Still very sore 11 days later

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/30/2010 1:52 PM (GMT -6)   
It was just Jan. 19th that I had my most recent corrective surgery to the bladder neck.  For the first week, did pretty well with it, not too much pain, mostly getting use to having two catheters in me at the same time.
 
However, since Wednesday night, been having a lot of pain, and probably more bladder spams then I ever had at one time.  Thursday was rough, I stopped counting them after 36 of them, some strong enough to make me lean into a wall for support or to drop to my knees.  The interesting part, the active catheter is the SP suprapubic coming out of my stomach, its not really hurting at all.  When I was having spasms with the SP, they produce more dry like spasms that hurt the rectal area.  Now that I have the SP and a Foley coming through my penis  (as normal for me), most of the pain is from the bladder neck forward to the tip of my penis.  The spasms are intense ,sometimes they will force a small amount of urine out the tip (which means it hurts less), or else they are intense.
 
My dr. knew this would be a rough time with the 2 caths in place.  A week from Monday, I see him again, and assuming no set backs, I am suppose to have the SP one removed, and the foley cath replaced with a new one, one size bigger in diameter.
 
Just about to finish up on the antibiotics I have been put on since the surgery ,so  I don't believe I have any infection at the time.  I can only say, the pain associated with these 2 caths and all the spasms has almost got me shut down.  about the only time it doesn't hurt is I am lying down on my side with my knees pulled in.
 
This has turned out to be a tougher recovery period then I had calculated.  The thought of dealing with this for another 4-6 weeks sounds unbearable.  But I have to force myself to think, one day at a time, and hope and pray this will someday pass.
 
All my extra patiences has erroded away, and its just a battle to keep fighting the pain.
 
David in SC
 
P.S.  We dodge the bulk of another major winter storm, have some sleet and ice, no loss of electirity, people out and driving about, while our friends over the border in NC got slammed big  time.
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
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 1/30/2010 1:55 PM (GMT -6)   
Sorry you are still feeling under the weather. Hopefully better days are ahead. RE weather, we got 9 inch, so far, but still have power and full services...Was wondering how Greenville area made out. Hendersonville has 13 inch. smilewinkgrin
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/30/2010 2:14 PM (GMT -6)   
Only snow as about 10 miles north of G-ville. Its all sleet and ice here, but fortunately, roads are all passable, no major electrical outages.
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
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2229
   Posted 1/30/2010 2:16 PM (GMT -6)   
Sorry to hear about that level of pain David. It's hard to keep our spirits up when we hurt that bad, or at least it is for me. Please do what you have to do to make it bearable and I know your not a lay down and pull the knees in kind of guy. Hope you see better days ahead and soon.
PS We got a little snow and ice in North Ga and the power went out about 5am and was out for about 3 hours, turned the gas fireplace on and it did the trick.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margin slightly involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only, now none
 started ED tx 7/17, slow go
Post op dx of neuropathy
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10
Great family and friends
Michael


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/30/2010 2:25 PM (GMT -6)   
Thanks Michael. I know you are still plugging through your IMRT treatments. Hard to believe that mine ended 2 months ago, still so fresh in my mind. I will be glad when you are done with yours too. I am still experiencing post SRT fatigue, and still some "burn' issues, mostly in the rectal/penile areas, which doesn't help with the 2 caths jabbing at me 24/7.

I am almost 15 months out of the big surgery, and even I find it hard to believe that I am still dealing with these unusual and painful issues. Just want that part to end.

What part of GA you in? Got about 1/10" of icing so far, probably less than an inch of sleet, we had been predicted to get 4-6" of snow but it never happened. We have a wood burning fireplace and plenty of dry wood for heat back up, and have a gas stove which we can also use for heat if needed.

Hope you continue to do well with your treatments.

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
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4108
   Posted 1/30/2010 2:53 PM (GMT -6)   
David: I hate that you are stiff batteling that pain. I hope it gets better for you ASAP.

