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Advice wanted for upcoming RARP

Posted by someoneelse @someoneelse, Sep 29 2:17pm

Hey guys,
I am having a RARP procedure done 2 weeks from tomorrow. I am asking those of you that have been through it if you have any advice on how to prepare myself for before and after.

I have been doing a ton of kegels to hopefully lessen incontinence. My prostate is 84cc and it has been moderately interfering with my urination. I guess that is about to change!

How bad is the recovery? How long before I can get out and drive? How do I handle walking around with a catheter and a bag for a week? Will I be living in PJ’s and staying home for that week? What kind of pads will I need to order now to get ready? I already ordered some nighttime Depends underwear. What else will I need? How painful is it after the procedure?

What are some things I should not do??

I already have a penile implant that was put in 3 years ago that works great so that is one issue I will not have.

How long did it take you to feel normal again? Or do you?

My doctor says he has done over 4,000 of these and he has assured me the chances of the cancer having spread outside the gland are very low in my case. He is very well known in my area. BUT my mind keeps thinking about that and the what ifs anyway. Especially after reading so many stories here about what other guys are going through.

Any tips would be greatly appreciated.
Thanks

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Profile picture for jeff Marchi
jeff Marchi | @jeffmarc | Oct 3 8:56pm
In reply to @sandguy "Yeah, I just had mine four days ago. I'm feeling pretty well, if somewhat low-energy. Just..." + (show)
Profile picture for sanDGuy @sandguy

Yeah, I just had mine four days ago.
I'm feeling pretty well, if somewhat low-energy. Just acetaminophen, despite "autism dangers", is enough to control any belly pain, which has been minimal. The nurse during discharge was super helpful and loaded me up with all kinds of drugs and accoutrements--don't really need much of it!
I haven't been out and about much. My understanding is that it's ideal to not change catheter bags to minimize chances of UTI, so I just have the larger bag connected, hiding it discreetly in a plastic shopping bag when I do walk around outside. It seems to last the entire night, so I can just empty it in the morning. I do have a wife providing support.
Took me two days before I could move my bowels, also little to no appetite, even now.
I don't have any special continence provisions--I think that comes into play after about 10 days when the catheter is removed. Like you, I've been doing Kegels, so I hope to regains control before long. I've been advised NOT to drive before catheter removal--whether that's due to being vulnerable due to a tube sticking out of me, or the potential hazards of tubing getting snagged amongst pedals, I'm really unsure.
I swear that the worst thing at the hospital was being barked awake at 6am--I am NOT a morning person--to order my breakfast, served a couple of hours later. Hospitals are notoriously hard to sleep in, although I had a private room, which was really nice.
Sorry I'm kind of rambling. I am still feeling just a bit spacey--after effects of general, perhaps? But based on my experience THUS far, I'd say don't over-think it or over-worry it, it doesn't seem to be that big a deal. You'll be a bit stiff, sore, and slow-moving for a few days, but ultimately we're both going to beat this thing--we have similar health outlooks I think, and, hopefully, regain most of our prior capabilities. I think the nervous anticipation, which is to be understandable, is worse than the event itself, so try to be calm about it, and relax...

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@sandguy
They never told me not to drive. With the catheter bag strapped on my leg and wearing full length pants there’s no way it could get caught on anything.

As I mentioned the fourth day, I went out to client’s offices, for about three hours, to work on computer issues. Four days later, I worked full-time from then on, driving from one office to the next. No one had any idea I had a catheter.

I was 62 at the time, that probably help me recover quickly.

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sanDGuy | @sandguy | Oct 3 11:44pm

Yeah!
Cuz he's a macho, macho man!

(Seriously though, it's funny they didn't caution you about driving.)

Here are some takes on why it's discouraged:
➤ Distraction risk: Managing a catheter can divert attention.

➤ Comfort issues: Discomfort may impair focus on driving.

➤ Emergency situations: Catheter problems require immediate attention.

➤ Legal implications: Driving impaired can lead to legal penalties.

➤ Health concerns: Potential for accidents due to sudden urges.

I suspect insurance is a "driving" force behind this prohibition.

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beachflyer | @beachflyer | Oct 4 5:17pm

Hi Someoneelse

Today is exactly 12 months since RARP at UCI Medical Center . I was 67 , T2, Gleason 3+4 , favorable , PSA 2 at diagnosis (1 year earlier) and 3 at surgery. Post surgery, I only needed tylenol for a day or two and that was for the shoulder pain from the gas they inflate you up with during the procedure. Catheter was in for 7 days, could drive, but not fun as my car sits low and the bag tended to elevate on my leg and then there was the pinching from the tube, etc. Like Jeff M I had zero incontinence when they pulled the catheter so I threw away the box of pads.. woohooo! The only good side effect of the surgery besides removing the diseased prostate is that I can pee anywhere anytime. I am in and out of the urinal like a teenager while my friends stand there for who knows how long. ED is still there and while improving a 100 mg viagra is good for only about 80 to 90% erection so trimix is the only sure bet. Time will tell, but starting to think about plan “AMS implant” if necessary in 12 months . You should be fine with a surgeon that has done so many and ED is not going to be an issue for you.

All the Best!

