Need practical advice re:RRP for 76 year-old in fair shape

[AliceinW57]

Hi everyone,

My husband, just turned 76, is having a robotic radical prostatectomy on 5/13. He is (so far) Gleason 4+3, high Decipher score., clean PSMA. We eventually chose surgery as he's also been in retention for many months due to a median lobe, he preferred that to doing a HoLep followed by radiation.

So now I am just seeking practical tips for the post-surgery period. We are travelling to Chicago, 5-6 hours away, to have surgery performed by a far better surgeon than any around our area, NE Wisconsin, Scott Eggener at U of Chicago.

They have NOT provided us with ANY post-surgery info/directions, so of course I read everything I could find on other urology sites. I worry about blood clots as my husband has a Watchman implant for VERY OCCASIONAL episodes of AFib, but he's also overweight/out of shape. I bought compressions stockings 20-30 mms strength, a pair of SCD calf sleeves to use on the drive home [I will be driving, of course], an under-chair elliptical, and compression shorts. I read about the "passing gas" test so I understand he may be on clear liquids after discharge, which he's not happy about but perhaps his genuinely great, hereditary GI system will help him there Any real-life suggestions to help move that along?

Did you remove the catheter yourself, or go to a doctor's office? Because we can't run back to Chicago for every little thing, I wondered whether it might be a good idea to go to the urologist who found the cancer (although he and the initial pathology report got his cancer wrong, but I got 2nd and 3rd opinions) and have his catheter removed by someone there who can kind of see how he's doing at that point??

Also, did any of you have to have a J-P drain from the lymph node dissection, and was it removed before you were discharged??And/or did you have to have a cystogram???

My husband wasn't able to begin pelvic floor therapy because of being on a Foley, but I have appointments set up beginning 10 days out; is that good timing, too soon/late?

As for leakage and accidents, any practical advice?? Specific recommendations for underwear, etc? Even best brands? We will put a mattress protector on before we leave, should I also get something to protect chairs?

I am very small, about a foot shorter/100+lbs. lighter, will I be able to help him adequately on my own? I just read that he will be VERY stiff/immobile from the waist up for awhile, which makes it painful or at least uncomfortable to sit, get out of bed, etc .I have rotator cuff problems and would not do well with his full weight on my shoulders, so not sure how to help him physically.

And I'd appreciate your experiences with recovery especially if you are around his age, over-weight and in middling shape generally.

Finally, this is premature, but obviously they will biopsy the removed tissue- despite the clean PSMA, is there a real chance there could be residual cancer somehow, and if that was your situation, how soon and what type of radiation did you have? And is it still VERY IMPORTANT where we would do that RT??? Just trying to think ahead, I like being prepared

Please share your experiences, we are very grateful in advance!!

[Justfor_]

I had three (3) cystographies (bladder X-rays) before anastomosis tightness was radiographically verified and the catheter could be removed, almost one month post RALP. From the research I did during that time the odds of a blind catheter removal going astray are of the order of 5%.

[AliceinW57 in reply to Justfor_]

Thank you, appreciate the reply. So you had three attempts to remove the catheter, too? Did they automatically do the cystographies at those times?? Where did you go? And how are you doing now??

[Justfor_ in reply to AliceinW57]

I flew from Athens to Hamburg for the RP. Martini Klinik at Ependorf is possibly the most specialized centre in Europe. 5 years ago they had 4 operation rooms (3 robotic DaVinci and 1 open) performing 3 procedures per suite per day solidly booked for typically 3 months. You are in the US and the standards there are set for an average of 5-6 lymph nodes dissected (I had 20) and no routine intraoperative "frozen sections" (has your surgeon mentioned them?). Coming back to catheter removal first try was 6 days after the procedure. Among a group of 7 + 1 people that were radiographed that day I was the one to fail the test. The +1 was someone returning after 2 weeks as had also failed the first attempt. My second attempt,15 days post RP, also failed. Third, 28 days post RP, was successful and catheter was removed on the spot. If catheter is removed before tightness has been totally restored and urine starts to drip into the pelvis, the patient is fried.

[AliceinW57 in reply to Justfor_]

Oh my, that is certainly extremely valuable advice, thanks, and hope you are doing well now

[Justfor_ in reply to AliceinW57]

If you didn't get it by now, I am not the typical PCa patient. I am the odd one out! I recommend that you check my thread entitled: "An engineer's Bicalutamide maneuvers" as a means of kicking irradiation down the road.

