Advice for First Few Weeks Post RP

[btl258]

Hello everyone, I am will have DaVinci assisted RP on Monday morning and am looking for any tips / advice for the first few days and week(s) post surgery. My surgeon is extremely experienced (I will be ~2,700th robot assisted case).

Background: I'm 46 years old, Dx'd in Feb. PSA was 32.2 with 12/12 cores positive, Gleason 8. The bone scan, pelvis & abdomen CT scan, and multi-pan MRI were unable to identify any issues conclusively (the scans highlighted a few areas, but multiple readings and Drs. believe it is related to my degenerative disc disease).

The original multi-pan MRI showed gross extra-capsular extension with invasion of the right neurovascular bundle and bilateral seminal vesicles. Category 5 lesion measuring 4.2 x 3.4 cm transaxially, 2.8 cm craniocaudal.

I have been on Firmagon for the past two months (trying to see if shrinking would pull away from neurovascular bundle in order to preserve function). The result has been positive as my PSA is now 4.8 (85% reduction), the prostate gland shrunk from 32mL to 19mL (41% reduction) , and lesion is now 3.2 x 1.6 cm transaxially, 1.6 cm craniocaudal). Unfortunately, virtually all shrinkage happened in the gland (slight reduction around nerve bundle).

Dr recommended (and I agreed) to not delay surgery and stay with ADT longer since main goal was to preserve neurovascular bundle and shrink to make removal easier. Since my Gleason score is so high, don't want to wait too long before removing in case it spreads.

Any advice (or links to advice that helped you) would be greatly appreciated.

Thanks.

Brian

[Hidden]

Hi

Just try and stay positive and remember this is going to keep you alive for many years to come it's going to save your life keep calm buddy wishing you all the best for Monday.

[Paulo1968]

Hi Brian,

I am glad you have done good improvements with your initial tretament and that you are ready for surgery. From what I understood later, during surgery the doctors are able to see a lot from how the situation is which no scan can. I wish you well and a successful surgery.

My experience of the first days post-surgery, hope it helps:

- No pain I couldn't bear. I was surprised with that. I felt a bit when preparing to stand up and walk (happenen in the second day). When I moved home 4 days later I never took pills for pain.

- Bad for me, as it created a lof of discomfort is to have the catether. Also no pain but it is a nuisance. I had it removed on day 6 after surgery and the process of removal was also pain free. After this the leakages' problems started, but at least we gained mobility. I was continent for 3 days... Then I don' know why, but I started having small leakages all day long, but I never wore more than a pad a day;

- Also bad was that I had the belly inflated for 2 weeks. It was ok when waking up, but along the day it got worse and this caused discomfort and some pain as we move. It went away in 2 weeks;

- You will also have a drain that is removed 1 or 2 days after surgery. I felt a bit of pain when this was removed.

No further big situations worth being mentioned. I don't have any particular tip, you will experience that the surgery, even being a big one, will not cause you many complications and we get over them quicker and easier. I am not speaking about the side effects, rather only the surgery recovery aspects. You just need to go for the surgery with the mind clear this is to get rid of that problem and you will be fine after it.

All the best for Monday,

Paulo

[pjoshea13]

I had open surgery 14 years ago. My advice is mostly about urinary control.

Practice the Kegel exercises ahead of time (not at all difficult).

webmd.com/urinary-incontine...

Be aware that getting up from a chair can lead to a dribble if you forget to tense those muscles.

A sudden sneeze or laughter can be a challenge at first, but control becomes second nature very quickly.

Orgasm can be a problematic. Empty your bladder first.

Be active within reason. i.e. no need to sit around all day afterwards.

Best, -Patrick

[btl258 in reply to pjoshea13]

Thankfully I started Kegel exercises in March when the initial thought was surgery right away, before I decided to do ADT first. I've noticed a huge difference since I've started, so hopefully this helps.

[davey1957]

Hi Brian,

Wishing you the best with your surgery and recovery. I too did not suffer with any major pain, just discomfort and the indignity of having a catheter, which actually was easier to deal with then I thought it would be. More an annoyance for me! I had a very bad reaction to the anesthesia which made me very Ill the first two days but I think that was unusual and really didn’t have anything to do with the surgery itself. Getting up and walking as soon as possible I think is helpful. Also as mentioned, doing the kugels before the surgery and as soon as recommended after the surgery is important. I was able to become continent very soon after the surgery and now only occasionally have a small leak. The ED is a longer process for me, and the biggest adjustment I’ve had to make. Finding new ways into my sexuality is a challenge, on my best days I think of it as a new adventure! Talking about it and laughing about it with people close to me has helped take some of the power out of it for me. Grateful to be healthy, 4 months out from my surgery and I am back to my full workout at the gym and feeling as good as ever!

Xo

Davey

[btl258 in reply to davey1957]

Glad to hear about the gym. I've been going to the gym 5-6 days a week for 9 years now and it has become a way of life for me and I have a hard time starting the day without it. I know I will have to start easy and drop the weight significantly, but incontinence, ED and the gym are my three biggest concerns (well, other than positive margins, etc., but I'm trying to not think about that now!).

[davey1957 in reply to btl258]

I didn’t lift any weights for a good 6 weeks as per docs instruction. I’m still not lifting as heavy, lighter weights and more reps. . Now I’m back to pushing myself again and that feels good! Give your body plenty of time to rest and heal. Walking is the best medicine I think in the first 6 weeks. Let us know hoe things go.

Xo

[michael42301]

I had the catheter in for nearly 2 weeks, because my surgery took place before Christmas, and it was getting uncomfortable for a few days before it was removed. Removal was a breeze. The incontinence faded in a few weeks. Six years later, I have to be careful about leaking when I'm sick or really tired, but it's not a big deal. The doctor prescribed opiods for pain, but I got by with Advil just fine; there was almost no pain from the incisions but a lot of discomfort from the gas they filled me with. I felt like a Macy's Parade balloon. Start walking as soon as possible; it helps with the gas, among other things. As soon as the doctor clears you for it, start doing Kegels. That will help with the incontinence. You also need to relearn the signals your bladder is sending you, because those will change after surgery. When it says to go pee, it means now, dammit. As far as sexual function, the doctor prescribed low doses of ED drugs at my 6-week checkup, also prescribed a vacuum pump and told me to play with myself twice a day and to try to have sex at least once a week. This is the weirdest damn disease.

[Ken51]

Get a zero gravity chair (lawn/ deck wide type chair) your not going to want to lay down in bed when you get home. No caffeine. Increasing walking everyday. Try not to take the pain meds if possible. Double up on Advil if you can tolerate it. Keep a watch out for smelly urine get to the doctor right away if detected. Watch out when taking the blood thinners post op. The blood could accumulate in the penis which makes it look worse than what it is.