Your body has a system of canals—tissues, lymphatic vessels, and organs—through which fluid flows. It’s known as the lymphatic system, which is an integral part of the immune system.  

The lymphatic system transports a clear, watery fluid known as lymph that contains the nutrients, proteins, and minerals the body needs. Through the system’s collection ducts—lymph nodes—damaged cells, cancer cells, bacteria, and viruses are filtered out and carried away. But, sometimes there is damage to or blockage along the canal system that keeps lymph from flowing normally. When this happens, lymphedema—the build-up of fluid in the soft tissues of the body—occurs, causing uncomfortable swelling in the arms, legs, and other areas of the body.

“We have made remarkable progress in limiting the extent of surgery in removal of lymph nodes, where most women will undergo just a sentinel node biopsy,” says Mehra Golshan, MD, MBA, deputy chief medical officer for Surgical Services at Smilow Cancer Hospital and professor of surgery (oncology) at Yale School of Medicine. “Despite this progress, lymphedema can still occur and our team at Yale works on identifying those at risk of lymphedema before surgery to help reduce the chance of developing it. For those who do get lymphedema, there are many treatment strategies that our physical and occupational therapists use to help patients.”

There are a variety of ways that a blockage can occur. Cancer and its treatment are risk factors for developing lymphedema. It can also result from scar tissue that forms after surgery, radiation therapy, or an injury. 

Tumors can also cause a blockage in the lymphatic ducts. Although rare for a tumor to form in the lymphatic system (lymphangiosarcoma), cancer cells can travel to other areas of the body through the lymphatic system and spread (or metastasize).

There are two types of lymphedema:

• Primary lymphedema. This occurs when the lymph system doesn’t develop normally. Signs start to show at birth or even later in life. 
• Secondary lymphedema. This develops when there is damage to the lymph system.  

The following symptoms of lymphedema can make it difficult to sleep and perform everyday activities:

• Swelling in the extremities such as one or both arms, hands, fingers, legs, and/or toes. 
• Heavy-feeling arms and legs
• Tightness in the skin
• Itchiness in the swollen area
• Burning sensation in the legs
• Difficulty moving
• Skin changes (thickened skin, or developing blisters or warts)
• Hair loss

Undergoing cancer surgery or radiation therapy on lymph nodes that are located in the underarm, groin, neck, or pelvic areas increase you risk. What’s more, the more lymph nodes that are affected, the greater the risk. The National Cancer Institute also notes that removing the sentinel lymph node (the first lymph node in a grouping near a tumor) carries less risk. 

Other risk factors include:

• Being overweight
• Healing slowly after a surgery
• Scar tissue to the collarbone-area lymph ducts
• Having a mastectomy or lumpectomy for breast cancer in which all or part of a breast is removed and underarm (auxiliary) nodes are removed
• Surgery for uterine, prostate, vulvar, and ovarian cancers as well as melanoma or lymphoma  

The first step to diagnosing lymphedema is through a physical exam with your doctor, who will also consider your medical history. Several diagnostic tests may be needed such as an MRI or a lymphoscintigraphy, in which a radiologist uses imaging equipment to observe the flow of fluid through the body after injecting a substance into the lymph ducts. Then, a grading system is used to describe the stage of lymphedema. 

Although damage to the lymphatic system can’t be fixed, your doctor may recommend a variety of approaches to help relieve lymphedema. These include wearing pressure garments to prevent fluid buildup, light exercise to prevent worsening of the condition, and weight loss. There are medications that can help relieve swelling as well as laser therapy, surgery, bandaging, or massage therapy. 

An important part of our cancer care is preventing and treating lymphedema so that you can live your life after cancer.

Early identification is key to limiting the progression of lymphedema, Dr. Golshan notes, and it is something Yale specialists monitor closely for early signs. “If lymphedema does occur, we can refer patients to our physical and occupational therapists to offer a range of treatment options,” he says.