[NanoMRI in reply to Justfor_]

I did not learn about frozen section pathology until I traveled to Belgium for my salvage lymph node surgery. Wish I had it with my RP. Recently, I learned the Mayo Clinic in US offers this methodology routinely.

[Tony666]

hi. Had a prostatectomy 4 years ago. Here are a few thoughts.

1. After a prostatectomy, you are VERY sore. I had a 30 minute drive from hospital to home and I felt every bump in the road. A 5-6 hour drive after the operation will hurt your husband like h***. You may consider spending the night in Chicago. Also get lots of pillows for the car seat and drive very slowly.

2. I would say the trend more and more is to have the patient take the catheter out himself. The hospital asked me to do it and I refused. I suppose I could have done it but I am squeamish about those parts. If you can get someone local - even a trained nurse - I would recommend it. Oh and I had a friend who was so uncomfortable with the catheter he took it out early - a big mistake as there were complications. Keep it on for the full 7-8 days even if it is uncomfortable.

3. Get a potty cushion to go on your toilet. As I said it’s sore down there for a while and going to the bathroom particularly with a catheter is not easy. You want something soft to sit on

4. Walk. It’s important even if it hurts and he can’t do it for long. Walking helps the healing and also reduces the chance of a blood clot. They will probably give him both a regular and a leg bag. For me, the leg bag was a lot of work after a day or two fooling with it, I preferred to walk carrying the normal bag in a plastic grocery bag with one hand.

5. For the first two nights it’s going to be rough. Both because it hurts and because of the catheter. He should be prepared not to get much sleep. I got an inclined foam body pillow which helped. (And you might just put a plastic sheet on the bed - in case of any accidental drips)

6. After a day or two, it gets better. He can shower with the catheter. He should start taking viagra or other similar after a few days. It may (not in all cases but no harm) help to keep blood flowing down there and reduce ED . Probably for about 6 months. There are other possibilities to address ED but let’s leave it at that for now

7. On incontinence. What I did is get several different brands of male diapers and tried them on before surgery. That way I knew which ones I was most comfortable with and stocked up before hand. Also got different sized male pads. Also got 6 regular fruit of the loom underpants. I normally where boxers but boxers can’t hold pads. So when he transitions to pads you want tighty Whities. I think I did about 3 weeks in diapers, 2 weeks with large pads and 2 weeks in small pads before gaining full continence. But everyone is different.

Hope this helps.

[AliceinW57 in reply to Tony666]

Oh, so much help, Tony, thank you! I have a donut pillow coming for the car but it never occurred to me about the toilet, yikes!

We really don't have much choice to stay longer, although we would if he had complications. We have 2 elderly cats w/serious health issues and a cat sitter who's a sweetie but I think it's going to be tough on the cats...however, what you said about the pain on the way home makes me think we need to take the SUV/ My car is a very low-to-the-ground Saturn, and I rarely drive the SUV but it seems that might be better for him.

May I ask whether you were able to (apologies) pass gas so you could at least have soft foods right away??? He's going to be miserable and being able to at least get a milkshake or ice cream would cheer him up...

How are you doing, by the way?

[Tony666 in reply to AliceinW57]

I’m good. One of the lucky ones with no recurrence so far (so no radiation). Basically back to normal after about 6 months. On gas, that was a difficult one for me. I didn’t pass gas or go to the bathroom for 3 days. The docs for the first day kept me on a liquid diet but after no gas they said I could eat soft food. Before the surgery I was fairly regular once a day. But after it was more like every 3 days for about 6 months but now it’s back to regular. I think the surgery disrupted the biom in my colon. I did eat a lot of yogurt and took Metamucil and it seemed to help rebuild my colon biom. Wishing your husband a good recovery.

[AliceinW57 in reply to Tony666]

Hi again, Tony :)So I'm wondering if it would be a good idea to get him a great probiotic, too??? If he only 'goes' every 3 days he will think he's dying, believe me, he's THAT regular!!!

[clayfin in reply to AliceinW57]

Put him on a soft diet two or three days before and after his procedure - very little meat, more veggies and fruit, maybe oatmeal, yoghurt etc. good idea to take metamucil as well so that his stool is loose but not runny. This way it will be easy to pass gas after a few days. He does not need a liquid diet if he starts a soft diet a few days prior. I did this on the advice of a fellow PSA cancer friend and it was very easy to pass gas after day 2.

