A quick update on myself: Sunday afternoon

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Elite Member

Date Joined Oct 2008
Total Posts : 25393
   Posted 10/24/2010 1:03 PM (GMT -6)   
Its been a month and a day since my Ileal Conduit surgery.  I see my Uro locally in the morning.  The 5 1/2 days in the hospital were rough.  The first 2 weeks at home were tough, expecially fighting a raging UTI with fever, that was the lowest point in my recovery.
My BMs are back to normal after all this time, a miracle.  In the earlier weeks, all loose and extreme urgency issues.  Almost didnt make it a few times to the can.
Still on a bland but solid diet, avoiding all processed foods, still nothing spicy, no tomato based sauces, etc.  Not really needing the 'ensure'
any more.  Haven't had any sweets in over a month, and what is odd, not missing them.  Really listening to my body, my body knows what I need to eat.  Lots of lean protein is helping me the most.
Took 4 weeks to get all the "gas" out of my head and throat from being put under for so long.
Very little pain left related to surgery.  Average 3 advils a day, havent had any prescription pain pills for over 2 weeks now.  If  you remember, I was on loratabs for nearly a year prior to surgery due to the radiation damage in my bladder and bladder neck and all  the caths
I have no energy or endurance.  Lost a lot of muscle mass during this time, and now weight loss topped out at 35 lbs.  This week, and for 6 weeks, will  start in home PT, twice a week.  When I am through that, on waiting list to get into full time PT Oncology Rehab at my hospital, they estimate 6 months.
As a side note, I have began litigation against the radiation clinic, for what they directly caused.
With this stoma at my waist, I will forever pee with no control into a 2 piece device.  Its a complex world with millions of product choices.  We are having a hard time finding a "device" that last more than 2 days without leaking.  What you want, is one that can last
4-5 days.  Got 3 nurses helping, and one of the major mfg  Convatec helping.  Right now, afraid to leave the house even if I wanted to.
If I walk outside at all, I have to use a cane, lots of dizzy problem.  Still dont have driving rights back currently, wouldnt feel safe driving at the moment.
I will check in from time to time with updates.  Don't intend to post much on regular threads, I still have a long ways to go.  Did catch up on some current threads, and while most people seem to have good level of respect towards once another, I still see some arrogance and condenscending remarks with a few answers.  HW is patient to patient, sharing experiences and advice we have learned.  No one is a doctor or medical pro here, and some of the answers I have read almost imply some "special" knowledge.
As Zufus has said a million times. its a jungle out there.  If the experts can't agree on many of these points, nor the great researchers, who are we to think that we know more?  All our journeys are unique, and all our choices are personal and should be respected.
Good luck to all my brothers and sisters here at HW.  We do fight the same evil giant, PC.
Peace be with you,
David in SC

Post Edited (Purgatory) : 10/24/2010 2:37:43 PM (GMT-6)

Regular Member

Date Joined Aug 2009
Total Posts : 288
   Posted 10/24/2010 1:16 PM (GMT -6)   
David, great to see your post. Signifies a giant step in your recovery and a boost to all of us too waiting for news. Relax and heal!

Our best,

Cajun Jeff
Veteran Member

Date Joined Mar 2009
Total Posts : 4119
   Posted 10/24/2010 1:25 PM (GMT -6)   
Oh David, so pleased to see you update. Have been thinking of you so very much. Sounds like you are finely in the right direction. So happy to hear you are off the pain meds. Life is a bit different when you off of them. Now to gain some strength and a bit of muscle mass back.

Our love to You and Peg.

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

Forum Moderator

Date Joined Jan 2010
Total Posts : 7078
   Posted 10/24/2010 1:41 PM (GMT -6)   
Great to hear from you, and glad that there is progress. I hope that the basic improvements will give you a good start for bigger steps.
Hang in there. My best to you and the family.

Veteran Member

Date Joined Sep 2010
Total Posts : 1162
   Posted 10/24/2010 3:26 PM (GMT -6)   

It's good to hear from you again, even if it's not all good news. Hang in there; I have to believe it gets better from here.

I hope you keep checking in occasionally to let us know how you're doing and give us some of your hard-won perspective. Meanwhile, we'll try to play nice in the sandbox.


Veteran Member

Date Joined Oct 2006
Total Posts : 1211
   Posted 10/24/2010 3:35 PM (GMT -6)   
Hi David. It's good to hear from you again. It seems that you are on your way
to feeling better than you have for a very long time. It will, no doubt, take
some time for you to get used to your new equipment and to regain your strength and a bit of weight. Good luck with the legal action against the radiation clinic. They should not be allowed to get away with ruining peoples health the way they did with you.
Take it easy for a bit and keep us informed on your journey.
All the best to you.

