Post SRT Update

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/6/2009 11:14 AM (GMT -6)   
It's been 9 full days since my final SRT treatment.  I am very thankful for that.  The biggest improvement to report, is that I no longer have those intense burning pains at the SP catheter site.  Those occured at and immediately after the actual zapping during the treatments themselves.  I still have pains and irratation at that spot, but that can be attributed to wearing a catheter for so long.  Today is day 67 on this SP.  My uro is suppose to remove this one for sanitary reasons and will install a fresh one, and check for infection at the same time.
 
Perhaps 9 days isn't long enough, but the other pains are still as strong now as when I was going through the SRT.  My radiation oncologist did say it might take 4-6 weeks to see a marked improvement, I was just hoping to heal faster.
 
Usually I start the day out ok.  THe more I walk, go to stores, bend, lift, or just stay on my feet, the more the pains come and increase during the day.  My most miserable times can be later afternoon/early evening, and often I will wake up after only a couple of hours sleep and just lay there hurting.
 
I know this isn't medically possible, just an analogy to explain how it feels, but it feels like that a rough piece of stick or metal is passed from the tip of my penis and exits from my rectum.  So every movement causes a lot of pain, unless I lay in just the perfect position.  Usually, by morning the pain has disapated, and the process starts all over the next day.  Today is Sunday, and I woke up with it hurting, so instead of doing what I wanted to do, going to have to stay home and rest.
 
Considering that I have an SP cath, and not a Foley coming through my penis, that there can be so much penis related pain.  Seems like every bad pain or nerve ending comes through the penis regardless.  Other times, I can feel this intense itching f eeliing deep inside both ends of me, but of course, there is nothing to scratch at.
 
I know, patience patience.  Just wanted to be feeling better by now.  The fatigue factor is about the same, I am good to do things till about 1 to 2 PM in the day, then my energy level is all downhill from  there.
 
Switched pain meds to something non-narcotic, but when the hurt really hurts, none of them do me much good.
 
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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 12/6/2009 11:57 AM (GMT -6)   
Ouch, David......sorry to hear time is not speeding up as quickly as you'd like in this instance. I'm sure after enduring all this treatment, you naturally want relief yesterday. I guess if the MD's estimate is correct, it'll be the same wait as the SRT treatment. Let's hope he's right but is erring on the conservative side! :-) .......these words of encouragement get a bit hollow after a while, but hang in there. ------I'm not schooled  enough re: SP catheter. Is there an end in sight, and if so, what are the markers the MD is looking for?
 
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, 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
3 month PSA--<0.1
6 month PSA--<0.1
10 month PSA--<0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/6/2009 12:29 PM (GMT -6)   
Arnie,

SP stands for suprapubic catheter. Instead of a Foley Catheter, which exits through the end your penis. The SP catheter is surgically installed, and sits up higher in the bladder, and exits just to the left of below my belly button. They are intended for longer catheter times and with invalids and some elederly, they can have them for years.

Sonny, one of our brothers here, had a SP catheter installed instead of a Foley when he had his fairly recent surgery in Detroit, and it worked well for him the short time he had it in place.

Most of my problems have to do with my bladder neck scarring closed and not allowing any flow since I had my big surgery a year ago November. Already had 3 corrective day surgeries to "fix" it, and one painful emergency hard dialation session.

When the swelling goes down from the radiation, the plan is for my uro/surgeon to open me back up (probably with another day surgery), and remove the SP catheter. It will involve still another catheter, a Foley this time, for a few weeks, so that the puncture in my bladder from the SP has a chance to heal up properly. When all of this is done, of course I am hoping to pee on my own without blockages.

That is the game plan. Based on the pain I am still feeling after my radiation ended, I do believe my doctor is rigth about how it can continue to swell after radiation ends. I am very sore to the touch anywhere below my belly button.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 12/6/2009 12:39 PM (GMT -6)   
David, Sorry that you are still having so much pain and discomfort. I don't know how you do it. What you are experiencing makes my journey like a piece of cake. I hope it will be over soon and the final result will be a life time without PC.
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.
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


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 12/6/2009 1:31 PM (GMT -6)   
David,


Sorry too hearing about things not getting better. Did you ever understand why there was so much scarring and blockage at the neck of the bladder? Your case seems to be the most severe I have heard of on this site.



Regards,



Steve

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/6/2009 4:38 PM (GMT -6)   
Ed, I hate to be on the complaining end, but I never dreamed to still be having issues like this 13 months after my main surgery.

Steve, no easy answer to that, my dr. said for starters, some peoples bodies just go nuts about producing scar material, I have always had that as an issue even outside of PC. I have had periods of bad psorasis over the years, when I first was dx with PC, most of it, probably 90% just disapeared within weeks, some had been there for more than 10 years, mostly on my ankles and upper thighs. about 2 months ago, after being gone a year, it has started coming back with a vengence. I only mention it, because they still dont have a clue what causes psorasis, and its all about the body being confused about replacing skin tissue over and over again, even when its not needed. My radiation oncologist wonders what kind of connection there may be between cancer and psorasis, if any.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 12/6/2009 9:52 PM (GMT -6)   
David,  One day at a time buddy.  You are one day better than yesterday.  One less pain.  You know I am thinking of you ecah day and hopeing for a quick healing. 
 
Your Frined in PC
Jeff T
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/7/2009 8:42 AM (GMT -6)   
Thank you Jeff, its nice just to say it out loud and to vent off some pain.

Sunday's seem to be my worse day of the week throughout this SRT process and that continues now post. Mabe things build up all week and hit me on Sunday. Dealt with a lot of pain issues the entire day and evening. Didn't even watch any football, if you can believe that, was too edgy and impatient to even want to do that.

I had to drive into Greenville with my youngest son to go to a single store, walking that one store about did me in and I had to call it a day.

I do see my uro this afternoon, to swap out this cath bag, and to make sure I don't have a new UTI from the catheter. I will tell him about where I am at post SRT.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


Squirm
Veteran Member


Date Joined Sep 2008
Total Posts : 744
   Posted 12/7/2009 12:59 PM (GMT -6)   
Hello David...
I know when my dad went through radiation, it caused problems, some of them as you described. I remember it took a while for the effects to wear off, but I do remember that he felt much better each passing month.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/7/2009 1:35 PM (GMT -6)   
Thanks, squirm, that's what they keep telling me, its just been such a long past 13-14 months, too many set backs, too many corrections, too many catheters, too many painful events, just seems endless to me. I sometimes wonder if the cure is worse than the disease.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4154
   Posted 12/7/2009 2:20 PM (GMT -6)   

David:

I haven't posted on your threads in awhile, but just wanted you to know I was thinking about you and wishing you all the best.  This has been a tough year for you and I'm really hoping that 2010 will be a MUCH BETTER ONE!!!

Take care my friend,

Tudpock


Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 12/09.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/7/2009 3:58 PM (GMT -6)   
Tud,

Glad you wrote me. Was hoping I hadn't made you mad somewhere along the way, lol. I love reading your posts. My wife and I were discussing that very subject recently. 2010 has to be a better year for me, for us. I need to be catheter free, I need to get back to zero psa, and I need to get back working. Sounds simple. Thanks for your friendship.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place

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