2 weeks post RRP with symptom questions

Bill,

It took my husband 3 and 1/2 months to become dry with the help of biofeedback.

I feel as though I could have written the last paragraph of your last post. I come here because I cannot and would not talk to friends about my husband's issues with PCa, surgery and it's side effects. When close friends ask how my husband is doing I always say fine but he has some side effects. No one probes. When acquaintances ask about my husband I just say he is doing fine.

I'm not mad at my surgeon. He did his job and from what I understand he did it well.

I'm very lucky that the post op pathology report for me was excellent. Most likely I will not need any follow-up other than the PSA (prostate specific anxiety) tests at one month, 4 months, and then every 6 months after that.

I'm angry at myself for going through with this surgery and not knowing exactly what to expect. I'm angry that in 2013 this is the treatment we have to endure for both slow growing cancers that might never cause a problem as well as those that might be more aggressive. I'm angry that there's no precise science to the rehabilitation and recovery and it's an answer of "could be 3 months to 2 years and hopefully everything will be working at that point".

So yeah, I'm just pissed off at this point and don't feel like someone saved my life. I just feel like they took my great life away from me and said "OK, go see if you can find it and get it back".

Bill - you are feeling what we all feel after surgery. I am surprised that you are feeling it so soon. You have a long road ahead but you WILL be much better in time. You will need support to get through the next few months. If you want you can send me a message through email and I can share some thoughts. I do agree - however- that this surgery is more than we realize going in. I too - just wanted to hear that I would be cured. But the realization of side effects surfaces after surgery is complete. Hang in there. If you want you can search my old posts to see where my head has been along the way.

Thanks all. I'm trying to get my head around this and get into the game so to speak. As Dave said, being a cyclist and the season about to begin has me down. I'm used to setbacks due to accidents. The worse was a badly broken shoulder I suffered in an accident in April one season. They told me I'd be 6 to 8 weeks before I could start rehab and it was devastating. The difference was that I knew a time frame. I knew that once I was given the green light to begin rehab I'd work with physical therapists and do everything they told me. I knew they would push me hard and I was ready for it. They asked me my number 1 goal and I told them I was going to ride in the Pan Mass Challenge, a 2 day 200 mile bike ride to raise money for the Dana Farber Cancer Institute (ironic huh). They said "that's only 5 weeks away". I said "you're right, let's get to work".

My first week moving my arm was almost impossible. I started by getting into a pool and letting it float. I had to work through the pain. Oh yeah, they also said I'd probably not get more than 70% range of motion back. I went from barely moving my arm a couple inches to riding that Pan Mass Challenge 5 weeks later. Within 6 months of rehab I had regained almost 95% of my range of motion.

This world of post RRP rehab is one I feel like I have no control over. I've got a plan or guide to follow for ED rehab and am hoping for the best. The incontinence issue I've only got Kegels and time. It's going to take time and patience I'm learning. Hopefully I'll be able to accept it and deal with the fact that at least the next year or so will not be my normal life.

Mark my words now though. I WILL ride in my 25th Pan Mass Challenge this coming August.

BillD,

I think a lot of guys get blindsided by incontinence after RP. I know I was. We are all so focused on ED in out thinking and our planning that incontinence sort of sneaks us on us as a nasty surprise. Before I would seriously consider pulling the trigger for surgery I had my recovery all planned out. I would buy a vacuum device and if PDE5i drugs didn't work -- Cialis, Levitra, Viagra, etc. -- I would get my urologist to teach me to inject. I was aware of penile implants as a last resort but I hoped that I wouldn't get that far into "The Plan." I also considered incontinence but not very seriously -- I learned that nine out of ten men will be continent within a year, most of them much sooner, and I thought "Well, that's OK then. I just have to be reasonably lucky and I'll be fine."

Then, a few days after the catheter came out I realized that incontinence trumps potency. Who cares, after all, what that limp, leaky, damp little thing might potentially be able to do? What earthly use was "The Plan" to me? I came crashing to the ground. And then I learned that to have my best odds of avoiding recurrence I would need to put up with two and a half to three years of castrate-level testosterone into the mix. Needless to say, I needed to amend The Plan in certain regards, but first I had the necessary tantrums and an extended period of sulking.

The New Plan differs from the Old Plan in that it is a more complete version of the original Plan and in that it has a new second objective. It completes the original plan by adding a defense-in-depth strategy for incontinence that is similar to the plan for ED. I will give Kegel exercises a year and, if I am not dry by that time I will talk to my doctor about other options -- slings and artificial sphincters and whatever else he might suggest. Incontinence can be fixed almost all the time if one doesn't give up. The new plan also includes a more serious contingency for penile implants if my ED seems to merit it (which I continue to hope it won't).

The second thrust in the New Plan arises from the realization that this can all take a while. Some of the energy that I might have used to rush the unrushable parts of the plan are diverted to finding ways to work around the problems while The New Plan unfolds. I will not give prostate cancer the satisfaction of stopping me.

So my advice to you is to do a sensible number of Kegels, talk to your urologist about when it will make sense to get some biofeedback training (it helps) and to work out what sort of pads you will need to wear while cycling as you get back into training.

kadoetee, wow, sounds like you're doing great! The release papers I got from the Vattikuti did say no sex for 3 weeks after surgery. That wasn't a problem unfortunately thanks to the surgery as it wasn't going to happen.

I'm 3.5 weeks post surgery and am down to 1 pad a day and it's not soaked at the end of the day so I'm seeing improvement there. I take at least one walk that's 2.5 to 3 miles a day and make sure I'm not sitting constantly the rest of the day. As far as ED, that's a problem but I'm still optimistic that it'll work itself out with therapy and time. Seeing some progress there but nothing to write home (just here) about.

Feeling generally good. I had been experiencing perineal pain last week and managed to get through that. I personally found that aleve plus tylenol plus colace have got me through that and so far it's virtually gone.