Medical Forum / Diseases and Disorders / Prostate Cancer / September 2006
5 year post RRP
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Dr. Patient - 24 Sep 2006 23:57 GMT I'm a healthy 61 years old. I'm approaching my 5 year landmark post RRP. I followed this group closely for about a year following my surgery, but have since only lurked occassionally.
In summary, My PSA intially was 6. Biopsy at this time was negative. 3 months later PSA was 9, and a 14 core biopsy was positive in one core. Surgery followed this. I had a one-nerve sparing RRP in Dec 2001. Gleason score on core biopsy was 3+3=6 and on surgical path 3+4=7. There was no extracapsular extension, although there was perineural invasion. I've had no other treatment.
After surgery, I had no incontinence. PSA has remained undetectable. I feel extremely lucky that the PC seems to be in long-term remission (dare I say cure?), and that I've had no serious complications. However, my sex life is dramatically changed.
When I made my decison on treatment, newer techniques were just emerging, and if my disease had developed 3 years later, I probably would have chosen LRP or robotic surgery.
I think that the liklihood of having a relatively normal sex life following RRP depends on many factors. I am physically able to get an erection and to have an orgasm, but the degree of stimulation required is quite different than it was. Mental imagery is not as potent as it used to be, and physical stimulation is essential. A "cock ring" definitely helps - the large, soft rubber kind, wrapped around both the base of the penis and the scrotum.
The sad fact is that most of us who have this disease are at an age when our sex partners are aging as well, and much of their physical attraction has waned. I have the additional handicap of having a wife with chronic diseases, making her, through no fault of her own, less physically attractive as well as less able to fully participate in sex. While I maintain a degree of potency, and I love my wife very much, our marriage bed has become platonic.
I read with envy of men here who have maintained sex lives with their wives. Even in the absence of this disease, many of our sex lives suffer after 30 years of marriage. In my case, PCA has dealt the final blow.
I.P. Freely - 25 Sep 2006 00:32 GMT > I'm a healthy 61 years old. > > I read with envy of men here who have maintained sex lives with their > wives. Even in the absence of this disease, many of our sex lives > suffer after 30 years of marriage. In my case, PCA has dealt the > final blow. You're not alone, "Doc". My sex life began to wane a decade ago, in my early 50s, as my erections and my wife's interest in sex became less consistent. We never did have an active oral sex life and can't have intercourse now, and we have never been able to cuddle in bed as we sleep because she has always kicked, clawed, punched, ground her teeth, and all but shouted her way through the night. Meds and CPAP have helped her lately, but I now do fine solo, and have offered to buy my wife of 37 years some battery-powered toys. FORTUNATELY, my sports have always been better than sex anyway, at least over the long run. Sex lasts only an hour or two (yeah . . . RIGHT!), but sports take all day.
I.P.
Steve Kramer - 26 Sep 2006 01:49 GMT > You're not alone, "Doc". My sex life began to wane a decade ago, in my > early 50s, as my erections and my wife's interest in sex became less [quoted text clipped - 6 lines] > better than sex anyway, at least over the long run. Sex lasts only an hour > or two (yeah . . . RIGHT!), but sports take all day. That's some of the sorriest excuses I've heard for not taking care of your wife. I suppose you lost all ten fingers, too?
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 Non Illegitimi Carborundum
I.P. Freely - 26 Sep 2006 06:58 GMT >> You're not alone, "Doc". My sex life began to wane a decade ago, in my >> early 50s, as my erections and my wife's interest in sex became less [quoted text clipped - 9 lines] > That's some of the sorriest excuses I've heard for not taking care of your > wife. I suppose you lost all ten fingers, too? My wife's interest in sex began to dwindle long before mine did, when her career took off 20 years ago. Her career was extremely demanding of her time and energy, ultimately displacing her sports, hobbies, sex life, even sufficient sleep by the '90s. She has always valued her career above her other interests, and has achieved one hell of a lot with it. We've discussed our sex life openly from the time we were married right up to tonight in light of your comments; it just has never been a big deal in the last 20 years. There's a lot more to love than sex. She has agreed fully, even brought it up first, that her sex life, even my libido if ADT was in the picture, was WAY down the SE priority list.
Different strokes for different folks.
I.P.
