Recuperation Tips & Tricks after Pros... - Advanced Prostate...

Advanced Prostate Cancer

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Recuperation Tips & Tricks after Prostatectomy?

LittleBarker profile image
25 Replies

For anyone having (robotic assisted laparoscopic) prostatectomy what are your best tips and tricks to make recuperation easier. Things you wish you knew in advance maybe. Or products to buy, clothing to wear, foods to have on hand, medications that make a difference, making sleep easier, and so on. Thanks for helping us prep!

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LittleBarker
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25 Replies
Tall_Allen profile image
Tall_Allen

Start penile rehab as soon as the catheter comes out.

mrscruffy profile image
mrscruffy

walk, walk, walk, drink plenty of water and don't catch catheter on cabinet handle

Tony666 profile image
Tony666

let’s see:

1) start kegals as soon as possible (preferably before operation)

2) figure out a comfy way to sleep while in pain w catheter (I got an incline pillow for the bed). And I put a liner for the bed in case of accidents

3) wear loose clothing (eg sweats) to the hospital and for the next few weeks

4) by different pull-ups/pads and try them on so when the time comes you have something you are comfortable with

5) if you wear boxers, get a pack of tight underpants (jockeys or fruit of the loom) since if you need pads they won’t hold in boxers

6) agree with previous poster to start penal rehab asap (basically daily viagera)

7) agree with previous poster to walk, walk and walk some more. The more you walk the better the healing

8) the leg bag didn’t work for me. I walked carrying the bigger bag in a plastic grocery bag

9) get the catheter removed by a nurse who knows what they are doing (even if they say you can do it)

10) when you come home put a pillow in the car seat and drive slow (you will feel every bump in the road)

Good luck 👍🏻.

jimreilly profile image
jimreilly

All excellent and practical tips from Tony and from tall Allen! Know also that the experiences after a PR vary a lot -- how much incontinence you will have (from none to a lot), how much sexual functioning you will lose (some, but from a little to all; but Tall Allen's suggestion, if followed, increases your chances), how much pain you will have (from not to much to a lot--I had a lot, which made it difficult for me to "walk, walk, walk" for quite some time, and I'm used to walking alot, and biking and swimming)...etc. etc. If you have any symptoms you do not understand DO call and ask the nurse who's in charge--sitting around worrying won't help! If you take any significant amount of pain meds be prepared for constipation and some kind of intervention to help with it. Some of this is just common sense after any major surgery, but if you haven't had any other surgeries, you might not know.

clayfin profile image
clayfin

I was very fortunate that I was continent from the start but found that I dribbled a little when I got tired - my remedy was to make many different movements as possible - climb up the stairs backwards, climb down backwards, pick up two or three full grocery bags with one hand only and walk from the car to the kitchen, then swap hands and go back to the car, etc, etc.

These different movements all help strengthen the pelvic floor. After 4 weeks of walking I went back to gentle yoga for a month, then power yoga for a month, then CrossFit cardio for another month before starting full CrossFit after 4 months.

The idea is to strengthen the pelvic area and associated core so that the pelvic sphincter can get as strong as possible. I know we are all different but movement is the key - any gentle movement initially but slowly increasing the intensity as the body strengthens.

London441 profile image
London441

All good suggestions, except the description of penile rehab as ‘basically daily viagra’. Penile rehab is not taking viagra, it’s regular physical stimulation of the penis. Viagra or Cialis can assist that but the former is what matters.

I was advised to get a recliner. It turned out to be completely unnecessary but having never owned one I find it quite comfortable.

Moving as much as possible as soon as possible is essential. Oversized baggy clothing effectively hides the catheter if that matters to you. For me the catheter was a bit of a drag, but it’s temporary and I found the rest of the recovery easy.

My only regret was getting a prostatectomy in the first place.

LittleBarker profile image
LittleBarker in reply to London441

What would you have done instead of the prostatectomy?

London441 profile image
London441 in reply to LittleBarker

Radiation. Which I ended up getting anyway, along with several other things.

The problem with prostatectomy is that it fails statistically around 30% of the time, much more frequently if there has been any spread outside the gland.

It can work well for lower grade disease, but it must be completely organ confined, and radiation works equally well with fewer side effects. Especially ED, which is immediate for most after surgery. ED that is remedied by penile rehab only in some cases, and almost never completely. Surgery also reduces the size and girth of the penis. In addition, resulting urinary incontinence, while less common, is quite likely more prevalent than the 5% touted by urologists.

Surgery was a better option years ago, but there have been major advances in radiation technology that enable much more precise and higher doses to be delivered safely.

Side effects are possible with radiation too of course, but they are mostly more delayed and not as common.

