two years later...the journey still unfolding

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henry5
Regular Member


Date Joined Jul 2008
Total Posts : 24
   Posted 8/8/2010 10:38 PM (GMT -6)   
Hi Guys,
 
Sorry I havent spent  much time here for what seems like an age. I think last time I posted something was a cry for help?
 
I can say to anyone who is here for the first time that from the time of my diagnosis to post surgery this site became one of the most important resources I had at hand. The opportunity to read, write and share experiences is vital...make sure you keep coming back.
 
Things do begin to turn around, life takes on new directions...
 
I had a disasterous 15 months from the period six months out from surgery - financial and personal. Neglected my health and self. (Stopped doing pelvic floor exercises - DO SO AT YOUR PERIL!!! I'm working my way back, but the ability to hold just slips away from you, so keep them up).
 
Then somehow, things started to fall into place. Business took off, a son came to live with me...an absolutely disasterous relationship ended and a new one began.
 
This was probably the last piece of athe puzzle. Started an intimate relationship about month ago, after an absolutely disasterous one (this ended three months before and had basically shredded 15 months of my life). I had given up on being capable of what I believed was 'normal' sexual activity...gave up on injections, pills etc... everything was too hard.
 
Anyway, it's been a breath of fresh air. Everything falling into place.
 
Been using trimax (injections) twice a week, great results. The key though has been the intimacy, the sex a bonus.
 
In June just gone I had my first morning 'woody' in two years. Woke up, there it was...
 
Used half a 'viagra' 100mg last weekend, good results with penetration. Next morning, about five hours later, a 'woody'. Still using injections.
 
I suppose school's out on the final results, but the journey is the most important thing. Never forget that everything that's going on around you affects your capacity to deal with PC and its aftermath. Keep all in perspective.
 
I had neglected bloods, have my first in a year tomorrow. Here's hoping. :)
 
Anyway, to one and all, thanks for simply being around and the space to write this...
 
John

Age : 45
 
Nerve Sparing Rad. Prost: 3 July 2008
 
PSA: 3.2 (had been high for four years)
 
Gleason : 3+3 = 6
 
T1 .1cm diameter, right apex. Contained, excellent clearance.
 
First Post op PSA: 18 August 2008
 
Continence: Discovered my pelvic floor, continence was great day one...wore pads for insurance, no pads from day five after catheter removal (had a few small stress leaks).
 
Potence: A work in progress...

Jakester
Regular Member


Date Joined Aug 2009
Total Posts : 285
   Posted 8/8/2010 10:51 PM (GMT -6)   
John, thanks for checking back in and very pleased there are so many positive events recently to report. I bet that psa test will be another one to write about so let us know.

Our best to you,
Jake
Diagnosed 8/2008 Pre-op psa 4.2, Age 60 at dx
7 of 12 biopsies positive 3+3
DaVinci LRP 11/08
Post Op pathology clear margins, confined to prostate, absent extraprostatic extension, vascular or perineural. Gleason 3+4=7, 5-10% of 4 and location in right mid-gland.
3 month psa .1 2/09, 6 month .1 5/09, 9 month .2 8/09
broke ankle bones 6/09
9/21/09 Bone scan clear, psa still .2
11/12/09 chest xray was clear, psa however up to .3,
01/05/10 psa still .3, radiation setup done with tats, 01/19/10 started 39 sessions 70.2gy, psa at 6th week salvage IMRT up to .4
Post SRT psa at 10 weeks (5/31/2010) down to .2

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 8/9/2010 5:12 AM (GMT -6)   
Nice story. Life is a never ending rollercoaster..
Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 8/9/2010 6:02 AM (GMT -6)   
John so nice to see things going in the right direction for you. Congrats on the WOOD!

Cajun jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1 pre cancer core
10/08 Nerve-Sparing open radical
Surgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clear

3 month: PSA <0.1
6 month: PSA <0.1
10 month:PSA <0.1
1 year: PSA <0.1
16 month:PSA <0.1

ED - Started Cialis at 3 months, tried all 3, 6 months added pump, 9 months Tried MUSE (YUCK) Bad experience.
1 year mark Found new Urologist visit was at 14th month post surgery
Started Injections, Caverject! (Success)
17 month: ED making improvements : Oral Meds gets me 85%

