Incontinence After Prostatectomy Surgery

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Since someone voted my reply up, I wanted to give an update. My PSA has been undetectable for eleven months now. I have been on immunotherapy for one year, although I switched from Opdivo to Keytruda this calendar year due to insurance reasons. I'm also on the hormone drug Lupron. Only side affects have been occasional diarrhea and of course the hot flashes from the Lupron.
I think the game plan is for me to stay on both drugs for one more year. Then, hopefully, my immune system can do it's thing without any external help.
I try to eat two of my daily meals vegetarian style. I don't have the willpower to eat my third meal that way, but still try to keep it healthy. So, I'm keeping my fingers crossed and hoping for the best. Signing off from a stage 4 cancer patient.

 

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@Holden8285

I too have been taking Lupron shots, getting plenty of hot flashes and mild nausea. I now sweat very easily and a lot. I'm also on Apalutamide ( Erleada ) and started both around the first of Sept 2020. My doctors don't think I'll ever get off either of them, at least that's what they keep telling me. My PSA is down 0.20 but was as high as 165 15 weeks after surgery, so my cancer is very hormone sensitive.

Not sure what my future holds, but I see my oncologist in July.

 

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It's been six months since my RP; went directly to Chemo and Lupron until end of March. Just do Kegels. In Jan. I bought a Wiesner Clamp, and that helps a lot around the house. But any stooping and bending for me and it can slip off. I will try physical therapy this summer. I'm just beginning to feel stronger after 8 weeks off of Taxotere. PSA is undetectable, which is the win to this point. I also had a low grade bladder tumor removed and a neuroendrcrine tumor removed from my stomach. I do have a tumor marker for that up and get a endoscopy June 4 as a follow up. I start feeling good about one thing, then another thing pops up. It's good to get it off my chest. I'm on Xtandi now w/ Lupron. Some hot flashes. Having trouble sleeping. That bothers me greatly. I'm still working from home but will likely retire this summer and get more exercise.I also had breast cancer 5 years ago and so far have beaten that, but had mastectomy and chemo for that cancer. I hope the leaking will get better as I get to the end of the year.

 

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I'm 67 and had robotic prostate surgery July 27th. I had a small positive margin and one seminal vesicle involved post surgery Gleason of 7. It took about 6 months to become relatively dry and in the last 4 months I use just one small shield every 24 hours for the few drips and leaks I have. If I'm going to do anything that requires a lot of movement I wear a heavier pad just in case but rarely have moderate to big leak now. I haven't been brave enough to go without a shield yet but may try soon. I did 38 sessions of RT ending in late December and have been on a 6 month Lupron shot since then. My PSA tests have all been non-delectable including the last one about a month ago. My oncologist wants to do another 6 month shot which I'm not crazy about but he's the expert. I see my urologist July 1st and we will see at that time if he concurs.

I know it's tough and I was very discouraged the first 2-3 months with all the leakage and using 4-5 heavy pads a day. But I kept up my kegels (don't overdo them!) and walked about 5 miles a week. Things gradually got better. I have had the usual Lupron side effects of fatigue and hot flashes. I started taking 50 mg of Zoloft about a month ago and it has helped greatly with both of those effects along with the mental aspect.

Both docs continue to maintain I have an 85% chance of total cure and that ain't bad considering that my cancer had spread outside the prostate. Best of luck to all the rest here - youare not alone!

 

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Bgharvey,
Update from my status reply of 12 days ago:
The FDA has just recently allowed a change in the dose/schedule for keytruda. So, now I take twice the dosage but just once every six weeks.
I’m scheduled to have my three month Lupron shot next week. That will give me a total of one year and nine months of “coverage” of lupron (six total injections of lupron). If my PSA continues to remain undetectable after the change in keytruda dosage/schedule, then I plan to end my Lupron treatments. I will continue my Keytruda treatments for the full two years. I think the Lupron has caused me low red blood cell count, joint pain (wrist/fingers), and possibly other issues.
It is my understanding that I can restart the Lupron treatments if my psa becomes detectable.
I am somewhat surprised that there is not more national patient data or more structured/consistent protocols for metastatic prostate cancer. I guess everyone’s cancer is different (Gleason score, in the bones or not, genomic data, etc). Also, the drugs themselves have only been around three or four years, so the long term efficacy is unknown.
I will keep you informed.

