I was very interested to read the recent thread ‘Anyone got breast lymphoedema’ because I sometimes feel I am alone with the problem, but I decided to start a new thread. I don’t post often because I’m in Germany, but I may go back to the UK.
In February 2008 I had a WLE, where about 600 grams was removed from one breast so I’m totally lopsided. I want to have the other reduced but haven’t found a surgeon yet, and the operated breast has lymphoedema so it’s larger than it was directly after the OP. It’s red, has orange-peel skin and is swollen, and has been like that since autumn 2008 at least. It’s partly the result of radiation, but almost certainly a permanent problem. I had 5 lymph nodes removed, which were clear, and the arm is OK.
The treatment is supposed to be complex decongestant therapy. But my gyn didn’t know the breast could be treated. In October 2009, the radiotherapy dept. told me to get MLD for the breast, and I got more advice on rehabilitation (normal in Germany, but I kept putting it off because three weeks away is loss of money if you’re self-employed). The gyn had earlier sent me for arm MLD, and the therapist didn’t notice the breast.
Since late 2009, I’ve been having MLD once a week, but I can’t face having it for the rest of my life, although I realize I’m lucky to get it.
The theory is that lymph carries protein, and if the lymph is stagnant, the protein goes hard and becomes fibrosis. We should see lymph as a bit like egg white. So if I stop treatment, the fibrosis will come back and it will be a bit painful, or is it not painful for the rest of you who have this problem?
Eventually I got my health insurance to send me to a lymph clinic for three weeks. This is the Feldbergklinik in the Black Forest. There I got MLD twice a day and was bandaged up too. The breast became soft again and the fibrosis disappeared. Some of the MLD is a bit like simple LD, but some is ‘fibrosis massage’, which I don’t think I can do myself. At first the fibrosis hurt a bit when this was done, but it got better and better.
At the moment I can’t bandage myself properly and I can’t wear a standard compression bra because the other breast is so much larger. I was also prescribed a weighted breast prosthesis, which I thought was great because it is better for my spine, but I now realize it weighs the breast down and makes the lymphoedema worse. Unfortunately the doctor I saw in the clinic was new, and I realize now I should have insisted on seeing someone with more experience. On top of everything, I read an article by the head doctor there, after I left, from which I gather that Tamoxifen often increases lymph problems. This means I should go back to an aromatase inhibitor - the clinic doctor simply said she knew nothing about Tamoxifen. So I’m back at square one, looking for a MLD therapist who can do the bandaging correctly and getting a second doctor’s opinion on Tamoxifen.
I can’t quite make the decision to stop treatment, but I expect I will one day. At least the time in the lymph clinic showed me how much worse off most other lymph patients are.
Other people with breast lymphoedema - has it ever got better or gone away?