He will most likely have more pain from the carbon dioxide gas they use to expand the organs inside the body - they pump gas in the prostate area to separate the organs and make space for the procedure - some of this gas is trapped inside and slowly works its way out of the body in an upwards direction, pushing on the phrenic nerve, causing a lot of pain on the shoulder or chest - for me this pain was far worse than the pain from the procedure.

He should also ask his doctor for 2mg daily Cialis or generic equivalent to assist with penile rehabilitation and blood flow.

He should start walking as soon as possible after the procedure - helps with recovery, gets his intestines moving again (peristalsis), strengthens his pelvic floor and so much more. Once he is at home and the catheter has been removed he should move about in many different ways so that his pelvic floor sphincter can sync up with his brain to help control incontinence.

Has he seen a penile rehabilitation therapist/physio? If possible both of you should visit one as they offer a tremendous service and give lots of examples and info for both you and your husband.

[AliceinW57 in reply to clayfin]

Thank you so much for these great suggestions; I hope he will agree to the soft diet BEFORE, I never thought about that. I fear he has been looking at eating before as having a "last hurrah" Do you have any idea whether activated charcoal would be contraindicated for gas pains??? I have the exact opposite G.I. system to his, and once after a procedure had to have him run out to a nearby pharmacy [this hospital didn't have one] to get some as I was in agony...the problem is it basically 'vacuums up' everything including meds but perhaps if he has pain like you had...(also I think you just explained MY occasional pain from gas[ugh, no dignity left] in the chest/shoulder area, wow.

We have a pelvic floor PT lined up, he can't do it ahead as he currently HAS a Foley from retention, which as I said was one big reason he chose surgery. As for a penile PT, absolutely no idea if there's anyone in the larger area, I will ask at his urologist's.

Thank you so much, and best wishes!

[clayfin in reply to AliceinW57]

Pelvic floor PT will help with penile rehab as well - should also assist with incontinence products. The gas pain is from carbon dioxide injected into the abdominal cavity and is not in the organs but around the organs in the body cavity - as the gas travels upwards it exerts pressure on the nerve thus causing the pain - I doubt charcoal will help.

[allie2020]

Hi Alice,

My RP was in 2018 at age 67. I'm glad you are going to Chicago to have a great surgeon do his surgery. I visited five surgeons before selecting who I believed to be the best one. My recovery was uneventful and I never suffered a lot of pain. I drove my SUV a couple of days after the surgery. Like Tony, I used the large bag virtually all of the time. I put it in a pail with a handle to walk my dog, etc. My Uro's assistant removed the catheter on day eight and there was nothing to it. I bought way too many Depends diapers and gave most of them away. I leaked like Niagara Falls the first day or two, then it got much better. I used diapers for a couple of weeks, then pads and I was completely dry after 6-7 weeks. I did ALOT of kegels. I think taking the SUV is the way for you to go. I took quite a bit of Sildenafil (generic Viagra) and used a vacuum erection device almost daily for a long time. You can just buy a $30 one on Amazon; I think it helped me significantly. The only exercise I was allowed to do for six weeks was to walk....and I walked a lot. I hit the gym hard after that and think I was back to full strength in 4-5 months. Also, he can't lift anything over 10 pounds for six weeks. I started with the VED at about the fourth week. I think I had a bowel movement on the third day and I just ate light, lots of good soup.

That's about all I can think of now. He wants to take it VERY easy the first couple of weeks, lots of tender healing in there. I am wishing for undetectable PSA for him for the duration.

[AliceinW57]

Thank you SO MUCH, Allie, for the great advice and encouraging report, and the goood wishes Much luck to you, too!

[cesces]

Sounds like your husband is in good hands. You are doing a good job.

[AliceinW57 in reply to cesces]

Thank you so much! As it gets nearer, I am becoming more and more anxious; I will probably get MY 10,000 steps in while I'm waiting...

[Murk]

Great advice from others Some additional thoughts from my RP.

 Call your Doctors office and get the pre and post package now so you can plan.

 Gather now Depend Shields/Guard for Men Light Absorbency & Depend Incontinence Guards/Incontinence Pads for Men/Bladder Control Pads, Maximum Absorbency.

