QUALITY VERSES QUANTITY

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mlbsm
Regular Member


Date Joined Mar 2008
Total Posts : 85
   Posted 4/17/2009 11:45 AM (GMT -7)   
I went for my one year check-up last week, and all is fine and dandy except for ED.

Junior hasn't risen to the occasion since the night before surgery, and that's with the pump, Cialis and Viagra
giving him a hand.

The plumbing works to a small degree if I work at it, but that still leaves out ML, who hasn't received a tap on the shoulder for the full year now. It isn't going to strain the marrage, but she would enjoy a little more attention.

I cannot approve of sticking junior with needles, so alternatives have to be found.

My Oncologist recommended raising my testosterone level with AndroGel. Has anybody else done this, and what are the results?

I already know that testosterone feeds PCa if it is still present, and the Doctor is going to monitor my PSA level every two month's.

As ML put it, "It's a choice between quantity or quality. Do you want to live for 30 more years regardless of your condition, or possibly a shorter amount of time, but active and happy." Since she's an R.N., she knows the risks.

My attitude is quite simple; when I no longer know who I am and who my family is, pull the plug because living for the sake of living is foolish to me.

What's the consensus of opinion on raising the testosterone level in a controlled setting?
DIAG. 2/08
DRE POSITIVE
PSA 6.8
CONTAINED, LEFT SIDE, GLEASON 9
LUPRON, (3 MO.) 2/28
RRP, 3/26, HOME 3/31
GLEASON SCORE, 3+4
TUMOR CONFINED TO THE PROSTATE, INKED EXTERNAL SURFACE FREE OF INVOLVEMENT. VD AND SV CLEAR AS WELL AS LYMPH NODES AND A BLADDER SECTION.
PSA 5/21 O.O1 UND TESTOSTERONE 0
PSA 6/30 O.OI UND TESTOSTERONE 10
PSA 9/30 O.O1 UND TESTOSTERONE 311
PSA 1/12 O.O1 UND. TESTOSTERONE 219
ED, BUT I CAN FIND WAYS AROUND IT.
PSA 4/10 O.O1 UND. TESTOSTERONE 119 Rx. FOR CREAM TO RAISE LEVEL.


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 4/17/2009 1:22 PM (GMT -7)   
I had been on testosterone replacement therapy (TRT) for about 10 years prior to being dxed with PCa. My unologist/surgeon was of the opinion that TRT would be like pouring gasoline on a fire as far as PCa is concerned. By 3 months after surgery, my T level was down to 48 and I was in a deep suicidal depression. My uro still refused TRT so I found a new uro who prescribed for me and within a week I was our of the depression and feeling great. My libido came back, my T level runs between 480 and 530 and with meds we have enjoyed a very good sex life.

I think the story here is:
1) There is no consensus of opinion on TRT vs recurrance.
2) We must take control of our recovery.
3) When it comes down to living in total misery vs TRT, I'm glad I chose TRT.

Good luck...

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 + .04 cc Trimix = Excellent Results
PSAs from 1/3/07 - 7/17/08 0.00.
PSA on 1/28/09 - 0.02
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 scans on 12/2/08 & 2/25/09 - in remission!!!
Next scan in May 09.
Biker90's Journey
http://www.caringbridge.org/visit/jimrobinson
"Patience is essential, attitude is everything."


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/17/2009 1:29 PM (GMT -7)   
Hi Billy,
I do understand your frustration. It's been over two years since I last had intercourse. And my testosterone is well under 50 with the possibility that it will never come back to pre-hormonal therapy levels naturally.

I am very sorry for you and how it is making you feel. Not everyone has to deal with this, but it sucks. Low T levels will almost always cause depression and combine that with all you have to go through to try and recover from a major surgery and it is quite the problem. I hope your T levels rising will improve your recovery on the ED. Since your pathology was good, you are certainly on the right track to try to get the T levels back to a normal level.