Born 1936
PSA 7.9, Gleason Score 3+4=7, 2 of 8 positive
open RP Nov 06, T3a, Gleasons 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; at SRT Start=0.1, Salvage RT completed (33 days-66Gy) 19 Dec 08
PSA: in Jan 09 =.05, all tests to date (Jul 10) <.04

Post Edited (Magaboo) : 10/24/2010 2:38:05 PM (GMT-6)

Veteran Member

Date Joined Nov 2009
Total Posts : 7269
   Posted 10/24/2010 4:23 PM (GMT -6)   
Nice to hear from you. I hope your recovery speeds up from here. What a grind.
Glad you are now pursuing the radiation clinic. By the time things get moving on that, hopefully you will be back at full strength with energy to carry that out.. Those bast----s!
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .
Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64
Surgery: Dr. Menon @Ford Hospital, 1/26/10.
Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- in progress. First post-op PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. 9/21/10--0.06

Veteran Member

Date Joined Feb 2008
Total Posts : 1858
   Posted 10/24/2010 5:32 PM (GMT -6)   
David it was great to see you drop back for a quick visit and read that you are very slowly on the mend. Hey don't forget you have had the crap kicked out of you for a long time now so is is any wonder your body feels like it's been hammered and put through the mill. Although we all miss you, you stay away and forget other's problems for a while and concentrate on YOU ........ so far as the litigation goes, give 'em hell. A victory on that front won't undo the damage they caused but may make your life a bit easier. Quite apart from the emotional and physical trauma they inflicted, they also prevented you taking up that pretty good job offer.
Take care and a speedy recovery,

Regular Member

Date Joined Apr 2010
Total Posts : 189
   Posted 10/24/2010 5:54 PM (GMT -6)   
David you have gone through so much. I hope the worst is over for you.
Age 68 weight 185 height 6'
Samples taken 4/19/2010 sent to Bostwick
3 out of 12 samples cancer
1) gleason score 3+3 involving 65%
2) gleason score 3+3 involving 65%
3) gleason score 3+3 involving 10%
PSA 3.5 Mar 19
PSA 2.5 Apr 4
Bone scan clean CT scan clean
Da Vinci 8/24/2010, rescheduled to 8/26, now Oct 12th
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Veteran Member

Date Joined Apr 2008
Total Posts : 1382
   Posted 10/24/2010 6:09 PM (GMT -6)   
I think about you every day David thanks for updating us. Get some rest my friend

peace to you
My PSA at diagnosis was 16.3
age 47 (current)


My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
I was on Lupron, Casodex, and Avodart for two years with my last shot March 2009. I am currently (7-22-2010) not on any medication.
My Oncology hospital is The Cancer Treatment Center of America in Zion IL
PSA July of 2007 was 16.4
PSA May of 2008 was.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11
PSA Jan 15th 2010 is .13
PSA April 16th of 2010 is .16
PSA July 22nd of 2010 is .71
Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores

Veteran Member

Date Joined Apr 2007
Total Posts : 823
   Posted 10/24/2010 6:32 PM (GMT -6)   


Good to hear from you and hope you are on the mend.



age at dx 54 now 58
psa at dx 4.3
got the bad news 1/29/07
open surgery Duke Medical Center 5-29-07
never more than 2 pads
ED is getting better
the shots work great, still can't give them to myself
three years of zero's
Retired again after 36 years February 1, 2010

Jerry L.
Veteran Member

Date Joined Feb 2010
Total Posts : 3072
   Posted 10/24/2010 7:13 PM (GMT -6)   

I'm sort of a newbie to HW but have checked in over the past few months. Every time that I did, I would see entries by this guy name Purgatory. It didn't take me long on this site to realize that you are well respected and many people care about you.

All the best for a speedy recovery. Someday you'll have to explain why you chose that name, but I think I get it.

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

PSA History:
Nov. 2009 4.03
Feb. 2010 <.05
May 2010 <.05
Aug. 2010 <.05

Elite Member

Date Joined Oct 2008
Total Posts : 25393
   Posted 10/24/2010 7:16 PM (GMT -6)   
thanks one and all, going back into hiding again, will report again at some point soon
jerry, been using purgatory name for years and years, nothing to do with my health or PC.  i am a Catholic

Post Edited (Purgatory) : 10/24/2010 6:19:19 PM (GMT-6)

Regular Member

Date Joined Dec 2009
Total Posts : 348
   Posted 10/24/2010 7:50 PM (GMT -6)   
Good to hear from you David,
Best of luck,
Age 52
PSA 5.5 june 09
biopsy july 09 gleason 3+3 = 6 5% and 50% in 2 of 12 cores
robotic prostatectomy nov 7 prostate weight 45gm
path report gleason 3+4 = 7 (yukk)
clear margins

post op psa 22/12/09 0.04
09/04/10 <0.03
09/07/10 <0.03
21/10/10 <0.03

no incontinence after 7 days
total ed, good erection using the pump

Veteran Member

Date Joined Jan 2010
Total Posts : 2845
   Posted 10/24/2010 7:54 PM (GMT -6)   

Worried Guy
Veteran Member

Date Joined Jul 2009
Total Posts : 3739
   Posted 10/24/2010 8:06 PM (GMT -6)   
We missed you. I'm glad you posted and the infection has passed. Hopefully things will settle out for you. After a month of reduced activity, it's time to start building endurance again.
That will be hard, but worth it.
Good luck.