Steve Kramer - 26 Sep 2006 11:33 GMT >>> You're not alone, "Doc". My sex life began to wane a decade ago, in my >>> early 50s, as my erections and my wife's interest in sex became less [quoted text clipped - 12 lines] > My wife's interest in sex began to dwindle long before mine did, when her > career took off 20 years ago. There is obviously more at work here than should be discussed in this forum. I apologize for bringing it up.
tchtic@yahoo.com - 26 Sep 2006 12:26 GMT >... Sex lasts only > an hour or two (yeah . . . RIGHT!), but sports take all day. That's a line from an old joke, the sex class in a Sunday school, the stern preacher closes with, "and you'll burn in hell forever for only an hour or two of pleasure, any questions?"
A young thing raises her hand and shyly asks, "how do you make it last an hour?"
I suppose when I was much younger, an hour, two, was normal who knows. It's amazing how the simple act of stroking in and out, over and over, smooth, slow, could be so enjoyable and so bonding, such a wonderful, rich, and complete experience. Even in the back seat of the old 56 chevy, cramped, windows fogged up, wanting to come in her but afraid of pregnancy, the music of her panting "shoot it in" was better than the 8-track.
Unfortunately, I don't have much in me these days. The softer erections just aren't the same and the orgasms come much too soon.
At least I can still give hour long back rubs, it's good exercise too.
-kh
Ron B - 26 Sep 2006 17:22 GMT I've read all the posts under this topic and was really pleased.
Why?
Cuz it confirmed to me that we can talk about all things and say anything.
I've been helped so much with all phases of this trauma...and it's good to know that we still talk openly.
Mike's comment about still being on 'this side of the dirt' was superb.
:-) I.P. was so open...Doc...told the truth.
kh and the rest really told it like it is.
I'm very proud to have met you all.
I have a PSA due in October...a little over a year and a half out from RRP...and I hope for the best.
As a P.S. I'll mention that with September being PCa awareness month (though I thought the July baseball park tours brought more attention)...
I'm already seeing Breast Cancer donations and walks...even though October is THEIR month.
They are both horrible things and I'm not playing one over the other...but as described here often...
we guys have let this thing drift off (a blow to our manliness?)...while women have made that Pink Ribbon...known worldwide.
Since we can talk so openly here...we gotta have a louder voice.
Best to all,
Ron B.
Chicago
Buttercup's Dad - 27 Sep 2006 16:21 GMT Just a comment on the marital relations, or lack thereof, post PCa treatment. My observation is that this is one of the biggest impacts on our life after the surgery (I am not that familiar with the radiation SE's, but believe them to be basically the same). For many of us there were changes in our relationships and ED problems developing before the treatment, so there is more to it than just the side effects or surgery or radiation. Regardless, as a support group this should be a place where we can talk about these things openly. A part of the discussion is to have the opportunity to learn, get new ideas, and maybe sometimes to just be able to vent. So I too am pleased with the discussion here. Just my opinion.
Hi Ron: Hope you are doing well. Nothing new to report here except the ten additional pounds that I have gained in the last year. Take care.
David
> I've read all the posts under this topic and was really pleased. > [quoted text clipped - 39 lines] > > Chicago Beverley - 27 Sep 2006 18:16 GMT You need to take Buttercup for longer walks everyday! She's probably gained weight too! Bev
> Just a comment on the marital relations, or lack thereof, post PCa > treatment. My observation is that this is one of the biggest impacts [quoted text clipped - 57 lines] > > > > Chicago Anon Patient - 28 Sep 2006 03:12 GMT Thanks for all your replies (I changed my handle). I have been thinking about posting the original message here for several years, but was not sure how it would be received, and I felt uneasy about dissing my wife of 30 years, who just can't keep me stimulated enough anymore to be "functional." She's actually thought about giving me her blessing to seek out younger women who might be able to bring me around, but she's stopped short of doing so. I love her dearly, even though it's more spiritual than physical nowadays. I'm gratified to see the response here, and to know that I am not alone.
>Just a comment on the marital relations, or lack thereof, post PCa >treatment. My observation is that this is one of the biggest impacts [quoted text clipped - 57 lines] >> >> Chicago Steve Kramer - 29 Sep 2006 21:13 GMT > Just a comment on the marital relations, or lack thereof, post PCa > treatment. My observation is that this is one of the biggest impacts [quoted text clipped - 3 lines] > developing before the treatment, so there is more to it than just the > side effects or surgery or radiation. Man, are you ever correct! I recently figured out that my loss of function has cost me almost 72 love-making sessions in the nearly six years since surgery.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 Non Illegitimi Carborundum
Just - 28 Sep 2006 19:59 GMT snip.........................................
>I'm very proud to have met you all. snip..............................
I feel exactly the same way.
Great to have so valuable contributions to the group as we often do.
