Surgery for Breast Cancer-Related Lymphedema

It is estimated that one in five women develop lymphedema after breast cancer surgery. It is hard to find accurate numbers as different rates of incidence are quoted in different sources.

What is it? Lymphedema is swelling, caused by an accumulation of lymph fluid that can develop in the arm, hand, breast, or torso as a side effect of breast surgery and/or radiation therapy. There is not a time period when this can happen; it can appear quickly or years after treatment ends.

Lymph is the fluid that circulates throughout our bodies, through the chains of lymph nodes, to remove waste from tissues. Edema means an accumulation of the fluid. If this happens, it is usually gradual, and women sometimes feel a weird sensation before any swelling is obvious. Early symptoms can include tingling, numbness, a sense of heaviness or swelling, decreased flexibility or a feeling of tightness in the affected area. Early treatment can help, so do tell your doctor if you experience any of these feelings.

Surgery, specifically lymph node transplant surgery, is a big deal and requires careful adherence to restrictions during recovery [and beyond].

The risk of lymphedema is not limited to those who have been treated for breast cancer. It can also happen after treatment for ovarian, uterine, prostate or skin cancers, including melanoma. The extent of received treatment also affects the risk: the more lymph nodes that were surgically removed, and the more remaining lymph nodes that were exposed to radiation therapy increase risk.

There is no way to predict who will and who will not develop lymphedema. There are risk factors that make the condition more likely, and, for breast cancer patients, the combination of a full axillary dissection and radiation therapy top the list. Generally, it is a condition that does not warrant a great deal of anticipatory worry. If it happens, there are treatments that can help. Fairly recently, surgeries have been developed that can make an enormous difference for women who are experiencing severe lymphedema.

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 lymphatic surgery team, headed by Dr. Dhruv Singhal, also offers surgery to transplant lymph nodes to people who are experiencing chronic and severe lymphedema.

A recent review of 16 studies has compared quality of life of people who underwent surgery vs. others who received the more traditional treatments of compression and physical therapy. The findings were inconclusive, partly related to inconsistencies in patient-reported outcomes and partly related to the complexity of the situation.

My own limited experience of talking with a few women who have had the surgery and many others who have not would support this uncertainty. With the possible exception of surgery, lymphedema is not considered curable. It is generally manageable, and the extent of cosmetic appearance and limited activities is experienced differently by everyone. Some women with extreme lymphedema find it tough to find clothes with long sleeves that fit over an enlarged arm while others deal with very minimal swelling. Different people have different reactions to the suggestion of always wearing a compression sleeve or glove.

Surgery, specifically lymph node transplant surgery, is a big deal and requires careful adherence to restrictions during recovery and for a long time going forward. It can be very successful, but, like any surgery, requires careful consideration of the risks and possible benefits. If you are thinking about this possibility, do have a surgical consult to get accurate information and guidance.

The National Lymphedema Network has a great deal of information about the condition, lists of resources, and suggestions of how to reduce risk of manage lymphedema.