Patient education: Lymphedema (The Basics)

What is lymphedema? — 

This is a buildup of fluid in part of the body, usually an arm or leg. Doctors also use the term "peripheral" lymphedema.

The body has a network of vessels called the "lymphatic system" that removes a clear fluid called "lymph" from the tissues (figure 1). The lymph nodes are part of this system. The lymphatic system is similar to the system of blood vessels. But instead of blood, the lymphatic system carries lymph, which also contains infection-fighting cells.

What causes lymphedema? — 

Lymphedema happens when the flow of lymph gets backed up. There are different types:

●"Primary" lymphedema – This is when the lymphatic system does not work correctly. Some people are born with this condition. Other times, the lymphatic system stops working normally, often during puberty.

●"Secondary" lymphedema – This is when something damages the lymphatic system. For example, cancer treatments like surgery or radiation can damage the lymph nodes or lymphatic vessels.

What are the symptoms of lymphedema? — 

The most common symptoms are:

●Swelling in a limb (arm or leg)

●Aching pain

●Tight or heavy feeling in the affected limb

●Trouble moving the affected limb

Some types of primary lymphedema first show up during puberty or in adulthood. If lymphedema happens after cancer treatment, symptoms might not start until weeks, months, or even years later.

Is there a test for lymphedema? — 

Yes, but it is usually not needed. Your doctor or nurse can figure out if you have lymphedema by talking to you about your symptoms and doing an exam.

An important part of the exam is to measure the length around the affected limb. This measurement is called "limb circumference." Your doctor or nurse will do this in several places along your limb. Using limb circumference, they can estimate how much fluid has built up in the limb. Some doctors also do other tests to more directly measure the amount of fluid.

Your doctor might suggest doing an imaging test to look at your lymphatic vessels. (Imaging tests create pictures of the inside of the body.) This can help them figure out if your symptoms are lymphedema or something else. Imaging is also done before having surgery to treat lymphedema.

How is lymphedema treated? — 

There is no cure. But there are treatments that can help reduce the swelling and make you more comfortable. These work best if you start them before the swelling has gotten too bad, so see a doctor or nurse as soon as you notice any swelling. It is best to go to clinics that have people with experience treating lymphedema.

Treatments can include:

●Exercise – This can help keep lymphedema from getting worse. During exercise, you should always wear a compression bandage or garment (see below).

●Compression bandaging – This is a special kind of bandaging that your doctor or nurse can put on. It puts gentle, steady pressure on the swollen area. This helps keep the swelling down.

●Compression garments – These are special sleeves or stockings that you wear. They work a lot like compression bandaging. They put gentle, steady pressure on the affected limb to keep swelling down.

●Manual lymphatic drainage – A physical therapist massages your limb in a special way to help move the fluid that has built up.

●Surgery – If you have severe lymphedema, your doctor might suggest surgery. Procedures called "lymph bypass" and "lymph node transfer" can improve the flow of lymph. Sometimes, surgeons remove the extra tissue to make the limb smaller.

●Emotional support – Having lymphedema might make you feel sad or anxious. If you are struggling to cope, tell your doctor or nurse. They can help you get support.

What can I do on my own? — 

It is very important to avoid injury or infections of your affected limb. There are also other things you can do that might help reduce the swelling.

To avoid injury:

●Keep your skin clean. Wash with a mild soap every day.

●Be careful with your nails. Don't pick at the skin around your nails or cut your cuticles.

●Use lotion to keep your skin from getting dry and cracked.

●Use an electric razor instead of a razor blade to shave.

●Always use sunscreen when you go outside.

●If your arm is affected, wear gloves when gardening, cooking, or doing other things that could hurt your skin.

●If your leg is affected, wear hard-soled shoes when outside.

●If you do get a small cut, scrape, or bite on your arm, hand, leg, or foot, clean it well with soap and water. Then, use an antibiotic ointment. Call your doctor or nurse if it does not heal quickly or if you have signs of an infection.

●When possible, avoid shots, blood draws, or IV lines in the limb with lymphedema. Avoid other procedures that puncture the skin, like acupuncture or tattooing.

●If you have lymphedema in an arm, avoid routinely having your blood pressure taken on that side.

●Avoid saunas, steam baths, and hot tubs.

To help reduce the swelling:

●Wear loose-fitting clothes and jewelry, unless it is a special garment or bandage your doctor or nurse gives you.

●Try to keep a healthy body weight.

●Do not let your arm hang at your side for long periods of time without moving it. If your leg is affected, avoid standing for long periods of time.

●Keep your limb raised on pillows when you are sitting or lying down.

Can lymphedema be prevented? — 

It depends. Primary lymphedema cannot be prevented. But it might sometimes be possible to lower the risk of secondary lymphedema:

●If you have breast cancer, a surgeon might need to remove lymph nodes from your armpit area to check if the cancer has spread. In most cases, they can remove only a few lymph nodes. But sometimes they need to remove more, which can increase the risk of getting arm lymphedema later.

●If you have melanoma (a type of skin cancer), a surgeon might need to remove lymph nodes from your groin area. This can increase the risk of leg lymphedema. Doctors can lower this risk by only removing 1 or a few lymph nodes.

Secondary lymphedema cannot always be prevented. But if you treat it early, you might be able to keep it from becoming too severe.

When should I call the doctor? — 

Call your doctor or nurse if:

●You have increased swelling.

●You have redness (red patches or streaks) or a rash.

●The affected limb feels warm to the touch.

●You have a temperature higher than 100.4°F (38°C) that is not from a cold or other illness.

More on this topic

Patient education: Sentinel lymph node biopsy for breast cancer (The Basics)
Patient education: Intermittent pneumatic compression devices (The Basics)
Patient education: How to put on and take off compression stockings (The Basics)

Patient education: Lymphedema after cancer surgery (Beyond the Basics)