Lymph cyst / Lymphodema

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.

7 Replies

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  • Where are you based? I have never heard of this procedure - and considering how the lymph system works, am at a loss as to how it could relieve Lymphoedema.

    Did you receive MLD to see if this could stimulate drainage via the remaining/unaffected lymph vessels?

  • Hi Lynora. I live in Ireland..

    The deroofing procedure is to just drain the lymph cyst and stop it from reoccurring. This will not help the lymphodema but my worry is; could it exacerbate it.

    From the info I've gathered online anything that effects the lymph system has the potential to effect lymphodema.

    At the moment, and I now believe from the begining, my leg swelling was/is due to early stages of lymphodema and not the pressure of the cyst on my arteries and kidney as diagnosed by the hospital. Which is why I'm thinking of not having the procedure and just monitoring the cyst and should it continue to grow deal with it then.

    I've no confidence in any medical professional that I've spoken to so far. I've asked many questions and got very vague answers, even 'we don't know' . I followed up asking for a referal to someone that would have answers and was told there isn't anyone. This seems to be borne out by all that I read online, doctors simply don't specialise in the lymp system.

    The MLD specialist I went to was very knowledgeable about the workings of the lymph system and treatment available, massage, tights, wraps etc but he was not able to advise on whether to have the procedure to drain the cyst and any effect that may have on my leg.

    He has prescribe tights but not MLD at the moment, as my swelling is negligible first thing in the morning and in minimal if I rest it through out the day.

    Thank you for replying

  • Hi hun I'm also from Ireland & awaiting proper diagnosis, why can't health professionals talk to each other

  • Hi Lynne. Are you waiting for a particular test or procedure, if so what and where will they take place.

  • I haven't a cyst or a hysterectomy however I do have bilateral Lymphoedema in my feet and legs into my groin. I'd really urge you to try having MLD sessions to see if it helps your cyst situation. It would certainly be positive for your Lymphatics. Perhaps the therapist who measured you for your compression garment is qualified to do MLD?

    I understand your hesitancy about having the further op on your cyst. If I were in your shoes I don't think I'd go through with it was it may exacerbate the Lymphoedema. The medics know little about the Lymphatics which you have learned the hard wat. You are fortunate to have caught the lymphoedem while it's still in very early stage - you want to keep it there! Wear your compression and learn simple MLD (SLD) that you can do to yourself and have professional MLD regularly, if possible. Take care x

  • The Lymhoedema Support Network may be able to put you in touch with lymph experts who might be able to advise you re impact of the 'deroof' procedure. Their phone number for information and support is 020 7351 4480, the e-mail is admin@lsn.org.uk and web is lymhoedema.org

    Good luck x

  • Thank, will get in touch with them xx

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