Lymphedema – Causes, Signs and symptoms

Lymphedema

Reviewed By:
Mark Oren, M.D., FACP

Summary

Lymphedema is swelling due to excess lymph fluid. In cancer patients, it may occur in an area where lymph nodes were surgically removed or treated with radiation therapy. In other cases, infection or the cancer itself may trigger the condition. Lymphedema most often develops in an arm or leg and can be progressive.

The lymphatic system is an important part of the immune defense system. It produces and stores some of the cells needed by the body to fight infections and diseases, such as cancer. The lymphatic system also extracts lymph fluids from tissues and returns it to the blood stream. Lymph fluid consists of white blood cells, plasma and other substances. The lymphatic system includes:

  • Lymph nodes (small, bean-shaped organs that produce immune cells and filter bacteria).

  • Lymph vessels (tubes or canals that collect excess lymph from the tissues and carry it back to the blood).

When the lymphatic system is obstructed, the excess lymph remains in the body tissues and causes swelling. Although lymphedema cannot be cured, he condition often can be controlled.

Lymphedema may be categorized as primary or secondary. Primary lymphedema is a rare inherited condition in which the lymph nodes or lymph vessels are missing or are not working properly. Secondary lymphedema is more common. It can develop as a result of cancer, infection or scar tissue from radiation therapy or surgical removal of lymph nodes. Surgical removal of lymph nodes or lymph vessels makes it harder for lymph fluid to flow to other parts of the body. This can cause the fluid to build up, resulting in swelling. Scar tissue from lymph node removal or radiation therapy can also cause blockage of the lymphatic system, thereby increasing the risk for lymphedema.

While most patients who have been treated for cancer will not develop lymphedema, many others will develop this condition. It can occur after surgery or radiation therapy for any type of cancer, but is most common in patients treated for breast cancer. It also may develop with prostate cancer, pelvic area cancers, lymphoma and melanoma. According to the American Cancer Society (ACS), approximately 10 to 30 percent of women and 10 to 12 percent of men who have underarm (axillary) lymph nodes removed develop lymphedema.

Depending on the type of lymphedema, it can develop a few days or many years after surgery or cancer treatment. Symptoms include redness, swelling and sensations of heat in the affected area. If patients notice signs or symptoms of lymphedema for one to two weeks, they should notify their physician. The earlier the condition is diagnosed the earlier treatment may begin. Lymphedema is usually treated with physical methods, such as massage or physical therapy, as well as medication.

Although experts do not understand what makes some patients more likely to develop lymphedema than others, there are certain preventative methods that may reduce a person’s risk. These include avoiding infections, burns and injuries to the affected area, muscle strain and avoiding constriction of the area.

Patients with lymphedema often suffer emotional and psychological problems because the disorder is disfiguring, and in some cases painful and disabling. Individual counseling and support groups are available to patients suffering from these psychological problems.

About lymphedema

Lymphedema is a condition that can occur when the lymphatic system is obstructed. When lymph vessels are blocked, it can cause a buildup of lymph fluid in the fatty tissues just below the skin. This buildup causes swelling, usually in an arm or leg. It is a common complication of cancer and cancer treatment.

Lymphedema is not the same as edema or swelling that may result from venous insufficiency, a condition in which blood is not efficiently returned from the lower limbs to the heart. Although both of these conditions cause swelling, they occur in different systems: edema in the circulatory system, lymphedema in the lymphatic system. 

The lymphatic system consists of organs, nodes and vessels that are responsible for draining a fluid called lymph and returning it to the blood stream. Lymph is made of white blood cells, plasma and other substances. Lymph fluid continually leaks out of the thin walls of the capillaries into surrounding body tissues where its proteins, minerals and nutrients provide nourishment to the tissues. Without this process, the excess lymph remains in the body tissues and can cause swelling.

A major component of the immune system, the lymphatic system also defends the body from foreign material by producing and storing cells needed by the body to fight infections and disease. Lymph nodes are small, bean-shaped organs clustered in various areas of the body, including the neck, armpit, chest and groin.

