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Posted 5/2/2022 2:43 PM (GMT -5)
Has anyone else had lymph draining issues for this long? Radical Prostatectomy Feb 16, 2022 Lymph nodes were removed. Staples and Foley catheter were removed 12 day later. I went to emergency (local hospital) for leg swelling on March 7, they installed a pelvic drain (it was not a JP drain) and I went home with it. March 28th, saw my urologist, informing him the draining is still over 100 ml, drain is getting clogged and fluid is leaking from drain site. April 4th after CT scan without contrast and fluid sample tested with results "creatinine on the lymph fluid was negative for urine, CT scan shows a good position for the drain.'' The urologist suggested 2 more weeks to see if the draining decreased. April 18, I see the urologist and describe the draining is still over 100 ml, drain is getting clogged and fluid is leaking from drain site. The urologist tells me the drain need to be replaced. May 2, I am leaking over 100ml per day from drain site and the drain bag collects nothing, still waiting for my appointment to change the type of drain.
Posted 5/2/2022 5:45 PM (GMT -5)
Pepe, welcome to the forum.
I haveno experience with or knowledge of your specific problem, although i did have surgery with 9 LNs removed. Just bumping this up in case anyone does.
My layments opinion is that this is going on a bit too long for it to be normal, and i would consider pushing doctors to go deeper in investigating whats going on. fwiw
Posted 5/2/2022 10:34 PM (GMT -5)
Thank you for your feedback Pratoman..
Posted 5/3/2022 7:44 AM (GMT -5)
Hello PepeDee, welcome to the forum. Glad you found us.
I did a bit of searching through old threads to see if I could find anyone with problems similar to yours. We get reports of problems with lymphedema (mostly swollen legs) after surgery where lymph nodes were removed, and a number of guys complain that the Jackson Pratt drain installed during their surgery overstayed its welcome, but I couldn't find any discussion that matches the full particulars of your problem; in particular, ten weeks is a long time to be putting up with this sort of problem.
You said you were waiting for an appointment to get your clogged drain replaced. Do you have an appointment and are waiting for the procedure, or are you having trouble getting an appointment? Will your urologist be installing the new drain or some other surgeon?
I'm not sure how much actual help we can be with your problem but we'll keep you company while you work your way through it. Do keep us posted on new developments; maybe your thread will help the next guy with a similar issue.
Here's a link to the discussion I found that seemed the most relevant. Bear in mind that none of the posters are medical professionals -- just guys sharing their experiences -- and the ones who talk the most aren't always the ones who know the most. Also bear in mind that the thread is seven and a half years old.
Three weeks after open radical retropubic prostatectomy, JP still draining over 400 cc per Day
The "search" box at the top of the page can be used to do your own searches if you like. It will return results from all the forums (not just prostate cancer) so a search for "lymphedema" returns results for breast cancer and lyme disease as well as for prostate cancer.
Posted 5/3/2022 12:23 PM (GMT -5)
Hello Peter, thank you for your welcome and reply. I checked out the link you provided and it does provide good information. I have read quite a few posts regarding lymph node removal and draining issues after ''RP'. I notice that all posts seem to mention the Jackson Pratt drain, aka JP. Three weeks after surgery, I went to the local emergency for leg swelling and they installed, using guided ultrasound, a ''Navarre'' pigtail drain catheter to drain lymph fluid from pelvis area. Since all posts mention JP only, I am hoping that removing this ''Navarre'' drain that is always clogging and installing a different drain type solves the issue because the alternatives seem complicated. My surgeon is talented and as a result very much in demand. He saw me 3 weeks ago and said he would talk to radiology regarding needed procedure, still waiting for date and trying to stay dry.
Posted 5/4/2022 11:06 AM (GMT -5)
It seems to me that your surgeon is too busy to pay adequate attention to your problem. Why don't you see a new urologist?
Posted 5/4/2022 11:03 PM (GMT -5)
PepeDee: I got curious about how a Navarre drain differs from a Jackson Pratt drain so I did a bit more Googling. There seems to be quite a bit of info online about the JP drains but not so much for the Navarre drainage catheters. I get the impression that the Navarre doesn't have the suction bulb that the JP drain has but just drains into a bag by gravity. Is this right?
