Large fluid retention after RARP

One other person did complain about the fact that they had to have a drain in for quite a long time due to lymph nodes being removed.

A drain, commonly a Jackson-Pratt (JP) drain, is used after a prostatectomy or lymph node removal to prevent fluid accumulation (seroma), minimize swelling, and reduce pressure on the surgical area by removing fluids like blood and lymph. It acts as a safety measure for healing, often inserted after extensive lymph node dissection to prevent complications.

I must admit I’ve only heard about this twice, Your case being one of the times. I’ve attended four advanced prostate cancer meetings every month for five years and attended five other meetings for two years. Nobody else has complained about this, Just heard about it once in this forum.

You could go to the top of the forum and do a search and see if you can find the other person that complained, Unless somebody else has that information.

Here’s some information I got with explanations for lymph node usage and removal

Lymph nodes aren't just passive waiting rooms for immune cells, they actively train and educate T cells, and send them off to do their job," said Professor Axel Kallies, PhD, Laboratory Head at the Doherty Institute and the corresponding author on both studies. "Our research suggests that removing lymph nodes during cancer surgery, a common practice to prevent tumor spread, may inadvertently reduce the effectiveness of treatments, such as checkpoint blockade and CAR T cell therapies. Preserving lymph nodes could strengthen immune responses and increase the effectiveness of immunotherapy."

But what are lymph nodes, and what do they do?
Lymph nodes are small, bean-shaped organs scattered throughout the body that act as checkpoints of the immune system. They filter lymph fluid, which drains from tissues, trapping and destroying germs, cancer cells, and other harmful material. Inside, lymph nodes are packed with immune cells like T cells, B cells, and dendritic cells that communicate, train, and multiply in response to threats.

@jeffmarc Thanks for this info! Guess I need to play the lottery soon since I seem to have propensity for the low odds!

I had RARP Jan 25 (I am 72)
A few months later I experienced pelvic pain. I went to urgent care and was diagnosed with hernia ( not unusual following RARP) the clinician could feel a bulge. Next stop general surgeon who told me I did not have a hernia ( despite the bulge on one side) however I was no longer symptomatic and let it go.

Then perhaps four or five months almost a repeat, I felt the bulge and pain went to my PCP who diagnosed hernia again , sent me for a scan to confirm via ultrasound it was not confirmed and I was not uncomfortable. So I let it go again.
Urologist had little to offer
Then this April I had the pain come back and this time I went through about four-five-six days of chills, fever, sweating ( had to change shirts several times at night) I thought I had a bad cold especi9ally since I have been around a bunch of kids with infections. MRI was ordered and an infected abscessed lymphocyte/lymphocelle was found. My primary care told me I should have been in he ER on IV antibiotics. My urology practice got the scan on a Monday and then called me on a Friday and prescribed amoxicillin, without ever talking to me. , by this time the fever and chills had gone away. When I finally got to see the urologist' PA I was referred to a radiologist interventionist I was scheduled to get the drain the next day. However while on the gurney getting a last final MRI the lymphocyte/lymphocelle had shrunk and was close to an artery. The interventionist cancelled the procedure telling me it was now small and was too close to the artery that it was better to avoid the risk and just monitor. According to him , this is not uncommon following RARP
My PCP and the radiologist interventionist sure thought it was serious
I am not terribly happy with the urology practice but that is another story

Hi,
If you not that happy with your Urology team I would find another one. Sounds like you had an infected lymph node or was there ever a positive diagnosis of a hernia?
Dave 3+4

I had RARP at Mayo Rochester late October 2025. They also took some lymph nodes.

In December I started having pelvic pain, constipation, and pain on urination. It ebbed and flowed a bit so I held out in hopes that it would get better. It
Did not. Finally on Jan 5 the pain was excruciating and I went to local ER.

They did an immediate CT Scan that revealed a lymphocele. And, the lymphocele had mashed my bladder into a new shape. I had a fever and blood count was way whacky. They called Mayo who wanted me to come to their ER.