Ed C. (Old67)
Veteran Member

Date Joined Jan 2009
Total Posts : 2460
   Posted 10/24/2010 8:13 PM (GMT -6)   
Glad to know that you are feeling better and progressing toward full recovery. You have been on a long and difficult journey. We are all hoping for your full return to HW. Best of wishes.
Age: 67 at Dx on 12/30/08 PSA 3.8
2 cores out of 12 were positive Gleason (4+4)
Davinci surgery 2/9/09 Gleason 4+4 EPE,
Margins clear, nerve bundles removed
Prostate weighed 57 grams 10-20% involved
all PSA tests since (2, 5, 8, 11, 15, 18 months) undetectable
Latest PSA test (21 months) .005

Veteran Member

Date Joined Dec 2008
Total Posts : 818
   Posted 10/24/2010 9:33 PM (GMT -6)   

Good to hear from you, though I'm sorry you're not doing better.

If the appliance problem is that it comes off, it does take some skill to use just the right, minimal amount of adhesive. But if you have a good nurse, he/she will know that.

Good luck.

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

Veteran Member

Date Joined Jul 2009
Total Posts : 1267
   Posted 10/24/2010 10:16 PM (GMT -6)   
David, to say I'm pleased to read a post from yourself would be the understatement of the year! And, I'm a million gazillion (as an accountant, I know you can deal with those numbers) times as happy to learn that you're, as they say, "coming along."

I think of you often and I'm delighted to hear that you're making progress ---- keep this up and you'll be ready for spring training for some baseball team.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02

Regular Member

Date Joined Jun 2009
Total Posts : 131
   Posted 10/25/2010 12:42 AM (GMT -6)   

Thanks for the update.

Rest well, my friend.

Regular Member

Date Joined Mar 2010
Total Posts : 208
   Posted 10/25/2010 10:11 AM (GMT -6)   

Missed you here at HW and was happy to see an update from you. Been thinking about you and sending positive thoughts your way-hope the worst is over for you.

Kind regards,
Husband diagnosed 3/10
Age 56, PSA 4.7, free 7.6%

Biopsy 5 of 10 cores positve-all right side-25% to 57%
Gleason 6
DaVinci surgery with Dr. Vip Patel scheduled 8/9/10

Post Op: Gleason 3+4=7
Negative surgical margins and lymph nodes
No seminal vesicle and angiolymphaic invasion
perineural invasion present
Both nerve bundles spared
No ED or incontinence
6 wk. PSA .01

Regular Member

Date Joined Mar 2007
Total Posts : 460
   Posted 10/25/2010 10:12 AM (GMT -6)   
so glad you had some time to let us know how you are doing.  Glad to hear you are feeling better.  Think about you all the time, we started around the same time and think of you as a friend that tells it like it is but respects the opinions of others.

Elite Member

Date Joined Oct 2008
Total Posts : 25393
   Posted 10/25/2010 10:57 AM (GMT -6)   
thank you one and all for your kindness

update: monday

met with uro
no driving for 2 more weeks
weight limit still 5 lbs, then it will be increased to 10 lbs
first PT session to start in an hour
uro was pleased with progress, considering what I have been through for 2 years.
was somewhat shocked at my weight loss, but even that has stabalized
he said it ended up being a difficult surgery, and he's very experienced with them.
all and all, a good visit

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 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

Veteran Member

Date Joined Jul 2010
Total Posts : 3887
   Posted 10/25/2010 11:17 AM (GMT -6)   
Hello Dave..

How much are you walking? It's REALLY important ( if you are permitted to do it) to get out and walk around the block once or twice a day..You gotta get things moving and working again. After what you have been through, it will be a long hard grind to get back to "normal'....You need to get your daily calorie intake up to 4000 or more until your weight gets back to an acceptable level..I know how you must feel...Just moving off the heavy pain drugs will make you feel edgy and crappy for a couple of weeks....Good luck with everything you have going on....

Elite Member

Date Joined Oct 2008
Total Posts : 25393
   Posted 10/25/2010 6:46 PM (GMT -6)   

i dont think you understand my condition. a month after surgery, i can barely walk 50 ft to my mailbox with a cane. if i am on my feet more
than 5-10 minutes my back aches bad. i can only life a max of 5 lbs. 4000 calories a day? are you kidding, i hope. still on bland diet,
tolerating food a little better, probaly only eating 1/3rd my normal portions. lots of liquids of course. i quit the loratabs cold turkey after
a year of steady use, no ill effects, no problems. considering all i have gone through and still going through, i remain calm and peaceful and passive.

this is a long haul recovery, baby steps. started physical therapy at home today, twice a week for some time ahead, until i am well enough to get into oncology rehab program at hospital. doing the best i can
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 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.
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