PS: Your wife is great. Like with mine, the sex isn't all what comprises our wives attraction to us lucky guys. This helps a lot. But no matter how many times she tells me it's not a big deal, I will never be convinced. My wife was in her thirties when I had my Dx. Who would ever bargain for what lied ahead?

Peace, and keep trying to get things back. Never say never.

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!

Post Edited (TC-LasVegas) : 4/17/2009 2:34:40 PM (GMT-6)


Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3196
   Posted 4/17/2009 2:40 PM (GMT -7)   
Man would I ever like to have a T rush. It would be so great to desire my wife again. That will never happen. It's okay for me cuz without the T, I dont care about not having a libido. My wife sure deserves better though. Todd
dx:06/03/06
Age at dx: 42 age now 45
Treated for sciatic nerve pain 6 months prior to dx.
Heavy amount of blood in urine Unable to urinate 
Lung x-ray for pnumonia revealed multiple lesions in each lung
P.S.A. at time of dx. 3216.14
Began lupron and casodex
Cat scan showed large mass in the pelvic area affecting the bladder multiple nodules in both lungs and lymph node envolvement.
Bone scan revealed possible bone involvment in the pelvic area
Biopsy 12 of 12 cores positive gleason 3+4=7
P.S.A.s since lupron 2946, 1274, 532, 5.01 1.23, .09
Begining jan 08 psa .o9, .25, .44, .86, .73, 1.34, 1.49. Doubling time is a little over 3 months
Cat Scan 12/12/08 Prostate normal size and shape. No tumors detected. Left lung clear of all nodules right lung showing only benign scar tissue. Lymph nodes normal
Bone Scan 12/24/08. Clean!!! went off casodex January 4 2009
Current psa 2/13/09 .16


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 4/17/2009 6:56 PM (GMT -7)   
This is a great and important discussion. I to had huge concerns over my excalated T level, however I changed my lupron from 4 month to 3 and it has come back down. In relation to your question, if your cancer was confined and it is controlled my understanding is that a rise in T level could be healthy. The gleason 9 would be a concern and something to keep a close eye on. Everyone has had great comments here. Tony is right sex is not what attracts our wives to us and it is not what is going to keep our love alive. On the other hand I do realize that us men feel the need to express our manhood in natural ways. With that said I would say go for it as long as you keep a close eye on the PSA. I bet your wife would rather have you impotent than not have you.

love you all
dale
My PSA at diagnosis was 16.3
age 47 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
Testosterone keeps rising, the current number is 156, up from 57 in May
T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%
 


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 4/18/2009 8:07 AM (GMT -7)   

mlbsm...& the rest...

Maybe I am missing something, but it seems everytime there is this kind of post, only those of us who have received a penile implant (prosthesis) finally brings up the subject of implant.  I am ignorant about the testerostone subject, but I suspect that mine is relatively low.  I've never had it checked.  To have intercourse with my wife, I first pump it up and after a little or a lot of foreplay, I'm ready... and so is she.  But with the implant, even if I do not get excited about it all, which happens rarely after I pump it up, I still feel really great that I have been able to make love to my wife.  Guys, our wives need some kind of loving even if we don't feel like giving it.  I think there is something which produces depression in a man (and a wife) when he cannot or will not function sexually. And yes, it is impossible to penetrate without an errection, but I think most of us know that there are other ways to please a wife sexually than using our penises.  However, I can now function as good as an 18 year old guy after it's errect.  And I can remember only one time since I received the implant that I did not orgasm wonderfully when making love to my wife.

I can understand the caution regarding getting an implant.  (1) First, it is very difficult thinking that one has to go through that kind of surgery, and it is a permanent outcome.  There is no going back, as it has been cautioned on this forum. Then, (2) there is the relatively short-term pain situation coupled with all the black & blueness as a result of the surgery.  But after those first two or three weeks, it becomes obvious (at least it was to me) that when better (in three or four more weeks), the ability to penetrate and give pleasure and receive pleasure would return.  But then, (3) some have the cost thing to deal with, and I certainly understand that.  if it were not for good insurance, I never could have had these implants (I had an AUS at the same time).  There are also the (4) horror stories of things gone wrong during or after the surgery.  Although these things do happen, so similar things happen in other surgeries.  There are risks to any surgery.   

