Hi all,
after a mastectomy (right side) and all the subsequent treatment I now have swelling on the torso (under arm right side) which can be quite uncomfortable.
Its similar to the fluid build-up after the mastectomy (18 months ago) and can be uncomfortable and very tender.
My GP isnt very understanding and precribed diuretics which maybe help for 24-48 hours but not longer. Ive had scans done at hospital and checkups but no-one has commented when I have told them how uncomfortable it can be.
I`ve always slept on my right side and find myself waking on that side and the swelling being greater because I do.
Any comments would be useful.
Hi Margaret,
It sounds as though you have trunk lymphodema. I had right sided mx, followed 2yrs later by prophalactic mx and bilateral recon with expanders. unfortunately I developed an infection post op on the right side (the side I had rads on and lymph node removal) and shortly after that noticed discomfort and swelling to the torso (under right arm). Saw BC nurse and mentioned lymphodema - she said no, consultant said maybe but in arm so I insisted on a referral to Lymphodema nurse for opinion. straight away she said it was trunk lymphodema(I didn’t know you could get it there) and excluded arm lymphodema.She said it was likely to be caused by the infection and additional surgery post recon . I was horrified- before I had recon this was never mentioned as a possibility .She did manual lymphatic drainage (a type of massage ) and I bought some close fitting crop tops which provide pressure to said area. Insist on being referred for opinion with lymphodema nurse as you want to get it dx immediatley so that you can have apppropriate treatment (not sure diuretics are appropriate). Do not be fobbed off- insist on a referral- they are the only ones who can dx it properly.
Hope you get it sorted!
LOL XXXXX
Happyshopper is right. Diuretics should not be prescribed for lymphoedema and you can get chest/truncal lymphoedema from bc treatment. (Aren’t we the lucky ones). As I understand it, a swollen arm, etc is a bit like a mucky swamp - diuretics will temporarily drain the fluid, but leave the sludge, in the form of protein behind, and this can harden and cause more problems.
GPs very often prescribe diuretics for lymphoedema - they don’t know much about it (you’ll probably know more yourself). The Lymphoedema Support Network (have you joined?) do a very good leaflets about diuretics which you can show to your doctor.
Of rather more use might be a compression garment which looks a bit like a crop top and some MLD (manaul lymphatic drainage). And you need a referral to your local lymphoedema clinic asap for this, as the earlier it is tackled the better. Don’t let them give you any ‘let’s wait and see’ - truncal lymphoedema can settle down quite a lot, but it does need help.
I only have mild lymphoedema which started in my arm (left) but I also get some swelling below and round the back of my armpit towards my ribs. Also a little bit on my chest wall.
The main bit is actually on my neck/shoulder area and I’ve had ultrasounds there to ensure it’s nothing too sinister like cancer there. The physio gives me kinesio taping every week to 10 days and the results are great - my swollen shoulder drops by about an inch ! Was at the surgeon’s for a check up last week and he said how impressed he was with the taping and also that the swelling on the chest wall is unusual but you can get it there (think mine is from the rads).
Fortunately I don’t need a sleeve and have a few little exercises/massage to do but only gently as they can aggravate the swelling and I can live with it if it stays like this and I have social visits to the physio !