Mayo installed a drain and I stayed two days at Mayo on IV antibiotics. I got the drain out two weeks later. They said the bladder will eventually return to its normal shape. I just had another CT scan and it had not yet returned to form.

Mayo surgeon said it was a 1/100 result in RARP with lymph node dissection. Internet says it’s a little higher than that, maybe 2%.

I can’t imagine having to wait days to get the thing drained with the pain I was in. You guys must have had enough sense to go in earlier that I did. The ultimate risk with delaying is sepsis.

@clevelandguy no hernia. Have a call with my doctor tomorrow to find out more details.

@clevelandguy

the hernia seems to have been ruled out.
I am fairly certain that the problem all along was the lymphocele. One of the surgeons said it was almost as big as my bladder. I kind of wish they had drained it but I also agree that the risks outweigh any benefit and it has shrunk, possibly resolved since.

I am a little stuck with my urology practice however because of biological recurrence I am now seeing an oncologist at a major teaching hospital and will probably not be dealing with urology that much going forward.

A little background

I saw a urologist I really liked for many years .
His group practice got bought out by a large regional chain. Things really went downhill ( all the patients are treated like numbers, large waiting room, you do not always get to see the provider you want and I had a really troubling experience with a kidney stone while involved with this practice
I then tried a very renown large teaching hospital. I saw one of the urology chiefs. I was not impressed by his manner but could live with it. However when it came time to schedule the RARP he told me he was referring me to one of his colleagues. I checked out the reviews ( and I know very well that even the best docs can get some negative reviews) however, this person had many negative reviews in two of the most important areas; patient care/follow up and results

This concerned me enough that I went with a local group that had a very good reputation on both counts. I had the RARP however, patient care/follow up has been very disappointing since

It is really too bad it got dragged out. A lymphocele is one of the known risks after RARP, if samples of lymph nodes are taken. You would think that would be the first thing to come to mind for a urologist, or even another MD after knowing you had RARP surgery.

"A lymphocele is a collection of lymphatic fluid in a body cavity, typically occurring after surgery or trauma that disrupts the lymphatic system. A lymphocele forms when lymphatic vessels are damaged or disrupted, causing lymph fluid to accumulate in a space within the body that is not lined by epithelium, unlike a true cyst or tumor (Wikipedia). It is most commonly seen after surgical procedures such as pelvic lymph node removal..."

My surgeon explained that when they remove lymph nodes during a RARP, they do not cauterize them or sew them shut. I envision a garden hose waiving around spewing lymph fluid. Normally the lymph fluid keeps draining and does not form a pocket. Some surgeons install a drain after surgery, mine does not. So, in my case lymph fluid built up in a pocket in my abdomen, started crushing my bladder (and some nerves) and got infected. By your description it sounds like the same happened to you.

Thank you very much Jim

Your post reminded me one of the doctors did think I had a cyst.
I was going to urgent care offices, my PCP, two different general surgeons and getting different scans when all along it was a lymphocelle

I really think my urologist and the practice should have done more. My PCP told me she would have put me in the ER on IV antibiotics.

After my RARP I reached out five times in five months to the urology practice
* once about bleeding ( I just wanted to make sure I was OK. I was past the slightly brown urine and had some real red about a month into recovery The response via a massage 'drink more water'
* once to ask about general recovery and how long to expect incontinence no reply
* once to request meds for overactive bladder response : a script for Gemtessa was called into my pharmacy no conversation, instruction, details
*once to request referral for Pelvic Floor muscle PT I got the referral in the mail nothing else
* once to ask about possible hernia. I was told I could go see a general surgeon

What makes this so bad is that this is better than the previous practice

@jim1961 I am pretty sure I have a lymphocele. I am still draining an average of over 450cc per day 9 days after drain placed. Did your surgeon discuss what techniques are available if it does not stop draining on its own? My surgeon says the Interventional Radiation team usually “scleroses” the pelvic area with a liquid that seals the leaking lymphocele. I have also heard of two other treatments. One is called lymphatic embolization, and the other is called laparoscopic “unroofing” that directs the drainage into the perineal cavity. Has anyone heard of the different methods to treat lymphoceles that continue to drain?