ED after 16 months and counting - I'm pissed

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airborne72
New Member


Date Joined Oct 2010
Total Posts : 11
   Posted 10/14/2010 1:12 AM (GMT -6)   
I'm pissed.  Detected at 57.  Diagnosed and removed (RARP) at 58.  Still RD at 59!  Piece of plastic (laprocrospic clip) fell into my bladder and then migrated through my ureter causing scar tissue, which resulted in a laproscopic surgery, etc.  No apologies, just bills.  Lawyers reviewed and said I did not have a case.  Levitra and Cialis don't work.  I am in excellent health (that's why 3 different surgeons recommended the same procedure) but I a still suffer from ED.  To be honest, I was better off asymptomatic with a PSA of 17 than I am cancer free with ED!  Need some advice/comments.
 
nono  

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 10/14/2010 4:28 AM (GMT -6)   
Welcome to the forum Airborne72

I am sorry you have had complications. I'm not sure I agree 100% with your lawyers opinion on the basis of what you say. This aspect cannot be making your recovery from surgery etc easy for you.

I am sure some other guys with ED will reply with some helpful advice. (I'm one of those without ED at present, so can't recommend much on the basis of my own experiences)

Perhaps you could post some of your stats (gleason score grade etc) as well as your PSA, (ie a Signature) as that info will help explain your total situation a bit more.

And you are not the only one who has confronted by the frustration. And ED isn't the only thing the guys at HW get frustrated about.

It often seems like it is, or was, a straightforward choice between:
Option one cancer and no side-effects such as ED.
or
Option two side-effects and no cancer.

But it is not quite so simple.
Yes a functioning penis is an important part of your quality of life, but cancer affects your quality of life too, and can definitely after the quantity.

When I got erections after surgery, but then also got a PSA test or two that said I still had something growing in me I can assure that that didn't make me feel too good either.

My view was that untreated PCa wouldn't necessarily have killed me, but it could have, but it also most certainly wouldn't have made me better as the years went by.
I was diagnosed at 48 and my dad lived till he was 95 which is almost twice 48. Now I reckon that if I have the possibility of living as long as my dad, but with side-effects, then that might not be too bad an outcome. I might be able to do a lot in 48 more years.

Alf
Born Jun ‘60
Apr 09 PSA 8.6
DRE neg
Biop 2 of 12 pos
Gleason 3+3
29 Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
17 Nov 09 PSA 0.1
17 Mar 10 PSA 0.4 sent to RT
13 Apr 10 CT
28 Apr 10 start RT 66Gy
11 Jun 10 end RT
Tired
BMs weird
14 Sep 10 PSA <0.1
Erections OK

Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 10/14/2010 7:37 AM (GMT -6)   
Airborne,
Only someone who has been where you are can fully understand the frustration (and the host of other feelings) of ED. Venting here is a good place to start.
but, if you can be actively working on your ED, it WILL help you feel somewhat more in control. Pump daily with a good pump. Use the pump and rings for sex - it takes a lot of practice, but it can be great sex (most guys never get properly trained or practice). Pumping will also help preserve penile length. ********* every day - even limp. Ask your doc for injections to help jump start things. If s/he does not - get a new, aggressive doctor. There is lots of help! ED recovery after surgery is a long process and what you have at one year is NOT what you will have forever.
Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 10/14/2010 8:32 AM (GMT -6)   
Hey Airborne
Welcome to HW.
Your stats and mine are so close it's scary - except I have the added enjoyment of incontinence to go with the ED.
Injections work. Period. If you have tried everything else (pills and pump) ask your doc for a prescription. Having an occasional hard on will help you physically and mentally.

The franktalk.org site listed above in Paul's signature is great. Lots of good discussions and advice that really should not be printed in a family website. Go for it.

