Back from Uro's Office - say hello to Catheter #17

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 5/24/2010 12:59 PM (GMT -6)   
Got home awhile ago from uro's office.  Glad my mother was available to drive me, as I was in no shape when I got out to drive even a few blocks.  It was a painful catheter change out.  Even with sedation and numbing gel.  What hurts the most is pulling out the old one, felt just like someone stuck me with a jagged stick in the SP hole, my penis, and my rectum, all at the same time.  The dr. said he was watching my face, and when the cath just barely touched the bladder wall, I was white with pain.  He jelled up the entrance hole real good, but remember, with an SP catheter, you have 2 minutes or less to make out a tube swap, or the hole will try to close over.
 
We have somewhat of a plan in place.  I see him again near the end of June.  He wants to do another day surgery probably first week of July, if not late June, so that he can get up me with a scope again.  He knows I am too much pain to deal with it awake.  He wants to see first hand if any healing is taking place in the bladder and bladder neck, and to check on any possible scarring since he was last up there at the start of March.
If there is evidence of healing, he would remove the SP cath for good, and leave me with a foley catheter in place, and allow it to stay 3-4 weeks to allow the wall of my bladder to heal, and then, if all went well, remove the foley, and see how I can be on my own without a cath.  So that means, that by the end of July or first of August at worse, I could be cath free.  Still depends on how much natural healing has taken place.  Been almost 6 months since my radiation ended, and still very little evidence of any healing, but just might need more time.
 
If it doesnt look good up there and in my bladder, then he would be forced to abort things and put a new SP in place, and try again in a few more months.  He said from the way I react to any touching of the bladder area, and how the pain interconnects to my penis and rectal areas, is more evidence of just how serious the collateral damage is from the radiation.  He is going to report todays finding to my radiation oncologist, and see if they can offer any help or remedies.
 
At home, mother just left, hurting is starting to subside, got pain pills when needed.  Knew this would be an ordeal today, but once again, my dr. was very conscious of the pain factor and did the best he could to make it as easy as possible.
 
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


Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 5/24/2010 1:14 PM (GMT -6)   

Well, David, I haven't responded or posted in a while to your posts, but I've been following the ordeal(s)-------it's redundant for me and all of us here to tell you how sorry we are you have to to experience "Groundhog Day". But at least your uro is going to have a look-see to determine if anything good is going on in spite of the trevails. Keep us posted and I'll keep you in my thoughts/prayers.

Arnie in DE


Age 56 (biopsy & surgery)
PSA at Diagnosis-3.9
Biposy 8/19/08--4 of 12 cores positive; 5% involvement, Gleason 6 (3+3)
 
Surgery 1/26/09-DaVinci Robotic Prostatectomy at Presbyterian Medical Center/HUP-Phila, PA
Dr. David Lee
 
Pathology Report- Adenocarcinoma, no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins, Gleason 7 (3+4), Stage T2C, NO MX, Prostate 61.8 grams, gland involvement 2-10%
 
Catheter removed after 8 days, totally dry at 3 months. ED issues continue, Viagra (via ADC) nightly (100mgs), VED use in earnest at 6 months. "Ball Park Frank" plumping at this point......ED at 10 months continues to improve, albeit slowly. Continued daily use of 100mg Viagra (ADC). Discontinued pump use; manual stimulation to varying states of erections; achieved penetratable erection on a couple of occasions----At 13 months, nocturnal erections are frequent. Still taking 100mg of ADC Viagra nightly. Libido still in the dumper, but working on it with doctors.
3 month PSA--<0.1
6 month PSA--<0.1
10 month PSA--<0.1
13 monthPSA--<0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 5/24/2010 1:20 PM (GMT -6)   
Thank you Arnie, hadnt heard from you in a while
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


Jakester
Regular Member


Date Joined Aug 2009
Total Posts : 284
   Posted 5/24/2010 1:23 PM (GMT -6)   
Sorry to hear about the ongoing pain, but glad that there are plans set going forward. Besides the physical pain there must be an enormous physiological burden. You have a fantastic family to support you at home and here at the forum so keep posting.