You Brother 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.
15 months out injections Caveject (success)


Jakester
Regular Member


Date Joined Aug 2009
Total Posts : 285
   Posted 1/30/2010 3:13 PM (GMT -6)   
Hey David,

I guess I better not complain about the rain we are having in California or I'll get booted off the forum for being a pansy.

Keep upbeat, the problems seem to be narrowing down to a few (albeit exhausting) from the number you have dealt with so far. We're confident you'll get through this.... great family, great friends backing you all the way.

Our best to you and the rest of 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


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 1/30/2010 3:52 PM (GMT -6)   
Hi Dave,
 
Sorry to hear that you're still having some pain at this time. Hopefully it will get better soon. I know that you're no stranger to pain and discomforts in your journey, but we all know that you're a pretty tough nut to crack and that you will get through this latest episode and will feel better soon.
I wish you could send some of the cold weather and snow to us here in B.C. Canada. The winter Olympics is about to start (2 more weeks) and we had nothing but rain and warm temperatures.................snow machines are working overtime. Such is life.
Anyway, Dave, wishing better, pain free times ahead for you soon.
 
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/30/2010 4:57 PM (GMT -6)   
Jeff, thank you big time.

Jake, see you are still plugging through your radiation as well, hope the side effects stay minimal for you. Even too much rain can be a bad thing.

Magaboo, thanks my friend, always wanted to visit beautiful British Columbia. Perhaps one day.
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
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 1/30/2010 5:06 PM (GMT -6)   
I am really sorry to read of your continuing pain David. I really don't know how you muster the grit to bare that and still make the time time to offer comfort and advice to fellow members. That to me says "top class character". We are all really pulling for you to get relief from the "eternal catheter" syndrome shortly and continue the path to good health.
all my best,
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 : 25380
   Posted 1/30/2010 5:29 PM (GMT -6)   
My good friend Billy, thanks. I hate to keep mentioning or complaining about it, I know many others here deal with their share of pains. It does seem eternal at times, considering the route of the problem goes back to my main surgery in 11/2008.

Been stuck at home today, too much sleet and ice on the road to want to venture out, and sitting on the cold, hard leather seats of my auto makes me sore just thinking about it.

Hope you are doing ok, enjoyed your chat the other night.

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
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


SubicSquid
Regular Member


Date Joined Oct 2009
Total Posts : 252
   Posted 1/30/2010 5:32 PM (GMT -6)   
Hope all the misery ends for you soon. I'm on my second cath. Been having a few spasms and several pieces of tissue have popped out. Hope that is the end of the blockage. You've had enough pain for the group of us, hope it all ends soon.
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 Surgey October 22, 2009 (6 hours on table; 2 units blood)

Small part of incision infected (2 staples removed); finally healed at 3 month mark.

Prostate, both nerve bundles, seminal vessels, and two lymph nodes removed during surgery.

Post surgery Biopsy, Gleason 4 + 3; 2 positive margins


Returned to work after 6 weeks. First week worked only half days because of pain from sitting for long periods.

Still slightly incontinant after 12 weeks - 1 pads 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


In This Together Wife
Regular Member


Date Joined Dec 2009
Total Posts : 135
   Posted 1/30/2010 5:34 PM (GMT -6)   
Oh David, pain is rough.  Three weeks after RRP Bear had drop to the kness pain and was wondering how in the world he could go back to work in one week.  Then one day the pain was less and sure enough he was ready.  Hope that is the case for you, that it will not really be 4-6 weeks more of pain.  I know your wife hurts for you, too. 
CareBear

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/30/2010 6:04 PM (GMT -6)   
Subic, I feel for you too. With cath 11 and 12 in me at the same time ,thinks thats enough for several men, lol.

Carebear, as a nurse, she knows there is only so much that can be done presently, and only so much she can do for me, I would hate it just as much if I were the one watching her hurt all the time, it would drive me nuts for sure.
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
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


MaxBuck
Regular Member


Date Joined Jan 2010
Total Posts : 75
   Posted 1/30/2010 6:43 PM (GMT -6)   
David - add one more who is concerned about you and who is wishing a favorable end to your pain and struggles.