 I had no problem moving around without help. Just moved very slowly.

 I had 6 lymph nodes removed along with prostate since that is where PCa normally spreads first.

 Walk as often and as much he can take. It helps so much.

 For one week I used the large bag only, thus I didn’t leave home. Ripping off tape to have a smaller portable bag to a sensitive area wasn’t worth it.

 After one week of healing, I clipped the Catheter as shoen in a YouTube video in the shower. It was so easy and it just popped out, no pain & no mess.

 I traveled one hour from hospital to home and had no issues. Maybe just look up some convenient hotels along the way in case he needs a break?

 I don’t remember being sore or having difficulty sitting on the pot? I was given some goods meds for pain and it was sufficient. Get the prescription filled at the hospital so you have it for the ride home.

 Incontinence disappeared for me quickly, but it varies so be patient. Kegel exercises are key when he is up for it.

 My experience -- Initially body swell ed from the operation so has some lose clothes to wear home. Then just as quick that will dissipate and then he will probably realize some weight loss so tighter fitting clothes needed.

 Yes, there is a chance for the cancer to remain. The biopsy report will provide some insight and I recommend posting here so people can comment. Salvage radiation is required if his PSA starts to rise from basically nothing. My PSA didn’t start to rise for three years and for others it has been longer or earlier. PCa moves slow so the Doctors will proabbaly want a PSA test every 90 days for a few years. Don’t waiver from the PSA testing plan.

[BettyandBob]

Hi Alice - I will share my thoughts beginning with your catheter question. My surgeon’s PA removed it — not that big of a deal. But this is not a home DIY procedure. Item #2 my J-P drain was removed a few hours before discharge. For PT, get your husband doing Kegels immediately and work on pelvic floor exercises with a PT who is trained specifically in men’s health/strengthening pelvic floor. Lastly — the incontinence issue: your husband will be wearing “briefs” protection for the first 1-3 weeks. Depends at Costco was my resource. I then switched to a pad inside my briefs. Gradually moving to a thin shield.

Don’t even think about a cancer recurrence. Thoughts become things. Think only the good ones.

[AliceinW57 in reply to BettyandBob]

Thank you, Bob. I arranged for his local urologist's PA as well to do the catheter removal despite others here saying it's easy to do at home simply because this will be their first contact with him in person since the diagnosis, and they can see how it's going, he can ask questions [male PA] etc. He's feeling a bit orphaned since the surgeon is so far away and wants someone here to watch over him as it were...

I hear you about thoughts; I guess IF nothing more is found from the biopsies, we will definitely have enough to deal with w/out adding worry, and IF there's a problem, we'll have to make plans to address it.

[BanjoPicker]

At 74, I was looking at G7(3+4) and median lobe obstruction. Removal was possible but I concluded that possible lingering side effects were too daunting. After consultation with my Urologist and RO, I elected to have 43 hits of IMRT to address the PCa first. I would wait a year and have a TURP procedure to remove my medial lobe. That course was completed 6 months ago. I am very satisfied with my results. Everything is working well again and PSA is undetectable.

[AliceinW57 in reply to BanjoPicker]

Thank you, Banjo, so glad you are doing great!! Unfortunately he has been on a Foley since he developed a terrible UTI and both his BPH/median lobe and eventually, cancer were discovered. We considered him having a HoLep to relieve the retention followed by radiation of some kind or other, but because his Decipher test was high-risk and there's family history [mother had BC, 1st cousins pancreatic and prostate], he wanted to get both treated at once, basically. Best wishes going forward!

[dentaltwin]

I had my RP/PND in 2018. My postop pain was manageable. I may have taken 1 hydrocodone, but that was it because I wanted to avoid constipation. Sleep was a little tricky the first few nights because I generally sleep on my abdomen, but it improved. I ran some low-grade fevers that had me calling in a couple of times, but that passed. They advised no NSAIDS (though ibuprofen is far more effective for me than acetaminophen), but I may have cheated a bit. Yes, they want you to walk, and there the catheter pulling was the most uncomfortable part. I went in 10 days postop and the nurse removed the catheter. My urinary incontinence gradually improved over 3-4 months. I was on no special diet after the surgery.