Finally, far more sensitive scans have become commonly available in the last few years (PSMA-PET etc), meaning signs of spread can often be detected prior to treatment. This provides men with adverse pathology (high gleason score, seminal vesicle invasion, lymph node positivity etc) the opportunity to smartly stay away from a surgery that is bound to fail.

These adverse features used to only be obtainable through standard post op examination of the prostate specimen and lymph node removal.

Other than this, surgery and radiation have about equal success-short term that is.

Shorter profile image
Shorter in reply to LittleBarker

If you've met one PCa survivor, you've met one PCa survivor. Like London441, I regret RARP, but for a different reason. I will not recommend one treatment over another, but I would suggest that if you go the surgery route, vet your surgeon EXTREMELY well before you let him operate! My surgery was a life changing experience and made me want to die for a very long time. And I still needed radiation less than 2 years afterwards.

I will add that my wife and I purchased electric recliners after my surgery. It would have been helpful for me to have had it after surgery.

Tigger2022 profile image
Tigger2022

I’ll add — get a little pillow. Like, 15 inches square. I made one for myself for when I had my robotic hysterectomy in Jan ‘22, and my husband also used it after his robotic prostatectomy in May ‘22. It really helps to have something soft to gently push against your belly and your incisions when you are getting up, sneezing, coughing, or laughing. It’s such a simple thing, but it’s a godsend the first few days.

cpl901 profile image
cpl901

Training…..Before and after. Kegel before and after. Be patient. Start penil training before, rehab as soon as you can after. During : dont stress, just relax.

Sisto profile image
Sisto

To the excellent other points I’ll just add to stay very hydrated the day before and the day of surgery. I had several hours of delays prior to my RP in 2012 on a gurney without iv. As a result, I did not move my bowels for six days. With lots of chemical help I finally did. The police came over for a wellness check when the explosion happened.😁

swwags profile image
swwags in reply to Sisto

Yes and I'll add the first bowel movement will be extremely painful.

CarlosBrasil profile image
CarlosBrasil

Kegles and movement were not able to stop my incontinence. A specilialized fisioterapist made the difference, 10 sessions helped me to leave the pads in one month. Uncomfortable but efficient.

sharpcut profile image
sharpcut

To make sure you are really getting to the Pelvic Floor Muscles Get a GOOD PHYSICAL THERAPIST !!

Gs-rider profile image
Gs-rider

Many good points made. I drank a lot of water and used stool softener absolutely regularly.I wish I had known to put the catheter bag lower than bed while lying down and sleeping. Helps good flow.

MNFarmBoy profile image
MNFarmBoy

It sounds like you have already made a decision for RP instead of some kind of radiation treatment (RT), but your profile doesn't show anything regarding how you arrived at that decision, so I feel obligated to point out the likelihood of a worse outcome regarding erectile dysfunction and incontinence. In the past, Tall_Allen has often pointed that out, but didn't in this case; maybe he will comment about that. Here are links (or URLs) to two previous posts containing such replies from Tall_Allen:

healthunlocked.com/prostate...

healthunlocked.com/prostate...

My own experience is that I drank the "nerve-sparing" kool-aid and proceeded with RARP without knowing the poor statistical success rate for erectile function, and suffer from ED as a result. If I had it to do over again, I would choose RT. However, I am thankful that my PSA has remained below the limit of detection (<0.014 ng/ml) through 4.5 years, and for Trimix, which for me has been an effective treatment for ED, although bothersome.

If you proceed with RP, based on my own experience, the incontinence pads were sufficient and I only needed them for ~2 months, so I wouldn't purchase the pull-up "diapers" unless the pads proved insufficient.

Best wishes for a good outcome!

MateoBeach profile image
MateoBeach

Agree with the penile rehab: Take a generic viagra or Cialis every day and use a penile pump such as Bonro to get an erection every day, whether you use it or not.

j-o-h-n profile image
j-o-h-n

Best tip, reply: "Switch places with your twin brother"...........

BTW would you be kind enough to update your bio. All info is voluntary and will help you as well as help us. Thank you and keep posting....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/30/2023 11:17 AM EST

Bethpage profile image
Bethpage

Be aware of the possibility of bladder spasms and how to treat them. Get an emergency night contact for the surgeon, jic. If he gets to 3 months post and still has incontinence issues. consult a pelvic floor therapist who offers biofeedback.

ron_bucher profile image
ron_bucher

I had non-robotic RP, and my best physical rehab was swimming. If you have a full time job, give yourself a couple extra weeks off to enjoy things you like outside of work.

andy_diggs profile image
andy_diggs

Operation in 2021, Gleason Score 9, with some Nerves Taken. Age 55 at the time. Current PSA undetectable.

