Post prostate removal due to cancer
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Archives1
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Pretty much everyone is here due to incontinence, including post RPS. 3 months out like you is not unusual to still have incontinence. Doing the kegels should help over time. Still early for you. The impact on your life depends partly on how much leaking you have. I use two pads per day, so I carry one in my back pocket that allows me to do my normal activities without worry. Are you dry overnight? That is a good sign, though I haven’t been. There are some other threads on this site dealing with your exact problem. Just scroll down the list. Bottom line is that being cancer free is the most important thing.
Archives1
Staff member
You are in the right place.
First thing I did was read all the old posts on here that seemed relevant. I had mine removed in 2019 at 59. I also had radiation and other surgeries for strictures that developed. Find a good physical therapist that only focuses on pelvic floor and incontinence. I found condom catheters provided the most security at work and going out in public after trying every other option. Good luck! Feel free to ask any question. Someone will be able to provide some help.
Another great resource is Franktalk.org
Or>
www.meetup.com
Here is a link to a podcast
open.spotify.com
First thing I did was read all the old posts on here that seemed relevant. I had mine removed in 2019 at 59. I also had radiation and other surgeries for strictures that developed. Find a good physical therapist that only focuses on pelvic floor and incontinence. I found condom catheters provided the most security at work and going out in public after trying every other option. Good luck! Feel free to ask any question. Someone will be able to provide some help.
Another great resource is Franktalk.org
Or>
Prostate Cancer Men's Support Group | Meetup
For people with prostate cancer. Understanding the disease and its treatment, living with the treatment and with the disease. This is a support group for a condition that is common. People (men and trans women) with prostate cancer do not have much chance to talk about it. We meet on Zoom. Come and
Here is a link to a podcast
Adult Bedwetting Podcast
Podcast · [object Object] · Sibling podcast to the r/adultbedwetting subreddit. Dedicated to the topics of adult bedwetting and incontinence. We take a deeper look at the topics that so many of us keep behind closed doors.
open.spotify.com
Archives1
Staff member
Very common to leak when you stand or physically active. Sneezing, coughing and lifting can trigger a leak. I am over a year since surgery and still have incontinence which is mild to moderate. I’m a small minority of post RPS patients still incontinent after a year, though improvement can happen up to two years. There are some other interventions that I can try if the problem persists.
Archives1
Staff member
At 76 today and almost 6 yrs post RP, most are in the same boat. Your age is on your side to become dri(er) with time. Even after further surgery - AUS or Sling - most still need pad(s). Anyone who says they’re completely cured, I would question unless they’re quite young, i.e., under 55-60.
Stay active with lots of walking, which helps pelvic floor. Initially walking may exacerbate it, but over time and distance it will improve. Don’t give up.
I do weights, power yoga (pelvic floor), desert xeriscaping, and walk. Throw everything you’ve got into it, as a major challenge. Of course, the absolute goal is to remain <0.1 PSA.
Stay active with lots of walking, which helps pelvic floor. Initially walking may exacerbate it, but over time and distance it will improve. Don’t give up.
I do weights, power yoga (pelvic floor), desert xeriscaping, and walk. Throw everything you’ve got into it, as a major challenge. Of course, the absolute goal is to remain <0.1 PSA.
Archives1
Staff member
I started going to a physical therapist for Pelvic floor therapy. I think its helping. RP was in March. Some days i get by with a light pad. Max pad needed on days when I'm walking alot or doing work in the yard. But I don't need anything at night or when I first wake up or when sitting. So, it does get better, though not as fast as any of us would like.
Archives1
Staff member
Klew11 said:You are in the right place.
First thing I did was read all the old posts on here that seemed relevant. I had mine removed in 2019 at 59. I also had radiation and other surgeries for strictures that developed. Find a good physical therapist that only focuses on pelvic floor and incontinence. I found condom catheters provided the most security at work and going out in public after trying every other option. Good luck! Feel free to ask any question. Someone will be able to provide some help.
Another great resource is Franktalk.org
Or>
Prostate Cancer Men's Support Group | Meetup
For people with prostate cancer. Understanding the disease and its treatment, living with the treatment and with the disease. This is a support group for a condition that is common. People (men and trans women) with prostate cancer do not have much chance to talk about it. We meet on Zoom. Come and
Here is a link to a podcast
Adult Bedwetting Podcast
Podcast · [object Object] · Sibling podcast to the r/adultbedwetting subreddit. Dedicated to the topics of adult bedwetting and incontinence. We take a deeper look at the topics that so many of us keep behind closed doors.
Shebolski18 said:
Archives1
Staff member
I'm 73. Had mine removed 10 19 23. Penile catheter for 7 days after. Still have some mild pain from that. Like it's still there sometimes. Doing keagles & wearing diapers 24/7. I can almost make it thru the night now. Standing up & moving certain parts will cause a leak.
Hope you get better as do I hope I will.
Hope you get better as do I hope I will.