My RP was laparoscopic but NOT robotic. My (twin) brother had his RP/PND about 3 months ago. His WAS robotic. He removed his own catheter. I think overall his recovery is progressing a bit more rapidly than mine did.

[AliceinW57]

Thank you, twin, that's so interesting about the difference for you and your brother. Hubby is having robotic. I saw a video of the procedure from another hospital and as someone with back issues, I can't imagine working in that position for 3 1/2+hours!! But bending over wouldn't be fun, either, I suppose.

[HerbalGrower]

Had robotic RP mid March 2024 on Oahu, Hawaii. (70 years old healthy, semi active, full time Nurse with Hospice) I live on neighbor island so not able to drive home He will likely stay overnight one or two days in hospital (released when bowel sounds present & tolerating clear liquids without nausea/vomiting). Recommend staying a few days near the surgeon in case of complications & to rest before driving back. (Find someone or vet to care for the cats)

Post op advice: don't be surprised on day one or two with swelling & bruising (black & blue) in penis and scrotum (was not informed of this, called the surgeon who said it is common & resolved within the first week).

Moving bowels post surgery: strongly suggest clear liquids, bowel cleanse, enema or colonic clean out 1-2 days BEFORE surgery. The less in there before surgery the less to move afterward. Did nothing but clear liquids and broth (bone broth is good) until bowels moved which still took a 2-3 days with an empty bowel preop. Mobility/walking as soon as able in hospital will get things moving. Find the balance between pain relief medications and getting bowels moving (immobility, anesthesia and narcotics slow everything down).

Pain: multiple small incisions for robotic arms in abdomen. One larger incision needed for removal of prostate and lymph nodes in a contained plastic bag to prevent spread. This one larger incision was most painful for few weeks. Better each day, but sensitive to coughing/sneezing (use a small pillow braced against this incision "splinting" when coughing or going from lying to sitting) Catheter removal: day 8 by local Urologist (early in day, drink lots of fluids, time in afternoon to return if not flowing/blockage requiring reinsertion). Even as a former Urology nurse I did not want to do this myself. Persistent incontinence post catheter removal. Heavy pads at night. Found a product "Quick Change Urine Management" system that when lying down overnight wraps the penis up toward the belly keeping the scrotum & perineal area free from being wet all night. Cleanse & apply A&D ointment (or similar protective cream like Desitin) to scrotum & groin for protection from constant moisture. Watch for fungal rash in skin folds staying wet.

After a few weeks found a local Physical Therapist specializing in Pelvic floor rehab/exercise. You may need to ask around for PT in your area who works with women post partum who also work with men. Exercises are slowing helping, but I am still using heavy pads overnight. PT recommended a penile clamp applied 2-3 hours at a time during the day. (Wiesner clamp) It trains the bladder to be full again after weeks of being constantly empty (with the Catheter your husband has had for some time this would likely be helpful, too) It is not uncomfortable and gives me the sensation of a full bladder when needs to be emptied. Incontinence varies case by case and could takes months. As others have said: walk, walk, walk and keep moving.

Best of luck to you both (take care of yourself through all this, let him do as much for himself as possible

[AliceinW57]

What great and detailed advice, thank you so, so much! We have been very frustrated by the lack of post-surgery/recovery guidance at U of C Urology (apparently they wait to give it out until after the surgery)...I literally just wrote again to the "care team" about this as the nurse I mostly get on the portal seems to know nothing about these important matters

Fortunately I did find a pelvic floor PT who treats men so will have him discuss the clamp at their first session.

But unfortunately staying longer unless a true emergency arises post-surgery (or even during) isn't an option for a number of reasons-one is that the AirBnB isn't available except for one more night due to other bookings, and hotels in Chicago this time of year are horrifically expensive. We do have his local urologist who ordered the biopsy and found the cancer standing by to follow him in his recovery...

May I ask whether you were prescribed generic Cialis right away? THAT they have already sent information about through the portal, does it help with recovery of continence? To be blunt, we have accepted the issues he will almost certainly have afterwards and it is not our main priority by any means.

Thanks again,

Alice (Jeri really

[HerbalGrower]

Aloha Jeri

They did not prescribe Cialis or other ED med for me likely as my procedure was non nerve sparing. Starting to research whether this will help with incontinence.

Sorry for delayed response. Hope all going well in recovery back at home. Best to you and your spouse on this journey together. -- Aloha, Ken