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 8/9/2010 7:30 AM (GMT -6)   
JOHN - congrats on holding on and being able to see ... the light at the end of the tunnel / the forest for the trees... and turn your life around -depression and self-neglect are not topics often covered here at HW - it is still part of a shame cycle we inherit from society and our upbringing.
-here's to a good PSA reading - to continued growth and enjoyment with your new relationship - to a more secure sense of family and contentment.
-all the best.
hugs
BRONSON
.................
Age: 54 - gay - with common-law spouse of 13 years, Steve - 60
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - June/2010 -have trimix - tried it twice - Aug 2010 -just lacking motivation right now
Incontinence: Feb 2010- 3-5 pads/1-2 clothes changes/day- March 3, 2010 - week 14 after surgery -finally seeing improvement - March 29- incontinence better - 1-2 pads a day - one pad at night - May 25 - 1 pad during day - 1 pad at night for security (barely needed at all) - stress incontinence at work - lifting trees and shrubs - August 2010 - still at one pad for day and one for night - primarily for hygiene and security - still having good and bad days due to stress and what I have consumed.
location: Peteborough, Ontario, Canada
Post Surgery-PSA: - April 8, 2010 - 0.05 - I am in the ZERO CLUB - hooorah!
Next PSA - October 8, 2010 - TBA -
............

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 8/9/2010 7:33 AM (GMT -6)   
John sounds like you have had many ups and downs, no pun intended, but good to see thing falling into place. Life is like that sometimes, but it sure is nice when the calm marches in.
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 Atlanta, Ga
Catheter out after 10 days
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, 6 1/2 month psa.5 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael

Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 8/9/2010 3:31 PM (GMT -6)   
Hi John,
 
Congrats on getting yourself together and go on with life. You're way to young to give up on it and you have many things to live for. Thanks for sharing. Sure hope that the next PSA test will add to your encouraging journey.
All the best you.
 
Mag

Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 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; 3 days before Rad Start=0.1
Salvage RT completed (33 days - 66 Grays) on the 19th Dec., 08.
PSA in Jan., 09=0.05; July 09 <0.04; JAN 10 <0.04; Jul 10 <.04

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/9/2010 3:53 PM (GMT -6)   
John,

Sounds like a bad story is changing to a good story, one piece at the time. Hoping now that when you get your PSA checked, it will still be a big fat zero. You have been through enough.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin

Incontinence: 1 Month ED: Non issue at any point post surgery, no problem post SRT
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, next test 11/10
Latest: 7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped 9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4, Caths #11 and #12 ,Cath #11 - 21 days, Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, Cath #18 - 13 days, Cath #19 - 17 days, Total Blockage, Cath # 20 - 7/19

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/9/2010 9:12 PM (GMT -6)   
John,

Thanks for the nice report. I hope things continue to go well, from now on.

Barry
Surgery: Da Vinci; July 31, 2007; 54 on surgery day;
Pathology: PSA: 4.3; Gleason: 3+3=6; T2a; Confined to Prostate;
Post RP PSAs: 09/'07 <0.04; 12/'07 <0.04; 03/'08 <0.04;
06/'08 <0.04; 12/'08 <0.04; 06/'09 =0.06; 09/'09 <0.04; 12/'09 =0.05;
3/'10 <0.04; Latest PSA 6/'10 <0.01

henry5
Regular Member


Date Joined Jul 2008
Total Posts : 24
   Posted 8/15/2010 10:29 PM (GMT -6)   
Thanks all for your words and support. A great family you are....:)
Age : 45
 
Nerve Sparing Rad. Prost: 3 July 2008
 
PSA: 3.2 (had been high for four years)
 
Gleason : 3+3 = 6
 
T1 .1cm diameter, right apex. Contained, excellent clearance.
 
First Post op PSA: 18 August 2008
 
Continence: Discovered my pelvic floor, continence was great day one...wore pads for insurance, no pads from day five after catheter removal (had a few small stress leaks).
 
Potence: A work in progress...

henry5
Regular Member


Date Joined Jul 2008
Total Posts : 24
   Posted 8/17/2010 4:59 PM (GMT -6)   
shot in a new post.

bloods all clear..<.01. phew.
Age : 45
 
Nerve Sparing Rad. Prost: 3 July 2008
 
PSA: 3.2 (had been high for four years)
 
Gleason : 3+3 = 6
 
T1 .1cm diameter, right apex. Contained, excellent clearance.
 
First Post op PSA: 18 August 2008
 
Continence: Discovered my pelvic floor, continence was great day one...wore pads for insurance, no pads from day five after catheter removal (had a few small stress leaks).
 
Potence: A work in progress...
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