There are two types of lymphedema – primary and secondary. Primary lymphedema is a rare inherited condition in which the lymph nodes or lymph vessels are missing or are not working properly. Secondary lymphedema is more common. It can develop as a result of cancer, infection or scar tissue from radiation therapy or surgical removal of lymph nodes.

During surgery for cancer, a surgeon may remove some of the lymph nodes located near the tumor for testing to determine if the cancer has spread. In some cases, lymph vessels may also require removal because they are wrapped around the lymph nodes. Removing lymph nodes and lymph vessels makes it harder for lymph fluid to flow to other parts of the body. When the remaining lymph vessels fail to remove enough of the excess lymph in the area, the fluid can build up and cause swelling. Radiation therapy can also reduce the circulation of lymph, therefore increasing the risk for lymphedema.

Most patients who have been treated for cancer will not develop lymphedema, but it can occur after surgery or radiation therapy for any type of cancer. It most commonly occurs in patients with:

  • Breast cancer
  • Prostate cancer
  • Pelvic area cancers
  • Lymphoma
  • Melanoma

According to the American Cancer Society (ACS), approximately 10 to 30 percent of women and 10 to 12 percent of men who have underarm (axillary) lymph nodes removed develop lymphedema.

In addition, lymphedema may have a psychological effect on patients with the condition. It can serve as a continual reminder of their cancer and their battle for survival. Many individuals are embarrassed about the appearance of lymphedema and become self-conscious in public.

Patients who have had multiple lymph nodes removed and patients who have had radiation therapy to lymph node bearing areas may have a higher risk of developing lymphedema. However, physicians do not fully understand what makes one person more susceptible to lymph fluid build up than others.

Types and differences of lymphedema

There are several types of lymphedema that can develop in an individual. The most common form develops gradually, but it may appear 18 to 24 months after surgery. In this form, the swelling can be mild or severe. Patients with this type of lymphedema may experience skin discomfort, aches in the neck, shoulders, spine or hips, and changes in posture.

Swelling may develop a few days after radiation therapy or surgical removal of lymph nodes. This type of lymphedema is usually mild. The affected limb may feel warm and look slightly red, but the patient is usually not in pain. This form usually disappears within one to two weeks without medical intervention.

Some lymphedema can develop six to eight weeks after surgery or during the course of radiation therapy. This form may be triggered by inflammation of either the lymph vessels or veins.

Another type of lymphedema is one that develops after an insect bite, minor injury or burn. These injuries may cause an infection of the skin and the lymph vessels near the skin’s surface.

Risk factors for lymphedema

A number of factors that may make a person more likely to develop lymphedema have been identified. These risk factors include:

  • Having lymph nodes surgically removed from the underarm, groin or pelvic area.
  • Receiving radiation therapy to the underarm, groin, pelvic or neck areas.
  • Developing scar tissue in the lymphatic ducts or veins and under the collarbone due to surgery or radiation therapy.
  • Having cancer that has spread to the lymph nodes in the neck, chest, underarm, pelvis or abdomen.
  • Having tumors growing in the pelvis or abdomen that involve or place pressure on the lymph vessels and/or the large lymphatic duct in the chest and block the drainage of lymph.
  • Being overweight or having a poor diet. These factors may delay a patient’s recovery and increase the risk for developing lymphedema.  

Signs and symptoms of lymphedema

Common signs and symptoms of lymphedema include:

  • Swelling in an arm or leg.
  • A full, heavy or tight sensation in an arm or leg.
  • Decreased movement or flexibility in a hand, wrist or ankle.
  • Difficulty fitting into clothing in one specific area, such as socks or the sleeve of a jacket.
  • A tight-feeling watch, ring or bracelet not caused by weight gain.
  • Weakness in an arm or leg.
  • Pain or aching in an arm or leg.
  • Redness in an arm or leg.
  • Signs of infection, including a rash, red blotches or a fever:

Patients who have had lymph nodes removed or received radiation treatment as part of their cancer treatment are encouraged to look for these signs and symptoms. If any of the signs or symptoms of lymphedema are noticed, and they last for one to two weeks, patients should notify their physician. The earlier lymphedema is diagnosed, the earlier treatment may begin and fewer complications may occur.

