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glabers
Regular Member


Date Joined Nov 2008
Total Posts : 31
   Posted 3/14/2009 2:43 PM (GMT -7)   
Hi folks, been about a month since I last posted, been real busy. So, I got my 2nd PSA test about a month ago, at about 10 weeks post surgery. I was glad to hear it went from .11 at 6 weeks to .04 at 10 weeks, considered undetectable by the lab, still no zero club, but I'm hopeful. Got another test in 2 weeks... c'mon ZERO!

Anywho, incontinence persists but getting better I think. Wearing a maxi-pad all day, and a depends at night for security. I went out last weekend, drank many pints, by 1:00 am the maxi was wasted and the pants were soaked. Imagine? I really didn't care, was having too much fun with wife & friends. I continue to be hopeful. I simply can't get into a routine of kegels, which I don't think is helping. Do they really help? I can't remember to do them.

The ED issue is disappointing. I had a few positive episodes not too long after catheter removal, but it seems to be diminishing. My walk around schmekal is way reduced. There's just seems to be no blood flowing. I tale a half of cialis every 4th day as prescribed but not much of a response. A few time I felt I had a decent enough erection to penetrate, but as soon as assumed the missionary mount I started leaking urin.. killed it for me. Had a few of those. JO is not much better, but I can achieve an orgasm with a semi, like 50 or 60% eretion. I do okay with my wife's oral assistance too. I seem to get most of a semi just as I'm orgasming. I could go on and on, but you all get the gist.

So, how am I doing? Any words of advice or encouragement? Thanks in advance.

Dan
Diagnosed:  8/24/08, age-47
Father died of prostate cancer at age 72
PSA 1.5 early 2007, 4.5 mid 2008, all remedies tried & reduced to only 3.2, uh oh.
Biop - 2 positives of 20 samples
Gleason - 3+3
RRP - 11/13/08 via Da Vinci by Dr. David Samadi, Mt. Sinai Hosp. NY
Post op biopsy - 75% of samples positive for cancer, Post op Gleason 3+4
some lymph Nodes tested, all negative
all nerves spared - I'm told
Catheter in for 1 week, using 1 pad a day. 
 
 
 
 
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 3/14/2009 2:49 PM (GMT -7)   
Congratulations and Welcome to the zero club. Yep, that's right. The second generation test results of .04 is the same as a zero. At 10 weeks , that's gonna be as low as you can go with that test, I bet.
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- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 3/14/2009 3:48 PM (GMT -7)   
glabers,
Nobody ever actually gets a zero reading. PSA testing equipment even at the ultrasensitive level has lower limits of detection. Currently PSA below 0.003 cannot be detected (i.e if your true PSA was .002 it would not be found by the test.) Additionally test results at such low levels (below say .05) are variable even if the actual very low amount of PSA present does not vary. You are undetectable, known here as zero. so congratulations are the order of the day yeah yeah yeah. ED even with nerve spaing surgery can sometimes take a while to recover. Way to go,
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25353
   Posted 3/14/2009 4:17 PM (GMT -7)   
congrats, glabers, whether you realize it or not, you are well into the Zero Club, and I hope it stays that way forever for you.

the continence story sounds about normal for the length of time, though that varies so much from guy to guy.

the ED part, sounds like a mixed bag, like many here, but it hasn't been that long. know you probably get tired of people telling you to have patience, but it has only been 10 weeks since a very major surgery.

i hope you keep improving, nice to here from you again.

david in sc
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 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, 6 month on 5/9
 
 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 3/14/2009 6:18 PM (GMT -7)   
I think you are doing very well.. You are only a short while out of major surgery to a vital part...! Keep yourself positive and cheerful..That will help you AND your wife more than anything......Continuing good luck! 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
Hip replacement total success..pain gone!!
PSA .7 2/10/09


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/14/2009 10:08 PM (GMT -7)   
Dan,
I have to agree with the others, you are doing great! I would be pleased with those numbers and so should you be. Keep up the great healing and stay well...

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 201
   Posted 3/15/2009 6:11 AM (GMT -7)   

It took me almost a year following surgery to obtain a useable erection. You're way ahead of where I was at 4 months.

Patience.  It will return.



Age:54
PSA 5/22/06: 5.6
DaVinci surgery: 9/14/06
Gleason: 3+3
Organ confined, clean margins.
Both nerve bundles spared.


glabers
Regular Member


Date Joined Nov 2008
Total Posts : 31
   Posted 3/15/2009 8:38 AM (GMT -7)   
Thanks Guys! I just did my own math, and it's been 4 months actually, but everything still applies.

The ED is my biggest concern. It just feels like the surgery was so long ago, and so I'm looking for myself to be where I was in all respects; health, strength, virility, ability, etc.. but it aint like that, obviously. Sometimes, someone says, "how are you feeling"? I say, "fine, why"? Then I realize they're talking about my surgery. I think to myself... "Oh yeah, that". So, yeah, it hasn't been long at all. I gotta keep remembering that. My wife is being great with the ED matter. A model partner in understanding. Hopefully, I can thank her one day soon with a mind blowing mack-daddy boff session :)

I'm also happy as a pig in sh.. to be in the zero club, which is the main thing.
Diagnosed:  8/24/08, age-47
Father died of prostate cancer at age 72
PSA 1.5 early 2007, 4.5 mid 2008, all remedies tried & reduced to only 3.2, uh oh.
Biop - 2 positives of 20 samples
Gleason - 3+3
RRP - 11/13/08 via Da Vinci by Dr. David Samadi, Mt. Sinai Hosp. NY
Post op biopsy - 75% of samples positive for cancer, Post op Gleason 3+4
some lymph Nodes tested, all negative
all nerves spared - I'm told
Catheter in for 1 week, using 1 pad a day. 
 
