Hitting the ED wall

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

henry5
Regular Member


Date Joined Jul 2008
Total Posts : 24
   Posted 12/14/2009 4:58 PM (GMT -6)   
Hi All,
 
At 46 its been almost eighteen months since surgery (nerve sparing). Still clear!
 
After using trimax (yep a very small dose does work!!) for a while, and getting tired of it, Cialis etc. I've simply given up.
 
Havent felt this low before.
 
Was very positive after surgery, cancer gone. PSA excellent. Really fit.
 
Also, let the exercise go, put on weight, poor pelvic floor routine...boy does that all come back to bite you!!! Stream slowed down, peeing too often. Missing the bowl.
 
Anyone been here before?
 
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...


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 12/14/2009 5:58 PM (GMT -6)   
Gee Henry you're an infrequent visitor. Welcome back. Much the same boat here I'm afraid. Things going well, start to relax, the pelvic floor exercises ease up, general exercise eases off and then the weight creeps back on. I have the same slowing down and increase in frequency..........I put it down to becoming slack all over. After the Christmas -New Year break I'll really have to shape up.
All the best and continued zeros,
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
PSA August 09 (2 year mark), <0.01
PSA December 09 <0.01

My Journey: www.yananow.net/Mentors/BillM2.htm


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 12/14/2009 7:51 PM (GMT -6)   
Not sure what order to put your issues in :

Sex is a hassle, no exercise, weight gain, depression

No exercise, weight gain, sex is a hassle, depression

Depression, no exercise, weight gain, sex is a hassle

Alll of your issues are common to PC. It is important ( in my opinion ) to put it in proper perspective. Depression is a very common thing for men who have had their manhood assaulted, their mortality questioned, and have wet pants besides. If depression is the leading cause, then seeking out professional help is the answer. Once you get that under control, the rest of the things will fall in line, as you begin to feel good about yourself.

If the added weight, or sex is the primary issue, those also can be corrected by seeking different kinds of professional help. There are personal trainers, health clubs, and others to give you assistance in the exercsie/weight gain area. There are professional sex counselors, who can help you and your partner in that area.

Lastly, there is Healing Well. I doubt that you can post anything here that several men have not dealt with already. I think you will find a bunch of guys who have had to deal with all of the above issues, and they are still in various stages of solving them. You are not alone in this fight.

Thanks for posting, and keep in touch. Talking is good for all of us.

Goodlife
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 12/14/2009 8:52 PM (GMT -6)   
Henry,
Forgive my impetuousness for I am but an upstart while you are grizzled veteran. But I have found my pea/pee gravel test range in the back yard to be quite invigorating. I get a perverse pleasure each morning by seeing how far I can shoot. (And I live in Rochester where there is some snow on the ground.) There is something about cold air, the freedom to spray at will and going for the distance that brings out primal urges hidden deep inside us Y chromosome holders. Good thing there are no trees (or neighbors around.)
I won't bore you with the calculations but I used distance to help improve my control. I'm still incontinent and have ED but I do get a buzz when I set a new record. A simple pleasure.
One 40 pound bag of pea gravel from Lowe's can work wonders. You'll get exercise, save water, improve your control, and it sure is fun.

Stick around. You will find all kinds of advice from caring guys who have been through the same dark period you are passing through now. It is temporary and holidays seem to bring it out in spades. Know that it will get better.

Jeff
DX Age 56. First routine PSA test on April 8th: 17.8. Start 2 weeks of Cipro to rule out protatitis.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
. 9/27 2 months: Still 3 pads per day.
11/14 4 months: Still 3 pads per day. 420ml/day, 91 um leak.
12/11 5 months: Still 3 pads per day. 400-450ml/day Experimenting with Nyquil.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04 undetectable.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 12/14/2009 9:08 PM (GMT -6)   
Gotta admit, I almost strained my bladder muscles when I tried to outdo Jeff's golf tee markers on his pee gravel range.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 12/14/2009 10:57 PM (GMT -6)   
First to attend to Henry's question. You might want to search this site for those with experience with penile implants. When I first heard about them I was completely turned off, but good reports from some of the brothers have shifted my thoughts.

Second, with all due respect to brother Jeff, let me remind you that all of his pee gravel results are questionable because he has failed to conform to the PGA (pee gravel association) rules for course layout. Just as in base ball, the P -ers mound is to be elevated ten inches above the P -ers target. This allows the contestant to get a good wind-up and put some momentum behind his P -itch
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/15/2009 12:59 AM (GMT -6)   
John, yeah, I hear you, and trust me, I believe that all of us here feel the same way about the same things, but perhaps at different times.
My surgery was 13 months ago, and I am still with complications, still on another catheter, my 10th in all. When I had my surgery, I thought, this is it, the right thing to do, get rid of this cancer, heal up, move on. PC can have a mind of its own.

