Lymphedema, or swelling of one or both arms caused by a buildup of fluids, may occur any time after treatment for breast cancer. Any treatment that removes the axillary lymph nodes or involves radiation to the axillary lymph nodes carries the risk of lymphedema because the normal drainage of lymph fluid from the arm is changed. However, there is no direct relationship between the number of lymph nodes removed and the risk of lymphedema. There is no good way to predict who will and will not develop lymphedema. It can occur right after surgery, months, or even years later. The chances of developing lymphedema remain throughout a woman's lifetime following cancer treatment. Women who suspect they have lymphedema should contact their doctor directly.
Some women we interviewed described their experiences of lymphedema. This included swelling or a feeling that the arm or torso was bigger than usual, tightness, a heavy feeling, tingly arms or just a weird feeling that did not feel right. Some women felt it was a bit painful but not a lot. Women also described that changing symptoms over time, especially with weather changes.
Even though most women experienced the symptoms in their arms, Debbra describes developing lymphedema in her trunk, also known as truncal lymphedema. Most women went to see their health care professionals. Even though most oncologist specialists can recognize lymphedema some of the women experienced that other health care professionals would not always directly recognize the symptoms as lymphedema and some women had to insist that something was wrong.
Several treatments were mentioned for lymphedema such as lymphatic massages, physiotherapy, regular exercise, yoga and water exercise. Joanne said that "If I didn't have deep tissue massage every two weeks I don't think I could raise my arm." Tina could hardly raise her arm and said: "So what basically by having the lymphedema stuff done they rerouted the lymph system to take a new route around which really helped." Shelley made arrangements at work so that she is able to move more to help her reduce the symptoms of lymphedema. Some women were able to visit specialized units in their hospital where the lymphedema was treated. Women also mentioned that they had to wear a compression sleeve to reduce the symptoms. Most women wore it for a while especially in the beginning but less over time. Margaret mentioned that she now puts it on especially when she has to travel.