 
 
 
 


skapod
Regular Member


Date Joined Nov 2008
Total Posts : 35
   Posted 3/15/2009 10:27 AM (GMT -7)   

Hi Guys,

Glabers' wife here, thank you for all the supportive posts.  I think he's doing great for the amount of time it's been since surgery.  I keep telling him that, but hearing it from people who have been through it is more encouraging.

Hope you are all doing well.  :-)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/15/2009 2:01 PM (GMT -7)   
You both are most welcome!
A great example of why such a site exists from both sides of the fence. The fact is my Ruthie has been a rock and a foundation in my healing. Our intimate lives have improved but not the sex lives if that makes any since. But my reasons are not the same. After surgery we were able to get that part at least to a point it was possible. But unfortunately additional therapies have put a halt to things, at least for the time being. But we are doing great. And most importantly, I am doing well in the fight. And Glabers as well...LOL though he has made a public promise and the pressure's on....lol.

Peace and love to both of ya! May all your wishes come true!

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


glabers
Regular Member


Date Joined Nov 2008
Total Posts : 31
   Posted 3/19/2009 6:13 PM (GMT -7)   
Tony; I get what you're saying. I re-read your stats, and can see what you went through, and continue to go through. An amazing partner is critical, and you and I appear to be blessed in that department, as well as many on this board. You, I think, have a very positive outlook on life, which will pay you dividends for life. Thanks for the kind words
Diagnosed:  8/24/08, age-47
Father died of prostate cancer at age 72
PSA 1.5 early 2007, 4.5 mid 2008, all remedies tried & reduced to only 3.2, uh oh.
Biop - 2 positives of 20 samples
Gleason - 3+3
RRP - 11/13/08 via Da Vinci by Dr. David Samadi, Mt. Sinai Hosp. NY
Post op biopsy - 75% of samples positive for cancer, Post op Gleason 3+4
some lymph Nodes tested, all negative
all nerves spared - I'm told
Catheter in for 1 week, using 1 pad a day. 
 
 
 
 
 


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 3/21/2009 8:47 PM (GMT -7)   
Glabers: Remember, you are 4 months into a one year healing process. Sounds like you are doing pretty well.

On the ED side, my doctor has had me on 1 Cialis 2 twice a week from the get-go. I'm not sure about your one-half once every 4 day thing. As I have said before, I am constantly amazed at the different information we all get from different doctors across the country.

I got a pump a couple of months ago, which I use irregularly (if I was more disciplined with anything I would probably be further along). I am 10 months post-op and I am dangerously close to having a full, useable erection. So hang in there, it usually gets better.

Good luck,
kcragman
Age: 53; 52 at DX
March 2006: PSA 2.5
Dec 2007: PSA taken for insurance application. I did not see the results until late
Jan '08 - after I was rejected. Their lab said PSA 4.5.
Feb 2008: PSA 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were
cancerous and the 6th was suspect.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.

Post op: Gleason 9 (4+5). 15% of prostate involved. Stage: pT3a. Negative margins. Lymph node and nerve samples taken, and appeared to be cancer free.

July 2008: PSA at 7 weeks was undetectable.
August 2008: PSA at 14 weeks (3 months) was undetectable.
Nov 2008: PSA at 6 months was undetectable.
Feb 2009: PSA at 9 months was undetectable.


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 3/24/2009 4:33 AM (GMT -7)   

Greetings, Dan and Mrs. Dan.  Just an affirmation of what others have said here and that is I wouldn't be where I am today without a supportive wife both before and after surgery.  It is obvious you are a supportive couple and will make it through this trial/tribulation. 

For what it's worth, I was doing pretty well in the ED department fairly soon after surgery.  My doctor had said to take Cialis or Levitra and he gave me samples of each.  When I was able to function so soon after surgery, I didn't take the drugs and in hindsight that was a mistake.  I never got totally back to full function.  Now I take the ADC version of a 20mg Levitra 2 times a week and am ready to go when needed.  Of course it takes a good bit of help from my wife, but that's a good thing! 

It's still early yet and I'm sure with the 2 of you working on it together you will soon see the desired results.  Just remember that after surgery lovemaking is different - not worse just different.  In many respects the intimacy is much better and we are closer than ever.  All things considered I would just as soon have not had prostate cancer, but since I did have it we choose to look at the bright side and see all the good things that have happened. 

Keep up the good work.  David


Age 55
Diagnosed Dec 2007 during annual routine physical
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 positive with 2 marginal
Gleason 3 + 3 = 6
RRP 4 Feb 08
Both nerves spared
Good pathology - no margins - all encapsulated - Gleason 4 + 3 = 7
Catheter out Feb 13 - wore pad for couple of days - pad free Feb 16
Great wife and family who take very good care of me


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 3/24/2009 7:56 AM (GMT -7)   
As someone who is about 6-months post-op now (me), your progress sounds good. ED, incontenence and other issues apparently take time to resolve themselves and each of our bodies is different - so just stay positive and thankful that all has gone well thus far.

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

 

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