 

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I’m 58 had RP surgery on 4/13/21. I’m dealing with incontinence issue. I went saw a oncologist cause there minuscule cancer in the seminal vesicles. I’m planning to have 39 IGRT treatment. I need to get the incontinence issue under control. Welcome to suggestions. I do kegels. Thank you.

 

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I had radical prostatectomy 4 months ago. I'm about to turn 63 y/o. Did Kegels before operation and after, had no problems really with leakage - occasional small leak if I lifted something heavy too quickly, or sometimes when I laugh: a little bit can squirt out but nothing to worry about - just enough to leave a small circle on my undies. (I don't need those pads - only wore them for a few days post catheter removal, but were always dry so stopped using them...
Then, last night everything changed... I woke up at about 3:30 this morning with a pool of urine below me. I was so disappointed and angry. This has never happened before.
Has anyone else experienced this - Bed wetting (while asleep)? I'm terrified tat this is going to happen again and maybe it will become a regular thing.
I have to be honest though, the last couple of weeks I've been complacent - 'forgetting' to do any Kegel exercises and hopefully that's what cause this morning's disaster.
Now I've been 'Kegelling' constantly all day!

 

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Hi @T0nyp0rtr - a short answer to your question is yes radical prostatectomy can cause bedwetting as well as daytime leakage.
It does seem to be less common to wet at night. So much so that I was never even warned that this could happen when I left hospital.
The day I had my catheter out I had pads ready for the day but was not prepared for the night at all. Next morning I woke to a soaking wet bed and wondered why no one had mentioned this might happen. I quizzed my continence nurse on the lack of warning and she told me that I shouldn't be wet at night and that I wasn't normal. Which made me feel bad. She also told me that lying in wet sheets had given me nappy rash. Which made me feel worse.
In my case I have continued to wet the bed regularly since my surgery with no real improvement.
You sound to be in a better place yourself which is something to be grateful for. Just one night time accident doesn't mean much on its own. Your fluid intake may have been out of whack that day; or you may have had a full bowel that can put pressure on your bladder. Or like you say your kegels had slipped a bit.
As long as it is a one off "don't worry - be happy" (and keep up the kegels).
If it does happen again talk to your urologist or continence nurse/team.
Either way it may be worth investing in a washable sheet for your bed (the sort that go over the bedsheet - google search brollysheets to see what I mean)- they are exellent at keeping a leak contained and really easy to change and wash. Much easier to deal with than wet sheets and matress.
Good luck with this, and feel good about how well you are recovering. You sound to be doing amazingly well considering you are only four months post-surgery.

 

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My prostate removal was 2 years ago. I have had a few night bed wettings over that time. It seems to be related to excess drinking. I like water, flavored seltzers and unsweet tea. Too much of a good thing can be a problem, especially late at night. I have noticed post surgery that I don't have a strong message when my bladder is full like I had before surgery. This is not a problem during the day since I have more control being awake. At night a full bladder does not wake me up...leakage occurs. I use a pad under me (from Sam's Club) to help protect the bed from an accident. Gives me some peace of mind.

 

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@56vw and Phil 6003
Thank you both for replying to my message. Both of your answers are most reassuring. I became quite concerned that this should happen 4 months after my operation, as prior to that, apart from a couple of tiny squirts which didn't even require a change of underwear, I should suddenly totally drain my whole bladder, severely soaking my mattress while asleep Was quite shocked :O - totally unexpected.
From what you've both said: it seems I was on the right track - my negligence with the Kegel routines - became complacent and almost totally stopped doing them. My Urologist and 2 urology nurses couldn't stress enough how important the pelvic floor muscle exercises are to ensure leakage and accidents such as what happened the night before last are best minimized or even completely eliminated. They never mentioned bed wetting though and like you two blokes: it never happened, thus it never occurred to me that bed wetting would ever be a problem. I guess they never mentioned it because as you suggested it's not so common as general leakage during the day when moving around a lot, lifting stuff, coughing etc. They were so right about the importance of Kegels, I just cannot afford to be slack with any of this stuff. Have to discipline myself.

