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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@hammer101

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 was never told about the six weeks but it sounds reasonable. My appointment with my surgeon was two weeks after my biopsy. When we decided on surgery, he said he likes to wait at least one month to do it. That’s six weeks!

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After reading responses from those having done the radical prostate surgery I'm leaning toward beam radiation for my treatment.

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@perrychristopher

I had my RALP in August of 22. My biopsy results were in May so I had 2 months to think about operation. Could be a blessing your husband's operation is in 8 days. I had no pain after operation, not even an aspirin required. The catheter is put in while you're knocked out. Didn't bother me a bit other than the idea of having a catheter. I just used the large cath bag and had it in a blue bucket when I was walking around the house. I had a towel over the bucket just not to be always looking at bag. Silly, but helpful. In hospital one night and was up and walking a couple of hours after operation. No pain. Had cath in 8 days. Removal was nothing. Fully continent after removal except for some dribbling maybe. I wore the pad underwear for 4 weeks but didn't need to. Surgeon on post op visit told me to stop wearing them actually. Definitely ask for Pelvic Floor physical therapy prescription after surgery so your husband knows he's doing Kegels properly. You have to wait 8 weeks or so before PT so you are healed up. Your husband may feel some shoulder pain after surgery. They say it's from the gas used during surgery. I think it's more from the fact they are pivoting you on the operating table for the robot arms. Anyhow your husband will be fine. Good luck. He'll experience tremendous relief after it's over. If he's still working tell him to take off as much time as possible on Medical. I was off work for 8 weeks. Rest is important for healing physically and mentally.

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Thanks so much for your advice!

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@jasonfarmer

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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Thanks for sharing your experiences, greatly appreciated!

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@kenhorse

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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Great to hear about your most recent tests - thanks for sharing!

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@harvey44

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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Thanks for the positivity- I agree attitude is super important.

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@rockinat59

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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Thanks so much for all of your advice and sharing your experiences.

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@patrick64

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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Appreciate your comments and kind words - even us tough guys need a hand once in a while, haha!

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@hammer101

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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Thanks Jim for your advice, tbh I am a little concerned about the short time between…. My surgery is less than 24hrs away now…fun times.

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Thanks to all those that have taken the time to respond, share their personal experiences and provide advice and well wishes. I am so very thankful to each and every one of you. I hope to help others, as you have me, as I write my own story over the next days/weeks/months to come. I am much better armed going into surgery tomorrow thanks to all of you. Wishing you all good health and happiness.

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