Okay. I have had a robotic prostatectomy complete removal. All tests say it was isolated and I wanted to have years with my family.
I'm 51 and have 4 grown kids and a 6 yo and a 2.5 yo.
Lots of memories and I didnt want to miss because of hospital visits.
Doctors said that I should be fully recovered in 6 mo to a year.
Has anyone else had the surgery and can share results or information.
Everyone is different. You are likely to heal more quickly being younger, but there are no guanantees. Do your kegels, and begin penile rehab as soon as the catheter is out.
Thanks for the response. I just feel lost right now. I know there are plenty before me and many more to suffer through. Everyone recovers differently.
So 6 months to a year for ED? And what about the bladder control? I've heard sometimes rather quickly
No one can give you a personal timeline. Here are some averages based on 391 men who had a prostatectomy:
My bladder control came about 4 months after surgery. I started Kegels _before_ surgery and was pretty regular with them. I am now 10 months with some beginnings of some amount of turgor associated with sleep. Not enough I could do anything with my penis but some promising stirrings.
Everyone is different but, as Tall_Allen said, youth (relative youth) is on your side. I presume your doc has already talked with you about sexual rehab--if he hasn't you need to be assertive about it. For almost no one is sex the "same" as it was before in terms of the physical mechanics, but that doesn't mean it can't be good physically or emotionally. And as far as the incontinence, results are all over the map. Take care of yourself--go easy physically, it takes a whole to heal. I hope you're one of those guys who heals fast and well! and this group is a great resource if you have more specific questions, or need some emotional support.
Just a piece of practical advice:
Do NOT have your catheter removed WITHOUT a prior x-ray to verify the tightness of your anastomosis.
I do not know what your medical centre's policy is, but there are cases that it is done, a week to a fortnight after surgery, blindly.
The appropriate procedure before catheter removal is a cystogram to make sure the urethra has healed properly, not just "an xray." Typically a short round of an antibiotic like cipro is taken prior to the procedure. At least here in the States.
No hurry to remove catheter because the second after you will be incontinent for several weeks. It took me 3 months to get back continence... I was on 1 pad per day 2 weeks after surgery... but it was annoying because the signals “bladder full”, “bladder empty”, “real envy, not real envy: they were all scrambled. So I at the office I had to go to the toilet every hour. And suddenly one day about 3 months after surgery. I forgot to put my pad but incredible it might been, I was continent again. The connections were made and I was pad free! It took me another 3 months to gradually stop leaking a drop when I was doing hard work or being in weird positions. It has been 7 months and I praise the surgeon. Still ED yet however, this is a more complex function and I understand it could take longer. Don’t push you too hard, take it easy for the first weeks.
"No hurry" to remove the catheter, well, yes, but the longer it is in the bigger the chance of side effects such as infection. The catheter should be kept in 10-14 days in most cases, after discharge from the hospital.
Indeed mine was there for 10 days and it was time to remove it !
Speaking of what happens after the catheter is removed, like you I experienced incontinence for about 2 months (I still leak some, especially after coughing or sneezing). You are right about the "no hurry" in the sense that when I had it at home I didn't have to get up to pee every couple of hours--slept through the night. Still, it was better when it got out. They didn't warn me about having pads, etc., when I went to the uro's office to get it out, and thus my underclothes were pretty soaked when I got home. They didn't prepare me for that. Also, even with the catheter in place, I still leaked even then. They said that was normal. The ED lasted for over a year and even then my erections occurred only with Viagra. I'm now 70 and single so I don't take anything to help. No spouse or SO to be disappointed along with me.
I had mine robotically removed 8 years ago and am still fine
To set realistic expectations, ask your surgeon how he defines "fully recovered." It may not be what you consider "fully recovered." Tall_Allen is right in that we are all different and recover differently considering age, pre-op physical condition, etc. Suggestions re: doing your kegels diligently and pursuing penile rehab are spot on. Best wishes for continued recovery and a long life!
