After a right ovary was removed and cancer discovered i had total abdominal hysterectomy (TAH) in Jan 2016. Subsequent test results showed cancer had not spread. In May i developed swelling in my right foot and leg. Initially, after ultra sound scan the swelling was diagnosed to be due to a 13cm cyst in the area where lymph nodes were removed, three from right abdomen, as part of the TAH. The doctors thought the cyst was pressing on kidney and arteries causing my right leg to swell. I had a tube inserted to drain the cyst, fluid continued to flow for 5 weeks and doctors decided to remove the drain and hoped cyst would collapse by its self. Unless I rested my leg 24/7 it continued to swell, I never allowed it to get to any size before taking action to rest and raise it. I'm lucky I'm retired and for the most part my time is my own. When I asked if this could be lymphodema I was told ' I should expect swelling as lymph nodes removed' I asked to be refered to lymph doctor to be told no such thing, how about a lymph expert, was given a leaflet with bulit points on do's and dont's and a list of contact phone numbers for MLD clinics . I subsequently arranged an appointment with a MLD clinic. Where it was agreed I have lymphodema at stage 0-1 and compression tights have been ordered.
The consultant gyn/oncologist has put me on the list for a keyhole procedure to 'deroof' the lymp cyst . (As i understand it, Cut the top off to allow fluid to flow in to the abdomen ) The latest scan shows cyst at 7cm.
I'm undecided whether to have this op. From everything I've read its seems any disruption to the lymph system has the potential to exacerbate lymphodema.
Is there anyone who has has similar experience with a lymph cyst and or this deroofing procedure. Any advise would be welcome.