Everyone must make their own decision, as I well understand.  But I am having difficulty with the fact that when there is a post such as this one, very little is suggested about having and AMS or penile implant.  I had never heard of such a thing until I joined HW and someone mentioned it.  I remember how horrified I was at first mention but after months of investigation, I can still say, after nearly ten months post implant, I sure am glad I got these things, and that I was able to locate a well-qualified surgeon to do it.  So, guys... those of you who suffer with ED, perhaps... perhaps you should at least look into the possibility of a penile prosthesis. And if you suffer with incontinence after months and months of kegaling, getting shocked, etc, maybe an Artificial Urinary Sphincter would solve your problem.  They did  mine.  Investigate.

yeah Gene214     

 


PC diagnosed 12-06 @ age 63
Radical open removal 2-14-07, Gleason 3+3=6
Removal of stricture 6-07, incontinence continues
Scheduled for AUS & IPP 05-08
Surgeon cancelled one day pre-surgery, due to cardiac concerns
Nuclear stress 5/13/08
3 stents 5/27
AUS, IPP implanted 07-16-08
AUS, IPP was activated on 08-18-08.  They both work!
10-20-08 went back to surgeon for a follow-up.  Both devices are working very good and surgeon was very pleased that I am very pleased.
 


Model A Vicky
Regular Member


Date Joined Aug 2008
Total Posts : 20
   Posted 4/18/2009 11:37 AM (GMT -7)   
12 years after Radical surgery, I had Testostrone therapy for a while--maybe 3 years off and on.  Then PSA began to creep up.  Wound up at .6.  After stoping TT, and 35 radiation treatments, now back down to 0.02.  Don't guess it was meant for me to do TT.
Doug: diagnoised age 49 (born 1943)
supporting/loving wife: Pat
1st PSA (1991): 4.0
2nd PSA (1992): 5.4
Biopsy (Nov.1992) 6 samples, all positive
Radical Prostectomy: Jan. 1993 @ age 49
Depression: Onset within 6-8 months (low testerone)
Incontenance: 6 or so weeks, with  very slight problem continuing through present
Impotence: Continues through present
Impotence Treatment:
*Viagra/Cialas/Levitra: limited success
*Testerone Treatment: So-so success (mood swings improved)
*ErectAid: Success, but bad leak-down problem
*Recent coupling of Vigra and ErectAid: Best results, but not perfect.
1993 - 2004 PSA: 0.1
Mid 2004 PSA: 0.3
Late 2004 - Late 2006: PSA fluctates 0.2 - 0.6 (cease testerone therapy)
Feb 2007: Begin Radiation
March 2007: Complete 35 Radiation Treatments
August 2007 PSA: 0.01
August 2008 PSA: 0.04 
Possible increase in PSA: Testerone Therapy???
 


mlbsm
Regular Member


Date Joined Mar 2008
Total Posts : 85
   Posted 4/18/2009 1:06 PM (GMT -7)   
Gene,

If I won't consider a tiny little needle anywhere near my winky, the chances of allowing a Dr. to slice him open and stick a tube in is NILL. Billy is WAY TOO MUCH of a CS (Think chickens) to allow that to happen!

I did look into it, and did a bunch or research. From what I read, it either works really well, or you end up sitting down to pee, something I do half the time anyway.

The catheter from the RRP had junior blown up like a balloon and every shade in the rainbow, and after the hernia surgery, he up and blew up all over again even though he was never actually touched. Obviously, he doesn't take kindly to Doctors.

Many comments talked about depression, and I don't feel that's a part of my consideration. As we all now know, it's not necessary to have an erection to make junior happy, but it is if you want to make someone else happy. That, coupled with the fact that I am on Zoloft for a completely unrelated situational loss, finds me in a fairly good mood most of the time.

