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Large fluid retention after RARP

Prostate Cancer | Last Active: Jun 21 8:32am | Replies (21)

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@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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Replies to "@colleenyoung This has been quite a journey. They did verify it is a lymphocele and not..."

@swen77, what a journey for sure. That's a lot of miles in the car and on your body. Hang in there.