it's in our head!

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davidg
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Date Joined Feb 2011
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   Posted 3/16/2011 7:54 PM (GMT -6)   
i'm sure everyone already knows this, but I find the power of the mind a little overwhelming at times.

I've not had ED at all but things have changed, it's all very mechanical and I couldn't get a response just looking at my wife, **** or whatever. Had to constantly stimulate it. Even then it would take a few minutes to get going. It literally feels like a motorized process and that if you let go of the accelerator the motor dies down.

The amount of pressure I (we) put on ourselves is also idiotic. I would verify that I could get an erection every day even though I was in no mood whatsoever. I'd literally work up to an erection and then just stop, satisified that I was still "working". Some days were slower or worse than others and being the idiot that I am, I'd immediately think that I was regressing, losing my ability to have an erection.

There was no "feeling" down there unless the above steps were taken, and mostly, I didn't really feel passionate/horny or however you want to describe it.

I knew i was/am still depressed from this whole cancer thing, extremely fatigued from what I assume is getting right back into my work/parenting routine after surgery and kinda felt that this mindset certainly didn't help progression vis-a-vis sexual function.

Then yesterday I spoke to my bosses and found out I could go work in Rome, Italy for a year with family ( I was born and raised there). I got excited, happy, and felt "high" ( i'm not manic). Well, wouldn't you know, that night I started feeling desire for sex again and i felt movement/sensations without even touching it.

So, yes our nerves are repairing and there is a definite physical element to all this, but the pressure we put on ourselves, outside influences like stress, depression and fatigue must play a really significant role in our progression however fast that may be.

Tony Crispino
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Date Joined Dec 2006
Total Posts : 8128
   Posted 3/16/2011 8:04 PM (GMT -6)   
What a good post David,
Very thoughtful. And I agree. In some ways I was given a grace period by going on HT immediately after surgery. I wasn't supposed to work and I didn't. But after my HT was lifted I set no expectations, and low and behold ~ my sex life returned. Rather quickly.

In my support group I stress not putting yourselves under too much pressure to perform. In the first year after RP you begin functioning you are the rarer bird. But most of my guys in the group do very well after that period. Additionally there are sex therapists that specialize in this area. It is a tall order to ask a guy to consider going to one, but they have helped guys in the past.

Again, great post...

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 3/16/2011 8:38 PM (GMT -6)   
That was a good post David. At this point I have no expectations other than to enjoy the experience and share that with my wife, so not much pressure there. But I sometimes get down that I am not what I used to be in a number of ways. But hey, I'm alive and I will take that.
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
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
Started IMRT Jan. 2010 72gys
7month post SRT PSA .2

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/16/2011 9:48 PM (GMT -6)   
David, you hit that nail right center on the head. I think most, if not all of us, can relate to what you said.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
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 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

fulltlt
Regular Member


Date Joined Nov 2010
Total Posts : 264
   Posted 3/16/2011 11:20 PM (GMT -6)   
TC-LasVegas said...
What a good post David,
Very thoughtful. And I agree. In some ways I was given a grace period by going on HT immediately after surgery. I wasn't supposed to work and I didn't. But after my HT was lifted I set no expectations, and low and behold ~ my sex life returned. Rather quickly.

In my support group I stress not putting yourselves under too much pressure to perform. In the first year after RP you begin functioning you are the rarer bird. But most of my guys in the group do very well after that period. Additionally there are sex therapists that specialize in this area. It is a tall order to ask a guy to consider going to one, but they have helped guys in the past.

Again, great post...

Tony


How do you go about finding a sex therapist? What are the expectations involved in this sort of thing?

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 3/16/2011 11:29 PM (GMT -6)   
support groups and therapists are ideal in this situation. You've got to be able to share this experience. it's is a humbling and annoying experience for us all. Curiously, all the women I have talked to about this, and I haven't missed an opportunity to do so, think we men are complete fools about this. They all say the same things: relax, there are so many things you can do to please a woman, enjoy and explore the new you, be grateful your romantic life requires a change look at it as an exciting new beginning. And they're not patronizing us either. Sure they like to make love to us, but frankly defining sex solely as we tend to define it is very limited. In a way this operation forces us to explore our sexuality ( and that of our partner ) regardless of how we have recovered post surgery.

