six months after robotic RP - the good and the bad (long)

This post is to help me vent my feelings that I have experienced over the last six months since my robotic prostatectomy.  I guess I am looking for some words of support but also to give a real view of life after surgery as it was for me.  It's clear its different for all.  Hopefully someone with a new diagnosis can use my information in a positive way.  Also, I know that some posters' situations are more serious than mine and I never forget that when thinking about my disease.  I will start with the good:

1)  My procedure was uncomplicated and my path results were very good.  My first post-op PSA was also good (see sig).  The surgical approach has given me an excellent view of where my cancer stands and what lies ahead.  I am reassured to the degree that non-op approach could not probably do.

2) I am no longer wearing pads and have generally continent since about 18 weeks.  I sleep throught the night without getting up on most nights.

3) My energy and fitness has returned to normal. My initial depression has greatly improved.

4) Through vacuum pump, cialis, and now caverject I have not lost any size and there has been no overall change in the appearance of my penis.

5) Caverject works 100%

The bad: 

1) While I am continent I can't say I am comfortable at all times.  I will leak or drop or to when mowing the lawn or jogging.  I still wear a pad for "boot camp" excercise class as I can still leak in that situation.  I also have a stinging bladder pressure at times that makes me feel like I have to go.  This will relieve if I get off my feet.  I generally urinate every 2 hours or so all day while awake.  Therefore, while I am continent I still have ongoing urinary symptoms.  I really didn't expect this.  I assumed continent meant normal.  I am hoping that these symptoms will go away but they have been stable for the last two months. 

2) The ED is very depressing. Improvement is very slow. I have used the pump religeously and have been using cialis nightly 5mg from 3 weeks out.  I can achieve fullness and slight erectiton with heavy stimulation.  No change in last two months. I started Caverject at 15mcg and got it down to 5mcg.  I thought this was a good sign but I tried last night with cialis 20mg and I was no better.  I know it is early but as the weeks turn into months you start to wonder whether its coming back.

3) Depression - very bad at first but improving. While my cancer outcome is good my side effects have got me down.  My wife initially was very supportive but started to get angry about my depression.  She feels that my pre-occupation with erections is counterproductive.  I think women just don't understand the psyche of a male.  She tells me that my focus on erections minimizes the rest of our relationship and life.  I don't know how to respond.  I know that I don't feel as positive about life anymore.  I always looked at my self as young, athletic, and sexually aggressive.  I feel that this has been stripped at this point.  I constantly fret about whether I made the wrong therapy choice. I knew the risks of surgery but assumed that I would be OK.  Knowing what I know now I would have seriously considered other options which I did not.  I am hoping my one year assessment will be more positive.

 Anyways- I am running out of space .  I am still moving forward and hoping to fight off this cancer and side effects of surgery. Any comments are appreciated.

HCV, that is a very good report. You are making progress. I know your want it to be faster but your doing very well. I think most of us that had good results from our surgery had very similar progress and also the depression as well. WE want to be our old self and even at 4 years out I do miss the old cajun guy.

Good luck and keep working at it. We never give up.

Cajun Jeff

I have been where you are.  At 6 months, on a good day, I had a little chubbiness.

At 12 months, on a good day, it worked.

Listen to your wife.  You are fortunate to have a wife who is there for you and for whom an erection isn't something she's waiting for.  Not all of the guys here have that.

If you can forget about the ED, you can go places with your wife that you have never been before.   I've come to learn that ED is not the worst thing that ever happened to my sex life.  It can have positive effects because you're not focused on that one thing.  That one thing doesn't matter for today.

Best wishes.

Dave

I went the other route and have never been incontinent. But like before I pee all the time and when my radiation cystitis flares up I pee every 30 minutes and then my urine is bloody and it passes like razor blades.

Without cialis I cannot get a full erection but with 10mg every other day I can be ready any time.

Mentally. I've been on anti depressants twice. I am currently two weeks away from total detox. I still attend a support group and see a therapist twice a month.

But i am alive and I feel better than I ever again thought I would.

I'll break out the little violin for you if you want but I think your gonna be fine and certainly better than I was at that stage   .

ed

Sorry I see from your original post you are already getting erections from caverject, good for you. I use trimix because I couldn't afford caverject, but trimix, bimix, caverject you get the same results. If you get really frustrated you could always consider a penile implant, but the injections are good enough for me, god bless.........

Hi HCV,

Sorry you are feeling down, we all have our ups and downs with this disease. Being able to tell your feelings in this forum helps. That is such a wonerful benefit of the Healing Well.

I got sober 23 years ago. It took me quite awhile to accept that I can't drink any more. But acceptance is the answer to all my problems today. The day I found out I had PC was 6 days after my "sober birthday". When I got the news, I accepted it. It did feel like a punch in the stomach, but this too shall past. It didn't take me long to decide on DaVinci surgery. After talking to my two sisters who both had breast cancer, they said get the cancer OUT!

