Understanding Lymphedema for People With Breast Cancer

Causes, Symptoms, Treatment, and Prevention and Management of Lymphedema

A woman undergoes radiation therapy.
A woman undergoes radiation therapy. Mark Kostich/Getty Images

What do you need to know about lymphedema when you have breast cancer? What causes it, what are some complications, how is it treated, and is there anything you can do to prevent it from happening?

What is Lymphedema?

Lymphedema is swelling that occurs due to the accumulation of lymphatic fluid (also called lymph) in an arm, or sometimes a leg. Lymph is a watery substance given off by the cells. Under normal circumstances, it travels through the body through a system of vessels that parallel blood vessels.

The lymphatic system also includes lymph nodes that serve to filter the lymph and remove waste, after which the lymph enters the bloodstream. If the lymph nodes or vessels are damaged, lymphatic fluid may accumulate in the surrounding tissues, which results in the swelling and discomfort.

What Causes Lymphedema?

Rare, inherited disorders in which the lymph nodes and vessels don't develop or function normally can cause lymphedema, though cases that arise this way are rare. More often, it's another condition, infection, injury or medical procedure that blocks or damages the lymph nodes or vessels. Infections are the leading cause of secondary lymphedema (cases that are caused by something else) worldwide; however, in the United States, the main cause of the condition is surgery or radiation therapy for breast cancer.

Breast cancer can result in secondary lymphedema when:

  • Lymph nodes are removed from the armpit for biopsy - via either a sentinel node biopsy or an axillary lymph node dissection.
  • Surgery damages or cuts lymph vessels or nodes in the chest wall and armpit.
  • Scar tissue from surgery blocks the flow of lymph through lymph vessels.
  • Radiation causes scarring that blocks or damages lymph nodes and vessels.
  • Cancer cells migrate to lymph nodes, causing them to enlarge and interfere with their ability to function.
  • Tumors press on lymph nodes or vessels and obstruct lymph flow.

When Does Lymphedema Show Up?

Lymphedema may occur at any point during or after treatment for breast cancer. Sometimes lymphedema is temporary, occurring just after surgery or after an injury to the arm. In other cases, it's a chronic condition that waxes and wanes over the course of one's life. Lymphedema may occur decades after surgery for breast cancer, so it's important to continue reading about possible preventive things you can do yourself to lessen the risk.

How Common is Lymphedema after Breast Cancer Treatment?

It's hard to say how often lymphedema occurs with breast cancer. There is quite a bit of uncertainty involved with making the diagnosis, but it's believed that between 7 and 56% of breast cancer patients are affected, depending on the research. Also, lymphedema tends to adopt a variety of definitions depending on whether you are asking a patient to report on her own condition or asking a physician to make an objective assessment of its presence.

Researchers agree that more studies need to be conducted to understand the frequency of lymphedema in women who've had breast cancer.

Who Gets Lymphedema?

Anyone who has had breast cancer or breast cancer treatment can develop lymphedema. The risk is higher for women who undergo axillary lymph node dissection (more extensive surgery in which multiple lymph nodes are removed for biopsy) than sentinel node biopsy (a more limited surgery in which only one or two lymph nodes are removed for testing). The risk is also higher in women who have had radiation treatment or chemotherapy, as well as those who are overweight or obese.

What are the Symptoms of Lymphedema?

The main warning signs and symptoms of lymphedema are:

  • Arm swelling.
  • A feeling of heaviness or fullness in your affected arm.
  • Having the skin of your arm feel taut or retain an impression when pressed.
  • Having your arm become hard to move or less flexible.
  • Having your clothing or jewelry feel unusually tight.
  • Noticing a reddening of the skin on your arm.
  • Weakness, pain or aching in your arm.

What Kinds of Complications Can Result from Lymphedema?

Untreated lymphedema can have serious consequences, including severe infections, skin ulcers (open sores that don't heal,) and extreme swelling and thickening of the skin (elephantiasis). Lymphangiosarcoma, a form of cancer, was historically of concern for people who had breast cancer surgery. However, with the development of more sophisticated mastectomy procedures, this is nearly unheard of today.

Diagnosis

Lymphedema is generally easy to diagnose. The swelling is usually evident, and a measurement of the affected and unaffected arms can be compared. Testing is typically not done to diagnose lymphedema, though it may be considered if there is a suspicion that another process is going on, or if the swelling is not responding to initial attempts to control it.

Imaging tests -- such as computed tomography (CT), ultrasound or magnetic resonance imaging (MRI) scans -- can resolve any lingering questions about the diagnosis. A test called lymphatic scintigraphy can provide additional information about the area of blockage. This test involves the injection of a radioactive dye and then recording images of the dye as it moves through the lymphatic system.

Treatment

Unfortunately, there's no outright cure for lymphedema. Instead, the condition is managed in an effort to minimize its effects by seeking to decrease the swelling, control the discomfort or pain, and avoid complications.

Lymphedema treatments include:

  • Exercise: Special kinds of exercises that gently contract muscles can aid in pumping lymph fluid out of the swollen limb.
  • Massage: Specially trained physical or massage therapists can provide manual lymph drainage, a series of gentle massage maneuvers that encourage lymph flow out of the affected limb. However, people who have active cancer, infections, blood clots or congestive heart failure should not undergo this form of treatment.
  • Compression: Compression can also encourage the flow of lymph out of the affected arm. Compression can be provided in a number of ways, including elastic bandaging, a special compression sleeve or stocking, or the use of an air-driven (pneumatic) pump.

Prevention and Management

It's important to avoid anything that might constrict or injure the affected arm, because this can greatly increase the risk of infection. Try to do the following:

  • Achieve and maintain a normal weight, as recommended by your physician.
  • Continue to use your arm as normally as possible, as muscle contractions help pump fluid out of your arm.
  • Keep your arm and hand clean and well-moisturized, to avoid cracking from dryness.
  • While reading, watching TV or otherwise at rest, keep your arm elevated above the level of your heart.
  • Avoid exposure to heat (for example, don't use hot tubs or saunas,)
  • Use sunscreen daily and consider wearing sun-protective clothing.
  • Wear gloves when you garden, clean house or do yard work.
  • Be very careful when using sharp instruments in the kitchen or while doing craft projects.
  • Avoid tight jewelry or clothing, other than prescribed compression garments.
  • Avoid blood draws, shots or intravenous (IV) placements in the affected arm.
  • Ask to have your blood pressure taken in your unaffected arm.
  • Carry your purse on your unaffected arm.
  • Avoid lifting heavy items, including children.
  • Wear long sleeves outside -- and consider using bug spray -- to avoid insect bites.
  • Even if your doctor hasn't recommended that you wear a compression sleeve, ask whether you should do so when traveling by airplane. Cabin pressure changes can worsen lymphedema.

It's important to see your doctor if you think that you are developing lymphedema. You doctor may also refer you to a physical therapist who specializes in treating this condition.

Sources:

Ezzo, J., Manheimer, E., McNeely, M. et al. Manual lymphatic drainage for lymphedema following breast cancer treatment. Cochrane Database of Systematic Reviews. 2015. 5:CD003475.

National Cancer Institute. PDQ Cancer Information Summaries. Lymphedema (PDQ): Health Professional Version. Published online July 7, 2015.

Singh, B., Disipio, T., Peake, J., and S. Hayes. Systematic Review and Meta-Analysis of the Effects of Exercise for Those With Cancer-Related Lymphedema. Archives of Physical Medicine and Rehabilitation. 2015 Oct 9. (Epub ahead of print).

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