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!!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Pjw2 - Checking in on you, friend. How’s the last (almost) 2 weeks treated you? Hopefully, you’ve parted ways with your temporary friend, Mr. Cath, and are well on your way toward regaining strength.

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This is really great information! One nagging question that I have focused on is nocturia. One of the health issues that may? result from having to get up 3-5X every night is risk of dementia, heart disease etc. from lack of quality sleep according to the Sleep Foundation. For me, that 3-5X every night frequency happens (according to the Urologist) because I can't completely empty my bladder due to the BPH enlarged Prostate reducing both the flow and bladder capacity. Is there perhaps a benefit to choosing the RP route and reducing or removing those urinary constrictions caused by the Prostate?
This is an amazing Forum - wish I'd discovered it earlier...

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@rsplittgerber

This is really great information! One nagging question that I have focused on is nocturia. One of the health issues that may? result from having to get up 3-5X every night is risk of dementia, heart disease etc. from lack of quality sleep according to the Sleep Foundation. For me, that 3-5X every night frequency happens (according to the Urologist) because I can't completely empty my bladder due to the BPH enlarged Prostate reducing both the flow and bladder capacity. Is there perhaps a benefit to choosing the RP route and reducing or removing those urinary constrictions caused by the Prostate?
This is an amazing Forum - wish I'd discovered it earlier...

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Well, not sure that I would promote RP as tx for nocturia. And maybe my nocturia had underlying causes different from yours.

At 72, I chose RP, and would choose it again, for the removal of my G 9 cancerous prostate, and the possibility of a really long-term "cure".

And as has been noted, surgery first gave me the ability to have salvage radiation treatment when I had immediate BCR after first postop PSA of .19

Thankfully, my 1st PSA following salvage tx was undetectable (< .02). Somewhat nervously looking forward to my next PSA later this month.

However, before RP, I needed to use the bathroom every 1 - 2 hours for years. No problem going back to sleep, but it was very annoying and probably not healthy. If I woke up and looked at the clock and it was 2 hours since I used the bathroom, I was actually happy.

Since my RP in August 2022 my nighttime bathroom habits have improved dramatically, and particularly over the last 4 - 6 months.

My salvage tx from February to June may have delayed my improvement, but honestly I now am sleeping 3 - 5 hours at a stretch at night. That is a significant improvement for me.

Best wishes to you and all.

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michaelcharles - Good to know. When weighing the decision to go the RP route vs. other options, your experience might be considered on the + side when looking at the pros and cons. Sleeping 3-5 hours/night sounds like heaven to me...

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@rsplittgerber

michaelcharles - Good to know. When weighing the decision to go the RP route vs. other options, your experience might be considered on the + side when looking at the pros and cons. Sleeping 3-5 hours/night sounds like heaven to me...

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What does your Urologist say?

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@rsplittgerber

Newbie here, Previously diagnosed with BPH in 2017 by our family GP Dr because of nocturia – usually 2x / night increasing to 4-5x this year. Prescription for Flomax (0.4mg to start, 0.8mg now). Watched PSA over that time and when it spiked from 2 to 7, he referred me to Urologist who performed a biopsy followed by bone scan and an MRI. Result was Gleason 7 (4+3) on left and mid cores, none of the other 6. Bone scan clear and the MRI verified PIRADS 5 on left and center with no pelvic lymphadenopathy. Currently scheduled to do Robotic Assisted Laparoscopic Radical Prostatectomy with Bilateral Pelvic Lymphadenectomy – ERAS on March 28 (sorry if some of the acronyms aren’t correct).
I’m 78 years old, 140 pounds, retired and active physically – skiing, mountain biking, hiking with daily exercise. Urologist told me he normally wouldn’t do radical removal on someone my age, but he said due to the fact that I had “little visceral fat” and in good shape physically, he would recommend this route. Also had several consultations with Radiologist who also supported this surgery. So at this point, I feel confident in following this path in spite of about a (30%?) chance of incontinence, ED, or other complications. I’ve been doing Kegel and abdominal exercises under direction of a PT. I’ve never had any issues with bladder infections or leakage in the past.
For anyone willing to share their experience following the surgery plan, can you help me understand the progression (good or bad) post-surgery? How long after the catheter removal before you were able to regain urinary control? If you were doing Kegel exercises, do you use the same muscles to control your flow? How did you know if you were performing the Kegels correctly?
If there is another thread that has information on actual experiences post-surgery, please let me know. Thank you so much!

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Good morning. I had RP at age 68. The surgery and post op course itself was uneventful. I was able to regain 95% continence but still were a very light pad when I go outside to exercise, gym, walk golf etc. I had the catheter in for 10 days. almost total incontinence the few days after removal so you will need an adult diaper when you go to the urologist for removal.
Here are a few suggestions:

Use a little vaseline jelly where the catheter enters the tip of your penis. Pull the penis back and liberally put vaseline or lidocaine gel on the catheter. It helps prevent irritation from the chafing.

