate in such a deep, narrow area (my uro's speculation), i already had a long history of bad reaction to radiation prior to this. From more than 10 years ago, my rad guy told me that people that tend to get sunburned real easy and had low tolerance to heat in general, often had problems with radiation, and that was me all over, so perhaps there is some rhyme to this.

jake and mag, thanks guys - have no intention on giving up, just have to keep changing the game plan to fit my current reality


jeff, thanks, my dear cajun brother, its not some life's dream to be stuck on endless catheters, trust me, but in the bigger picture of things, there are many people dealing with much worse health matters than being on a catheter. Obviously, if I were free of it, wouldn't be having the spasms, and wouldn't be having all the other pains related to long term catheter use. I just hope this doesnt turn into an "forever thing".

david in sc
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
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


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2215
   Posted 3/22/2010 7:20 PM (GMT -6)   
David,
Hoping for the best for you as you deserve some healing by now. Keep hoping it's right around the corner but obviously the right corner has not been turned yet. Your attitiude is positive, much better than mine would likely be if I were in your situation. Enjoy the spring and the races but Jimmy J. is a hard man to beat.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10, Completed 39 tx at 72 gys on 3/12/10
Great family and friends
Michael


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2840
   Posted 3/22/2010 7:25 PM (GMT -6)   
david -
I think you do deserve a well needed rest from the testing and procedures and as you put it - let your body heal...
-maybe that motorcycle would be a good thing for the doctor to prescribe for GFMPH - but have your wife as the driver and you sitting comfy in a sidecar? That is what Steve plans if I ever talk about getting a motorcyle.

-best motorcyle t-shirt I've seen was (printed on the back) - "If you can read this, the b**ch fell off"
(no disrespect intended to anyone)

vroom vroom hugs
BRONSON
.................
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
............


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 3/22/2010 7:26 PM (GMT -6)   
Hi David,

Just curious.....why not sign up for that radiation rehab program?

Steve
Age-66
PSA-6.5
8/09-14 core biopsy
4/14 cores pos. GS-(3+4)7
10/13/09-robotic RRP Moffitt Cancer Center Tampa
Post-surg path-two nerves spared, capsule, margins, seminal vesicles neg.
GS-(3+4)7, tumor <5% in 83gm sample.
1/5/10-first PSA-<0.1
IC and ED.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 3/22/2010 7:31 PM (GMT -6)   
Steve, I am still on stand by for that, I wasn't expecting to be on a catheter still here nearly at the end of March, the program and exercises were going to be very limited for me while I still have it. Certainly plan to as soon as I am able.  And it is a cancer rehab program, not specifially radiation related, to build strength and to help combat fatigue.


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


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 3/22/2010 8:03 PM (GMT -6)   
Hello David,
I have just read the update and feel your disapointment. Obviously with the amount of pain in the area you must still be very inflammed and I think you wise not to force the issue. No good can come of aggravating the inflammed tissue, far better to let it settle over a longer period of time (frustrating as that is) with the hope that time and healing will make the ultimate recovery easier and better.Hopefully the scope examination if bearable will give a clearer picture. We are all pulling for you mate.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01
PSA August 09 (2 year mark), <0.01
PSA December 09 <0.01

My Journey: www.yananow.net/Mentors/BillM2.htm


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 3/22/2010 8:10 PM (GMT -6)   
Thanks much ,Billy Mac. Not saying that's a final decision, will wet until I meet with the dr next Monday.

Michael, thanks too.
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


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 3/22/2010 9:44 PM (GMT -6)   
Hi David,

I like your plan for giving healing from radiation therapy a chance. I sincerely hope that works for you and hope you're resting more comfortably.

All the best,

Barry
Surgery: Da Vinci; July 31, 2007; 54 on surgery day;
Pathology: PSA: 4.3; Gleason: 3+3=6; T2a; Confined to Prostate;
Post RP PSAs: 09/07 <0.04; 12/07 <0.04; 03/08 <0.04;
06/08 <0.04; 12/08 <0.04; 06/09 =0.06; 09/09 <0.04;
Latest PSA 12/09 =0.05


Squirm
Veteran Member


Date Joined Sep 2008
Total Posts : 744
   Posted 3/22/2010 9:45 PM (GMT -6)   
Hi David,
Has the radiation oncologist said anything about your further complications? I was under the impression that she was going to make sure there wouldn't be any collateral damage to the bladder neck area during the treatment.

Post Edited (Squirm) : 3/22/2010 9:48:34 PM (GMT-6)


Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 3/25/2010 3:03 PM (GMT -6)   
David,

I have been reading your updates and while much worse than mine, I have experienced the two catheters at one time. Have you had any discussion of an AUS implant with your doctor? I know your problem is the closing of the bladder neck. My doctor saw the potential of stricture, so we decided for him to cut the area of the bladder neck to prevent the closing. It did leave me totally incontinent for 5 months while I waited for the AUS implant, but now that it is done, it was worth it. He also told me of an alternative to the suprapubic catheter. That was building a channel from your navel into the bladder and inserting sterile straws through the channel into the bladder to relieve yourself. This was a possible option before we decided to cut the stricture and go the AUS implant route.