The irony is that knowing you are going through all this and remain so nurturing and positive is a great comfort to so many other sufferers. We'd all like it if circumstances improved so you could quit being such a role model.
Dx at age 56: Oct 09; PSA 5.8, followed up by 9.9 two weeks later (reproducibility of test - ?)
Biopsy ind cancer in 8/12 cores: Gleason 8 (4+4)
open radical retropubic prostatectomy Dec 4 09
Post-op pathology: 56 g weight, cancer in 21%, Gleason 7 (4+3, tert 5); margins clear, no lymph node involvement (0/9), perineural invasion present, T2c N0Mx (but showed clear from distant metastasis in pre-op bone scan and CT scan)
Continence data: 1 "panty liner"/day, with minor leakage when I get up from long seated position
ED pretty complete: some erection possible but current non-functional


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7211
   Posted 1/30/2010 7:26 PM (GMT -6)   
David:
 
So sorry to read your post.
I was going to complain about some bladder spasms -- but... never mind!
 
At least you will hopefully have an end in sight.
 
Mel
63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.  
History of BPH/prostatitis. PCA-3 test: 75.9 (bad news, guaranteeing I have to do....): Biopsy on 11/30/09. Result of biopsy:

5 out of 12 cores positive. Gleason 4+3. More specifically: 2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C

REVISED BIOPSY REPORT: The previous was read by Umich. Slides were then sent to Dr. Menon at Ford Hospital. Here is their report (much better) -- changes in bold print below:

5 out of 12 cores positive. Gleason 3+4. More specifically: 2 cores were 3+3 (one 5% and the other 20%) on one side. On the other side, 3 cores were 3+4 (5%, 5%, 20%)

 Surgery with Dr. Menon at Ford Hospital,  1/26/10. He says all looked good. Spared nerves. Awaiting pathology report, set for 2/2/10.

 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/30/2010 7:37 PM (GMT -6)   
Mel, speak away, bladder spasms come with the turf of what PC surgery patients go through in the recovery process. I certainly don't claim to have a monopoly on them!

Thanks, Max
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
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 753
   Posted 1/31/2010 12:46 AM (GMT -6)   
I wonder if it would be helpful to open the chatroom any time, just to get things off your chest. You don't seem to be on right now, but at any given time, I bet there would be people willing to talk.

You could even drop in on our friend with ulcerative colitis.
Diagnosis at age 53. PSA 2007 about 2; PSA 2008 4.3
Biopsy September 2008: 6 of 12 cores positive; Gleason 4+3 = 7
CT and Bone scan negative
Da Vinci surgery at City of Hope December 8, 2008
Radical prostatectomy and lymph node dissection
Catheter out on 7th day, replaced on 8th day, out again 14th day following negative cystogram
Pathology: pT2c; lymph nodes negative; margins involved; 41 grams, 8% involved by tumor; same Gleason 4+3=7
PSA 1/22/08 non-detectable! 8-)
4/23/09, 07/30/09, Oct 2009 still undetectable!


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 1/31/2010 8:59 AM (GMT -6)   
sorry to hear but hopefully each day will be better.
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
20 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue but getting better


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/31/2010 12:16 PM (GMT -6)   
DJ, I check at random times to see if any one is there wanting to chat, its not often that I find anyone outside our normal time on Wednesday, but I understand if its not being used, we can go there anytime.

thanks Rob, after a good night sleep, didn't take long up today for the pain and aches to come back

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
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


keysailfisher
Regular Member


Date Joined Dec 2009
Total Posts : 346
   Posted 1/31/2010 1:05 PM (GMT -6)   
Sorry for your pain, it's ok to complain or vent or whatever makes you feel a little bit better. Hopefully Monday will be a step forward. We are here for ya.
 
