Radiation/Lymphodema

[GeddyLee]

Hello, please see my bio for background (55PSA). In short, I was put on ADT for 3 mos, then RP in Feb. 2021. Gleason 9, with 3 out of 16 lymph nodes positive. Seminal Vessical invasion, Bladder neck as well. Non-nerve sparing. PSA rose to .2 in December 2021, then to .3 in Jan 2022. Had PSMA scan, CT and bone scans in Feb. 2022. Scans did not show the cancer. Told I have biochemical recurrence and need EBRT radiation to the prostate bed and lymph nodes (40 treatments). Started ADT (Orgovyx) a month ago. My concern about radiation to lymph nodes is possible Lymphodema. When I had the RP surgery, I had a drain for almost 3 weeks due to an abundance of lymphatic fluid every 24 hours. Did anyone else have EBRT and develop Lymphodema?

[Danish-patient Moderator]

Lymphodema is not an uncommon problem when lymph nodes are compromised either by surgery or radiation or both. It can even happen many years after the treatment. And it should be taken seriously, as you otherwise might risk developing infections. But it is possible to control using compression stockings every day. I have been doing that for two years by now and find it absolutely OK. A small price to pay for staying alive - the lymph nodes simply had to receive treatment to knock the cancer down.