I did find a page from a plastic surgery site that has useful information about managing a JP drain. Most of it probably doesn't apply since you have a different kind of drain but there is a video that has a section near the end that shows how to try to clear a clogged JP drain. I don't know if it would work with your Navarre drain but its maybe worth watching. Here's a link to the page with the video at the bottom.
Jackson-Pratt (JP) Drain Care Instructions
Posted 5/5/2022 4:51 AM (GMT -5)
I had severe leg swelling on my left side 3 weeks after my RP last year. Here's a link to what I posted then.

https://www.healingwell.com/community/default.aspx?f=35&m=4238862&g=4243031#m4243031

Although I didn't have a drain installed, my leg would swell from time to time. I ended up getting a referral to a physical therapist that specialized in lymph massage. I went to her every 2 weeks for about 2 months back last fall. I'm still wearing compression socks and I try to keep my leg elevated when I can. At this time I can barely notice any swelling if I do these two things. I think the massage help to clear everything up and get it to working properly again.
Posted 5/5/2022 8:08 AM (GMT -5)
I hear what you are saying Fiddlecanoe and not surprised at your suggestion, thanks
Posted 5/5/2022 8:24 AM (GMT -5)
PeterD: yes you are right, the navarre has no way to clear clogs and just is gravity fed. The drain became more and more difficult to clear as time passed and is not functioning at all at at this point. The drain site is doing all the work at this point, zero ml for the navarre drain and 100ml for the drain site. I received an appointment for May 12 to have this drain changed and hopefully this draining will stop. Walking and other activities seem to bring on the periods of draining, during these periods I become quite incontinent.
Posted 5/5/2022 10:33 AM (GMT -5)
GuitarHunter: It looks like we had similar issues just weeks after RP surgery. I appreciate the link and I will more than likely revisit the link and comments. Why I say that, is because I have no issues with leg swelling right now because the draining continues. I have an appointment next week to change over to a new drain and perhaps this will bring an end to this lymph draining but I have to suspect that the draining would have ended by now regardless of what type of drain is used. I can only hope, that when they finally remove the drain, that my leg does not swell again. In the mean time, I will learn more about massage and other alternatives in an effort to avoid another pelvic drain..
Posted 5/7/2022 6:52 AM (GMT -5)
My experience with single port surgery was no leg swelling and I did not have a JP drain post surgery.
Posted 5/7/2022 10:26 AM (GMT -5)
Hello Duck2, Thank you for your post. Did you have nodes removed? I didn't have a JP drain installed at time of surgery, I started to retain fluid in the 1-3 weeks following surgery and eventually had to go to ER, 3 weeks after surgery, when they installed this Navarre drain.
The collection of lymph fluid seems to be common or at least, more typical following lymph node removal. I am a newbie here and doing my best to learn from yourself and others on the site who have been travelling longer than I. I am curious and would love to have access to a urologist who could answer my questions. How does this lymph fluid just come come to a stop as described in many posts? It would appear that there is no end to it in my case. Next Thursday the navarre drain comes out and JP drain goes in, I can only hope that this makes a difference but unfortunately, I have my doubts.
Posted 6/8/2022 11:16 AM (GMT -5)
Update: I have to cut out some of the trials and tribulations since my last post and get to the part where they installed the "new and improved tube". This tube was installed causing some pain, eventually became clogged with infection and they wisely removed all of this stuff from my body. My health improved dramatically after this but I still have issues with swelling in the leg and lower belly area. The swelling affects the capacity of the bladder and still get up 3 or four times in the night to urinate. The stream is good and I do not wear a diaper or pads to bed. This swelling seems to be manageable and hopefully will become less of an issue over time.
It has been almost 4 months since RP surgery and unfortunately my first post op psa result was of 1.1.
The urologist said my next step was to receive a ''pet scan" and I am not sure when that will happen.
Posted 6/8/2022 12:29 PM (GMT -5)
Get the PSMA pet scan if you can, detects alot smaller cancers earlier. terry
Posted 6/8/2022 1:55 PM (GMT -5)
Thanks Terry, your comment is surely appreciated.
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