(4" snow 2" sleet no ice)
 
Neal
age 45
psa 3.09
Biopsy results 12/9
Left side base 3+3=6 21% 2/2 cores positive
Left side mid  3+3=6 100% 2/2 cores positive
Left side apex 3+4=7 88% 2/2 cores positive
Right side - 0/6
CT & Bone scan negative
Davinci Feb. 5th 2010


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/31/2010 3:19 PM (GMT -6)   
Thanks Neal, Sunday is turning out to be another day of hurt, just chilling at the moment.
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
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/31/2010 10:17 PM (GMT -6)   
Did nothing today, other than a quick trip to Walmart and Staples with my son, it just hurt too much sitting on the leather seats in my car, by the time we got back home, I was done for the day. Couldn't even tell how many severe spasms I had today, they were very frequent, almost anytime I was on my feet for more than a couple of minutes at the time. Really have had about enough of this, just don't what else I can do at the moment.

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
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 1/31/2010 10:55 PM (GMT -6)   
David, as you know, I am not a medical person, but I am most distressed with your suffering.  It seems to me that to experience so much pain in the second decade of the 21st century is unreasonable.  Perhaps someone here can suggest a way to alleviate your misery.  This is just nuts, I think.  I admit to being a weenie, but the amount of this that you have experienced and are still dealing with is just horrible.
 
As I recall your lovely bride is a nurse and she certainly knows more than I, but man, the misery really needs to end.
 
Best, my friend,
 
Bill
 
P.S.  Hope I haven't said too much, but I just hate this for you.
August of 2006, PSA up to 4.2 from 2.7 one year ago. 
October free and total PSA 12% free and 5.0 total.
A month, or so later, 4.7.
Late in the year decide on Image Guided IMRT.
Begin 43 treatments on January 23, 2007 and finish on March 23.
 
Wow, almost two years behind.  I had a typical radiation bounce that
scared me, but it seems to be ok.  PSA is about 1.0 which is ok for
a rad guy at this stage of the game.
 
Got my FAA medical certificate back four months after starting my
treatment.  It's still a First Class, just jumping through a few hoops.
 
October, 2009.  Latest PSA is still 1.0 - that would make you surgery guys nuts, but it's just fine for a rad guy.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/1/2010 10:22 AM (GMT -6)   
Bill, don't worry, you haven't said too much. I consider you a friend, and your opinion is most welcome.

It's not like I keep getting new problems, this all stems to the original problem: strictures/blockages caused by excessive scarring at the bladder neck. This was then complicated by the negative side effects of the radiation treatments.

It was agreed by my radiation oncologist and my uro/surgeon, that the radiation would only make the swelling worse, and the closure issue happen sooner, and they were right. This is why we did the pre-empt of putting in a suprapubic catheter for the duration.

Sure enough, two months after the radiation ended, my surgeon a week ago Tuesday was totally astounded that my bladder neck had entirely closed shut, not partially, but as if there had never been an opening.

This is why I am on the two catheters, and this is why we are working over the next 4-6 weeks to slowly rid my need of any of them, but this assumes I will stay open on my own when the last cath is removed.

Catheters cause a lot of pain long term, think of you men that only had one, for 5-15 days, and you thought that was miserable. I now have had an SP in place since October 1 without interuption, that is 4 full months. The one that is hurting me so much is the small diameter foley through my penis, It is blocked off, its only purpose right now is to try to keep the bladder neck from closing up again, at least to keep an opening.

So while there is a lot of pain, its all from the same source, the same problem. There are perm. solutions to this rare ongoing problem, but they are not pretty either, my entire bladder neck can be bypassed for life and I could pee into a bag (not a catheter), I could have a perm stent in place, and just pee in diapers for the rest of my life. So there is no easy solution here, and thus all the non-radical approaches to trying to solve the problem.

The pain is just part of the problem, drugs can remedy that. I just want to walk around like a normal person, and not having one or more catheters tugging at me. Would like to be able to roll over in bed, something I can't do right now without pulling my tubes apart, would love to take a tub bath or get into my nice hot tub, something I haven't been able to do since last September. Not asking for a miracle here, just a little normalcy.

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
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time

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