Visit with my Uro/Surgeon today

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/29/2010 7:59 PM (GMT -6)   
Today was my two-months post surgery check up with my Uro Surgeon.  He is pleased with my healing process so far.  Weight limit raised from 5 to 10 lbs for now.  A couple of times when I accidently lifted something much heavier, it hurt me for days after.
 
He thinks that I am as surgically healed as I am going to be from the Ileal Conduit Surgery in September.  I will always have to be careful on the side where the urostomy stoma is located (right side) for  the rest of my life.  The stoma has no nerve endings so you have to be careful not to hurt it or make it bleed, as you would never feel it.
 
The output from the stoma has been great from the start.  The "device" or wafer/bag that covers it is working well, the product we are using will last 6-8 days without leaking, then you change it out for sanitary reason.  I am slowly learning how to change out one myself, but it is very hard to do by yourself.
 
Still getting those phantom urges to urinate through my bladder/penis almost daily, multiple times a day.  Even puzzles my doctor, same urgency many of your feel, you would swear you were going to burst your bladder, but in my case, bladder completely disconnected from any input source and probably all shriveled up by now.  Just a weird sensation, and at times, can hurt for a few minutes.  Hoping it will resolve itself over time.
 
He's still ok with me putting off my PSA until Feb.  So when I see him on Feb. 28 for my 90 day post surgery check up, we will do the PSA, which at that point will be 6 months from my last one.  It will be what it will be.
 
Physical therapy is still going on.  I go 2 days a week right now for the 1st 6 weeks, then 3 times a week after that.  There is no specific end in sight, they will have me go as long as it takes.  I still have trouble standing or walking more than 10 minutes or so at the time, my back will just give out and the pain in my inner hips is overwhelming if I push too hard.
 
Gained back 10 of the 41 lbs I lost quickly after surgery, and most of it appears to be in re-gained muscle mass which I desperately needed after this ordeal.  Being careful not to add back in "junk food" weight, still not eating any.
 
Amazed totally, that despite all I have been through in the past 2 years, still not a trace of ED.  All systems go, anytime on demand, still consider myself totally blessed in that department.  Feel like I won the No-ED lottery in the PC world.
 
Just a slow and steady recovery, I knew that from the start.  I will deal with my PSA in the future, nothing I can about it right now, and no, I am not having any anxiety about not knowing.  That part is nice, its like taking a vacation from it.
 
David in SC
 

Post Edited (Purgatory) : 11/29/2010 6:03:05 PM (GMT-7)


Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1162
   Posted 11/29/2010 9:47 PM (GMT -6)   
Thanks for the update, David. Sounds like you're coming along.

It's good to hear that you're making progress, albeit gradually. Sounds like you're getting oriented to the new sensations and routines. I imagine you're right about the phantom sensations calming down over time. These post-surgical feelings are spooky sometimes.

I wouldn't worry too much about the standing or walking. Your weight limit upgrade is probably a pretty good sign that standing and walking will just be a matter of time too. It's remarkable to me how much progress you've made already.

Hang in there, heal up and feel better. And enjoy your PSA hiatus. I don't blame you; I'd take a break from that too if I were you.

Jonathan

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 11/29/2010 9:48 PM (GMT -6)   
Sounds like slow but steady progress David. Good to hear that you are puting weight back on. And yes you must have won the ED Lotto.
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
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
7month post SRT PSA 2.7

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/29/2010 10:02 PM (GMT -6)   
Thank you, Jonathan. This particular surgery, though it went well and seems to have accomplished its major goal of eliminating all the pain associated with severe radiation damage, has come with a big price. I still say, I grossly underestimated the severity and length of the recovery process. Mind you, I am not complaining. Life with out all that burning pain 24/7, elimination of hundreds of bladder spasms, and the pain of having the SP catheter in me for nearly a year is not missed by me at all. But its taking some mental adjustment, that things will never be the same for me. opening a valve every time I need to drain the urostomy bag is not the same as standing there and urinating like a normal guy. And I have to do that about every hour on the hour when I am awake. I have come a long way so far, and no new set backs, which is great. When I do get a new PSA reading, it would be lovely if it held steady during that 6 month period. We will see.

Michael, thanks too. On the ED front, the prior year, didnt matter that I didnt have ED, as I was in pain too much most times to even entertain wanting to have sex. Now, its getting to be a different story, lol.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 3072
   Posted 11/29/2010 10:11 PM (GMT -6)   
David,

You've been through a lot, but it sounds like things are going in a good direction. I am amazed, as you are, with the ED thing. That is great...