I was afraid of the side effects like all of us. But
I accepted them to continue a healthy life with my wife for many more years to come. My uro told me that day that my life will change from this point on, and he was right. I accepted that I may not ever have sex again. I remember saying, oh well, I guess I had a pretty good run all these years. If it is over, so be it.
I loved drinking but learned I can live happily ever after without it. In fact, my life is BETTER without it.

You know, it may sound corny, but there is a lot of wisdom in the "One day at a time" saying. I had a hard time looking at never drinking again. But when I started looking at not drinking today, it worked better for me. It was a much smaller hill to climb than not drinking forever!

I am 14 weeks out from surgery this Tuesday. I am leaking like a sieve, 5-7 pads a day, doing Kegels, no caffine, no Tex-Mex spicey food ( that is real hard for me), not drinking fluids after 9:00, nothing is working - yet! But it will. For whatever reason, that is the way it is suppose to be, For Me. Other men, such as yourself, are continent but not me. Oh well, good for you, my time will come.

I know we are not suppose to talk religion on this forum, but my Higher Power gets me through the day, everyday. I say the Serenity Prayer when days seem too tough to make it through.
What I learned from it is to accept things I can't change. When I started doing that, it was like giving up a part time job and now I have more time. Why dwell on things all day I can't change. But if there IS something I can change, then I need to work on that. And, I need the wisdom to know the difference.

I am using Viagra, ED pumps etc. and there is life down there. I have had some orgasms using manual stimulation. If that is how it is going to be, I can accept that because, early on, I accepted that I may not have sex again.

My wife has been wonderful through all this. She has accepted life also on life's terms. She has supported me through it all and we will be fine. Now, we have discovered she has a heart problem that is going to require surgery in 2 weeks. We will get through this also.

Sometimes we wonder, Why me? I have learned that the answer is just, " because that is how it is suppose to be for me". There is no reason, I just have to accept it and move on.

Good luck to you brother, accept the things that you cannot change
but change the things you can.

Bill

Thanks for the supporive and insightful comments.  What I hear from most of you is what I hear from my wife.  I know that part of my problem has been denial - I just want everything to be as it was.  I have been working on this.  Also, to some degree I was underprepared going into the surgery mentally.  I really thought incontinence would be a non- issue after a couple of months and that ED would be on the mend.  I realize now that my time frame was too aggressive but I do think that surgeons and urology dept web sites minimize the recovery.  My goal is to give this a full year before reassessing the situation.  But- as well all know who are on this sight-this situation appears to have changed my life going forward.

To Big Mac (Bill) - I liked the tone of your post. It says a lot about you, and there are wise lessons in your words, particuarly to men new to PC. Acceptence is what it is all about, the sooner one can come to terms with accepting life's blows and slugs, the sooner one can be at peace.

Too many look for blame - inside and outside themselves, that is totally non-productive and serves no purpose.

It's best to come to terms with the cards that one is dealt, like you have done, I have done, and many others, and keep moving forward to the best of one's abilities

Good post, good attitude.

David in SC

Hey brother....sorry you are feeling down.  While we all have some similarities with our post op problems none of us are exactly the same I guess...With the ED venue all I have to offer is what I know..So here is my advice.  Work on it.  I've found that stimulation requires much more effort...by that I mean direct stimulation both visual and physical...Go exploring what worked before may not work now.  For lack of a better explanation be like Quagmire when he discovered internet ****. He stayed in doors for weeks, and when peter saw him after a few weeks his right arm looked like Popeye's arm.

Go trolling for STIMULATION.....Try every night if you have too.  I was told nerves can keep trying to repair themselves for up to 2 1/2 years...Get that blood pumping.  So looking down and commanding Jr. to get to attention doesn't work anymore lol...darn it.  Now its like tryng to start a car with a hand crank...;)  I started looking for stimuation within days after being at home...It was not fun trying to start that itty bitty motor either...It took a few months before the spark was big enough to cause a flicker...so don't give up.

My problem now is I can get a woodie but my climax is.....hmm...Well its like a ghost.  Its there...but not. And yes I realize they are dry etc..I just mean I can't get the feeling....even if I get a good woodie. (with a lot more effort)  I worry about that cause I don't think that "feeling" will come back but at least I have memory lol it is like my body knows what it is supposed too do and even when it is supposed to...but it doesn't .  I'm still trying though...but like you and most others I fight those urges to feel bad about it..And lot of people here say the climax is better for them now even if its dry..

So don't give up...work on that woodie...Hopefully there is something you can discover that helps you build on that...Just try and not let the mind be the hindrance. (sounds easy when I type it though I know it isn't)

Good luck and prayers going out.

Hawk

Post Edited (hawkgfr) : 10/22/2012 8:46:59 PM (GMT-6)