Sorry you feel the way you do, but thankful you decided to come back here again. You are at a very young age to be dealing with all you have been dealing with.

Depression usually comes in small steps, and if one is not careful (speaking first hand knowledge here), it can take you over. If you need to talk to your dr. about that, then by all means, even my GP is great on that subject.

With the set back I have had and still have going on in the past year, I have gotten slack (like Billy said above), I tell myself now, that as soon as I can be rid of this catheter, I want to start fresh, to get back into serious walking, to cut back on my beloved sweets, to start feeling like a human being again, instead of a patient constantly. I want 2010 to be the good year that I thought 2009 was suppose to be.

We are all here for you, you can vent ,you can talk about anything you want anytime you want, we will listen, and share with you.
You are not alone with your feelings.

Please stay in touch, and we can help each other.

David in SC
Age: 57, 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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place


jacknoon
Regular Member


Date Joined Sep 2009
Total Posts : 27
   Posted 12/15/2009 3:35 AM (GMT -6)   
....Oh Yes ...The Black Dog......I went for trip around the world 3 months after my prostatectomy...Went to all the more interesting countries like Egypt,Russia...Also drove route 66 before returning home to Australia....This took my mind off the whole drama....I also used meditation to escape....Was tempted to get some jolly pills,but took the other path and tried to keep my mind off it all.....The bottom line is that you are not as good as you were...You have just aged a bit quicker in that department.....Its the glitch on your life mission......You come around when this fact is accepted...Whatever you have now and whatever you get back in the future is a bonus.....I still have negative days...But on the whole I have accepted it all....and am now regaining a great sex life...In some ways better than before....

Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 12/15/2009 1:15 PM (GMT -6)   

John,

Yes!!

You appear to have reached a degree of depression further then I did but you are a lot younger and if I was your age going through the ED stage I would probably be at the same place.  As you were I was really flying high after the surgery knowing my cancer was gone and probably would not return and when I stopped leaking it just seemed the recovery was going great.  Then the ED doldrums hit.  The pump was humilating, uncomfortable and I just could not see it as the answer.  The ED drugs did not even give me a single boost.  The injections worked and are the only thing that has kept some degree of intimacy going between my wife and I but our sex life before PCa was never a planned event and the quality of the spontaneity was great.  That is why two months ago I decided to have a penile implant.  I am actually having that done this coming Thursday.  There are risks and I know them and accept them but without the penile implant I can see our sex life slowly evolving into nothing and I am just not going to surrender to it.  When I discussed with my surgeon before the surgery the treatment of ED if I had it afterwards he laid out the process.  Pump, drugs, injections and implant.  He said that in most of the cases his clinic has handled, which in the hundreds if not thousands, most men using injections eventually either move to implant or just taper off until there is no sex.  If you have not already you should investigate implants.  You can search the web and find personal testimony from men and wives that have gone with the implant.  The implant has evolved a lot.  I will be having the AMS 700 LGX implanted.  This implant is a three piece device.  It also provides for both length and girth improvement over previous implants. 

The best way to kick the depression is to take control of the situation instead of letting it control your life. 

Wishing you the best and praying for you.

Tamu


Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3
Da Vinci on 11/01/06, Catheter out on 11/13/06
56 Years Old
Post Op Path, Gleason 3+3, Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06, 6/25/07, 1/8/08
No more pads as of 1/13/07
Began injections in April '07
 


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 12/15/2009 4:31 PM (GMT -6)   
Tamu, good luck for Thursday -- I hope it all works out well for you.
Pre-op:
Age 63 at diagnosis, now 64.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve sparing RRP on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
19-month: 0.09 (maybe)
ED:
After a learning curve, Bimix injections (0.2ml) worked well. From 14 months, occasional nocturnal erections. Have "graduated" to just the pump.


henry5
Regular Member


Date Joined Jul 2008
Total Posts : 24
   Posted 12/15/2009 4:34 PM (GMT -6)   
Thanks guys. :)

Hey Tamu, all the best for Thursday as well.

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...


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/15/2009 5:51 PM (GMT -6)   
Tamu,

Hope that implant surgery goes well for you. That's a huge step, but when it works for you, probably be all worth it.

David in SC
Age: 57, 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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, July 21, 2018 4:32 PM (GMT -6)
There are a total of 2,984,012 posts in 327,171 threads.
View Active Threads


Who's Online
This forum has 161966 registered members. Please welcome our newest member, SarahBarnes2.
374 Guest(s), 5 Registered Member(s) are currently online.  Details
Kent M., Pratoman, Sheepster, Nacho Libre, borborygmi