Thanks again both of you, for sharing your experiences and ideas.

Tony

 

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Hi All
Thought I would give a quick update, been 10 months since open prostatectomy. Just had another psa which is zero so I'm very grateful for that, however I still leak during the day so I wear a pad, I am now down to 5 to 10 mls on average, but fortunately dry at night. I found that I could go without a pad in the mornings but after midday and especially at the end of a day I will leak, I assume that this is because the muscle is knackered by then and unable or unwilling to function as it should. However sitting and lying down no problem, but sneezing and laughing do usually encourage a squirt if I'm not clenching my pelvic floor. Sneezing I find particularly hard to guard against! Still doing kegels when I remember (so not every day)
Interested to hear from anyone who was at a similar stage and is now dry? I understand that there are surgery options further down the track, have spoken to one who had a sling put in but still wears a pad due to leaks, not to keen on the idea of more surgery ( the last experience was enough for me!)
Really appreciate this forum and hearing peoples experiences
Cheers Jules ( a slightly damp Kiwi)

 

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Hi
I’m 62 and was diagnosed with cancer earlier this year and had an open radical prostatectomy on October19th and the catheter removed two and a half weeks later.
I was expecting some incontinence as that was discussed as a side effect, and had read enough to know that this was an expectation, but was not prepared for total incontinence, except when lying down or sitting, which has continued now for almost 3 months post op.
Have been doing the Kegel exercises every day and walking every day. I think that I am experiencing a slight improvement in the mornings over the last week as the first pad will last 4 hours instead of 2 but past midday its full-on leakage. So total pad usage of 6 a day
I do find that I do not leak when sitting or sleeping other than stress incontinence if I forget to tighten the pelvic floor. But if I tighten and stand up, I don’t leak but as soon as I relax its a flood. Toilets are not always close enough at work.
I am due back to the Urologist at the end of Jan to find out hopefully what is going on. I have had a zero PSA result back so am very grateful for that, but this incontinence is very trying! I was getting quite depressed about it as it didn’t seemed to fit in with what was published, there is always mention of stress and or urge incontinence, I do have stress incontinence as expected but have never got an urge to go just a warm feeling as it leaks out, this never seems to get a mention in articles, though having just joined this forum I am reading about similar experiences which in some way is comforting as you begin to feel that your on your own, and the so called professionals I see just say that my condition is disappointing!(Yeah tell me about it!) Since there must be people out there with similar experiences, I would love to hear that it gets better, and if it doesn’t what then?
Thank you for reading,
A very damp Kiwi

 

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@Sticks49 Interesting to read that I've gone from very damp to slightly damp in 7 months! I am kind of resigned to the fact that this is as good as it gets. Although this thread is about incontinence after surgery I am very mindful that others are in a far worse situation than myself not just with incontinence issues so I really should be content with my lot.
Cheers
Jules

 

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@Holden8285 Sorry, I haven't been on here lately, been immersed in building a new kitchen.

I've had three recent PSA tests and each one is higher than the previous. First one in May was .36, Then in June .60 and July .95. So it seems to be rising quickly. Don't know why, my Oncologist says he isn't concerned until it is over 2.0 and that was a month ago. Who know, I may be there already, but I have another test scheduled for Mid Sept.

Now I have a sharp pain in one of my breasts and may have to have an ultrasound. I just get a little nervous with pains like especially when they told me I could develop breast cancer. It never ends.