Just
MH - 25 Sep 2006 01:05 GMT > After surgery, I had no incontinence. PSA has remained undetectable. > I feel extremely lucky that the PC seems to be in long-term remission [quoted text clipped - 4 lines] > emerging, and if my disease had developed 3 years later, I probably > would have chosen LRP or robotic surgery. I had LRP four years ago, Doc.... and I have not had results as good as you describe. With injections, I can get an erection.... otherwise, no. There are times when that part is really tough to deal with..... but most of the time, I'm happy to be on this side of the dirt!
Take care! MikeH
Buttercup's Dad - 25 Sep 2006 20:34 GMT > I had LRP four years ago, Doc.... and I have not had results as good as you > describe. With injections, I can get an erection.... otherwise, no. [quoted text clipped - 3 lines] > Take care! > MikeH Three years for me. No erections and incontinent, now with artificial urinary sphincter but still leak. Wife spends more time watching Jeff Gordon than with me (her loss). Not sure about the PSA's because my uro says there is a new federal law that prevents them from giving out those test results over the phone (Curtis's horry story line: "I'm from the government and am here to help"). I agree with Mike: "I'm happy to be on this side of the dirt". Good one Mike!!
Steve Jordan - 25 Sep 2006 23:08 GMT On September 25, Buttercup's Dad wrote, in pertinent part:
(snip)
> Not sure about the PSA's because my > uro says there is a new federal law that prevents them from giving out > those test results over the phone There a solution. actually, two:
(1) Have the results mailed, and (2) Have the medic order the lab to send copies of future labs directly to the pt. And maybe (3) Ask for (demand politely) a reference -- chapter & verse -- to the law they cite.
Elsewhere I cited HIPAA for the same proposition and got a snarly reply from someone claiming it ain't so..
Regards,
Steve J
Buttercup's Dad - 27 Sep 2006 16:28 GMT What I did was talk to my primary care doc about this. He had a copy of the test results, which were <0.1, and he said that he would talk to the uro about this ridiculous situation. I see the uro again in November and we will see what happens then.
My wife's doctor has a procedure with a question and answer agreed upon ahead of time that they use to verify the identity of the person on the other side of the phone, e.g., "what is your mother's maiden name" or some such thing. I think if you talk to ten lawyers about the HIPPO law you would get ten different answers as to what it requires. My reaction is just to the insanity of a law that is meant to protect patient information being used to prevent the patient from getting his/her medical information!!!!! Charlie Brown said it best, "arrrrruuuugh!!!!!".
> On September 25, Buttercup's Dad wrote, in pertinent part: > [quoted text clipped - 16 lines] > > Steve J I.P. Freely - 29 Sep 2006 05:55 GMT > I think if you talk to ten lawyers about the HIPPO > law you would get ten different answers as to what it requires. A little group called the Dept of Veteran's Affairs addresses it this way: The only way to get our own data now is to walk in, show our I.D., and request it. I've done that twice now. I got my PSA right then and there, after waiting a month for it to come by mail; the other request, a CT scan result, arrived in the mail a year later, about 51 weeks after I walked into the civilian hospital that did the procedure under contract and walked out with the report.
Isn't it great what privacy laws are doing to our lives?
I.P.
Steve Kramer - 26 Sep 2006 01:48 GMT > Not sure about the PSA's because my > uro says there is a new federal law that prevents them from giving out > those test results over the phone Gawd! I'm so tired of hearing that.
Every time a hear such nonsense, I tell the doc, nurse, receptionist to show me the law. Once, I read HIPPA myself and showed THEM the law.
Tell your doc to look at your records, call the phone number and you'll be the one answering.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 Non Illegitimi Carborundum
callalily - 26 Sep 2006 19:05 GMT > > After surgery, I had no incontinence. PSA has remained undetectable. > > I feel extremely lucky that the PC seems to be in long-term remission [quoted text clipped - 4 lines] > > emerging, and if my disease had developed 3 years later, I probably > > would have chosen LRP or robotic surgery. If you haven't already done so you should see a good ED specialist (or optimally several). Most uros don't know a lot about this subject. Don't assume there's nothing that can be done. And a lot of things have changed over 5 years.
Also, lap surg is no guarantee against impotence. ..
Leah
tchtic@yahoo.com - 25 Sep 2006 01:10 GMT ...
> After surgery, I had no incontinence. PSA has remained undetectable. > I feel extremely lucky that the PC seems to be in long-term remission > (dare I say cure?), and that I've had no serious complications. > However, my sex life is dramatically changed. ...
That's my cue.
I'm at 2 years post Rad.
