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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/2/2010 8:34 AM (GMT -6)   
Forgot yesterday, the first of June, that meant I have had this suprapubic catheter in place continuous for 8 full months.  Hard for me to even believe sometimes.  That 273 days  now, plus  the 101 days I spent on foley cathethers prior to this, takes me now to over 1 year on catheters.
 
My best hope, is that my dr. latest plan will work, that would mean I could be catheter free by August, still almost another 2 months off.  The big "if" is how much healing inside has taken place when he gets the opportunity to look inside me during the next day surgery.  Based on pain quality and quantity, random bleeding and clotting  (even 6 full months after radiation ended), and all the rectal pain and rectal urgency I have experienced lately, I for one, not totally convinced much has changed.  But its hard to see something that is tore up on the inside of you, lol.
.
When you are on catheters this long - you become a master at adaptation.  But you never get a moment in the day to forgot, the catheter will never let you forget its there.  A little tangle, a little grab, a weird stabbing pain, the constant switching of bags, cleaning bags and tubes, etc.
 
And of course, my other friend, the bladder spasms.  How many I still have a day varies quite a bit, and even varies from cath to cath, some seem to fit better than others, some cause more pain.  But every spasms has that delightful feeling that someone let a grenade off inside your bladder, and with each one, you endure the best you can, and hope you never have to feel another one, but inside, you know that's not going to happen, not as long as you got a tube inside you.  It's not natural, so your poor bladder is trying to do you a favor by expelling it.,
 
For all my new friends fresh out of surgery, I know that catheter part sucks, and its usually the part that most men hate the most immediately after surgery, and trust me, I understand.  But if you are fortunate, it will be only for a week to ten days, perhaps in a few cases two weeks, but for the vast majority of you, that's it.  It will be removed, and that unpleasntry will be but a blur and memory to you.
 
This is like the night mare that you can't wake up from, hard to believe my cath journey started in Oct 2008 and its now June 2010, and no guaranteed end yet.  I hope I wake up one day from this, but I don't think I will ever be able to sit back and laugh about it.  Been too much stress and too many tears.  Adapt - yes, like it?  Never, not until hell freezes over.
 
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 : 4849
   Posted 6/2/2010 10:36 AM (GMT -6)   
Hang in there cool

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 6/2/2010 10:49 AM (GMT -6)   
My hope for you David is that August brings you that relief, but until then you are doing the best you can under the circumstances. Work is around the corner, so hope that helps take your mind off the cath. But to be honest I dont think anything could have taken my mind off that cath until it was gone.
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 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/2/2010 11:01 AM (GMT -6)   
Thanks Michael and Steve,

If the dr's plan pans out to the good, the last 3 or 4 weeks of cath time should be on a foley. Haven't been back on one of those since last September. It would be good news in my case, as it would mean things were well enough with me inside to remove the suprapubic cath. I can stay in a seated position wearing a leg bag a whole lot longer without pain with a foley than I have been able to with the SP. If this next step doesnt play out in my favor, i.e. a lot of interior damage is still seen, then I could be on the SP for an indefinite period of future time, something I sure don't want at this point.

I am convinced if my new employer even had a hint of what I am dealing with, they would drop me like a hot coal, can't say I blame them. Thank goodness for HIPPA laws.

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


RobnTexas
Regular Member


Date Joined Apr 2010
Total Posts : 24
   Posted 6/2/2010 11:04 AM (GMT -6)   
David,

Thank you for this post. Sometimes I need a reminder to know how fortunate I really am. I had a catheter for 15 days and really got despondent at times.

I am sorry that you are taking this journey for so long, but I appreciate the help that yourself and others here have given me with your posts.

Rob
Age: 49 PSA: 4/10 1.6
Biopsy: 4/10 - 4 of 12 Positive 2@ 30% 2 @ 60%, Gleason 3+3, T2A
RRP: 5/18
PostOp: Gleason 3+4, 45g, 2cm tumor
6/1 - Catheter out YES!!!!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/2/2010 11:22 AM (GMT -6)   
Rob, I can honestly say I understand the despondency part. When they wheeled me away for open surgery, I was told 7-10 days on the original cath. When I was in recovery, learned that it would be a minimun of 30 days, due to complications. I was more depressed by that news then any other part of my initial recovery. For one thing, I wasn't allowed to drive during that initial 30 day period. I didnt think that 30 days would ever pass, but then the 30 turned into 63 days, over twice the original number.

