Its a roll of the dice with your life

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Gerbe
Regular Member


Date Joined Sep 2008
Total Posts : 42
   Posted 12/7/2008 1:17 PM (GMT -6)   
We've had a long leadup time, months, but surgery is approaching, 2 weeks off.  Time to make love to my wife twice, maybe three times more, but definitely fingers of one hand.  We can share this thing, and find laughter in it between the sensible preparation steps.  Supplies laid in.  Informed. 
 
Picked the best doctor I could.  Recognized by his peers as who they would send their loved ones too.  about 15 years in practice, so prime of his practice.  350+ da Vinci procedures, so meets experience criteria.  And staging wise, I am as low risk as it gets.  A bit of carcinoma in a couple of cores of a biopsy.  Gleason 6.
 
But its a roll of the dice. 
 
For certain, an operation with at least an overnight stay, a darned catheter for a week, out New Years Eve, off work for another week and then reassess.  I'm lucky, health insurance covers operation, and work will support me, though in kind of a flinty impatient way.
 
Carcinoma, odds are for organ confined, surgical margins clear, lymph nodes clear.  But about maybe a 1 in 20 chance of a surprise.  Aiming for the zero club, no biochemical return, but have to grapple with testosterone supplements and odds there too.  I worry here, that maybe odds are only 3 to 1 that I'll be in the zero club for a decade.  Don't have enough factual basis.
 
Continence, could be dry when the catheter comes out, or struggling up to a year, or even very unlikely something permanent.  Odds are best for incontinence for about 3 months, gradually declining pads and Depends and leakage and accidents.  And a high probability of a squirt now and then for the rest of my life.  The public face of the outcome, but for the person ranking behind carcinoma and sex.
 
Sex, best I can figure is about a 50:50 chance of regaining something just a notch down from where I'm at with some things changed, dry orgasms, dependency on Cialis (do that now). probably more stimulation required, but capable of intercourse, etc.  Anticipate vacuum pump and drugs, 'therapy' starting 6 weeks out, first embers after 3-6 months, what its going to really be like after a year.  But it can ratchet down from there pretty quickly. Prepared to face injections.  But real possibilities that it will be damaged to heartache proportions.  ED, loss of sensation, loss of desire, as one poster put it lovemaking no longer being a mutual exploration of intimacy but some sort of all about him getting over the hump with the loss of the woman's side of things.  Those are not odds I like, and I hope and pray. 
 
The trouble with all this is its like a run through an old Mario Brothers video game.  Fast forward through snapping dangers.  Odds for any one danger small enough, but many in sequence.
 
I am extraordinarily blessed.  I cannot control my life but I can influence this moment.  I choose to treasure it.  The other side will be what it will be.
The past is gone, the future yet to come.
This moment, here and now, is nothing less than the totality of existence.
 
Age 59
Mild DRE finding (hindsight unrelated) > biopsy
3/08 1st biopsy, 18 core. Path 1, HPIN and ASAP, 0.5mm 1 core.  Path 2, carcinoma
7/08 2nd biopsy, 16 core.  Path 1, 1 core carcinoma.  Path 3, 3 cores carcinoma
Urologist retired.  Referred to another Dr. in same practice, not experienced enough.
Robotic da Vinci sched 12/22/08, Univ of Washington Med Center, Dr. Ellis.


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 12/7/2008 2:56 PM (GMT -6)   
Good luck on your surgery. Congratulations for thoroughly understanding the outcome and how much it can vary before choosing it. I wish more would do that. It seems only sensible doesn't it? But I'm still amazed how many here will do whatever their first urologist recommends. Then come here to learn about what happens after. This is after all major surgery and just not a slight inconvenience one puts up with only for a couple or more weeks.
Diagnosed 10/08/07
Age: 58
3 of 12 @5%
Psa: 2.3
3+3=6
Size: 34g
T-2-A
 
2/22/08
3D Mapping Saturation Biopsy
1 of 45 @2%
Psa:2.1
3+3=6
28g after taking Avodart
Catheter for 1 day
Good Candidate for TFT
(Targeted Focal Therapy)
Cryosurgery(Ice Balls)
Clinical Research Study
 
4/22/08
TFT performed at University of Colorado
Medical Center at Denver Fitzsimons Campus
Catheter for 4 days
Slight soreness for 2 weeks but afterward
life returns as normal
 
7/30/08
Psa: .32
 
11/10/08
Psa.62
 
April, 2009
Final Biopsy scheduled to
complete clinical research study 
 
 
 


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 12/7/2008 3:04 PM (GMT -6)   

 

Hi Gerbe,

I'm new to this and am still getting over the initial shell shock trauma of diagnosis and, of course as one kind poster told me, I'm trying to take a sip from the firehose of info I am finding.