Fully functional 12 months later. Occasional slight leakage with a heavy gym / squat routine

Remember though, everyone is different

Recommendations:

* Get a good surgeon: This is the most important thing. My surgeon was exclusively RP focussed. That was all he did, week in / week out. By the time I went in, he had done several thousand op’s.

* Mental Resilience: Be gentle with yourself mentally. It's natural to have goals and expectations, but recovery results and timelines can vary significantly. Allow yourself some flexibility and patience.

* Pre-Operative Fitness: Visit the gym before the operation and work on building as much overall strength as you can, within your personal limits. Remember, it will be a number of months post-operation before you can resume intense workouts.

* Core Strength and Kegals: Focus on enhancing your core strength and Kegel exercises before the surgery. Familiarise yourself with these exercises and build foundational strength.

* Erectile Dysfunction Medication: Arrange for medications like Viagra or Cialis as per your needs. Cialis worked best for me.

* Penis Pump: Use a penis pump as part of your recovery process.

* Incontinence Supplies: Stock up on diapers to manage post-operative incontinence comfortably, ensuring you don't run out. Nothing worse than trying to make that last one stretch out until the new ones arrive. Get good fitting undies to keep in place

* Physical Stimulation: Engage in regular physical stimulation to promote blood flow when you feel ready. “Online videos” can be a useful tool for mental stimulation in the early stages, but be mindful of dependency.

* Infrared Sauna and IR Lamp: I found using an infrared sauna and an IR lamp very beneficial, particularly for improving blood flow and nerve regeneration in that region.

* Dietary Adjustments: Opt for smaller, frequent meals and drinks throughout the day to lessen bladder pressure.

* Bladder Control: Try to delay urination when you first feel the urge. Practice allowing your bladder to fill more, which can help in regaining bladder control.

* Fluid Intake Before Bed: Avoid drinking fluids a couple of hours before bedtime to reduce nighttime urination.

* Testosterone Management: This may not be suitable for everyone, especially if you are having further treatment, but prior to my prostate cancer diagnosis, I had low testosterone levels (average 250). Post-operation, I've focused on increasing my testosterone levels by incorporating more quality protein and fats into my diet and engaging in high-weight compound exercises. My last testosterone measurement was around 700. It's been a lot of work, but the process is straightforward. To be honest, I was a bit shocked at being able almost triple my T levels with diet and lifestyle changes, but I was coming off a low base. This has helped with erectile function and overall quality of life.

* THC - When it comes to sex, the Cialis was really helpful in the early days (I don’t use it now). Not for everyone, but edible THC was also really helpful. Not sure what it does for blood flow (if anything), but it was amazing at increasing the sensory side of things. Of course THC is not legal everywhere (I had a script), and the effects are likely different for everyone, but for me it was amazing. Word of warning, if you use it and it does work for you, don’t combine it with Viagra / Cialis. My rather painful experience indicated the combined effect was not simply additive, but was a multiplier and ended up being the hardest, longest and most painful boner of my life.

Good luck with it all

j-o-h-n profile image
j-o-h-n

And the number 1 thing you must remember..... "Leave the Foley in your pee pee holey and have no doubt about the nurse pulling it out". BTW the popping sound you may hear will definitely not be from someone uncorking a bottle of champagne.......

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/30/2023 8:03 PM EST

dentaltwin profile image
dentaltwin

My perspective only. I really wonder if kegels really helped me. I had urinary incontinence for maybe 3 months, and I still have to pee more often than before the surgery, but I don't consider it an imposition. My original reason for choosing surgery over radiation was related to what happens when treatment fails (A therapist once told me I "live in the negative prediction", so there's that)

Historically, in the case of treatment failure, salvage radiation after surgery has been less fraught than salvage surgery after radiation. At my brother's recent consultation with a radiation oncologist I asked him, and he said there are still surgical options for salvage surgery, but he didn't totally discount what I said either.

The success rate for localized disease is essentially the same for surgery or radiation. (Someone posted a 30% failure rate for surgery presumably for localized disease. This is far, far higher than what I've heard--certainly for localized disease).

My erectile function was very limited after my surgery, and my wife was ill (she died in 2020) so it was not much of an issue. I started taking tadalafil last year and my sexual function, though certainly not what it was, has improved. So I would say if you're not doing kegels all day long and not using penis pumps and boner pills immediately don't beat yourself up. For the record, I am not regretting my decision to have surgery.

jackwfrench profile image
jackwfrench

For me kegels and floor strengthening took just over 6 months, but it is worth it because when you recover you can maintain with infrequent exercises. BMR (recurrence) is 30% when you consider several years post surgery (I had recurrence 2 years later). One study I later found was that you want to keep your weight in control - just 5-10 lbs over can double your chance of recurrence; wish I knew that! Surgeons, even the best, do not do enough to help you minimize recurrence afterward.

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