Apprehensive, and asking for your advice pre RP

Posted by pjw2 @pjw2, Jan 20 4:18pm

Hello there, in the span of a week I have had a biopsy with positive PC results and scheduling of surgery 8 days from now due to a cancellation. Feeling fortunate in that I am having the surgery in short order… and a little overwhelmed and still trying to absorb the diagnosis and what is yet to come. Telling family members now and tbh haven’t quite had (or made) the time to work this through in my own mind. Asking this wonderful group for their advice on prep for surgery, and what to expect in the immediate weeks subsequent to the surgery. I find myself of all the potential side effects etc being scared of having a catheter in for 14 days and possible incontinence afterwards…. Sure there are bigger picture things to worry about. Range of emotions for sure!!

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@pjw2

Thanks very much, I was interested to hear your experiences re physical activity post surgery. My hope is to do exactly as you suggested - get up and move around, sure it’s helpful from both a physical and emotional perspective.

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IF you can, squeeze in 1 PT appt preop to receive Kegel instructions.
Biopsy July 17; surgery 2 wks later and 1 session was very helpful for me during recovery period.
Catheter no big deal: Mine was in 10 days. I walked in the house 20 - 30 mins /day in 5 min increments.
Plastic bucket for cath bag was excellent suggestion I received.
Keep catheter clean; see videos. I cleaned once daily.
And, I removed my own catheter; standing in the shower; very easy; slid out mostly on its own.
My continence post catheter was excellent: credit Surgeon, PT and good fortune.
Good luck. You will do fine.

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@michaelcharles

IF you can, squeeze in 1 PT appt preop to receive Kegel instructions.
Biopsy July 17; surgery 2 wks later and 1 session was very helpful for me during recovery period.
Catheter no big deal: Mine was in 10 days. I walked in the house 20 - 30 mins /day in 5 min increments.
Plastic bucket for cath bag was excellent suggestion I received.
Keep catheter clean; see videos. I cleaned once daily.
And, I removed my own catheter; standing in the shower; very easy; slid out mostly on its own.
My continence post catheter was excellent: credit Surgeon, PT and good fortune.
Good luck. You will do fine.

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Thanks for your time and response, appreciate the advice. Will certainly make the effort to walk and the bucket is a great idea!

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I was scheduled for surgery 2 months out but after about 3 weeks I received a call on Thursday morning that there was a cancellation and I could have surgery on Monday. So I only had to worry for 4 days I must say I am happy this was the case as I can worry about up coming events. I was not one of the many that were walking around much. I was just not able to without to much discomfort. Not meaning to worry you but not everyone is the same. I have a cousin a few weeks ago had surgery and went home the next day, his house is up on piling a beach house, with many steps without any problem. I couldn’t have done that. Most likely you will find you worried about things that are going to be easier than you think. I had a friend that went through this 2 years earlier that I could talk to, you will be amazed how much it helps to talk to others. This form is full of people that will help you to.It has me. 7 plus months post surgery and doing well No regrets. On a very positive side sex is better now than it was in years for me. Because of surgery I tried injections ( I would have told you you’re crazy to even suggest this) . My best to you.

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I was diagnosed with Gleason 8 in Aug of 2022 and decided on RARP, which was scheduled at the end of November, 2022. Two days before I was scheduled, I contracted the flu (not Covid, but the actual flu!) so my surgery was rescheduled. On Jan, 31st, 2023 I underwent the RARP. Surgery was started at 8 am that day and I was home the next. Before I was dreading not only the surgery but the thought of having a catheter in for a week afterwards. As it went, neither was anywhere near as bad as my imagination had led me to believe. In fact, the catheter was more of an annoyance than anything else.

What I found very helpful before surgery were a myriad of videos on YouTube from patients whom had gone through the procedure as well. They really did help to allay much of my fears and, if you're inclined, go there and search " Mark's Prostate Cancer Experience". He video'd many milestones of his experience, starting as recently as 2 hours after surgery.

My pathology downgraded my Gleason to 7, 100% contained in the prostate and no lymph node involvement. As I've posted elsewhere, my 2 PSA tests since have been undetectable.

I'm almost 1 year out now and doing fine.

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I had RALP Aug ‘22, after diagnosis in March. Prior to RALP I did 3-5 weeks of PT with a DPT ( Doctor of Physical Therapy), who was able to feel the muscles of the pelvic floor to tell that I was Kegeling correctly.

I was very bloated after surgery for only a couple of days - surgeon told me to squeeze my scrotum to eliminate the swelling from the surgery. Had the catheter about 10 days - no big deal, but it was nice sleeping all through the night using the big bag! LOL!