My reply to your post is a sincere and heartfelt...Good luck on your upcoming surgery! Both you and your family!

All the best!

Mikey 

 


 
Present Status: 5 of 8 biopsies positive for adenocarcinoma, December 3/08, both lobes.
Present Status: Tumour in lower right and upper right lobe.
Present Status: Tumour in lower left and central left lobe.
Present Status: Gleason Score 3+3
Present Status: Cancer 40%-75% on samples...don't have exact details yet...but will soon.
Present Status: recommended radical prostrate removal, open surgery.
Present Status: PSA 5.3 Nov 2007, PSA 7.3 June 2008.
Present Status: Married to beautiful wife for long time. Started going out 36 years ago.
Present Status: 3 great grown kids, one at home to finish college.
Present Status: Becoming 95% Scared Stupid (an improvement).


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 12/7/2008 4:35 PM (GMT -6)   
Hey Gerbe,

Yeah, good luck with your surgery.

Your recovery from incontinence and ED doesn't have to be as bleak as you make out. As you said some of us were dry as soon as the catheter came out and get their normal potency back quickly. Remember that those who experience this success probably don't post here. There are numerous routines to help you get over ED as you have found. You have to be willing to work at it till you find the right one for you. For me, sex is better now by far than before surgery. My signature tells what I use.

All of this seems unnatural now but as you go through the experience you will find a new normal. And it can be better than the old one...

Jim
Age 74. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
50 mg Viagra + 1000 mg L-Arginine + .03 cc Trimix = Excellent Results
PSAs from  1/3/07 - 7/17/08 0.00. 
Next PSA test on 1/28/09
Lung cancer dxed on 5/16/08.  Surgery on 6/25/08  T1N1M0 - Stage IIA  Finished 4 cycles of chemo on 11/7/08.
CT scan on 12/2/08 - in remission!!!
Next scan on 2/26/09.
"Patience is essential, attitude is everything."


coxjajb
Regular Member


Date Joined Nov 2008
Total Posts : 184
   Posted 12/7/2008 6:32 PM (GMT -6)   
Biker90 makes a good point. There are many positive outcomes for men that do not visit or post in this forum. Those men do not have issues and are, therefore, not seeking out the great insight and knowledge from participants in this forum. Wishing you the best in your surgery and a speedy recovery.
Age 50
Pre - Op PSA, 4.3
Gleason 3+4=7
Stage T1C
da Vinci Prostatectomy 8/1/08
No issues with incontinence since day 1 after catheter removal
ED, need a little help from Levitra
First post op PSA 11/11/08, 0.00


Gerbe
Regular Member


Date Joined Sep 2008
Total Posts : 42
   Posted 12/7/2008 6:57 PM (GMT -6)   
Thanks for positive replies. I always plan conservatively, which my wife calls pessimism, I call it prudent, but hey, potatoe potato. I am hoping for the best outcome, and all the odds are in my favor, and I will thank G-d no matter what the outcome.
The past is gone, the future yet to come.
This moment, here and now, is nothing less than the totality of existence.
 
Age 59
Mild DRE finding (hindsight unrelated) > biopsy
3/08 1st biopsy, 18 core. Path 1, HPIN and ASAP, 0.5mm 1 core.  Path 2, carcinoma
7/08 2nd biopsy, 16 core.  Path 1, 1 core carcinoma.  Path 3, 3 cores carcinoma
Urologist retired.  Referred to another Dr. in same practice, not experienced enough.
Robotic da Vinci sched 12/22/08, Univ of Washington Med Center, Dr. Ellis.


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 12/7/2008 7:26 PM (GMT -6)   
Good luck Gerbe... You chose the best...Don't worry about the future.....Good luck and let us know when you are back....D
Husband Pete
dx Jan 2001 age 67 gleason 4 + 3 PSA 16.5
seed implant and conformal radiation 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
Fistula operation 2/07 MSK
Many cystoscopies and ER visits with strictures
catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/07
AUS Operation at MSK Sept 8. 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


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 12/8/2008 12:06 PM (GMT -6)   
Even though I planned and thought through the side effects issue before surgery...it still to this day (2 months out from surgery) bums me out at times. I know I am not suppose to look back, but boy I sure do miss the days before surgery without the side effects. I know that things will progress in time and certainly are improving now, but I can't help be jeolous of those that gain continence immediately.

