Connect
What is a Prostatectomy Like?
It is living hell
You wear a catheter for 7-10 days after surgery,
Then the fun begins.
You are now incontinent, and you must wear diapers, you actually leak pee,
It at times squirts out of you. You have constant urge to go meaning trips to bathroom every hour or less.
You have to deal with constant leaking, ED, potential UTIs.
Embarrassing and
Humiliating absolutely terrible time.
The care team will tell you that the
Incontinence last 9 months or more.
Remember prostrate cancer is slow growing
Surgeons will encourage surgery and your cancer will be gone but your life has changed forever because the incontinence is a daily challenge. Assuming you regain continence then you have to deal with ED.
Research as much as you can before making the decision to have prostatectomy. It is your body and your life afterwards.
But you potentially traded quality for quantity of life.
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
Please continue to give us updates about your sling. Definitely would like to know if it continues to reduce or eliminate incontinence.
They say that if people have had radiation, the sling doesn’t work, Or doesn’t work very well. Have you had radiation To the prostate of the prostate bed?
No fun at all for sure. Surgeons trumpet "nerve sparing" surgeory but the reality is much different. Nerves are very small , much like 2 lb mono fishing line. And theses are embedded in the enlarged PC prostate as most are, Surgeons' skill? HA!. VERY few are saved with the RP. You WILL leak, and "sporting wood" is now gone forever. My oncologist asked" how many pads do I use in a day." I responded that I now just use a trash can liner and wear it as a kilt. I is wise to also check ahead for any social gatherings to ensure the seating is vinyl. You now have a miniture "Trevi Fountain" in your shorts.. Small comfort, there are no crowds. Leaking is BY FAR the worst of the post RP effects.
Squirt on lad,
SW
Incontinence after prostate cancer surgery varies considerably. I did not have to wear a pad after surgery. Only leaked a little with heavy exertion. 3 1/2 years after surgery, I had radiation still no incontinence problems. Five years after that, I started leaking a little and it’s gotten worse and then better with medication. Never needed more than one pad a day.
Sorry you're having a hard time. I'm kinda in the same boat, in that constant leaking dominated my thoughts and days.
How long since you had surgery?
It's important to note that everyone is different & everyone's experience may be similar in some respects, but rarely the same. Some of us have longer-lasting side effects & some don't.
In terms of nerve-sparing, it's not just the skill of the surgeon.
The whole point of slicing us open in the first place is to get rid of the cancer.
And if the cancer has creeped towards the nerves (one or both sides) - or if it's found it's way to nearby lymph nodes - they have to go, in order to potentially save our lives.
Same thing... some of us are lucky & some are not. My surgery report said no lymph nodes were involved & both nerve bundles were retained.
No idea if the nerve thing is true. Erections are a distant memory & in terms of the 'penile rehabilitation' things we're supposed to be doing, I can't even touch the thing cause it's constantly covered in pee. What are we supposed to do? Wear gloves?
In terms of your long-term outcome, ask the experts who trained for years on this stuff, rather than that internal voice that's telling you that things will never improve.
I'm still struggling with incontinence 5 months on, but I'm not letting my stupid brain tell me that life is over.
I can squarely disagree that a blanket statement of guaranteed incontinence and ED is accurate. I had RARP almost four weeks, ago, had an erection within hours of leaving the OR and all but a couple nerves were spared, and I've had "wood" multiple times a day since, even on demand. I also have not had a single drop of incontinence.
I realize that dodging both bullets is pretty rare, as 85% of men have some form of incontinence - be it a single day or years on end, and about the same percentage have some form of ED as well - but neither of these are guaranteed.
Everyone's results will vary and the surgeons skill is absolutely a factor in saving the nerves, without any doubt - and saving the nerves gives you the chance to not have or to overcome ED. Incontinence, in many cases, can be corrected via pelvic floor work or even with surgical options such as slings and artificial sphincters.
I'm sorry that your experience was on the bad side of the equation, but it's not the guaranteed outcome for all people.
RP 5/2019. PSA 43 Gleasons 7-9. 8 of 38 lymph nodes removed at RP were positive for PC Horrible prognosis. No nerve bundles are left so leaking and ED are my future. Experts? A high school classmate in undergoing RT and Lupron. Dr. told him side effects from Lupron are rare TOTAL BS! Just loads of "we don't know and more research is needed" Bla bla bla. A recent member of my local support group, who I didn't know very welll I found out he blew his brains out while on Lupron. Ask the experts? Who trained for years? I have learned since my original diagnosis that oncologists are full of false info and outright lies. Best correct info is from members of a support group who are living the horrors of this disease. which include, no thanks to Lupron, insomnia, joint and muscle pain, weakness,headaches,sore throat,cough,nausea and more, flu and head cold symptoms. You get the idea
Best,
SW
You have most of your nerves!! Without those I stand by my statement. Without all or most of those nerves pelvic floor work is useless. Slings? artificial sphincters? For myself I have no interest in becoming a zombie. I still say without those nerves you will leak and have ED. "All but a couple nerves aere spared" You are VERY lucky and very far from no nerves at all as i am.
SW
My surgery was 15 years ago before they even thought of sparing nerves. As I mentioned I Had no incontinence problems after surgery.
The thing is men have two Sphincter one in the bladder and one in the prostate. After surgery men still have one sphincter left. Women only have one, but it is more complex than the man’s bladder sphincter.
It’s not just nerves that cause incontinence in men, that bladder sphincter is reconnected after surgery (That’s why you have to wear the catheter ) and that’s where some of the problems occur.
I will try to add updates over the next few weeks. And I had no radiation, just the robot assisted radical prostatectomy.
-
Like -
Helpful -
Hug
1 Reaction