Did a few more weeks of PT with same DPT ensuring those muscles were strong. I practiced all the kegels at home with a set of Whataband bands from Amazon. As a result f all this PT, I was 100% continent after the surgery!

I wish you well.

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One of the best things that you can do for yourself is to develop a positive attitude. It has helped me tremendously since I was first diagnosed with PC back in 2008. I've had a reoccurrence and 36 radiation treatments. I still have a increasing PSA every three months after the radiation 3 years ago. I still hold on to my positive position about this. I don't worry about it. It is what it is and I can only rely on my professionals for the best treatment. Worrying only makes matters worse. Good luck with your surgery!

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Before you leave the hospital after your surgery you will be give a list of "do's and dont's." Follow them to the letter! Remember, this is a pretty major surgical procedure. The rest of my advice is from my own experience and what I learned from other's advice.
1. Plan on living in a recliner for at least a week. Easier to get up out of a chair than a flat bed. Get fresh batteries for the TV remote! Purchased a small garbage can to hold my Cath bag by the side of my chair.
2. Get out of the recliner often. I would once an hour and walk laps around the island in my kitchen. Walk often! Avoid stairs. Walking will help your body get rid of the gas they pumped in your body ( caused me shoulder pain for several days.)
3. Drink, drink, drink!! Lots of water/juices. Avoid caffeine and alcohol. You need to flush the blood from your bladder. Keep an eye on the color of the urine in the catheter bag. If it's red, drink more.
4. But a pair of "breakaway" pants like the basketball players wear. Easier to put your pants on around your catheter tube than running the tube down your pants leg. One guy's wife did the same with his undershorts. She cut both sides and attached Velcro strips. I bought boxer briefs which extended down the leg longer and help support Cath tube. Bought them one size larger than normal.
3. Follow lifting restrictions! About a month after my surgery I decided to clean my garage. Didn't lift anything heavy but repetitive lifting of light items caused some pretty intense pain.
4. Take your medications as prescribed! I only needed pain medication for two days, some get by with only Tylenol.
5. You might go days before having a bowel movement. I thought I might explode. Don't force anything, it will happen!
6. I put a patio chair in the shower. With the cath, easier to shower sitting than standing.

Hope others will add their helpful advice. Good luck!

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@pjw2

Thanks so very much for sharing your story, relaying your experiences and providing some advice - with a little dose of humour! It’s a lot to take absorb in a short period of time, and folks like yourself taking the time to help someone they have never met gives me hope for sure. Working on that game face!

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I was getting ready to respond to you and I read @web265's post and that pretty much summed up my experience as well. I had envisioned my own personal horror movie before surgery. It was going to take forever to recover. Forever to feel confident going out of the house without some kind of pad. None of that came to pass. I was diagnosed in Aug. of '21 and it has been a journey like I've never had.

My best advice is to take one day at a time. Stay in the moment. Do your best to take all of this as it comes and don't let your brain runaway with itself. As I tell people, I spent the first 4 to 6 months quietly freaking out! It was a short time after when I made peace with it all. My wife has been wonderful. Enduring all the ups and downs with me and always being positive and upbeat. I hate to think of going through it all without her. She is my rock. That said, it's still mine to carry. When things are tough, let people help you. This was difficult for me. I was the 'we can take care of it' guy. When you allow people into your struggle it's good for everyone. I always tell my kids you can't have too many people in your corner. My very best to you and those that will care for you.
Stay strong, brother. You're gonna do great. Better days are ahead!

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Great advice above and glad you are reaching. I have only a few items to add:
1. I would recommend double checking the time requirement between initial biopsy and radical prostatectomy. I was told at Mayo-Rochester that 6 weeks was required after the biopsy to allow for the prostate to heal from the needle insertions/samples taken. I am not medically trained, so I have no data to support this statement. However, this requirement was logical to me, thus I did not push back. I had 19 samples taken during the biopsy and it makes sense that you would want the prostate to be healed and in minimally inflamed, not bleeding during the surgery. The last thing I would want is for cancer to get out during the surgery because the prostate was not solidified - This is probably a totally ignorant assessment, but was my thinking when told I had to wait 6 weeks :)...

2. The biggest challenge for me related to the catheter (#1), referred shoulder pain (#2) and constipation (#2). The should pain was referred pain from gas (used during surgery) pushing on the diaphragm. As long as I was not sitting or standing there was not pain. This took about 4 days to subside.

Best of luck with your upcoming surgery and hope all goes well!!

Jim

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I experienced the same mental anguish. Do your Kegels religiously. You’ll find the catheter is no big deal. Walk whenever and wherever you can. Do those Kegels! Trust your doctor(s). Keep the faith. Good luck!

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