Question for you - I am still trying to gain like 5-10 pounds...I eat all the right foods, but it just seems tough to put them on. Any suggestions?

Thanks,
Jerry L.
Nov. 2009 Dx at Age 44
Dec. 2009 DaVinci Robotic Surgery
Jan. 2010 T3b, Gleason 9
Feb. 2010 Adjuvant Radiation

PSA History:
-----------------
Nov. 2009 4.30
Feb. 2010 <.05
May 2010 <.05
Aug. 2010 <.05
Nov. 2010 <.05

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 11/29/2010 10:19 PM (GMT -6)   
David,
I'm glad that you are making steady improvement and moving on with your life. Enjoy the Holiday season and hopefully you will top it all off with a good PSA report in January.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/29/2010 10:33 PM (GMT -6)   
Jerry, the Oncology Dietician from my hospital had me on a heavy Protein diet since this last surgery. Not talking about fatty, bad protein, but good protein. This was to compensate for all the rapid weight loss and muscle aprpothy I experienced. Most of the weight I have regained appears to be in my arm and leg muscles, which is a good thing right now. The first month after surgery, I couldn't tolerate hardly drinking or eating anything, and the problem was just getting any kind of calories in me. During the second month, I was able to start eating regular foods again, which has helped in my recovery. I never had trouble gaining too much weight pre-surgery, so not sure how to advise. If you eat enough Ho-ho's, cookies, potato chips, etc, you can gain lbs fast, lol. Not advocating that diet though.

Thanks Ed, we had a great Thanksgiving, first one I remember clearly in 3 years. Hoping to have a good Christmas too. Hope you do as well.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7082
   Posted 11/29/2010 11:27 PM (GMT -6)   
David,
 
Glad to hear that there is progress - I know patience is hard to come by after the last year or so, but keep it up!
 
GFMPH Weekend (south) isn't that far away -

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 11/29/2010 11:44 PM (GMT -6)   
David,

You really seem to be doing so much better. I am so pleased for you David. Before you know it you will be moping and doing windows again. :)

I really miss our chats. Wont be in the Chat room on Wed. This is crazy performance wk (Christmas Program) Rehearsal or program every night of the week.,

Stay well my firend. and 142 is correct GFMPH is not that far away. :)
'
Cajun jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 11/29/2010 11:44 PM (GMT -6)   
Anyone drink Ensure and Ensure Plus.
 
Sometimes I have some intestinal problems and I have found it helpful when I need to maintain my weight. Not sure how healthy it is, probably okay for once in a while
 
Mel

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/29/2010 11:55 PM (GMT -6)   
142 - still hoping to go to the LA convention of PC guys, so far, so good

jeff - really hoping to come, just dont want to jinx myself this far out

mel - i drank ensure shakes for the first 3 weeks after this last surgery, but none since
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 818
   Posted 11/29/2010 11:56 PM (GMT -6)   
Mel, I drank Ensure or something like that back when I had some dental work done and couldn't chew for a couple days. It's good stuff for keeping you alive in a situation like that.

Dave, I'm glad to hear you're making progress. I didn't want to say so before, but when my wife had that surgery it was very serious. But I figured they'd be better at it by now, 20+ years later.

You didn't ask, so I apologize if you don't want to discuss it--but I suppose you hook up to a larger bag at night. Wife strongly disliked the idea of doing that, so she trained herself to get up during the night. While this wasn't perfect, problems occurred less than once per year. Personally, I wouldn't mind a hook up to a bag. Some nights I don't have to get up, but others I get up 3-4 times.

DJ
Diagnosis at 53. PSA 2007 about 2; 2008 4.3
Biopsy Sept 2008: 6 of 12 cores pos; Gleason 4+3 = 7
CT & Bone scan neg
Da Vinci at City of Hope Dec 8, 2008
Rad prostatectomy & lymph node dissection
Cath out on 7th day, in on 8th day, out again 14th day after neg cystogram
Path: pT2c; lymph nodes neg; margins involv; 41 grams,
PSA 1/08, 4/09,7/09, 10/09, 11/09,2/10 <0.01, 10/10 0.1