Potential causes of lymphedema

Lymphedema can be classified as temporary or chronic. Temporary lymphedema lasts less than six months. Potential causes of temporary lymphedema include:

  • A surgical drain that leaks protein-rich fluid into the tissue at a surgical site
  • Inflammation
  • An inability to move a limb
  • A temporary loss of lymphatic function such as with an infection
  • A blocked vein caused by a blood clot or inflammation
  • Injury that damages lymph nodes or lymph vessels

Chronic lymphedema is a long-term condition. Potential causes of chronic lymphedema include:

  • Radiation therapy
  • Surgical removal of the lymph nodes and lymph vessels
  • A recurrence or spread of a tumor to the lymph nodes
  • An infection of and/or injury to the lymph vessels
  • Not being able to move the limbs for a period of time
  • A failure to control the early signs of lymphedema
  • A blocked vein caused by a blood clot

Treatment options for lymphedema

In order to plan treatment and monitor the effectiveness of treatment, healthcare professionals often classify the lymphedema by its severity. The stages of lymphedema include:

  • Stage 1.
    • The lymphedema is mild.

    • The affected area is close to normal size at the time the patient wakes in the morning.

    • The patient’s tissue remains in a “pitting stage,” meaning when pressed with a finger the affected area indents and holds the impression.

  • Stage 2.
    • The lymphedema is moderate.

    • The patient’s tissue is “non–pitting,” meaning when pressed with a finger the affected area bounces back without leaving an indentation.

    • The tissue has a “spongy” consistency.

  • Stage 3.
    • The lymphedema is severe.

    • The patient’s tissue is unresponsive to touch.

    • The tissue is hard (fibrotic).

    • The affected limb is extremely large and swollen. 

    • The swelling is irreversible.

    • Risk of infection is greatest at this stage.

There is no cure for lymphedema once it has started in the body. Since it is a progressive condition, patients are continually faced with the challenge of seeking treatments that may help the symptoms of the condition. Treatment for lymphedema focuses on reducing swelling and other symptoms, preventing the condition from getting worse, and limiting the patient’s risk of infection. It is treated with physical methods as well as medication. Physical methods used to treat lymphedema include:

  • Elevating the limb above the level of the patient’s heart. This can be done while lying down for 45 minutes, two or three times a day. If the arm is affected, the patient may place the arm on pillows so that the hand is higher than the wrist, and the elbow is slightly higher than the shoulder.

  • Moderate exercise. While the arm is elevated, the patient can also reduce swelling by opening and closing the hand 15 to 25 times. When repeated three to four times a day, this exercise promotes the pumping of lymph fluid out of the affected limb.

  • Manual lymphatic drainage. This treatment method involves a specialized form of light massage that promotes the movement of fluid from the end of the limb toward the trunk of the body. It is usually performed by a physical or occupational therapist or other healthcare worker trained in this technique.

  • Wearing compression garments. Compression garments are custom-fitted sleeves or stockings worn to apply controlled pressure around the affected limb. Covering the entire affected area, the garments should be measured and fitted by a certified therapist. They may be worn continuously throughout the day and should especially be worn during exercise, physical activity and air travel.

  • Pneumatic compression devices. Also known as pumps, these devices have a sleeve that wraps around the limb. The sleeve, which is attached to a pump, either applies uniform pressure or is inflated and deflated over timed intervals. These actions promote the movement of fluid throughout the lymph vessels and veins to keep fluid from collecting in the limb.

  • Maintaining proper skin care. Carefully cleaning and moisturizing the skin can prevent infection.

Lymphedema may be treated with a combination of therapies. Known as complex decongestive therapy (CDT), or complex physical therapy, this method involves massage, special bandaging, individualized exercises, fitting for a compression garment and skin care followed by a maintenance program. CDT is usually prescribed by a physician and should be provided by an experienced physical therapist or other healthcare professional who has received special training.

