Lymphedema after breast cancer

This has been on my mind as I have met with several women this week who are dealing with lymphedema after breast cancer. As you probably know, this can be a side effect of cancer surgery, and, once it happened, it never truly goes away. The goal is control, and that can involve a lot of PT and wrapping and pressure stockings or gloves and, sometimes, machines.

This is not an issue only for women post breast cancer, although they may be largest number of people involved. Anytime that surgery has removed lymph nodes and disrupted the normal flow of lymph fluid, this is potentially a problem. Reported incidence among breast cancer survivors varies greatly, but the best estimate is about 1 in 4 women may be affected. Lymphedema can happen when surgery causes a change in the pattern of natural lymph drainage; obviously, removing axillary lymph nodes can make this happen. Lymphedema can cause swelling of the hand, arm, breast, or even torso on the side where the surgery was performed. Some women experience discomfort, but many do not, but are distressed by the swelling and disfigurement. When more extreme, woman can be limited in clothing choices as some sleeves will be too small or tight to manage.

The goal of all lymphedema treatment is to reduce swelling. Common approaches include careful skincare to avoid infection, massage (often by a PT although women can do it for themselves), and compression sleeves or gloves

A serious worry can be the possibility of infection. The job of our lymph system is to fight infections, so limited circulation can result in sudden and potentially dangerous problems. We are warned to try to avoid cuts on the vulnerable side of our bodies and to quickly seek medical attention if there is redness and warmth. Infections can worsen very quickly, and women sometimes need to be hospitalized to receive IV antibiotics.

We all try to avoid lymphedema and there are many suggestions how to best do that. The list includes wearing gloves while gardening, not carrying heavy things with your arm extended (think: carrying a suitcase), perhaps limiting some exercise routines and using less heavy weights at the gym. More conservative advice also includes wearing a pressure sleeve when flying as the change in altitude may be a cause. As in the case in all things, my belief is the need to balance common sense with good self care. We each make our own choices about how much to worry and which behaviors to change.

BIDMC is one of the few hospitals in the world — and the only one in New England — to offer patients innovative bypass surgery to prevent lymphedema. The hospital also offers lymph node transfer surgery for patients with chronic lymphedema. If you are dealing with chronic lymphedema that has not responded well to more conservation treatments, you might consider a consultation

The National Lymphedema Network is an excellent source of information and recommendations.