Good luck Gerbe, this post isn't made to make you think negatively...but sometimes a perspective from another persons feelings can be of help with the big picture. And by that I mean, if after surgery you struggle with those side effects...don't worry you won't be alone and it's okay to feel somewhat disappointed and have self pity in dealing with the side effects. Good news is that it most likely the side effects won't last very long.
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base)
Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1,2008
Gleason 7 (4+3) Staged pT2c NO MX
Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA Oct 08 <.05


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25381
   Posted 12/8/2008 12:18 PM (GMT -6)   
Les,

I agree with your sentiments to the letter. When dealing with PC, and its evil side affects, life won't ever again be gold dust and sunshine. The best part about being here at this site, is that I do not feel isolated or alone, or singled out. In my real life, here locally, I don't know a single person that is or has dealt with PC in any recent number of years, so its not like theres loads of people I can talk to or to console with. PC is a tough choice maker, knowing that you may end up in Depends for a long time or forever, and that in all likelihood, never have "normal" sex the rest of your life depending on your exact situation. There are still times that I play the "I wish I had tried radiation first instead of surgery" mind game in my head, but in my heart I know that, for me, I made the most logical and sensible choice to live way beyond my current 56 years on earth. My wife, for one, would attest that she would rather me be here with her at 80, then to be dead at 60 of prostate cancer. So these feelings I believe are common, and we all, men and their spouses, go through an intense and agonoizing range of emotions through their PC battles. We are, however, in this together.

David in SC
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerving sparing, 4 days in hospital, staples removed 11/24/8
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 12/8/2008 1:57 PM (GMT -6)   

David, if you are feeling isolated and would like to connect with some locals, an excellant support group that is local to you is USTOO.  They have a local group in Greenville, maybe one even closer to Easley.  I'm not sure where Easley is and my map prgroam is on the fritz right now.  

Here's the link, with a way to search for your local group, some info and contact info about them, and general information.

 http://www.ustoo.com/chapter_nearyou.asp


James C.
Co-Moderator- Prostate Cancer Forum
Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
Present- 1 year: ED- Viagra, pump continues, no response- Trimix .10ml x 2 weekly continues
Post Surgery PSA's: 3 mts-.04, 6 mts.-.04, 9 mts.-.04, 1 Year-.02.


hawkfan75
Regular Member


Date Joined Jan 2007
Total Posts : 165
   Posted 12/8/2008 2:26 PM (GMT -6)   

Gerbe,

Good luck on your upcoming surgery.  I guess I am that 1 in 20 who anticipated a good pathology report, but got the surprise.  However, one of the reasone I chose surgery was that I still had another bullet in the chamber - radiation with hormone therapy - to get any of those pesky PC cells still left behind.  Yes, the RT probably zapped any nerves spared, and there have been some side effects with the HT, but I'm passed the 2 year mark from diagnosis, and still pushing ZEROS.  I only have two Zoladex injections left - one tomorrow - so I can get passed that hurdle soon as well.  While I wasn't pleased at all about having to undergo more therapy after surgery, I tried to keep the attitude that Life is more important than some of the side effects, and I'll continue to make the most of it.  While I get envious of those who have great pathology reports, I consider myself fortunate, since there are many fighting a much greater battle than myself.

Keep positive, get through the surgery and start the healing process.  I'm sure you've read all the things on recovery, and will work hard at it, clearing each hurdle, one at a time.  Think of it like UDUB today, the location of your surgery.  We had a terrible season, but introduced the new coach this morning, and are looking forward to a much better season next year and into the future.


Age 57 at diagnosis (2006),  PSA 4.7 (up from 3.2 one year previous)
Biopsy November 8, 2006 1 of 10 cores positive 5% LEFT Side Gleason 3+3
Robotic surgery January 19, 2007
Post Surgery Pathology Stage T3a, Gleason 3+4, positive margins and capsular penetration RIGHT Side
Post Surgery PSA:  March 5, 2007:  0.01    5 month PSA  0.08
Adjuvant therapy began June 26, 2007 with Zoladex injection
Radiation began August 23, 2007, ended October 8
First post radiation PSA, December 18, 2007:  0;  March 2008 - still 0;  July 2008 - 0; Sept. 2008 - 0;
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25381
   Posted 12/8/2008 3:12 PM (GMT -6)   
James, Easley is just 10 miles west of the big city of Greenville. I will have to check that out, as I was unaware of any support group in or near my area, thanks.