Medications used to treat lymphedema include:

  • Antibiotics. These drugs may be prescribed to treat infections.

  • Anticoagulants. Although these drugs are generally not helpful in treating lymphedema, and may make the condition worse, they may be prescribed to treat blood clots when they are discovered. Blood clots must be treated aggressively because lymphedema treatments, including massage, can cause the blood clots to move toward the heart or lungs causing serious complications.

  • Anti-inflammatory drugs. These drugs may be prescribed to reduce inflammation in the affected area.

In addition, patients may also receive treatments to relieve pain caused by the condition. Medications, relaxation techniques and/or transcutaneous electrical nerve stimulation (TENS) may be used to treat the pain. A physician may make dietary recommendations, such as a diet high in protein-rich foods or reduced sodium intake. The patient’s blood protein levels and weight may also be monitored regularly as part of dietary management.

Because lymphedema can be disfiguring, painful and disabling, patients may also require psychological counseling to address any mental, physical or sexual problems. Group and individual counseling may offer patients information on preventing lymphedema, the role of diet and exercise, advice for choosing comfortable and flattering clothing and emotional support.

Prevention methods for lymphedema

Lymphedema is a progressive condition that has no known cure. For that reason, prevention of the condition is very important. Although most treatment methods have not been scientifically proven, experts recommend a variety of methods to lower the risk of lymphedema or delay the onset of the condition. These include:

  • Keeping the affected limb raised above the level of the heart whenever possible.

  • Avoiding infections, burns and injuries to the affected area. The body responds to these conditions by producing additional fluid. Burns and injuries can also trigger infection. In patients who have had removal of or damage to the lymph nodes and lymph vessels, the body is less able to remove the excess fluid. As a result, lymphedema may develop. Patients who are at risk for lymphedema should take steps to avoid injury and infection, including:

    • Keeping the affected limb clean and dry. The skin of the affected limb should be cleaned daily.

    • Always drying the areas in between the toes after bathing.

    • Regularly applying lotion or cream to hands, feet and cuticles to keep these areas soft and moist.

    • Using a cuticle stick to push back cuticles instead of cutting them with a scissors.

    • Cleaning and covering any openings in the skin caused by cuts, insect bites, hangnails or torn cuticles by rinsing them with soap and water. Once clean, the openings should be treated with an over-the-counter antibacterial cream and covered with a sterile bandage. 

    • Applying cold water to a burn for 15 minutes and then rinsing the burn with soap and water. Once clean, a dry, sterile dressing should be applied.

    • Using an electric shaver to remove unwanted underarm and leg hair. Electric razors are less likely to injure the skin than straight razors or hair removal creams.

    • Using an insect repellent during outdoor activities to avoid insect bites.

    • Treating bee stings to the affected limb by washing, applying ice and elevating the limb. Patients should contact their physician if the site of the sting becomes infected.

    • Avoiding activities that irritate or chap the skin.

    • When having blood drawn or receiving medications, intravenous lines and injections should be given in the unaffected arm when possible. In addition, patients should have blood pressure measured from the unaffected arm to avoid constriction. Patients should inform their health care team that they are at risk for lymphedema.

    • Wearing protective gloves when performing household chores involving chemical cleansers or steel wool. Gloves should also be worn during gardening, yard work and washing dishes.

    • Using a thimble when sewing to prevent needle and pin pricks.

    • Wearing properly fitting, closed shoes instead of sandals or slippers.

    • Not going barefoot. The patient’s feet should always be covered when they are outdoors, and the patient should always wear cotton socks.

    • Seeing a podiatrist when necessary to prevent ingrown toenails and infections.

    • Avoiding ice packs and other sources of extreme cold. 

    Patients should contact their physician immediately if they suspect an infection in the affected limb. Signs of infection include rash, red blotches, swelling, a sensation of heat, tenderness or fever (100.5 degrees Fahrenheit [38 degrees Celsius] or higher).