I must say though, it must be a lot easier for those of us that are married. I can't imagine how hard it must be being single and dating after this type of surgery. You would really need to meet a great and understanding woman.

natural44
Regular Member


Date Joined Dec 2010
Total Posts : 172
   Posted 3/17/2011 8:02 AM (GMT -6)   
Thank you David for this post I really neede to hear this! I am/was in the same boat with slow progress and started to think I was going backwards in healling from the ED. Just in past week I was geting very frustrated/depressed I believe God has had a hand in my progrees this whole journey, however I had started to not be as diligent with trusting Him for this. Long story short, attitude adjustment, more time in prayer and faith I WILL see faster improvements...and more progress in past week than I have had in past 5 months!
age 44 when diagnosed 45 now
RRP 9-28-10
gleason 3+3
pathology report clear
11-1-10 PSA 0.02
3 month 0.00
pump works ok
12-1-10 noctural erections, not very strong maybe 20%
tried all oral meds and nothing yet
Dr. R. Saint in Tulsa did my procedure, I do NOT recomend him!!
2-28-11 ED seems to be getting worse, no nocturnals for a week, and nothing spontanious at all still

fulltlt
Regular Member


Date Joined Nov 2010
Total Posts : 264
   Posted 3/17/2011 9:03 PM (GMT -6)   
TC-LV said, "Additionally there are sex therapists that specialize in this area. It is a tall order to ask a guy to consider going to one, but they have helped guys in the past."

Serious question, How do you find a sex therapist?
age 57 2/2010
PSA Feb 8.2
biopsy 2/2010 - 2 of 8 left & 2 of 8 right positive, Gleason 3+4=7
attended support group - advised to get a second opinion
second opinion on pathology from Johns Hopkins 4+4=8
PSA 15 4/2010
5 weeks IMRT 4/2010-6/2010 at Copley Hospital in Aurora, IL
91 palladium 103 seeds 7/2010 at Chicago Prostate Center, Westmont, IL
PSA Oct 3.97, Dec 2.78, 3/9/11 2.42

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 3/17/2011 9:48 PM (GMT -6)   
I'm sure your doctor has advised many of his pc patients about sex therapists. My surgeon actually works with one becaus ethe need for one is extremely common in pc patients.

diamonds3
Regular Member


Date Joined Jan 2011
Total Posts : 112
   Posted 3/20/2011 6:12 PM (GMT -6)   
I’d like to take this thread out on a tangent if I may and relate my own experience of what has gone on in my mind. I’ve had shoulder pain since Feb of 2010. Arthroscopic surgery to repair a torn rotator cuff, torn biceps tendon, and arthritis in Aug of 2010 did little to relieve the pain. Rehab during the 2 months following the surgery offered little relief. My shoulder pain remained constant until the day of my prostate surgery, and has not returned since. It’s a miracle!
DOB: 01/61
PSA: 01/10 2.8
PSA: 11/10 4.2
DRE: 12/10 Normal
PSA: 01/11 4.1
Biopsy: 01/21/11 7 out of 12 cores + Gleason: 6(3+3) Stage: T1C
da Vinci 03/04/11 Penn Hospital
Catheter Removed 03/11/11
Prostate Size: 22 g Gleason: 7(3 + 4)
Grade: T2C 10% of Tumor involved
Extraprostatic Extension: None
Perineural Invasion: None
Seminal Vesicle/Lymph Nodes: Clear
Margins: +, invasive apical, posterior

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 3/20/2011 6:15 PM (GMT -6)   
i've noticed that my bathroom habits have changed dramatically since surgery. I rarely get gas and haven't gotten an upset stomach since surgery. I used to have a very delicate stomach. Wasn't going to bring it up because it sounds crazy, but since you did above...

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/20/2011 6:15 PM (GMT -6)   
fulltlt,
I did a speaking engagement with one...I'll have to ask her that question...Her name is Rhonda Fine and she is located in Aventure Florida near Ft. Lauderdale.

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/21/2011 1:42 PM (GMT -6)   
OK funny thing happened on the way to planning our next UsTOO meeting today ~ I will have a doctor that specializes in this thread topic. Dr. Joel Marcus is a Psychosocial Oncologist from the Nevada Cancer Institute. He will be speaking on this very topic...

For anyone looking for this type of a therapist you might search for "Psychosocial Oncology" or "Psychosocial Oncologist"...

Here is Dr. Marcus' bio:

tinyurl.com/4h6a3co

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

Post Edited (TC-LasVegas) : 3/21/2011 1:00:48 PM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/21/2011 2:02 PM (GMT -6)   
Ok then,
I used the TinyURL and it works. Try it now...

Also,
I just received a terrific document from Dr. Marcus. If anyone would like a copy just send me an email...

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

fulltlt
Regular Member


Date Joined Nov 2010
Total Posts : 264
   Posted 3/22/2011 7:52 PM (GMT -6)   
TC-LasVegas said...
Ok then,
I used the TinyURL and it works. Try it now...

Also,
I just received a terrific document from Dr. Marcus. If anyone would like a copy just send me an email...

Tony


The link works now. Thanks.