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2 replies
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beachflyer | @beachflyer | Oct 4 5:59pm

A couple additional thoughts, The 7 or so (some less) holes created for the RARP ports somewhat disguise the fact that this is still a significant surgery.
Your physical health, body mass, prostate size , etc all play a role in the outcome so even with equal disease , surgical outcomes can vary. I had some urinary urgency for 3 months wherein I would pee only to feel the need to do it again, but nothing was there. I learned that in my case I was sensitive to certain foods (caffeine, some spicy foods) and when I cut back on those the urgency abated. When I asked my surgeon (Dr Ahlering) about it, he replied “we removed your prostate which has been your bladders lifelong best friend… We then did some work on the urethral bladder neck along with physically detaching it and lowering it down in the pelvic area to make up for the loss of urethra during the prostate removal. Your bladder has been through a lot and it will take time to heal. “
Hmmm.. so that all makes sense now and I have no issues with any of that now. Things in that regard are pretty normal and barring secondary treatments, I suspect that holds true for most of us in time.

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retireditguy | @retireditguy | Oct 4 11:24pm
In reply to @beachflyer "Hi Someoneelse Today is exactly 12 months since RARP at UCI Medical Center . I was..." + (show)
Profile picture for beachflyer @beachflyer

Hi Someoneelse

Today is exactly 12 months since RARP at UCI Medical Center . I was 67 , T2, Gleason 3+4 , favorable , PSA 2 at diagnosis (1 year earlier) and 3 at surgery. Post surgery, I only needed tylenol for a day or two and that was for the shoulder pain from the gas they inflate you up with during the procedure. Catheter was in for 7 days, could drive, but not fun as my car sits low and the bag tended to elevate on my leg and then there was the pinching from the tube, etc. Like Jeff M I had zero incontinence when they pulled the catheter so I threw away the box of pads.. woohooo! The only good side effect of the surgery besides removing the diseased prostate is that I can pee anywhere anytime. I am in and out of the urinal like a teenager while my friends stand there for who knows how long. ED is still there and while improving a 100 mg viagra is good for only about 80 to 90% erection so trimix is the only sure bet. Time will tell, but starting to think about plan “AMS implant” if necessary in 12 months . You should be fine with a surgeon that has done so many and ED is not going to be an issue for you.

All the Best!

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Hi @beachflyer. Your experience sounds a lot like mine. I had RARP just over 15 months ago. I also still had mild ED (80% - 90%) at 12 months. I just wanted to let you know that I made another improvement around 14 months and now (at 15 months) I feel I'm back to pre-surgery capability. I take daily 5mg Cialis (generic) and 100mg Viagra (generic) an hour before on an empty stomach. So don't give up yet and it definitely took me longer than 12 months to get back to pre-surgery capability. Hopefully you'll also continue to improve and get back to pre-surgery as well. Best wishes.

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beachflyer | @beachflyer | Oct 5 7:01am
In reply to @retireditguy "Hi @beachflyer. Your experience sounds a lot like mine. I had RARP just over 15 months..." + (show)
Profile picture for retireditguy @retireditguy

Hi @beachflyer. Your experience sounds a lot like mine. I had RARP just over 15 months ago. I also still had mild ED (80% - 90%) at 12 months. I just wanted to let you know that I made another improvement around 14 months and now (at 15 months) I feel I'm back to pre-surgery capability. I take daily 5mg Cialis (generic) and 100mg Viagra (generic) an hour before on an empty stomach. So don't give up yet and it definitely took me longer than 12 months to get back to pre-surgery capability. Hopefully you'll also continue to improve and get back to pre-surgery as well. Best wishes.

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@retireditguy
Hello Retireditguy,

Thank you so much for the comment, it means a lot as no one prepares you for this phase of recovery and not
much is said in these forums about recovery plateaus. Seems like things improve and then level off leaving you wondering if that was all she wrote. I will stay with the rehab stuff and daily cialis. Thanks again, you made my day.
JA

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someoneelse | @someoneelse | Oct 5 2:59pm
In reply to @beachflyer "Hi Someoneelse Today is exactly 12 months since RARP at UCI Medical Center . I was..." + (show)
Profile picture for beachflyer @beachflyer

Hi Someoneelse

Today is exactly 12 months since RARP at UCI Medical Center . I was 67 , T2, Gleason 3+4 , favorable , PSA 2 at diagnosis (1 year earlier) and 3 at surgery. Post surgery, I only needed tylenol for a day or two and that was for the shoulder pain from the gas they inflate you up with during the procedure. Catheter was in for 7 days, could drive, but not fun as my car sits low and the bag tended to elevate on my leg and then there was the pinching from the tube, etc. Like Jeff M I had zero incontinence when they pulled the catheter so I threw away the box of pads.. woohooo! The only good side effect of the surgery besides removing the diseased prostate is that I can pee anywhere anytime. I am in and out of the urinal like a teenager while my friends stand there for who knows how long. ED is still there and while improving a 100 mg viagra is good for only about 80 to 90% erection so trimix is the only sure bet. Time will tell, but starting to think about plan “AMS implant” if necessary in 12 months . You should be fine with a surgeon that has done so many and ED is not going to be an issue for you.

All the Best!

Jump to this post

@beachflyer Thanks for you reply. I hope I have the same results as you. I am 3+ 4 as well with 9.85 PSA with an 84cc prostate. Decipher score .60. Funny my PIRAD score is 1 though. I am 68 years old.

Anyway I got the 24 cm AMS 700 CX inflatable penile prosthesis a few years ago. I got tired of the pills, they made me feel like crap and didnt always work. I did trimix for years and it works really well. But I got tired of sticking needles in my penis. I got many big bruises over the years. As soon as I turned 65 I got the implant. Medicare paid for most of it. It cost me $200 out of pocket. No more drugs or needles. In my case it works well. It might be a good option for you.

Good luck

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