Without Vitamin-V, I manage to be slightly better than "stuffable". That's definitely NOT rock hard and very bendable but still capable of penetration. That's the good news.
The bad news is that, again, I only lasted about 2 minutes before having an orgasm and going completely limp. I'd rate the orgasm at an 7 on a scale of 1 to 10. This has been the pattern for the last several months. I'm hoping that as I recover, I'll last longer and get harder.
I am aware that sometimes, because of age or long term radiation damage, that the ED will get worse.
I did a lot of tongue and finger actitivity, about 20 minutes, before "giving it a go" myself so the overall experience was a positive one for both of us.
-kh
glassman - 25 Sep 2006 03:29 GMT > I'm a healthy 61 years old. I'm approaching my 5 year landmark post > RRP. Doesn't the above really say it all?
 Signature JK Sinrod www.SinrodStudios.com www.MyConeyIslandMemories.com
Leonard Evens - 25 Sep 2006 23:25 GMT > I'm a healthy 61 years old. I'm approaching my 5 year landmark post > RRP. I followed this group closely for about a year following my [quoted text clipped - 36 lines] > suffer after 30 years of marriage. In my case, PCA has dealt the > final blow. I don't know your specific situation, but as a couple we share some of the problems you describe, except we are ten years further on. My wife also has physical ailments which would make sex non-spontaneous even if I didn't use Viagra. Neither of us is as attractive as we were when we were young or even middle aged. Yet we manage to have a satisfying sex life.
Perhaps you should seek some counseling as a couple. You might be surprised as what might happen.
> Steve Kramer - 26 Sep 2006 01:42 GMT > I'm a healthy 61 years old. I'm approaching my 5 year landmark post > RRP. I followed this group closely for about a year following my > surgery, but have since only lurked occassionally. I don't remember you, Doc. But, I'm happy to here your kicking the bastard's a.s.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 Non Illegitimi Carborundum
callalily - 28 Sep 2006 03:45 GMT > I' However, my sex life is dramatically changed. > [quoted text clipped - 14 lines] > suffer after 30 years of marriage. In my case, PCA has dealt the > final blow. callalily - 28 Sep 2006 04:22 GMT > I'm a healthy 61 years old. I'm approaching my 5 year landmark post > RRP. I followed this group closely for about a year following my [quoted text clipped - 36 lines] > suffer after 30 years of marriage. In my case, PCA has dealt the > final blow. Doc--
You are not alone. Everybody in a monogamous relationship has this problem. After a while your partner begins to look like an old couch, comfortable but not very appealing.
The problem here is biology. I once read that men need Novelty in order to remain sexually interested. So I suggested that my husband order an instructional sex video to see if there was anything we had overlooked. I always see these tapes advertised in the ny times book review. They are intended for a more mature audience and have titles like "frisky in your forties""frolicking in your fifties", "Sexy in your sixties" or whatever. The message is: it's never too late.
II can't say I learned anything, but J. really liked the movie. Once he spent all night watching it. Finally, I asked him: Don't you ever get tired of that thing?" He replied, "Oh, you have the wrong idea. I'm just watching it to see it it's something that you might like"
I have to say that before we had automatic sex with injections this adult material served us very well in emergencies.
Maybe you guys should all go to Saudi Arabia where polygamy is common. I read that bin laden's father had about 80? wives. The problem is Islam doesn't allow you to have more than 4 wives at a time. So Pop would marry 4 women, divorce them, marrry annother 4 and so on.. Maybe that's why osama is so screwed up.
The only thing I can think of is this: After my husband's rlrp we did almost nothing for about 10 mos. so I finally broke down and bought a sex toy, as someone had suggested. I''d never done anything like this before so I came out of the store sweating buckets I was so embarrased.
I tried it out and it did nothing for me so I was really upset. It cost about $50 and you know, it's not returnable. I bought this model bec it was mentioned on a tv show.
Anyway, I had the inspiration to try it on my husband and he just loved it. It has about seven different "modes" so you don't get bored. When J. uses it he often has an orgasm without too much difficulty.
This product is called the "Power Princess" and my only regret is that it doesn't come in blue. It just looks funny to see a grown man holding a PINK toy.
BTW, for all you ladies, I came across a "talking dildo" I was dying of curiosity about what the d. said but it was very expensive so i never found out. Later on i told my husband about this product and we speculated out loud about the the dildo's volcabulary. I thought for a moment and said, I've got it: it says, "can we please talk later."
I hope things work out for you. I remember what somebody one told me: It doesn't pay to cheat on your spouse because you will REGRET it later. I don't know.
All the best.
Leah
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