I sent you an email but didn't get anything back yet.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/22/2011 7:57 PM (GMT -6)   
fultlt
I sent within 5 minutes of my original post, you responded quickly and so did I. Please check your spam filter...

In the mean time I will resend it...

Tony

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/8/2011 10:11 AM (GMT -6)   
I followed the advise of some here. I was less obsessed with monitoring/tracking my erections in the last week and the results were great. I tried only twice in the last week and both times I reached 100%.

The biggest difference is that these two times, as opposed to the previous two months, the entire thing was less mechanical. I was really surprised to see that the erections were being maintained even while I wasn't actually having full intercourse. They stuck with me while we were fooling around. I didn't push my luck and didn't test this aspect of it for more than 3-5 minutes, but before, without constant stimulation I was seeing the quality of the erection die down like a sputtering motor if not constantly stimulated.

I have no idea what this means, if it's because I put less mental pressure on myself, if it's because the nerves are healing ( seems early for that ), or if it's because I stretched sex out over 3-4 day intervals.

I'd like to hope I can keep this attitude and this relaxed strategy. It's not in my personality, but perhaps the apparent benefits of it will remind me to stay with this course.

I also had a long discussion with my wife about her needing to re-enter my mind and find whatever it is in my mind that gets me going. She's game, but she asked me what to do and that she would of course do anything. I told her that she had to find it. That night while watching tv she kept nudging me on the shoulder. After 2-3 times I asked her what she was doing, she smiled and I asked her if that was actually her way of trying to get into my mind. She laughed and confirmed it. We laughed together and I explained that getting into my mind, finding something that would work did not involve giving me access. We were giggling throughout this. What I'm basically trying to do is trying to get a reaction down there through my mind again. I know it can work because I see results when I do this, but I want/need her to find it. That takes communication and a comfort level that I think comes with years of marriage.

wifeandmother
Regular Member


Date Joined Feb 2011
Total Posts : 45
   Posted 4/8/2011 1:31 PM (GMT -6)   
The doctor told us that Viagra will not work anymore, but it still is in your mind. To tell you the truth, the way I feel so stressed and overwhelmed about the CA...I don't want to do it anymore.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/8/2011 4:02 PM (GMT -6)   
davidg - that was one of your more bizzare posts yet. sounds like you like to make everything complicated. if you have such great communications with your wife, just tell her what would work instead of making a guessing game out of it. getting so obsessive about your erections constantly would be enough in itself to be counterproductive in my opinion. not everything in life, especially post surgery, has a set schedule of improvement. enjoy whatever you have, and the rest will come in time. besides, i thought you didn't have ED after surgery, wasn't that of your claims with your amazing surgeon?

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
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 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/8/2011 5:09 PM (GMT -6)   
Oh David, If I have to verbally tell her what works it takes the fun out of it. At least for me. Maybe it's a generational thing.

Bizarre would be if I asked her to bring a girlfriend from yoga along. Then again...

And why are you being so combative again? I didn't put you on ignore because of how sweet you are.

Don't have ED based on my definition. Get full erections with or without meds, albeit bigger bang for your buck with. The mechanical aspect of it was/is a little annoying because it requires adapting. Just getting used to the initial changes we all have to go through. All chronicled here in various posts for the benefit of anyone wondering what can happen with those possible side effects. My surgeon is great, not amazing. He delivered what he promised he would deliver given my age, fitness and sexual activity going into surgery. I had doubts going in, but what he predicted definitely happened. They can probably tell going in what will happen to someone based on all those things and previous results.

He never predicted I would have complete control of urinary functions from the first minute but I did. Just luck I suppose. I had ordered months worth of pads and diapers from Amazon so that I wouldn't have to deal with the transaction on a regular basis. Threw them all out a few weeks after catheter was removed once it was obvious I didn't need them. Luckily this is the reality for many and things will only continue to improve for future patients as surgeons throughout the country get more and more experienced in this technique.

Post Edited (davidg) : 4/8/2011 4:17:02 PM (GMT-6)


davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/8/2011 5:13 PM (GMT -6)   
wifeandmother said...
The doctor told us that Viagra will not work anymore, but it still is in your mind. To tell you the truth, the way I feel so stressed and overwhelmed about the CA...I don't want to do it anymore.


I had a 3 months supply of Viagra that I gave to a fellow patient yesterday. He came to pick them up in my office. I hated the stuff. It gave me a solid erection, but something happened to my vision. Upon advise from many here and my own instincts I stopped taking it. The side effects from cialis were much better for me.

Stress kills sexual drive. But my urologist and my surgeon's nurse explained the "use it or lose it" thing. Something about possible atrophy setting in if you don't use it. Perhaps a constructive way to work on the stress would help you guys. I know its easier said than done, but there are things we can do.
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