Your surgeon should be able to give you an idea as to how well your nerves may have been spared. Still, predictive accuracy of a positive result ain't 100%. Going in for me they said they'd be able to spare nerves on one side. Post op I was told the other side was "mostly" spared. I had my RP just over a year ago. My continence slowly returned, and I stopped wearing pads after about 3 months. The ED improved somewhat, but still isn't great. I was 66 at the time of surgery. My younger brother was about your age when he had his RP and was continent in just a few weeks.
Hey Bab52413!
When first diagnosed I met a realtor that had a prostatectomy at about your age. It had been 10 years since his. He was quite forthcoming that he attributed his life to the prostatectomy.
I asked about continence. He said instead of tighty whitey's he now wore black underwear, a rare drop at times. Although the house I was looking at had been connected to the new sewer system there was a cesspool cover. I wondered whether it had been filled for safety or not. I picked the cover up and he held it while I looked. The cover wasn't light but he stooped and put it in place! He stayed dry! Do your Kegels!
As for sex he told me that his orgasms were much more intense than they ever were when he had his prostate! The drawback was frequency. I believe he didn't use any pharmaceutical "help".
He told me he goes to the gym every morning.
He had his prostatectomy nearly 20 years ago. He chose a Boston surgeon and at that time it was open surgery.
Diet to prevent recurrence is important as are some supplements. He does that.
My best to you and I hope the realtor's story lifts your spirits a bit. The thing about the orgasms -- I have heard that from several men but it doesn't always happen. Your age is in your favor.
Currumpaw
Age 71 at time of robotic assisted prostatectomy and in otherwise excellent health
Summary - 14-months post surgery IT is as if it never happened!
7-days post surgery (two days after catheter removal)- One of the great days in my life! I was able to start and stop my urine stream while standing over the toilet. I did not have full control when standing up or sitting down (I leaked badly) but I could make the stream stop and then restart it several times while emptying my bladder. Surgeon had told me this test would tell me if at least some of the nerves needed for external sphincter control were still functioning. He had to remove one side but felt he had spared the other.
1-month post surgery - walking a mile at a time but still pretty tired. Bladder control is very much intermittent. Farting, laughing, standing up, sitting down all cause way too much leakage. I become very frustrated and angry.
2-months post surgery - walking two miles a day with my wife and still suffering very annoying incontinence and little sexual function. I am beginning to sense some degree of bladder control but am even more frustrated when it suddenly disappears for a day at a time. Then I regain almost full control for a couple days... and then it is gone again.
3-months post surgery - back on my road bicycle for medium level rides (10-miles at 13 mph pace). Still have a lot of unpleasant leakage but wife thinks sexual function is improving. I feel like I may never be able to go outside without my Depends. Very upsetting!
4-months post surgery - doing long hard bicycle rides (25+miles at 15 mph pace) with almost no leakage during ride. Erections are stiff enough to be useful but not like the hard rock before surgery. Still a lot of incontinence if I do not concentrate on kegels.
5-months post surgery - I can take my 40-foot sailboat out and sail her by myself with no one else on board. Sailing that big a boat is a serious physical effort and the surgery seems to have had no impact. I do leak a bit when I'm hauling up the sails or winding the winches/
6-months post surgery - took up serious pickleball and play 2-hours a day/5-days a week with no apparent impact from the surgery. My bladder control is significantly better and wife finds my sexual drive/ability is annoying.
10-months post surgery- playing high level strenuous pickleball 3-hours a day, six days a week with no leakage or any residual problems from the surgery
12-months post surgery - almost 100% bladder control and I don't even wear a light pad for protection or peace of mind. My erections are still improving (never used any drugs to help) and orgasms are "different" but still intense. Wife is more than happy - she is annoyed I have returned to my horny old self
14-months post surgery - all is well and the only reminder I have of the surgery is the need for a PSA test every three months (PSA is 0.035 ng/ml at 14-months)
Patience and a "day at a time" attitude will get you thru the next year or so.
My surgeon had done over 1,500 robot assisted prostatectomies prior to mine. Before and after the surgery he told me 94% of his patients regained full bladder control within a year. Useful erections and the ability to have penetrative sex is achieved by about 90% of his patients within two years.