While I had a penile catheter from March to October 2008, I only had it changed 5 times and 3 of those times I was under anesthesia. I had the suprapubic catheter from July to December 2008 and only had it changed 3 times. I can't imagine having all catheter changes that you have had!!!

I am hoping for better days for you.

Wigs
Diagnosed @ age 47 - September 1997
PSA 5 / Gleason 3+3
Seed Implant - January 1998 @ Trident Hospital, SC
PSA 2.4 - July 2007
PSA 2.7 - July 2008
PSA 3.0 - November 2008
Diagnosed @ age 57 - December 2007
Gleason 4+3
Salvage Prostatectomy & Colostomy - March 2008 @ MSKCC, NY
Urethral-Rectal Fistula Repair - August 2008 @   Cleveland Clinic, OH
PSA < .03 - Aug 2008
Colostomy Reversal - January 2009 @ Cleveland Clinic
PSA < .03 - Jan 2009
AUS implant - May 2009 @ Cleveland Clinic
PSA < .03 - May 2009
AUS activated - July 2009
PSA < .03 - July 2009
Penile Implant - December 2009 @ Cleveland Clinic
PSA < .03 - December 2009
Penile Implant activated - February 2010
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 3/25/2010 5:04 PM (GMT -6)   
Squirm, that is what she said, and probably why at first, when I was reporting pain during and after daily rad treatments. After it was all over, and only after my uro/surgeon intervened for me, did they change stories and admit that what I was reporting was directly related to the radiation itself. Common, no, but more common than some think.

Wigs, appreciate your post. You offered some interesting ideas and alternatives. Will make a note of them to add to my note when I see my uro/surgeon on Monday. Sorry you have been through what you have too, its no fun.

My dr. believes in changing out the SP caths in the 4-6 week windows, as it cuts down UTI's from developing. My wife as a nurse, working with a lot of elderly, says they change every 4 weeks to be in compliance with DHEC regulations.
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


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2457
   Posted 3/25/2010 5:10 PM (GMT -6)   
David,
There is nothing that I can say other than how sorry I'm to hear that things didn't go well for you. The pain and problems which you are having are beyond anything I have ever been through. God help you.
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 4 months
8 weeks 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
11.5 months test 1/21/10 result 0.004


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 3/25/2010 5:26 PM (GMT -6)   
Thanks, Ed. Its just a shame to be in this endless loop that I have been on for so long now. I have great reserves of patience for most things in my life, but I admit, starting to show signs of wearing down from all this going on.

As I have said before, if I can see even the slightest hint of hope post savlage radiation of slowing down or beating this PC beast, then I can look back and say its still worth it all.

Meanwhile, I just try to deal with it one day at a time. Not sure there's much more a person can do than that. Always appreciate your kindness though.
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


IDguy55
Regular Member


Date Joined Mar 2010
Total Posts : 27
   Posted 3/25/2010 9:19 PM (GMT -6)   
David, Sorry that it's not working out for you Hope your taking arest idea works out fro you.

Dallan
Current Age 55, DX October 2005 PSA 50
Biopsy 11/15/2005 Gleason 4 + 3, High Grade PIN, Perineural Invasion, T2 NX MX Stage 2
Bone Scan Clear, CT Scan Negative
open RRP on 12/19/2005 Gleason changed to 3 + 4, Tumor estimated at 25% of prostate volume, Negative Margins,
Extensive Perineural Invasion, Lymph Nodes Clear, Catheter removed 1/3/2006 (holidays) Dry at night. moderate incontinence during the day.
1/25/2006 PSA .046, Moderate Incontinence
2/28/2006 PSA .027
6/22/2006 PSA .043 Just a little stress incontinence
9/08/2006 PSA .065
IMRT Start 10/12/2006 45 treatments 80 gy
1/4/2007 Almost Total Urinary Blockage, Cystoscopy performed, The next few days I had the Urinary tract of a teenager.
1/8/2007 Clogged up again, Catheter put back in. Removed myself (highly recommended) 7 days later No problems since with only occasional very mild stess incontinence since.
1/11/2007 PSA .03
7/26/2007 PSA .011
1/24/2008 PSA .027
5/22/2008 PSA .104
9/25/2008 PSA .383
2/17/2009 PSA 1.06
5/12/2009 PSA 1.5
8/25/2009 PSA 3.8 LHRH agonist (3 month Zoladex) started
11/24/2009 PSA .021
2/23/2010 PSA 0.99 another 3 month Zoladex


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 3/26/2010 8:19 AM (GMT -6)   
Thanks Dallan, got to keep something going there.
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

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