My urologist recommended a book "Life after Prostetectomy and other Urologic Surgeries" By Vanita Gaglani. She is a very experienced pelvic floor physical therapist and gives a very detailed explanation of what to expect and how to regain continence. It's available on Amazon.
You can overdo Kegels and fatigue the muscles and actually increase incontinence. She goes through a step by step program. It includes core exercise (the pelvis floor is part of the core ), diet and how to increase bladder capacity. When people start leaking they tend to reduce fluid intake "less in, less out". This actually increases incontinence as she explains in the book. Well worth the money. She answers your questions in the book. She recommends starting the program pre surgery so the timing is good.

It's important to be active immediately following surgery. Up and walking. The major discomfort I had was hiccups for a day or so following surgery. When they do your surgery they inflate your peritoneal cavity (abdomen) with CO2 gas in order to see what they are doing. At the end of the surgery they try to aspirate all of the gas but a little remains and is absorbed over a few days. When you stand it rises to beneath the diaphragms and causes irritation or the phrenic nerve and thus the hiccups. Detailed explanation but that's what happens. It is mildly painful but goes away quickly. I didn't need anything more than ibuprofen.

Good luck!

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Looks like you have brought together a great group of baby boomer 70 year Olds who have ridden I the same boats as you. I can't add much else. My RP turned out very well. Patience and following the post op exercises and guidance. Main thing for me was successfully getting the cancer out and getting on with life. Don't let anyone or thing knock you off your horse.

Goodluck with the surgery!

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Another consideration for those contemplating a RP or Radiation as their primary treatment; investigate whether there is a prostate cancer support group nearby. These groups are very welcoming and can provide lots of information and support as you start your journey.

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Hope for the best; however, be prepared for anything. I was optimistic with a PSA of 4.2. Despite this, my surgeon had to “cut wide” on one side of my prostate in order to remove a cancerous tumor and growth. Eight random biopsies were taken. Seven were fine, but one wasn’t —a 3+4. Ugh.
I was 73 when I had my surgery. I had surgery in the morning and was released in the afternoon. I was totally incontinent for about 5 months and steadily improved. After 10 months, I was 95% continent. It’s been two years now, and I feel great and embrace each day.
Good luck; I hope everything goes smoothly. Jerry

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@rsplittgerber

Newbie here, Previously diagnosed with BPH in 2017 by our family GP Dr because of nocturia – usually 2x / night increasing to 4-5x this year. Prescription for Flomax (0.4mg to start, 0.8mg now). Watched PSA over that time and when it spiked from 2 to 7, he referred me to Urologist who performed a biopsy followed by bone scan and an MRI. Result was Gleason 7 (4+3) on left and mid cores, none of the other 6. Bone scan clear and the MRI verified PIRADS 5 on left and center with no pelvic lymphadenopathy. Currently scheduled to do Robotic Assisted Laparoscopic Radical Prostatectomy with Bilateral Pelvic Lymphadenectomy – ERAS on March 28 (sorry if some of the acronyms aren’t correct).
I’m 78 years old, 140 pounds, retired and active physically – skiing, mountain biking, hiking with daily exercise. Urologist told me he normally wouldn’t do radical removal on someone my age, but he said due to the fact that I had “little visceral fat” and in good shape physically, he would recommend this route. Also had several consultations with Radiologist who also supported this surgery. So at this point, I feel confident in following this path in spite of about a (30%?) chance of incontinence, ED, or other complications. I’ve been doing Kegel and abdominal exercises under direction of a PT. I’ve never had any issues with bladder infections or leakage in the past.
For anyone willing to share their experience following the surgery plan, can you help me understand the progression (good or bad) post-surgery? How long after the catheter removal before you were able to regain urinary control? If you were doing Kegel exercises, do you use the same muscles to control your flow? How did you know if you were performing the Kegels correctly?
If there is another thread that has information on actual experiences post-surgery, please let me know. Thank you so much!

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@rsplittgerber, in addition to the helpful responses you've received from members, you may appreciate these related discussions:
- Kegel Exercises: Am I doing them correctly?
https://connect.mayoclinic.org/discussion/kegel-exercises-1/
- Do those Kegels!
https://connect.mayoclinic.org/discussion/do-those-kegels/

- What can I expect after radical prostatectomy surgery?
https://connect.mayoclinic.org/discussion/what-can-i-expect-after-radical-prostatectomy-surgery/
- Prostate cancer surgery: What can I expect & prepare for?
https://connect.mayoclinic.org/discussion/48-about-to-have-prostate-removal-surgery/

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