That said however, I do want to make ML happy, especially since she's 15 years younger than me. She agreed to marry me but she never agreed to become a nun. If I can find a way to make her happy without putting junior on the chopping block, I'm all for it.


:)) Billy
DIAG. 2/08
DRE POSITIVE
PSA 6.8
CONTAINED, LEFT SIDE, GLEASON 9
LUPRON, (3 MO.) 2/28
RRP, 3/26, HOME 3/31
GLEASON SCORE, 3+4
TUMOR CONFINED TO THE PROSTATE, INKED EXTERNAL SURFACE FREE OF INVOLVEMENT. VD AND SV CLEAR AS WELL AS LYMPH NODES AND A BLADDER SECTION.
PSA 5/21 O.O1 UND TESTOSTERONE 0
PSA 6/30 O.OI UND TESTOSTERONE 10
PSA 9/30 O.O1 UND TESTOSTERONE 311
PSA 1/12 O.O1 UND. TESTOSTERONE 219
ED, BUT I CAN FIND WAYS AROUND IT.
PSA 4/10 O.O1 UND. TESTOSTERONE 119 Rx. FOR CREAM TO RAISE LEVEL.


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 4/18/2009 1:21 PM (GMT -7)   
Billy,

Testosterone replacement therapy may help but, it may not be all of the answer. In fact, I doubt it will be the whole answer. Rehab is still part of the scenario for a whiile at least. Keep up with the pump, Viagra or Levitra (not a cialis fan) and the T gel. The gels and creams work for most men however, a % need to move from gels to shots within 2 years. Seems those a bit older do better longer on gels. Please ask for the occasional estradiol test so you have an oportunity to keep the conversion in check. The more T available to be used the more benefit you will get from using it. Good Luck :>)

Swim
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/18/2009 1:51 PM (GMT -7)   

Billy when you type:

"My attitude is quite simple; when I no longer know who I am and who my family is, pull the plug because living for the sake of living is foolish to me." shocked

you just might lead one to believe that depression is an issue.  It's good you are on Zoloft and reaping some benefit by it, I still have to ask if depression or the treatment of it isn't contributing to your ED issue.   Just my thought.  I hope I am wrong.

Gene,  for guys that have endured a complete ablation of testotserone over a long period of time, not even an implant will help at this time.  There is a psychological issue to go with the physiological issue.  But, I remain hopeful that when the ADT stops, I may just get things back naturally.  It is way too soon to go with any other decision as drastic as that one.  Still there is the lapse in our sex lives and it is a cause for depression.  And I believe that Billy can get it back if he can conquer the T level issue. 

 

Tony


dsmc
Regular Member


Date Joined Jul 2008
Total Posts : 149
   Posted 4/18/2009 2:34 PM (GMT -7)   
Hi all, I was just looking at this article from a Harvard grad and Faculty member concerning this very subject. It is a pretty long read but it is good. A friend on another forum had it listed.

David


http://www.lef.org/magazine/mag2008/dec2008_Destroying-the-Myth-about-Testosterone-Replacement-Prostate-Cancer_01.htm
Age 53
Pre-op PSA 4.3
Surgery Feb. 17 2005
Post-op Path : Gleason 3+3=6
Right pelvic lymph nodes: negative for metastatic carcinoma
Left pelvic lymph nodes: negative for metastatic carcinoma
extent: right lobe 40% left lobe 10%
capsular penetration: Absent
Seminal vesicles and vasa differentia: Uninvolved
Prostate: 26 grams
Post-op PSA's <0.04 for 3 years
Feb. 08: 0.07, March 08: 0.08, June 08: 0.09 and Sept. 08: 0.1
IGRT scheduled.....November 17th....
FINISHED 01/14/09 YEA!