Stay cool, there is a solution out there.
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 5/24/2010 1:33 PM (GMT -6)   
Thank you Jake. My doctor is all to aware of how gun shy I am with any of these procedures, even though I know they have to be done. I was awake a good part of the night knowing what was going to happen today. Glad the pain and fear factor is over again for now, trying to make myself relax a bit.
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


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 5/24/2010 1:59 PM (GMT -6)   
I can only imagine what you are going through and I cringe when I try and ready your post. All I can say is just keep on hanging in there as you have for so long.
 
Larry
Age 55 / age at diagnosis 54, PSA 5.1
Robotic surgery 08/12/09 at Vanderbilt, Nashville TN. 
Final Path report:
20% of the prostate Involved
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear, Positive Margin Noted in Right Apex
 
First post Surgery PSA - 0
Six month PSA - 0


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 5/24/2010 2:10 PM (GMT -6)   
Trying my best on that front, Larry. Definitely drew a bad card out of the deck when I picked the chronic stricture/endless catheters/further damaged by radiation card. Wish I could put it back in the deck and choose 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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 5/24/2010 3:29 PM (GMT -6)   
Since I have had my open PC Surgery, I have now spent 362 days total on 16 catheters. Of that time, have spent the last 251 consecutive days on them, never gets any easier, trust me. May have to write a book, "The Catheter Chroicles", lol. Four hours later, still very sore, mostly in the bladder neck itself from the trauma of the switch out today. Definitely flowing strong, which is always a good sign with any new cath in place. Hope to get some good sleep tonight, and a lot less pain.
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


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 5/24/2010 4:11 PM (GMT -6)   
Is your nightmare ever going to end Dave? I hope come July they see some healing. You have much more patience than I ever would.
Diagnosed 11/08/07 - Age: 58 - 3 of 12 @5%
Psa: 2.3 - 3+3=6 - Size: 34g -T-2-A
 
2/22/08 - 3D Mapping Saturation Biopsy - 1 of 45 @2% - Psa:2.1 - 3+3=6 - 28g after taking Avodart - Catheter for 1 day -Good Candidate for TFT(Targeted Focal Therapy) Cryosurgery(Ice Balls) - Clinical Research Study
 
4/22/08 - TFT performed at University of Colorado Medical Center - Catheter for 4 days - Slight soreness for 2 weeks but afterward life returns as normal
 
7/30/08 - Psa: .32
11/10/08 - Psa.62 -
April 2009 12 of 12 Negative Biopsy
 
2/16/10 12 of 12 Negative Biopsy 
 
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 5/24/2010 4:32 PM (GMT -6)   
Realziggy, thanks, but even if i were a person of no patience, i would still be in the same situation, after all these months of torture, the thought of at least an ending date, even though tentative of course at this point, is encouraging. whats one more month, after all this? my dr desperately wants me to have a more natural healing end to this ordeal. If this doesnt work out, will then have to seriously consider some risky advanced surgical tricks, things that after reading about them, would rather not do either. as bad as things have been, they can still be much worse if a wrong decision is made along the way, one that cant be reversed.
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


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 5/24/2010 4:38 PM (GMT -6)   

Just went through my thesaurus.  Can't find any new words to express sympathy ....

If I recall correctly, pattersson recently made the interesting suggestion of hyperbaric therapy for radiation-related complications like yours, and medved found a program at Duke that does that kind of thing.  I did some reading about it, and it sounds very promising.

You were going to look into it.  Where does that stand?

Just don't want to see you suffer any more.