Brother Sonny here, is one of the few that had a suprapubic cath after surgery, instead of a foley. His was in for the normal short time, and once removed, he never had a problem with it. I do wish more surgeons would consider placing a SP instead of the foley, especially for men that are going to be on a cath for more than 2 weeks.

I expected to be on this one, for 3 months max, even hard for me to believe that its been 8 full months and climbing. But as my doctor would testify, it is still the best life line I have in place, to prevent me from suffering another blockage or stricture. He correctly feels that I would not be able to endure inserting an emergency foley catheter if the SP was removed and something went wrong. I fully agree with his thinking, that this miserable tube is still the lesser of evils.
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


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1211
   Posted 6/2/2010 11:34 AM (GMT -6)   
Hi David,

My heart goes out to you with all you have to endure. I just wish that there was something I could do or say that would make your suffering a little easier. I hope it helps a little just knowing that so many of us here are with you in your difficult journey. Unfortunately, all we can do is hope that soon your road to recovery will get a little smoother and that you will feel more like your old self again. Don't give up.

Your friend,
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


RobnTexas
Regular Member


Date Joined Apr 2010
Total Posts : 24
   Posted 6/2/2010 11:34 AM (GMT -6)   
May the number 17 become your new lucky number.
Age: 49 PSA: 4/10 1.6
Biopsy: 4/10 - 4 of 12 Positive 2@ 30% 2 @ 60%, Gleason 3+3, T2A
RRP: 5/18
PostOp: Gleason 3+4, 45g, 2cm tumor
6/1 - Catheter out YES!!!!


SubicSquid
Regular Member


Date Joined Oct 2009
Total Posts : 252
   Posted 6/2/2010 12:33 PM (GMT -6)   
David, your mention of the spasms brings back ugly memories of pain only a few weeks ago. You have to be really tough to be handling the spasms for so long. Like you, I am not a fan of pain so I can't imagine what you are going through. I hope it all works out soon. 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.
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/2/2010 1:15 PM (GMT -6)   
Thanks, Mag and Rob.

Subic, you know what they are like. There's no getting use to them. I still take ditropan 3x a day, just because, originally they didnt want me to take it more than 10 days period, what a joke, been taking it steady the entire time. Not even sure it works, but afraid to stop taking the med in case it makes things even more severe. Couldn't even imagine any more, a single day of my life without one or more spasms

It would be nice one day, when they are a thing of the past. Things that trigger a spasm: Standing up after sitting or lying a long time. Sometimes just turning on a faucet or the shower, most everytime I change from leg bag to night bag, or even the other way around, sometimes when emptying either bag, and most times initiating a number 2. Then you have the spasms that just happen without warning, just because they can, lol.

On rare occasions, I have had spasms while in the sleeping position, but thankfully not too many times like that. The worse spasms are the "dry" ones, where the cath holds tights and won't allow any pressure relief, those kind can hurt for hours after they subside. the "wet" spasms still hurt, but they relieve some of the pressure by by-passing the balloon in the catheter and allow urine under high pressure to go through my sore bladder neck and out my penis. They still hurt a lot, but hurt a little bit less. Those kind give my bladder neck the most trouble by forcing it to open
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 : 4119
   Posted 6/3/2010 8:07 PM (GMT -6)   
David: Yes I am with the rest here and hoping that Aug will being a big change to you.

You Cajun Brother
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 : 25393
   Posted 6/3/2010 8:52 PM (GMT -6)   
If August doesnt pan out, and my hopes as well as my dr.'s hopes are on that, then will be forced to think a more drastic phase, one that might make a need for a perm fix that will alter the way I urinate forever. I want what my dr still believes is possible, a natural fix to this seemingly endless loop. He knows if we are forced to go to the next level, things will never be the same, and there will be no turning back. All this, and trying to start working full time in a high level position at the same time. I will need more strength and courage then I have presently. Still a lot of "what ifs" and un answered questions about how it will all come to pass, but in the end, I still live day by day. I am thankful at the end of each day for making it one more time. Tommorow will have to take care of tommorow.

Always appreciate you consistent support and care, Jeff. Since I have had the privilege to look you in the eyes and shake your hand, I know for a fact that you are indeed, the real thing. We have a great group here, and its an important part of my life, an important part of my twisted PC journey. Despite my best efforts, I assure you, I take more than I give here. Don't think i could ever pay back all the kindness and support shown my way

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

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