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 4/18/2009 2:42 PM (GMT -7)   
FYI .....Zoloft, like ALL AD meds may cause delayed orgasm as well as ED. Hopefully the start of T means tapering off the Z. Since depression is common with hypogodnaism, makes sense by starting one, the other can be tapered into the past :>)

****Friendly Reminder: Testosterone is not the answer for all PC men but it may be the quality of life answer for a select group! Not all pathologies are good risks.

swim
 


apacker1950
Regular Member


Date Joined Nov 2008
Total Posts : 122
   Posted 4/18/2009 2:55 PM (GMT -7)   

Billy,  I understand your fear of going under the knife for an implant. I don't think I could do that either, but I wasn't about to let my fear of a little tiny needle keep me from a chance to regain sexual relations with my wife.  The 1st couple of times I injected were kind of scary, but the results for my wife and me were well worth overcoming my fear.  I have been injecting for over 3 years with great results and no problems.  If you are OK with no erections, so be it, but if you want more you should reconsider as biker90, myself and many others here have done.  In any case, I wish the best to you and all my brothers at HW.  Allan



Dx PCa age 54. Jly 05- PSA 8.1 Sept 05- PSA 10.7
Sept 05- Biopsy  9 of 12 cancerous, Gleason 3+3=6, T2
Bone scan and cat scan showed hot spot on hip bone.
Oct 05- bone biopsy, ouch.  benign , no cancer in bones.
Nov 05- PSA 15.4 Nov 18, 05- Nerve sparing open RP at Huntsman Cancer Center, by Dr. Robert Stevenson. 100% continence at 3 months. ED- Tried the big 3 pills with no results. Feb 06-Started VED, worked, but painful with constriction rings. May 06 started Trimix injections.
ED appears to be perminant but doing great with Trimix.
PSA remains undetectable.


mlbsm
Regular Member


Date Joined Mar 2008
Total Posts : 85
   Posted 4/19/2009 11:03 AM (GMT -7)   
Thanks for all the advice, you guys already know how valuable you are.

Not to worry Tony, Billy isn't planning on a vacation anytime soon, I just meant I wouldn't tolerate being plugged into machines for years just to keep the electric company happy. :))

Funny you speak of Zoloft being a downer regarding sex, my Doctor indicated to me that it could be a perk of taking it.

I didn't begin Zoloft because of ED or PCa, it was almost entirely unrelated.

I haven't pushed any panic buttons concerning ED yet, because I was told from the very beginning that I was looking at the possibility of 18 to 24 months out before junior decided to join the world again.

I had my right nerve bundle spared according to the Dr. and was told that the nerve's didn't like to be messed with, and could take a good long time to settle back down. Now I've got the right twin refusing to go back home after hernia surgery, and I was getting a little antsy about him getting baked before he made the trip.

My fear of needles is almost pathological, but after 6 surgeries this year alone (4 on my hand), I'm kind of getting use to them (A little).

If ML starts throwing pots and pans around the kitchen, maybe I'll have a heart to heart talk with junior.

By the way Tony, Hanna is doing well. :)) Billy
DIAG. 2/08
DRE POSITIVE
PSA 6.8
CONTAINED, LEFT SIDE, GLEASON 9
LUPRON, (3 MO.) 2/28
RRP, 3/26, HOME 3/31
GLEASON SCORE, 3+4
TUMOR CONFINED TO THE PROSTATE, INKED EXTERNAL SURFACE FREE OF INVOLVEMENT. VD AND SV CLEAR AS WELL AS LYMPH NODES AND A BLADDER SECTION.
PSA 5/21 O.O1 UND TESTOSTERONE 0
PSA 6/30 O.OI UND TESTOSTERONE 10
PSA 9/30 O.O1 UND TESTOSTERONE 311
PSA 1/12 O.O1 UND. TESTOSTERONE 219
ED, BUT I CAN FIND WAYS AROUND IT.
PSA 4/10 O.O1 UND. TESTOSTERONE 119 Rx. FOR CREAM TO RAISE LEVEL.

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