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Large fluid retention after RARP
I had robotic radical prostatectomy on 3/31/26 at Mass General Brigham (partner of Dana Farber) by a world-renowned surgeon. (I am 67, overall good health, 3+4, Decipher 0.54, CHEK2 gene, father had PCa). First two weeks went pretty well - tolerated the catheter, which came out at 8 days, and was only slightly incontinent - so was feeling good. Unfortunately, went south at that point. I had frequent urination (every hour both day and night), foul-smelling urine, and pain in my penis right before voiding. Thought it was a UTI. Called urology PA and she ordered urinalysis, which showed no UTI, so I went into the clinic. She did bladder scan after voiding and found over 400cc of retained fluid. She thought it was in my bladder, so she put the catheter back in (wish I was knocked out for that, but I wasn’t!). 2 days later I had a CT scan that showed a grapefruit-sized collection outside my bladder in the pelvic floor. Since they did not know if it was a urine leak (causing a urinoma) or a lymphomcele (fluid from cut lymph nodes), they kept the catheter in. I was then scheduled for a drain placed by the Interventional Radiation team, but because they are so busy, not for 6 more days. The pressure caused by the collection on my bladder and kidney ureters was terrible. I ended up going to my local ER on Cape Cod 2 days later, and they directly transferred me as an inpatient at Mass General Brigham the next morning. Got the drain placed 3 days later. They drained 620cc of fluid during the procedure and tested the fluid for urine. No urine was present, so not a urine leak, so they removed the catheter. The resident urologist (my surgeon has not contacted me as I think he was out of town) said I have a “seroma”. I now have a drain and bag attached. This has caused by far the most pain I have felt, much more than the prostatectomy itself. I need to keep it in until I drain no more than 10cc for 48 hours. This seems like it will never happen as the drain amounts over the first four days have been: 4/29 - 357cc, 4/30 - 440cc, 5/1 - 520cc, 5/2 - 650cc. Obviously trending in the wrong direction. This is so frustrating. All the advice on this journey is to pick the absolute best surgeon possible if you choose that route. I thought I did, but this is not an expected outcome. I have my first PSA test in a couple of days and then a virtual call with my surgeon, during which I intend to express my frustration and ask:
Did something go wrong during the surgery to cause this seroma? Did he or his resident knick something that caused this fluid collection? Is this trend of increasing fluid drainage expected to reverse soon? What if it doesn’t - what is the treatment?
Has anyone else experienced a seroma after surgery? If so, what had been your experience? Thanks.
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@swen77, any update? Was the diagnosis of a lymphocele confirmed? How are you doing?
@colleenyoung This has been quite a journey. They did verify it is a lymphocele and not a urinoma. I have driven almost 2 hours each way to Boston hospital from where I live 5 times in past 10 days. Went to the ER on Saturday, 5/9 because it was not draining at all and I could feel the pressure against my bladder and kidneys. The ER team did a CT scan and pushed the drain further in and it started to drain. I then had a fistulagram/sinogram 2 days later, which checked to see if the fluid collection was draining anywhere outside the lymphocele. The fluid is contained, but they discovered that I have “loculations” or walls in the collection. So, I went back 2 days later for the team to insert a bigger drain that hopefully knocks down some of the walls, plus they started sclerotherapy. This is where they inject doxycycline into the collection, which irritates the walls and hopefully accelerates the collapse and sealing of the lymphocele. It could take another 5 treatments once a week since I am still draining over 250cc per day on average. I am supposed to get to <10cc for 48 hours, so it feels like it may be a long time. My surgeon, a nationally recognized urologist, says this happens to about 1% of his patients - I am finally in the 1% club! Would rather be in the 99%…
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3 Reactions@swen77, what a journey for sure. That's a lot of miles in the car and on your body. Hang in there.
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2 ReactionsI had a lymphocele as well that eventually abscessed and was infected. A general surgeon said it was the size of my bladder.
A little background
RARP Jan 2025 , about a month or so later, had bulge and discomfort right abdomen, went to urgent care, diagnosed probably hernia reached out to Urologist, no response, went to general surgeon was told it was not a hernia and it seemed better,
about 3-4 months later pain came back, went to urgent care told it was a hernia (again) , urologist (via PA) told me a general surgeon could handle it. Went to general surgeon, who sent me to vascular surgeon who then told me I needed to go back to urology
I went back to urology PA ordered scan which revealed abscessed/infected lymphocele. they got results on a Monday ( as did I that is how I know) they did not call me back until Friday of that week. Meanwhile my primary care provider said I should be in the ER on IV antibiotics. Finally urology referred me to vascular surgeon who I saw the next day. When he saw the report, he made arrangements to get me in the hospital the next day and have the drain put in. However, the next day when I was on the gurney being wheeled into the MRI room with an anesthetist, the MRI indicated that it had shrank . The surgeon stopped the procedure telling me it was good that it shrank and it was close to an artery so it was better to do nothing and hopefully it will resolve.
1. I am not terribly pleased with the care I received from urology
2 now I know that lymphocele is not terribly unusual post RARP (seems my urology team should have know this as well and not have recommended see a general surgeon)
3 this forum has been extremely useful to me
Ed
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3 Reactions@edinmaryland Hey Ed, I’ve read that lymphocele is more common if too many nodes are removed. How many is ‘too many’ is hard to say.
Was that the reason in your case? Thanks,
Phil
I wish I knew Phil
from the report it looks like one node from the right side was excised and one node on the left was dissected
does this seem routine to you ?
I had robotic radical prostatectomy on 526 26. Ironically enough the surgery who did my surgery at UPMC in Pittsburgh was allegedly some hot shot at Dana-Farber. He just arrived in Pittsburgh about a year and a half ago. I am having the exact same problems you are having. I am not so sure that something was innicked or messed up during the robotic surgery. I'm not real happy with the way this is developing and from the reading I'm doing the outlook does not look all that great.. I'd be curious to know how you were process develops.
I had robotic radical prostatectomy on 52626 I've had the exact same problems you have had and I'm getting very little information of cooperation from my surge. Apparently I have a 6.6 cm by 2-point centimeter mass pressure on my bladder on the right side The radiologist felt it was too dangerous to drain so Lord only knows what the future holds. In my reading it seems that the future doesn't look too bright for people with problems like cars. Hopefully I'm wrong. God bless
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1 Reaction@alvainajr sorry to hear that you have joined another unwanted club. I do not know why it would be too dangerous to drain, but I am no doctor. Some fluid collections resolve on their own and need no drain. I hope this is the case for you!
@alvainajr I am on day 49 of my drain. I started with a much larger collection than you, though.