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/30/2010 12:10 AM (GMT -6)   
dj,

no problem, i hook up every night with a regular full size catheter night bag. i use an adapter that comes with my "device" or the wafer/bag over the stoma. it snaps the bottom of the tap on the bag to the end of the catheter bag hose. there is no way i could wake myself up, because there is no sensation of urinating, and no nerves in the stoma, so you would never know if the bag was getting too full at night. i have hard enough time getting steady sleep, so i wouldnt want to add to disrupting it. my normal night output varies between 750ml and 2000 ml, so that would be a lot of trips up at night. if you let the urostomy bag get too flow, it can back flow, cause infections, and worse, the weight of too much urine can cause the wafer to leak. it sucks having to sleep on my back, with the catheter bag hose under one leg, but it beats the alternative and sure beats the misery i suffered for so long before the surgery.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 11/30/2010 5:57 AM (GMT -6)   
We all know the hare and tortoise story David. Slow and steady is very good. You've paid a big price but there is a major benefit in being pain free. Continuous pain means no quality of life...... now that that's gone for the most part you can cope with anything. Onward and upward, ol' mate.
Bill

Alegar
Regular Member


Date Joined Oct 2010
Total Posts : 91
   Posted 11/30/2010 8:42 AM (GMT -6)   
David my friend!

So glad to hear that you're getting better. I'm happy (and jealous) for you, pal!

No ED?.......darn!
Diagnosis:
July 1, '10
PSA 3.88
Gleason 3+3=6
2 out of 12 samples positive

Solution:
DaVinci Oct 1 '10, UNC Chapel Hill
Cath/JP Drain out Oct.16, '10

Personal Statistics:
Age: 54
Weight: 184 lbs.
Height: 6 feet

AIRBORNE ALL THE WAY!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/30/2010 10:22 AM (GMT -6)   
billy, that's the game plan, and i am sticking to it, and as usual, i have been 100% compliant to my doctor's orders, and that has helped. if i try to do too much, too soon, i will pay the price later

alegar: yeah, that is the miracle of my PC journey. open surgery, left nerve removed, right nerve left damaged, 6 corrective surgeries, 39 days of intense radiation, this latest major surgery, and a total of nearly 1 1/2 years on 21 catheters - and despite all that, never experienced even a moment of ED. The wee one works fine, works on demand, of course I shoot dry like any other surgery guy, and the big "o" last about 4x longer than it ever did pre-surgery, and much deeper rooted and more intense. not much to complain about there. now that i am out of the major pain zone, getting much more interested in using my special gift, lol.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2680
   Posted 11/30/2010 11:21 AM (GMT -6)   
Great news on  your progress, David.  I wonder if Santa will deliver that same "gift" to more of us guys this holiday season.  It would surely be the perfect gift for me AND for my wife.  :)

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/30/2010 12:24 PM (GMT -6)   
clock:

if i had the power to grant your wish, i would share it with every single guy out there. even my good uro/surgeon to this day, refuses to take any credit for this gift. he would like to know himself what made the difference. on paper, i should have Ed at least in some form.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 11/30/2010 8:32 PM (GMT -6)   
David
I am glad to hear you are improving so well. You have been through an ordeal and the knowledge you have shared with many of us newcomers is very much appreciated. You are the cornerstone of what Healingwell is all about, and I appreciate your being there for so many of us.
Stay well and blessed
Tom Taylor

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/30/2010 10:11 PM (GMT -6)   
Thank you, Tom, glad you are with us here too, and hope you are doing equally well.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 12/1/2010 4:10 PM (GMT -6)   
Glad to hear that you are doing so much better.
I saw an article the other day on the internet news that was going to send to you then forgot. It was about all the new airport screening. They told the story of one man that had the Ileal Conduit Surgery. When the TSA agent went to pat him down he tried to explain to them about the medical device. They didn't want to listen. Worse came to worse during the pat down and of course the connection came loose and well then they had to take him to a back room. What made the whole story so sickening was that he had no clothes to change into after getting wet from the leak that they caused!
 
Hope that never happens to you!

Take care,
 
Larry  

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/1/2010 6:05 PM (GMT -6)   
Thanks, Larry. That was a terrible story, saw it on the news. I am in an indentical situation as him as far as type of operation. While the "devices" stay put for the most part, I wouldnt want anyone pulling or patting down on mine either, it would make it come off or at least leak severely. I feel for the man's humiliation.

David
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

teallen
Regular Member


Date Joined Sep 2010
Total Posts : 38
   Posted 12/1/2010 6:35 PM (GMT -6)   
Congrats on your progress!!
Age 42 PSA 7.4 4+4 G8
Davinci Sept.8 2010
No incontinence issues but ED issues
1st post surgery PSA <.008
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