He cautioned that we men must keep our expectations of quick and easy recovery under control. We need to plan on / expect / work on a two-year time frame.
I didn’t even use a full pack of depends or barriers. Kegels and a referral for pelvic floor rehab did the trick. Penile rehab includes daily use of a vacuum erection device (three times for two minutes each with a minute between) for tissue preservation for a year, but mostly until nighttime erections start again in their own. Sedenafil (viagra) three times a week for a year. (60mg Monday, Wednesday, and 110mg on Friday). I actually had a bit of an erection after two weeks even prior to start of viagra (and you have to wait a bit after surgery). But three months post surgery I had decent results with viagra. I know I had nighttime erections but didn’t wake up with one for probably 9 months. Then one day I got one just holding my wife’s hand so I knew I was progressively healing. This December will be one year. I think any surgery that involves nerves takes a year to fully heal. My concern is that performance concerns without viagra could lead to ED more than the actual physiology. Hopefully the doc will let me keep some on hand. ;).
I honestly think fully localized is better because the nerves are like a basket of wet tissue paper holding the prostate. If you have any extra capsular disease it is almost impossible to spare the nerve. The skill of the surgeon to peel that away and to reattach the urethra to the bladder and the technique is key. My doctor changed his technique slightly on the batch of patients I was in and the urinary incontinence issues were noticeably better with the change. He was very pleased. So am I. I do Not regret my choice. I was and am 60 years old.
Lot's of kegels and pelvic floor rehab. Bio-feedback for the pelvic floor provided the most dramatic improvement in moving away from incontinence. It's going to freak you out, but hang in there and give it all you've got. I had a wonderful female therapist with a good sense of humor and very practical advise. The "stem" is the bomb! I dried up very quickly with visible improvements from rehab appointment to rehab appointment. I'm 11 months out, dry, having semi erections, orgasms came fast though. Oh, and don't stop doing kegels. And best of all, no cancer to date! I would do the prostatectomy again. Dr. Patel in Celebration Florida has a great program.
I had the surgery last February. I dropped the pads at about the 3 month mark, although I still dribble slightly occasionally when working in the yard. At about the four month point I would occasionally wake up with "a slight fullness" where I wanted it. Not enough to use, but enough to make me think it would have eventually returned.
Unfortunately then I started ADT and then RT, and any feelings of "fullness" are long gone.
Thanks everyone.. Today was bad. Got a ride awakening, apparently the Dr stated today that the surgery was good but now instead of being isolated it was apparently in the lymph nodes and seminal vesicles. So now they want me to do hormone and or Radiation therapy.
I dont want either at this point. I already made a drastic life altering decision and want to heal.
Any advice? I'm lost and emotional messed up cause I went to Dr pumped today and feel like I got a knock out punch.
I’m in the same boat as you with 3 lymph positive out of 25 removed. I am at .12 PSA and will see Dr at the end of the month...
Another one close to your situation.
4.5 months after RP, Gleason score = 9, pT3b due to a unilateral SVI (no lymph nodes and ECE).
I am drawing up my own plans because some medics are, or behave like being, totally ignorant. For example a RO I consulted, wanted me to have RT immediately after surgery.
When I uttered that there should be at least a 6 months healing period (others set it at 9 months), plus I was incontinent and RT impedes any improvement in this field, he felt that his neo-Moses commandment authority was violated.
The problem with medics is that their "commandments book" is not curved in stone, but constantly changing.
For example:
ADT prior-concurrent-and post RT is currently estimated as contributing a synergistic effect to the latter. A very recent study (1 month ago) based on reshuffling older clinical data, under PSA value conditions, claims the exact opposite. medpagetoday.com/meetingcov...
Without any further bashing of medical profession (I am an engineer and all of my 60s university books are still valid), this is my personal plan:
1) I take monthly PSA tests (guidelines dictate quarterly) so as to get an early warning of any consistent PSA increase.
2) I am doing my research on RT and ADT so as to have everything ready and waste not any time when/if needed.
3) Before starting RT, I will have a PSMA PET/CT and possibly the "ferrotran MRI" and CTC test.