 

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Bgharvey,
I’m on vacation out of town all week. But let me give you a quick summary. After meeting with my oncologist, I decided not to quit the Lupron. Because we really don’t know how the Lupron and KeyTruda have suppressed my cancer so well. I’m still undetectable after 13 1/2 months. So basically I will put up with the side effects of Lupron in order not to gamble with my treatment. So I will continue on for the full two years of treatment with both drugs.
I’m sure you’re aware of the breakthrough on targeted pet scan that detects prostate cancer that may have spread. Supposedly they can pinpoint where the cancer has spread to much better than the past. Then there are studies where tracer that detects the prostate cancer can have an element of medicine attached that can actually kill the prostate cancer. I don’t know all the details but you can look it up. i’m not able to get more specific and look up exact info at this point on vacation. But my overall feeling is we are unlikely to die from prostate cancer with such low PSA levels and better detection methods now. So try to relax and ask your oncologist what he plans to do when you hit 2.0. There is a lot of discussion and variation as to when to treat the cancer when PSA levels are rising. I’m sure he has scientific data to back up his strategy to wait until PSA is 2.0.

 

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@Holden8285 Thanks for that information. I actually did not know about the pet scan, I'll follow up with my oncologist in December. I'm being treated at the Cleveland Clinic so I know I have a great team behind me.

I found a little information on Cancer.gov that states the following regarding the FDA:
The Food and Drug Administration (FDA) hasn’t approved any PSMA-targeted imaging agents, so PSMA PET-CT isn’t available in the United States outside of clinical studies, explained Lalitha Shankar, M.D., Ph.D., of the Cancer Imaging Program in NCI’s Division of Cancer Treatment and Diagnosis. So I don't know how soon that might be available in the States.

From an insurance standpoint, I received a letter stating that my insurance company will only pay 100% of my treatment for another year, and of course they didn't say what it would jump up to after that. But I'll worry about that later.

 

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Bgharvey:
From what I've found out the FDA did approve the PSMA-PET scan drug named "Pylarify" as of May 27th. There's a place in South Florida that will do the PSMA-PET scan. You first need to get on the priority list and be prepared to pay $5400 "cash" when you get the scan. Here's the link https://www.petimagingflorida.com/psma-pet-scan/

I haven't seen much (see below) about the extra "medicine" that actually attacks the cancer cells but it sounds like an awesome and possibly life saving development. I'm awaiting my first PSA report after having my Prostatectomy seven weeks ago. Depending on the results I'm planning on getting the PSMA-PET scan if the test results and Urologist indicate it would be helpful to have.

The "extra" medicine/therapy may, and I stress may be "177 Lu-PSMA radioligand therapy" but I can't find much information that I really understand so it may be something entirely different from what Holden8285 was talking about.

 

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Bgharvey and Padded53,

I was ahead of myself in stating that mCRPC (radioactive molecule that hunts down and kills prostate cancer cells) was available to the general public. The two articles below refer to clinical trials only, although there seems to ongoing progress in this area. I was out of town on vacation when I responded and did not have the info in front of me at the time. My mistake.

New Scan Finds Prostate Cancer Cells Hiding in the Body (Published 2020)

The test seems likely to improve the diagnosis and treatment of a disease that kills 33,000 American men each year.

www.nytimes.com

PSMA Targeted Therapy Trial Results: New Hope For Men With Prostate Cancer

There is incredibly hopeful news on the horizon for men with metastatic castration-resistant prostate cancer (mCRPC). Today, promising results were released from a clinical trial of a revolutionary new class of therapy for mCRPC: a radioactive molecule called 177Lu-PSMA-617 that hunts down and...

www.pcf.org

 

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Very interesting news as I'm one that is at high risk for prostate cancer cell spread. So far my PSA tests have been undetectable but the next test in early November will be the first one after the end of radiation and hormone treatment so it will be an important one. I don't know if mCRPC will be approved in time to help me but I hope so.

 

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@ShellKnobCat What medication(s) were you on for the hormone therapy and did you have significant side effects?