Jeff (the leaking one)
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 3+4=7, 3+3=6. Bone and C/T scans neg.
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.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
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. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%. 8/9/10 Now at 0.24 still 90%
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. "There must be another issue."
5/22/10 10 months: 2 pads per day, 190 ml/day Scope on June 15 "Short sphincter"
7/15/2010 one year: 2 pads per day. 140 ml/day, dry in bed.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04
1/14 6 months - 0.05 (Siemens Centaur)
4/14 9 months - 0.04 (Siemens Centaur) and <0.01 (Roche ECLIA).
7/12 1 year - 0.03 (Siemens Centaur, direct chemilum); <0.01 (Roche Cobas 601 ECLIA)

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 10/14/2010 9:06 AM (GMT -6)   
Airborne, Yep know exactly what your taking about. If you have tried the pills and not haveing success I would strongly recomend that you talk to your Dr about starting Injections! The awakening of the wood sure does a lot for us men! As the Paul mentioned if you don't have a pump get one and use it daily. If nothing else it lets you remember what it looked like before surgery. It is also good for cidrculation. Don't give up yet. I am 2 years our from surgery and finely things are starting to look up. I do think the injections jump start the healing.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

SHU93
Regular Member


Date Joined Aug 2008
Total Posts : 328
   Posted 10/14/2010 11:07 AM (GMT -6)   
I agree, start the injections. Not too pleasant in the beginning but it jumps starts everythign down there!! Good luck!

BuiDoi
Regular Member


Date Joined Aug 2010
Total Posts : 234
   Posted 10/14/2010 2:42 PM (GMT -6)   

.

Something that might help...  at least in understanding !

www.mskcc(dot)org/mskcc/html/94910.cfm

(dot)=.

<<To be honest, I was better off asymptomatic with a PSA of 17 than I am cancer free with ED!>>
Here - you are on your own..  nono   .. .. . Give me life before 'Lead in my pencil'..
 
I don't see any detailed information on timing - I am sure that would help in allowing folks to make comments
.
.


Nov 2009 = First-PSA 5.3 @ 60yo - Asymptomatic - DRE-Non-Palpable
Jan-'10 = TRUS Bx DX - AdenoCar T1c - GS(3+3)=6 , 5 & 45% max., L-MidZone
May-'10 = RRP-Nrv-Spare
Post Op. GS(3+4)=7, 1.1cm3, Pos Margins, EPE (focal) Lateral Left
Margin-Involvement (extensive) Posterior , Grade3 x 8mm
+8week PSA<0.01, ED-85%, Incont-30%
+16W PSA<0.01, ED -85%, Cont -5%
+17W First 'DRY' day. ED -90%

Post Edited (BuiDoi) : 10/14/2010 1:45:43 PM (GMT-6)


keeg
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 10/16/2010 5:19 AM (GMT -6)   
Hi Airborne,
 
I had open surgery at Johns Hopkins late June 2010 at age 52. 27 months later I still have ED. Viagra, et. al., do not produce a usable erection. Trimix does, but I have developed fibrosis. Whether it was caused by the Trimix or something else I don't know. Very depressing.

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 10/16/2010 7:03 AM (GMT -6)   
keeg, shoot me e-mail. I have a couple of questions for you? My e-mail is in my profile.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

airborne72
New Member


Date Joined Oct 2010
Total Posts : 11
   Posted 10/16/2010 7:46 PM (GMT -6)   
I truly appreciate everyone's comments.  I quickly tried to figure out how to list my stats below my post like everyone else, but I am apparently chat room challenged!  Anyway, here they are.
 
My PCa was discovered during a routine medical exam in Feb 09.  I was, and still am, considering spinal fusion.  When my spine surgeon recommened surgery I thought it best to have a physical since I had not had one in over 13 years.  During that 13 year interim the PSA blood test was invented and that is what indicated that my PSA was 17.  Doc told me to chase this rabbit because it was life threatening; the back issue was a quality of life issue - and still is.
 
DRE was normal.  Biopsy showed cancer in 7 quadrants, all of which were Gleason Scores of 3+3 except one was a 3+7.  I got three separate opinions and each urologist recommended the robotic prostatectomy.  After review (mental anguish) I opted to go with the most experienced and mature doc (2,000 procedures with Davinci).
 
According to him the surgery was successful with no evidence of spread.  Subsequent blood tests (Aug 09; Feb 10; Jul 10) have all shown PSA as non detectable.
 
However, a piece of plastic was left in my bladder and subsequently migrated through my ureter and caused scar tissue.  During that time I was religiously following their "penil rehabilitation" regimen and I truly believe that is what aggravated the issue and caused even more scar tissue.
 
Long story short - my use of prescriptions has not worked.  I have little trust in the medical community because I feel as if I was an "ideal" candidate for the state of the art Davinci procedure and my nerves/blood vessels were not spared.
 