4) As a rather long shot, I am also awaiting the results of my "Color" genomic test.
All these because some ~50% of salvage RTs fail as the source of the PSA increase lies outside the irradiation target.
I don't like try and error methodologies, especially when it concerns my health.
Thanks for your reply... I had a rough time listening to the Dr. When they removed the Catheter. All he had to say was me are through the first step. When I signed up or opted for surgery I was told it would remove all cancer.
I will not immediately start Chemo or RT.
I ..like you..believe I should heal. Though the last 6 months of frequent urination and no sleep was rough I hate not being able to control my bladder.
Good luck in your journey. I hope we speak frequently on this road as I see now it's a journey that many take but none of us have the same journey.
Like you I am a very active 72. I hike 2-3 hours every day 7 days a week. When the weather is nice I throw in a bike ride. My prostate removal is scheduled for December. I am doing kegels every day. I was concerned about what exercises I could do post surgery. I just bought Bowflex Max and have begun using it since I won’t be able to sit down to use my Concept2 or windtrainer for a number of months but encouraged reading your story.
I had a diagnosis of GS 4-3 last October so, exactly a year ago this week and then had RP end of November 2018
Today I’ve just completed a half marathon for Prostate Cancer -running 12.3min per mile. I’m 63.and I signed up to do it the week after surgery using it as a motivation drive to get back into life . The leaking took 3 months to come back under control, and I’m sure the slow gradual increasing exercise routine really helped
. I’m still on the ED journey but hoping for more recovery as time passes .
Like many I felt really Low and anxious about my situation following my RP operation
As everyone else says here we’re all different and recovery happens within different timescales for each of us. You’re young and your prognosis is good. So you’ll recover and things will become normal again. Wishing you well
It is hard not to be jealous of those that recovered their continence after RP surgery but know there are options.
I had RP in July 2016. It was 2 months before my 62nd birthday. I was active and in relatively good health with a 27 BMI. The surgery was supposed to be nerve sparing but the cancer was Gleason 7 with some cancer outside the capsule. The post-surgery report said the cancer was all contained in the prostate. A week after surgery the catheter was removed and I wasn't leaking which I thought was great. Unfortunately, that was due to the swelling and after a day or so I started leaking.
Within a month after surgery I started Kegels with the PT. They usually waited 2-3 months after surgery but I wanted to get the incontinence under control. I did the kegels as instructed and but after a few sessions I wasn't seeing any results. After that it seemed like the only option for me was more surgery but they wanted me to heal from the RP. They also wanted me to make sure that the cancer didn't come back before I had the surgery to control the incontinence.
Over the next year or so my PSA levels continued to rise. When they were up to .1 They recommend that I have radiation . I decided to get a second opinion and went to the Seattle Cancer Care Alliance. The oncologist I saw said that radiation wss the best option but I could wait to see if my rising PSA goes up to .3 I should get the radiation. When my PSA was a little over 2.5 and had been trending up I started radiation in October 2018. I completed the radiation and after 6 months my PSA was undetectable. Unfortunately my incontinence had gotten a little worse especially when I was active. Just a mile walk would require me to change a level 2 pad.
So now I am scheduled for a January surgery to insert a male sling. Hopefully that will take care of the incontinence. I hope your cancer doesn't come back and your continence returns. Know though that there are options.
Thanks for sharing. I'm hoping you fair well in this upcoming surgery.
Been rough this last four days.. leaking and some blood in urine.
Sometimes I feel like it's worse. But know others have suffered through.
Make sure to talk to your surgeon about your recovery. Negative thoughts tend to creep in at this time. You will get through it but just use the forum and talk to as many of your health care providers as needed to make sure you understsnd what is happening at each stage of your recovery. Then YOU can decide how you want to handle each phase.
Thanks again. It's good to talk to someone who had been through what you are going through.
The forum has been enlightening. It doesnt have all the answers but the experts are those of us who have or are going through it.
Gleason 4+5 10/12 cores 10-95%
Prostate Biopsy Results
Size of testicules...
Merry Christmas, you have prostate cancer
Prostate Biopsy