Zen9


SubicSquid
Regular Member


Date Joined Oct 2009
Total Posts : 252
   Posted 5/24/2010 6:26 PM (GMT -6)   
David, I hope your new cath will give you some relief, at least for a little while. Your Uro's plan seems reasonable. I had my IGRT simulation today. Start treatment June 1. Your problems worry me because of my previous stricture problem. I'll just be positive and hope the doc does a good job and I don't get too much scarring. 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.
*04/14 - Six month PSA - .21.
*04/28 - Will start IGRT week of 5/24.
*05/15 - Incontinence basically under control.  99% dry.  Wear pad daily at work "just in case".
*05/24 - Had IGRT simulation.  Got "tattoos"  Treatments start 6/1/10.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 5/24/2010 6:34 PM (GMT -6)   
zen, i intend a full investigative study into what pattersson suggested. it is definitely something i have heard about, but know nothing about. when i see my doc again soon, i would like to know enough about it to talk to him. even though radiation isnt his game, he has seen a lot of patients severely messed up by radiation over his career. he said even today, that for me to be in this much chronic pain six months after ending radiation is rare, but has seen some cases go on much longer. his thought, is that since i had no fluid in my bladder during the srt, due to the presence of the catheter, it left all the bladder walls, rectal parts and even penis totally unprotected, that and the fact that 72 gys of rad was slammed into a very deep and narrow area. bear in mind, all this was discussed before i ever agreed to, or began the srt, but the radiation oncologist assured me that it was safe, and that she compensated for this. i tend to disagree, as a review of my daily treatments tell the story of me feeling "burns", "nausea", and other sympton shortly after beginning the 39 treatments. i am not looking for blame, but looking for an answer that could at least explain to me what went so wrong. thanks for your interest and suggestion.
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 5/24/2010 6:42 PM (GMT -6)   
subic, my friend, i fully agree that you need to get started with your SRT, I sincerely hope that you through yours like many men here have reported: just a lot of daily hassle, some fatigue, and at worse, a little urgency in peeing. If you can pull that off, you will be doing fine. Your doctor may feel that your stricture history isn't severe enough prior to now, to justify doing what they did to me with the SP cath. My uro wasnt warm to it at first, but the further I went into SRT with the problems I had, he freely admits that for me, it was the smartest thing to do, as there is no way to insert a foley catheter into my damaged areas without me being put under. If he scopes me in July, will have to let you know how much scarring took place since he last looked at the beginning of March. I think he is curious too. When I have a severe enough spasm, allowing urine around the cath, the pain it causes me when it goes through my bladder neck can sometimes be an 8 or 9 on the pain scale, and despite pain meds, can hurt for hours later.

Really hope you do fine, and please do some kind of daily log here if you feel up to it. We have had so many go through SRT in the past 6 months, I think the differene experiences reported are a good tool for those that follow us.

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


SubicSquid
Regular Member


Date Joined Oct 2009
Total Posts : 252
   Posted 5/24/2010 6:52 PM (GMT -6)   
My Uro seems more worried about the possibility of scarring than the radiologist (but not enough to put in a cath).The radiologist just considers it a possible side effect. To add to my troubles, I ripped up my knee pretty badly and will have an MRI on Thursday. Possibility exists I now need knee surgery. Radiologist says no sweat - skip treatment on a Friday, get scoped by the Ortho surgeon, and go back on schedule on a Monday. Sure sounds easy to him. Then I would have raidation every day along with physical therapy. I think I will just bear the pain until the first of August when the radiation is done. If I end up needing stricture surgery again, they can just knock me out and cut everything at once!!!!! The fun never ends. 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.
*04/14 - Six month PSA - .21.
*04/28 - Will start IGRT week of 5/24.
*05/15 - Incontinence basically under control.  99% dry.  Wear pad daily at work "just in case".
*05/24 - Had IGRT simulation.  Got "tattoos"  Treatments start 6/1/10.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 5/24/2010 7:04 PM (GMT -6)   
sorry to hear about the knee damage, something i have never dealt with, never even had a broken bone in my life thus far. only you would know the pain the knee causes, but if you felt comfortable delaying treatment for the knee until after you radiation ended, it might make things easier for you.

when you go through the raidation, keep a close eye on your stream/flow. the moment you think it is reducing, hit your uro up real fast, so that a remedy or cath can be placed before it become too painful an ordeal to consider because of your radiation. still hoping you can just get right through it. how many treatments are planned and what is the total gys of radiation they are planning on you?
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


SubicSquid
Regular Member


Date Joined Oct 2009
Total Posts : 252
   Posted 5/24/2010 7:29 PM (GMT -6)   
David, I've been watching my stream ever since they opened me back up. Will keep doing the same. Don't know total number of treatments or gys. Will find out next Tuesday and add it to daily or weekly log of the experience. My thought is since I am handling the knee pain now, I will get it fixed after the radiation unless the ortho specialist thinks I will just be causing a lot more damage by waiting. 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.
*04/14 - Six month PSA - .21.
*04/28 - Will start IGRT week of 5/24.
*05/15 - Incontinence basically under control.  99% dry.  Wear pad daily at work "just in case".
*05/24 - Had IGRT simulation.  Got "tattoos"  Treatments start 6/1/10.


