Feeling kind-of-guilty . . .

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DoingFine
Regular Member


Date Joined Sep 2008
Total Posts : 46
   Posted 2/13/2009 11:16 AM (GMT -6)   
Hi all

Because this forum seems open and forthright . . . I will "spit this out." I've been wanting to write this for a few weeks.

I did very well during my two months from dx to surgery, and very well post surgery (except for the "flap" which caused the reinsertion of the catheter)

The dx caught me totally by surprise, I was bummed out for about one week . . . until I took a different approach, took charge and phoned the Mayo Clinic.

Post surgery I was very aggressive. Sure, I sat around for a few days in the recliner, even slept there a few nights.

The catheter drove me nuts . . . I experimented with different underwear types, different means and mechanisms to hold the tube to my leg with a minimum of movement. (it was only a "tube" when I was mad at it!). I worked to find the proper method of keeping it lubricated so I could be as normal as possible.

Once I got that problem solved, I did what I could to pick up where I left off . . .

I was walking up to five miles at a time.

With the docs permission I started "jogging" up stairs at a local ski area, worked up to 15 laps of 100 stairs (yes, 1500 at a time)

I found I could lift and carry a few things if I was very careful about balance . . . I worked very hard to not stress my abs., or put any undue strain on my internal repairs. It was all about weight balance, and lifting carefully with my legs, not my back or abs.

Yes . . . at about day 26 I even carefully cut the grass. It was very easy if I went slow, steady and carefully. The only issue was turning the mower around at the end of the rows . . . (because balance was hard to find).

Post catheter I had almost no continence issues. Part of me thinks this is because of the bike riding I do. When you ride a lot, and ride "properly," the bike is actually controlled by your legs . . . not really by your hands on the handlebars.

I have had little erectile issues.

I was back on my bike at day 42 . . . rode >50 miles that day . . . and nearly 1000 before snow shut me down for the winter.

I realize what is right, acceptable and appropriate for me may not be right for you . . . and vice versa.

Why am I writing this? For two reasons:

1) I think we are all capable of quick recovery if we are fit, and if we maintain "not necessarily a positive, but certainly not a negative attitude."

2) Most importantly . . . I often feel guilty when I read the posts of others.

Thanks for listening,
Rich
Age at dx: 51 Age now: 52
Great health: Riding bike 200+ miles weekly; no symptoms
First PSA: 4.7 March 2008 Second PSA: 4.97 June 2008
Biopsy June 2008 Positive 5 of 12 cores T1c, Gleason 3+3, Bone scan: 7 July negative
RRP surgery 3 Sept 2008 at the Mayo Clinic: Rochester, MN, All clear
Catheter out 22 Sept 8:30 AM, catheter back in at 11:30, Catheter out 30 Sept (this time for good!)
Total continence, no erectile difficulties from day one (Cialis 10mg daily)
Back on bike 15 Oct. (42 days . . . with doc's approval)
Dec. 2 2008 psa Undetectable!


klondiker
Regular Member


Date Joined Feb 2009
Total Posts : 43
   Posted 2/13/2009 11:29 AM (GMT -6)   
Wow ! Don't feel guilty. It is rather an incentive for us all to get and stay in good physical condition. I think my fast recovery is due in part to a grandaughter who has mild autism and loves to walk - for miles. Since retirement several years ago she has put many miles of fast walking on me, keeping any extra pounds off.
Age - 55
2004 PSA 2.7
2008 PSA 5.8
Sept 2008 PSA 5.66
Oct 2008 PSA 6.67
Biopsy on 11/25/2008 cancer found in 10% of one core , gleason 3+3=6
open RRP done on 1/14/2008. Pathology showed 20% of prostate cancerous, gleason 3+3=6, contained in capsule
First post op PSA 2/10/09 - 0.07
As of 2/11/09 down to one or two pads per day


GarthK
Regular Member


Date Joined Feb 2009
Total Posts : 74
   Posted 2/13/2009 11:58 AM (GMT -6)   
Rich, I share a bit of your "guilt" feelings. While not as spectacular a recovery as yours, the catheter has been gone for only one week and I am no longer using any pads. I have a very infrequent, unexpected drop or two but nothing visible or even uncomfortable. I'm beginning to believe that surgery is an art as much as it is a science and maybe I just lucked out and found a real artist.

