What is lymphedema?

Lymphedema is a relatively common side effect following cancer treatment. Following breast cancer treatment, up to 56% of the patients may develop lymphedema. Lymphedema can occur following treatments for other cancers as well, according to the National Cancer Institute (NCI). Essentially, lymphedema is possible whenever the lymph system is disrupted.

Lymphedema occurs when the lymph system no longer effectively removes fluid and proteins that circulate under the skin, causing limbs to swell and eventually become hard, heavy, inflexible, and painful.

Lymphedema can be either congenital or acquired. In congenital lymphedema, patients were born with insufficiently developed lymph system. The condition develops when the lymph production overwhelms the lymph system's ability to drain. In contrast to the congenital lymphedema, the drainage insufficiency in the acquired lymphedema comes from traumatic injury or surgery. Among developed countries such as the United States, the acquired lymphedema is more commonly seen than the congenital lymphedema.

Lymphedema is unpredictable. It has been reported to occur within days of surgery to up to 30 years after an injury to the lymph system. However, majority of lymphedema cases (80%) occur within the first three years after surgery. Lymphedema occurs when the lymph system no longer effectively removes fluid and proteins that circulate under the skin, causing limbs to swell and eventually become hard, heavy, inflexible, and painful.

After an injury to the lymph system, regardless of whether it was from a surgery or an injury, it is unpredictable as to when lymphedema may occur - it has been reported from within days of surgery to up to 30 years later. The majority of the lymphedema cases (80%) do occur within the first three years after surgery.

What are the signs and symptoms of lymphedema?

Lymphedema will usually begin at the farthest part of the limb (hand or foot) but if you have an area at risk you should monitor the entire limb.

Your limb may have:

  • A full or heavy sensation 
  • Tightness of the skin 
  • Decreased flexibility 
  • Difficulty fitting into clothing or shoes 
  • Soft tissue swelling 
  • Pitting edema

How is lymphedema diagnosed?

Lymphedema is most frequently a clinical diagnosis. An experienced physician can reach the diagnosis from having performed a detailed history and a thorough physical examination. Radiographic (X-ray) imaging is frequently necessary to further increase the diagnostic precision and reliability.

Commonly performed imaging studies include computed tomography (CT) scan, radionuclide lymphoscintigraphy, and fluorescent indocyanine green (ICG) lymphography. Lymphoscintigraphy and ICG lymphography both involve injection of contrast into the skin, allowing the lymphatic system to pick up the contrast, and allowing visualization of the lymphatic system. While the lymphoscintigraphy uses a radioactive contrast and can visualize deep lymphatic tissues, the ICG lymphography relies on a non-radioactive fluorescent contrast and can only visualize superficial lymphatic tissues.

What is lymphedema staging?

Many staging systems exist for lymphedema severity staging as currently there is no consensus in the medical field. In order to facilitate communication with patients and other physicians, at UIHC, we have adopted the Campisi staging system. This staging system determines the disease severity based on how reversible the limb swelling is. Completely reversible swelling indicates early-stage disease; irreversible, persistent swelling is consistent with intermediate disease; while presence of thick, hardened skin indicates late disease.

Campisi staging system
1A No overt swelling despite impaired lymph drainage
1B Reversible swelling that subsides with limb elevation
2 Limb elevation only partially reduces swelling
3 Persistent edema; recurrent lymphangitis
4 Fibrotic lymphedema with column-limb
5 Elephantiasis with limb deformation including widespread lymphostatic warts

Non-surgical lymphedema treatment

Treatment of lymphedema is complete decongestive therapy (CDT), which consists of manual lymph drainage, compression bandaging, exercises to enhance lymphatic pumping, meticulous skin care, and persistent use of a pressure garment to maintain the volume reduction achieved through treatment. Many patients can be successfully treated and maintained with CDT.

Last reviewed: 
June 2018

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