    Steps to avoid burns include:
     
    • Using sunscreen labeled “SPF 15” or higher to prevent sunburn on the affected limb and avoiding the sun during the hottest part of the day.

    • Using oven mitts when cooking.

    • Avoiding splash burns when frying oil and steam burns when microwaving foods or boiling liquids.

    • Avoiding hot tubs, saunas, heating pads and other sources of excessive heat.

    • Testing the temperature of bath water with an unaffected limb. This is necessary because affected limbs may not accurately detect water temperature.

    Patients should avoid pressure or constriction on the affected limb. This may increase the pressure in neighboring blood vessels, which can increase the fluid level and result in swelling. Steps to avoid constriction and pressure include:

    • Wearing loose jewelry, clothing and gloves.

    • Not using shoulder straps to carry purses and briefcases.

    • Wearing bras with loose-fitting shoulder straps. 

    • Using a lightweight prosthesis after a mastectomy.

    • Having blood pressure taken on the unaffected arm. If both arms are affected, blood pressure should be taken on the thigh.

    • Not wearing socks, stockings or undergarments with tight elastic bands.

    • Wearing a compression stocking on the affected leg when walking around.

    • Not crossing legs or arms or sitting in the same position for longer than 30 minutes.

    • Not sitting in the same position for longer than 30 minutes.  

  • Taking special precautions during air travel when flying frequently or during a long flight. Air travel can trigger lymphedema, possibly due to the low cabin pressure. Steps to avoid lymphedema when flying include:

    • Wearing a compression sleeve or stocking on the affected limb.

    • Keeping the affected limb elevated above the level of the heart during travel.

    • Frequently flexing (bending) the limb during the flight.

  • Maintaining normal use while avoiding muscle strain. Avoiding muscle strain and overuse of the affected limb may prevent lymphedema in some patients. However, maintaining normal use of the limb is essential for proper healing and regaining strength in the limb. Moderate exercise is also an important factor. Steps to avoid muscle strain and overuse of the affected limb include:

    • Using the affected limb as normally as possible. Patients should continue to use their limb for normal everyday activities such as bathing, dressing, eating and brushing their hair once they are fully healed (approximately four to six weeks after surgery or radiation treatment).

    • Exercising regularly. Exercise promotes the draining of lymph fluid from the limbs, however patients should avoid overtiring their limb. Following surgery or radiation therapy, patients should discuss exercise with their physician to determine what activities and level of exercise are appropriate.

    • Discussing compression sleeves or stockings with a physical therapist or physician. Patients should ask their physician or physical therapist if they should be fitted for a compression sleeve or stocking to wear during exercise or other strenuous activities.

    • Not making rapid circles with the affected limb. This can result in blood collecting in the lower part of the limb.

    • Treating an aching limb by lying down and elevating it.

    • Avoiding vigorous, repeated activities, heavy lifting and pulling.

    • Using the unaffected arm as often as possible to carry heavy packages, such as groceries, handbags and children.

  • Avoiding weight gain. Having excess fat in the limbs requires more blood vessels, creates additional fluid in the limb and places greater strain on the remaining lymph vessels.

Questions for your doctor about lymphedema

Preparing questions in advance can help patients have more meaningful discussions with their physicians regarding their conditions. Patients may wish to ask their doctor the following questions about lymphedema:

  1. Am I at risk for lymphedema?
  2. What is the likely cause for my lymphedema?
  3. If I have breast cancer surgery, how can I prevent lymphedema?
  4. What are the warning signs of lymphedema?
  5. How soon after surgery can I experience lymphedema?
  6. How can I determine if my lymphedema is temporary or permanent?
  7. What are the greatest concerns for me with this condition?
  8. What are my treatment options for this condition?
  9. Are there any medications or diet modifications that can help my condition?
  10. What are the restrictions with lymphedema?
  11. Am I at greater risk for infection if I have lymphedema?
  12. Can you refer me to a lymphedema support group?
Scroll to Top