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2457
   Posted 5/24/2010 8:14 PM (GMT -6)   
David,
I can't imagine having to go through all these catheters and all this pain. You must have a high tolerance for pain that few men have. It looks like your Uro has a plan that hopefully will work so you can be finally free. I wish you the best of luck. My wife and I are praying for 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 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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 5/24/2010 8:30 PM (GMT -6)   
Thank you, Ed, I assure you I have no tolerance for pain, thank goodness for meds and plenty of chance to rest up between spells.
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


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4089
   Posted 5/24/2010 8:46 PM (GMT -6)   
David: I am not supprised by the pain of the swap. I think it was time to make the switch. Possibly you can now get some rest. You know I will be waiting to see what the Dr. finds when he goes to look in therre at the end of the month.

You do know I think of you every day.

Cajun jeff
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 5/25/2010 7:00 AM (GMT -6)   
Thank you Jeff, as always. The earliest he can schedule this procedure will probably be the first week of July, so we are talking a bit over a month. But at this point, a month doesnt sound that long to me, not after all these endless months with no date set to do anything. Just the thought, that in theory, I could be cath free perhaps by the first of August is encouraging. A lot has to happen in the natural healing process of my body, but one can only hope.
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


Chatuge
Regular Member


Date Joined Mar 2010
Total Posts : 37
   Posted 5/25/2010 7:34 AM (GMT -6)   
David-you are in my thoughts and prayers. When I grumble about my puny aches and pain I have to remind myself of what it can be! Your strength and attitude is a lesson for all-hang on-there has got to be a light at the end of the tunnel.
Age 67,married to the same one 45 years, PSA's: 10/05=2.35, 4/06=2.59, 7/07=2.94, 7/08=3.91, 10/08=4.42, 7/09=6.73, 1/10=7.68.  First 12-needle biopsy 2/09 revealed no cancer.  Second 12-needle biopsy 2/10 w/results received 02-16-10 revealed rt lateral base adenocarcinoma with approx 17% of submitted tissue involved, left base and left lateral mid diagnosed  as Prostatic Intraepithelial Neoplasia (PIN), High Grade, with the remaining 9 tissue samples ok.  My Gleason's score is a 7 (grades 3+4).  I considered HIFU clinical trials at UNC Chapel Hill however they accept nothing over a 3+3.  First appt with diVinci surgeon 3-22-2010.  Surgery accomplished 4-20-2010 by Dr Shah at St Josephs in Atlanta.  Cath removed on 4-30-2010.  Post op biopsy:  size of prostrate-87.6 grams, Gleason 3+3 with tertiary pattern 4, rt seminal vessel involved, margins uninvolved, tumor bilateral (predominately right side) and "moderate amount" involvment of the gland (explained as less than 50%).  A blind biopsy is also being sent to Johns Hopkins.
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 5/25/2010 7:37 AM (GMT -6)   
Thank you, chatuge
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


soxfans4life
Regular Member


Date Joined Apr 2008
Total Posts : 63
   Posted 5/25/2010 5:32 PM (GMT -6)   
smurf  EEEk, okay now we're just hangin in there for you, hoping this is THE catheter that does it's work! Your Uro's plan seems  good,& "nurse-wise "we know you're in good hands!  tongue We hope for you every day & you still get the prize for best patient EVER!  Nurse Annie & Mr. Sox Fan

dx. 3-08  @ age 63. gleason 6 . 1 out of 12 cores positive. 4th biopsy in 8 years. previous 3 negative. followed closely due to family hx.grandfather, father and 2 uncles dx. with prostate cancer. dre negative, cat and bone scan negative. davinci scheduled for may 27, 2008. 2 daughters, retired hospital administration, air force family years ago. Davinci on May28,2008, both nerves spared. Catheter removed in 8 days, pathology report revealed precancerous lesions. Presurgical psa was 5.9, 1st  psa scheduled for August. 1st post surgery psa 0.00, august 6,2008. 2 following psa's 0.00.Yearly followup & psa sched for may 2009. Results of this & Jan. 2010 psa 0.00. 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 5/25/2010 6:45 PM (GMT -6)   
Thanks, Nurse Annie. My personal live-in nurse comes tommorow after spending the past 5 days camping with the girls in the mtns of Western NC.
My best to me Sox Fan. Go Sox Nation!
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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