Archives1
Staff member
Yes as you put it "it's tough". I am now 69 (just yesterday) and had my RP in March 2022. I saw very little improvement for the first three months. By six months I had improved a lot and am dry at night, with the exception of those occasions when I get a head cold and am coughing a lot. During the day I still leak. It's better in the morning when I am rested but gets worse by the mid afternoon. I use a mixture of pads, clamps and external catheters. I tend to use pads at home when I can change easily and sometimes later in the day use a light pad with either Pacey Cuff or the Uriclack. I am a retired school principal but I am currently working two days per week, helping out in a small school. On occasions like that I tend to use the external catheter and leg bag because of the security in a public setting with kids. I continue to do Kegels, although perhaps not as consistently as previously. There are times when it's emotionally tough for sure, especially, when you realise that about 4 in 5 men are dry eventually and you are in the 1 in 5 that are not dry. However, as some have commented, there can be improvement up to two years (for me March 2024) and so I will give it time and am keeping an open mind on the possibility of the AUS.
Archives1
Staff member
I am 10 months post RALP and sound a lot like all the responses. After 7 months of too slow improvements in my leaking, my uro had me go to Pelvic Floor PT, and I am responding to it. I have never leaked at night, but always leak when standing for long periods of time, or when being active. And at 70 years old, I try to be active every day, so I obviously have issues. I fill one thick pad during 2 hours of pickleball, or nine holes of golf. When just hanging around the house, I will go through two medium pads a day. The more people I come across who've been through this suggests that the statistics about percentages of men with long term leakage are way off. Most of my acquaintances still have small leakage issues even years later, but I'm guessing they are not being represented in the data. One major complaint I have is the lack of checking into my history. My records from years ago should show that I have a distended bladder; my former career didn't allow me easy bathroom access, so I learned to hold my urine in too long. But that was in a different state, with a different urologist. My PT thinks those stretched muscles around my bladder have an affect on the speed of my regaining continence, but it is unlikely my current urologist even knew about it. I blame myself for not bringing it up, but at the time I just wanted the cancer gone, and "90% of men regain their continence in the first 6 months" made it seem like a non-issue.
Archives1
Staff member
I’m 65 - 18 months post RP, 2 months post sling surgery. Used a pullup mens diaper over a large pad with thin nylon type boxer brief over that and found it to be highly effective- combined that with a clamp (see link below) when going out for a long time. Release the clamp every 1-2 hours and follow other directions and never had an issue through my clothes and was able to remain active. Went through 2 large pads a day without clamping but rarely leaked into the pullup and even then only after an extended time. Kegals and walking and pelvic floor exercises helped over time but I never got past 1 heavy pad per day so I went with sling surgery and have now gone almost 2 months with no pads, pullups or clamping.
Like you, never really had an issue through the night, just minor leakage if any - problem was standing, bending, squatting, cough/sneeze, or waiting too long.
Keep at it and best of luck- it does get better!
Like you, never really had an issue through the night, just minor leakage if any - problem was standing, bending, squatting, cough/sneeze, or waiting too long.
Keep at it and best of luck- it does get better!
Archives1
Staff member
I'm 74. Surgery was Aug 2019. PSA still undetectable. I use a light feminine pad daily because coughing, sneezing, heavy lifting and sometimes exiting a low car still may cause leakage. Rare night leakage so I sleep with a pad. These precautions give me peace of mind. I had your issues for at least the first 6 months after surgery. It caused mental issues but I got thru that. Exercise helped a lot...I use a stationary cycle daily. I'd recommend giving it some time before making any drastic decisions.
Archives1
Staff member
58 years old and have RP on 9/28/22. Currently using one light pad per day but was 6-7 heavy pads when I was at your point last year. Hang in there, be patient, do your kegels, and walk as much as possible. It will get better. And like others have said, this is the place to be. Lots have went through similar situations.
Archives1
Staff member
Hang in there! I just went three years past my RPS. At the 6 month point, I was dry at night, and leaking less than an ounce per day. However, I then needed salvage radiation, and that messed me up. By 15 months post surgery, and 8 months post-radiation, I was leaking 40+ ounces per day. The doctor tried Botox injections, and that cut me down to 15-20 ounces per day, but all the exercises couldn’t fix the scarring at the bladder neck from the radiation. So, last June I opted for the Artificial Urinary Sphincter. This has been like a miracle. I dribble a little bit, so wear a thin pad, but I am 99% dry. Don’t give up hope.
Archives1
Staff member
51 years old and had RP on 8/16/2023. Still use a pad, sometimes 2 per day. Mostly dry overnight. Was up until about a month an half ago, I was using several pads a day. PT helped me turn the corner with a focus on pelvic floor exercises and core strengthening. Definitely gets better, but I was very frustrated for awhile as it was challenging with my weekly business travel requirements.
Archives1
Staff member
Age has its benefits and disadvantages with post RP incontinence. The ad is better odds to dryness and the dis is copying with employment settings. This is not to mention ED onset at a young age.
As far as statistical reports of rates for permanent continence, I think the numbers we have been fed by urologists are absurd. How do they arrive at their stats, since many victims are not followed by original surgeon, people move/switch urologists, docs move/die, etc. So how do these numbers get established? Is it merely a low estimate to encourage us before we go under the knife - ah ROBOT?
As far as statistical reports of rates for permanent continence, I think the numbers we have been fed by urologists are absurd. How do they arrive at their stats, since many victims are not followed by original surgeon, people move/switch urologists, docs move/die, etc. So how do these numbers get established? Is it merely a low estimate to encourage us before we go under the knife - ah ROBOT?
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