Rich, you're an inspiration for maintaining good fitness! To those taking a longer path, hang tough and I wish you the best recovery in the shortest time.

Garth
Vitae:
DOB: Q4'46, HT: 5'9", WT: 180
PC:
Biopsy: 12/08
Cores: 4 of 12+ positive
PSA: <2.5
DRE: Slight enlargement, one node
Gleason: 3+3
Surgery: RRP on 1/21/09
Catheter: 15 days
Pathology:
Adenocarcinoma occupying 5% of prostatic volume (right posterior aspect)
Gleason: 3+2
No extraprostatic extensions
Perineural invasion within prostate only
No angiolymphatic invasion
No seminal vesicle invasion
Clear margins
AJCC: pT2a


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 2/13/2009 12:58 PM (GMT -6)   
We rejoice with you and are encouraged by your excellent recovery. You have no reason to feel guilty. Thanks for encouraging others.

RB
Age 61 (now 62)
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA <.04
2nd Post PSA <.01 10/30/2008


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25369
   Posted 2/13/2009 2:10 PM (GMT -6)   
RIch, positive there's no reason to feel guilty. I think most of us know by now how much PC affects us differently, both with treatments, post surgery, and side affects, and PC doesn't play by the game book very often. When I hear of a great story like yours, I promise, no jealously, I rejoice and am happy for you. To me, every little victory here is a victory for all of us in the fight. And when there's a negative event, I feel I share in that too. I am happy for you. I marvel at all you have done post surgery.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 2/13/2009 2:21 PM (GMT -6)   
I've never felt guilty, about anything associated with the illness.  Though there's a lot of advice and commentary here, each of us is different and what one person experiences the next one in line may not.  There are few good comparisons.  I take care of myself and let others handle their own situations - without guilt.

Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (getting better, though)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0

 


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 2/13/2009 2:38 PM (GMT -6)   
Hey Rich, thanks for the post. Please do not feel guilty, I to agree that to some extent we can control our bodies ability to heal. I was at the hospital a few weeks ago and met a man my age with pretty much identical cancer, however I noticed a huge difference. I was bouncing off the walls with energy and enthusiasm and he was barely getting around. He was emotionally defeated. We all are effected in different ways. Us positive folks need not feel guilty however we do need to be a comfort and support to those that cannot get past the emotional aspects of having cancer. Together we can all make a difference.

peace and love
dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .06
Testosterone keeps rising, the current number is 156, up from 57 in May
cancer in 4 of 6 cores
92%
80%
37%
28%
 


chrisinmaine
Regular Member


Date Joined Aug 2008
Total Posts : 31
   Posted 2/13/2009 4:14 PM (GMT -6)   
Hey Rich, Sounds like things are going great for you! Congratulations! When it comes to guilt I always remember an AL Pacino line from Devil's Advocate. "Guilt is like a bag of bricks. All you gotta do is set it down!"
Age 51
March 08 PSA prior to biopsy 6.65
PSA caught in life insurance exam.
Completely asymptomatic.
April 08 Biopsy: Gleason Grade 3+4=7
Tumor in 5 of 13 cores
July 22, 08 Radical Robotic Prostatectomy
All nerves spared
Pathology: Margins clean, Seminal Vesicles negative for tumor
Gleason Grade 3+4=7 Percent Gleason Grade 4-20% no Gleason grade 5.
First post-op PSA scheduled for 10/08
Very minor incontinence since catheter removal on 7/29
ED assisted by low dose of Levitra. So far so good.
I feel very, very lucky.
First post op PSA 11/19/08 <.02 undetectable!


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 2/13/2009 4:19 PM (GMT -6)   
Hi Rich,

No need to feel guilty, and I hope you continue to a full recovery.

We are all different and the treatment we recieve varies. You have had a very good outcome thus far.

Please continue to let us know.

Scott
Diagnosed @ 48yo 04/07
focal, low volume tumor gleason 6
RRP 07/30/07 robotic
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 PCA3 negative
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 2/13/2009 4:33 PM (GMT -6)   
Wow Rich,, I am so very pleased for you, and also pleased that you posted such a valuable letter. I am a wife, and need to hear that from a guy. You helped a lot of people with that post...!! Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Forging ahead to health!

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