What is lymphedema?

Lymphedema is swelling caused by excess lymphatic fluid (lymph) collecting in the body’s soft tissues, usually in the arms or legs. It is a chronic (ongoing) condition seen mostly in people who have undergone cancer interventions including surgery, radiation and chemotherapy.

In treatment for some cancers, lymph nodes and vessels are removed or damaged throughout the course of treatment. This can cause a disruption in lymphatic drainage, where lymphatic fluid doesn’t drain properly from your body.

The condition can be mild with minor swelling and discomfort, to severe, when swelling is extensive, bringing with it secondary skin changes. If you’ve developed lymphedema, a skin infection can be a serious problem.

Treatment of lymphedema includes treating swelling and prevention of infections. Exercise, compression garments and pumps, manual lymph drainage, meticulous skin care, therapy and a healthy lifestyle can all help control your swelling.

Lymphedema and the lymphatic system

The lymphatic system is responsible for filtering out waste products from your body. It filters out cellular debris and transports white blood cells to fight infection throughout the body. When you are sick, it helps filter out toxins, bacteria and viruses.

Lymph is made of proteins, fats, glucose, salts, blood cell fragments and water. The plasma protein molecules in lymph are large. Disruption to the lymphatic system can make filtering out these protein molecules harder. Lymphedema is a protein-rich swelling and bacteria feeds on protein – which means a person with lymphedema is more likely to get infections. So avoiding cuts, scrapes or any trauma to the affected region is very important.

What are the types of lymphedema?

There are two types of lymphedema:

Primary lymphedema comes from rare, inherited conditions when the lymphatic system doesn’t develop properly. Lymphedema from these conditions can appear at these ages:

  • Infancy: Called Milroy’s disease (congenital lymphedema).
  • Puberty, during pregnancy, or up until age 35: Called Meige’s disease (lymphedema praecox).
  • After age 35: A rare, late-onset lymphedema (lymphedema tarda) can cause lymphedema after 35. This type usually causes swelling only in the legs.

    Secondary lymphedema is the most common form of lymphedema. It is caused by disruption to the drainage of the lymphatic system that occurs with trauma. In the U.S., cancer treatments are the most common cause of damage to the lymphatic system. However, not everyone who has cancer treatment develops lymphedema.

How many people are affected by lymphedema?

In the U.S, primary lymphedema is rare and affects only 1 in 100,000 people. Secondary lymphedema affects around 1 in 1,000 Americans. It’s most common in women who have been treated for breast cancer.

What are the causes and risk factors for lymphedema?

Causes and risk factors for lymphedema include:

  • Breast cancer surgery: Breast cancer surgery can increase risk of lymphedema in these ways:
    • When axillary lymph nodes (under the arm) are removed, lymph vessels are damaged.
    • Surgery is followed by radiation and chemotherapy.
    • Radiation therapy can cause increased inflammation to the skin, requiring an increased lymphatic load. Radiation damages the top layer of skin and decreased drainage is due to reduced ability of the skin to stretch.
    • Chemotherapy causes fibrosis (abnormal scarring) to lymphatic vessels, resulting in impaired transport of lymph throughout the system.
  • Treatment for other types of cancer: Whenever the lymph system is affected the risk goes up for lymphedema. There is more risk in treatment of prostate, pelvic area cancers, lymphoma and melanoma; head and neck cancers often cause lymphedema in the face and neck. These areas are closer to larger numbers of lymph nodes and vessels that may be removed or damaged. A tumor may also block lymphatic drainage.
  • Trauma: The lymphatic system is very close (about 1 cm, or .4 inch) to the skin’s surface. Any trauma can disrupt drainage or permanently damage lymphatic vessels or lymph nodes. Crushing injuries, burns and other traumas to the body can damage the lymph system, but even surgical incisions and scar tissue formation can act as a barrier for proper drainage.
  • Infection: Our bodies respond to infection with inflammation. If our system is at risk for lymphedema, an infection may cause an onset. And if the infection is severe, it can actually damage lymphatic vessels and nodes. (There’s a type of lymphedema caused by parasitic infection called filariasis, but isn’t common in the U.S.)
  • Obesity: In addition to being overweight, adipose tissue (fat) disorders can make one more likely to have lymphedema. Excess fat can press down on superficial lymphatic vessels and nodes, decrease lymphatic drainage and cause swelling. Keeping a healthy weight is part of treatment for lymphedema.
  • Cardiac impairments: This happens especially in cases of congestive heart failure. The lymphatic ducts empty lymph back into the heart. If there is decreased heart function, people may notice swelling to their legs and weight gain. If not treated properly, damage can occur to the lymphatics as well as to the skin, causing lymphedema.
  • Vascular impairments: The venous system is responsible for re-routing 80% to 90% of the total fluid in the body. If there is a venous insufficiency or damage to the vascular system, the lymphatic system acts to help filter out fluid. But if a chronic issue with the vascular system is left untreated, the lymphatic system will eventually be unable to carry this large lymphatic load and swelling will start. An untreated chronic venous insufficiency will turn into lymphedema.
  • Kidney disease: Your kidneys work to remove extra fluid and waste products from your body. If there is impaired kidney function this can cause decreased ability of the body to remove fluid. This can back up to the entire system, causing swelling that may lead to lymphedema.

When does lymphedema show up after cancer treatments?

Lymphedema is unpredictable, which makes it a frustrating condition. It may occur right after cancer interventions or it may happen months or even years later. Depending on the type of surgery and cancer treatments you receive, you may never experience lymphedema. It’s important to tell your provider right away if you notice any of the symptoms listed below.

What are the symptoms of lymphedema? What do they feel like?

Symptoms of lymphedema may develop slowly over time or they may have a sudden onset. If you are at risk for lymphedema, or have had a history of lymphedema and experience an injury or infection, this could cause a case to occur suddenly.

Signs of lymphedema include:

  • Swelling in arms or legs (or any areas at risk).
  • Uncomfortable heaviness or fullness.
  • Tightness of skin when wearing clothes and jewelry.
  • Burning or itching sensation.
  • Noticeable thickening of the skin.

Early signs of lymphedema

These milder, early signs may happen before you can see any swelling:

  • Difficult to see or feel veins and tendons in your hands and feet.
  • Skin redness.
  • Your arm or leg appears to be of slightly different size.
  • Joints feel tight and inflexible.
  • Puffiness of the skin.

If you notice these symptoms, especially after cancer treatment, call your healthcare provider. Early treatment is important to keep swelling under control.

Last reviewed by a Cleveland Clinic medical professional on 06/15/2020.


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