David in sC
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerving sparing, 4 days in hospital, staples removed 11/24/8
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin


War-eagle
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 12/8/2008 3:15 PM (GMT -6)   

Gerbe,

It looks like you have it well reseached and the right mindset. You will do fine. Glad that you are here to share your story and draw upon all of the resources that this site has to offer. Friendship is number one. You just picked up a whole new bunch of friends. So, stay focused on your future and never second guess your decisions. We will all be here for you just as you will help all of us.

Be blessed and as I always end, WAR EAGLE, baby.

Walt 


Age: 55 ( still alive at 55)
PSA 43 7/2005
Biopsy 12/14 Gleason 7 & 9
Divinci 9/2005 - spread to bladder
HT - 10/2005 (Eligard every 6 months)
RT - 10/2005 (38 treatments)
PSA 0.12 to 1.9 2/2007
Bone Scan and CT 4/2007 Bone mets
Casodex 4/2007
Zometa infusions 4/2007
PSA 4.8 8/2007
PSA 6.34 12/2007
Radiation (15 treatments) started on bone mets 12/2007
PSA 6.72 1/2008
PSA 8.23 2/2008 - Starting prednisone for 30 days
PSA 14 2-29-2008 - start chemo on 3/12
PSA 12.82 3/1/2008 round one chemo
PSA 12.24 4/2/2008 round two chemo 
PSA 10.86 4/24/2008 round three chemo
PSA 10.4 5/15/2008 round four chemo - increase dosage next month
PSA 12.98 6/5/2008 round five chemo
PSA 13.63 6/26/2008 round six chemo
PSA 10.46 7/17/2008 no chemo
PSA 4.56 8/28/2008 no chemo, Zometa and 6 month Eligard shot
PSA 9.25 12/1/2008 start clinical trial
 
"I will persist without exception - I will find a way where there is no way"


Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2331
   Posted 12/8/2008 3:50 PM (GMT -6)   
Dr William Ellis (University of Washington) is one of the best prostatectomists in the business.  My urologist in Seattle recommended him on a short list  if I had opted for DaVinci.  I went with open surgery and everything went swimmingly. 


PSA quadrupled in 1 yr (0.6 to 2.5)  
DRE neg  1 of 12 biopsies pos (< 5%) 
Open surgery June 06 at age 57
Organ confined to one small area Gleason 5   
PSA's undetectable  < 0.1  

Post Edited (TimG) : 12/8/2008 1:53:09 PM (GMT-7)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/8/2008 4:12 PM (GMT -6)   
Hi Gerbe,
Sometimes you just have to bite the bullet and believe that you will do well. I understand where you are coming from, but my plumbing worked after surgery. It was later after radiation and hormone therapy that my problems with ED came about. Even showing improvement there too. The first six months to a year requires patience but even then, I have seen guys pop right back up and do great...no pun intended. So relax, get well, and stay positive!

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


Gerbe
Regular Member


Date Joined Sep 2008
Total Posts : 42
   Posted 12/8/2008 4:35 PM (GMT -6)   
Thanks for all replies!

Les and Dave, I don't really know why I posted what I did. I have been unusually lucky in having a lot of time to say 'goodbye' to the me on this side of the bridge, and I guess I tried to put down on paper what a rational person could expect on the other side. But I am a man of emotions as well and I do expect to have some regrets/what was thoughts. I will strive to keep foremost in my mind the blessings I have had (and they are many), and the joy of the moment. Thank you G-d, for allowing me to reach this place and this season, always. A war-eagle cry, Walt.

Hawkfan75, yes I chose surgery because I also want to have a bullet left in the chamber. I'm glad to hear how well that worked for you.

Tim G, glad for feedback on Dr. Ellis, good info is hard to find.

Thanks one and all. I expect to keep posting and receiving good advice here.
The past is gone, the future yet to come.
This moment, here and now, is nothing less than the totality of existence.
 
Age 59
Mild DRE finding (hindsight unrelated) > biopsy
3/08 1st biopsy, 18 core. Path 1, HPIN and ASAP, 0.5mm 1 core.  Path 2, carcinoma
7/08 2nd biopsy, 16 core.  Path 1, 1 core carcinoma.  Path 3, 3 cores carcinoma
Urologist retired.  Referred to another Dr. in same practice, not experienced enough.
Robotic da Vinci sched 12/22/08, Univ of Washington Med Center, Dr. Ellis.

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