And, to the heart of the matter, I am feeling strongly that the doc's are quick to cut and even quicker to prescribe solutions.  Medical science has vastly improved its ability to identify cancer, but what happens after that is still a crap shoot.
 
I say this knowing that so many have experience otherwise (personally, relatives, friends, etc.), but if I had this all to do over again, I would have opted for watchful waiting.  My life has changed radically, and I often question medical technology and medical practice.  I walked into a urologist's office with a PSA of 17; physically fit and only 58 years old.  Did he automatically categorize me? 

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 10/16/2010 8:28 PM (GMT -6)   
Hey Airborne,
Did you read my stats? I happened to have a physical because my new insurance company demanded it before they would insure me. I was 56, in perfect health. My PSA came back 17.8. Clearly a mistake. Try again a couple of weeks later after antibiotics. 22+. Try again a couple of weeks 23+
I felt fine. Everything worked. But it did take me 45 seconds to pee. I was always the last guy out of the bathroom after a meeting. You too?
Sure we both felt fine but, we were ticking time bombs. Our PSAs were not 1.7 or 3.0 like many of the other guys here. It was 17! That is really bad. I had extraprostatic extension; and extensive perineural invasion. You too? How long did we have before we had seminal vescial invasion? 6 months, a year?
You chose to take care of the cancer first. You chose robotic because you were a healthy guy and expect to live along time. That is number 1. A hard-on on a dead guy does no one any good.
Do not try to second guess yourself. What's done is done. Now you need to know how to live with it.
Try the trimix. I promise, with the right dose you can be a p*rn star. Better even, since you will not make a mess. The ladies like that - or so I've been told. ;-)
Good luck to us both.
Jeff

airborne72
New Member


Date Joined Oct 2010
Total Posts : 11
   Posted 10/16/2010 8:45 PM (GMT -6)   
Believe it or not, I had absolutely no urinary issues. This whole thing hit me from the blind side. However, after the surgery I am now the "old" man in the restroom who takes so long to pee and who moans and groans.

I did suffer from incontinence for a couple of weeks after surgery and that really was humbling. Men + diapers = failure. Thankfully, that resolved itself. However, my ED still persists. Guess I should count my blessings, but my self-esteem and male pride don't see it that way.

What is trimix - a prescription drug or what?

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 10/16/2010 9:38 PM (GMT -6)   
Airborne.
You lucky b*stard. At 15 months I'm still incontinent.
The normal progression for ED is the 3 "P"s: Pills, Pump, Prick (injection)

Trimix and Bimix are ED drugs that get injected into your pen*s. Yes, you read that correctly. "Injected into your pen*s!" You inject about 0.2 ml of joy juice near the base of your stuff and then stand back. In a few minutes you have lift off. I'd love to know how they figured that out! And who was the first sucker to try it?
You can look on this site for other questions on the subject.

You should go to the franktalk.org site. There is lots of info including how and where to do it- with pictures. This is a family site and it is inappropriate to go into more detail. Email me if you want to discuss it. You do need a prescription. The cost for about 25 shots with syringes is about $85 US. Cheaper and more effective than Viagra but that needle thing still creeps me out.

Good luck
Jeff

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 10/16/2010 10:10 PM (GMT -6)   
Airborne: Worried Guy has it right. I must say when you get frustrated enough with the pills jump into the injections. It really is much simpler than you would thing. Some guys like my friend Worried Guy is scared of needles. I on the other hand dont even think twice about it. Pop and Go.

The fun out weighs the fear by a long shot! You do need a prescription there are several different joy juices. Caverject, Tri-Mix, Bi-Mix and Quad-Mix. Each has its advantages. The Uro whould almost always give you a practice run in the office to make sure that it works for you and to teach you how to use it.

Hope this helps. I can tell you it is the one thing that made me feel like a Man again.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 10/17/2010 1:06 PM (GMT -6)   
Cajun Jeff said: "it is the one thing that made me feel like a Man again."
For me it was hitting a squirrel with a single head shot at 77 yards off the top of the Kestrel box on a post 16 feet in the air. I could not have done it without integrating the engineering of Leupold, the manufacturing skills of Mossberg, the chemical precision of Remington and the unlimited patience of my wife. True love.
To each his own I guess. ;-)
I will admit, it is nice to see something hanging between my legs every now and then.
Jeff
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