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Apprehensive, and asking for your advice pre RP

Prostate Cancer | Last Active: Feb 14 3:12pm | Replies (60)

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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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Replies to "Newbie here, Previously diagnosed with BPH in 2017 by our family GP Dr because of nocturia..."

I’m 71. I had some of the same issues as you did: BPH, nocturia, etc. After learning I had prostate cancer last August, I saw a surgeon and immediately decided on RP. He told me that the old rule was to avoid surgery if 70 years or older; but now they will do surgery if the man is in excellent health. He also told me he was looking forward to operating on someone with low visceral fat. I had 5 weeks prior to my surgery. My surgeon showed me how to do Kegel exercises. I did them religiously daily until the surgery. After the surgery, I had on a catheter for 9 days. I even did Kegels during that time(I read later you’re not suppose to do them wearing the catheter). After removal, my surgeon had me do Kegels every hour; 10 fast and then 10 with a 4-5 second hold. Some days I did them the 13 hours I was awake. The result: I had ZERO incontinence issues. Even the doctor couldn’t believe it. My initial 3+4 Gleason score was changed to 4+5 after my pathology. So far, my PSA is undetectable and no new cancer. My decipher score shows a high risk of recurrence, so I continue praying and exercising daily. My recommendation to you is DO THOSE KEGELS! I hope your outcome is the same as mine. I hope this helps. Best wishes!

For me, the progression has been good and bad days. Days I work out are tougher. Less active almost dry. I do Kegels 7 times a day. A set of 10 slow and a set of 10 fast. There's a good iPhone app "KPFE" to track them. Also removed all bladder irritants from my diet -- coffee, soda, spicy food to start.

And to your question, same muscles to control your flow. And to your other question, my pelvic floor pt watched me do them.

Nearly four months out almost dry at night and days are getting better.

My story is almost the same as yours. 74 y/0 @ the time of surgery 10 months ago. Weight 145#, body fat 6%, very physically active (Ironman triathlete). Gleason 4+3 in one biopsy sample. At the end of this post I include a link to a blog post I wrote seven weeks after surgery, which covers my progress up to then. The takeaways:

• Start kegel's before surgery, then continue as soon as catheter is out. Quality and consistency, not quantity, is key. Seeing a specialist physical therapist helped get me started. I regained full bladder control in less than three months.
• No biking for 3 months, according to my surgeon and his mentor at the local Center of Excellence. Frustrating, but I have had NO issues biking once I re-started.
• Walk immediately after surgery, then daily. Start weight lifting within 3 weeks.
• Loss of penile erectile function was/is the most bothersome. Ability to orgasm was not lost. There is a link in the blog to a rehab program I found very useful, which included viagra daily, vacuum penis pump, and vibrator
http://bikrutz.org/triblog/?p=3487

Ok, here's a response from the modestly fat contingent of PCa victims.
You have much good advice already.
72 @ surgery. Very healthy "big boned" 5 11 / 235 lb guy who walks almost every day and periodically lifts light dumbells for upper body.
Professional PT instructed me 1 time preop (very fast to RP) and a few visits postop.
Very little to no continence issues. I attribute it to the surgeon's skill, the PTs assistance and good fortune.
Catheter no big deal; walked in the house carrying the bag in a plastic wash bucket (much more helpful than you would think).
Actually played a round of golf after 6 wks.
Feel free to private message if you have questions (pro tip: You will have Qs. Your surgeon's office my have patients who will share info)
Best of luck for a great result

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!

@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/