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.
Symptoms and Causes
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.
Diagnosis and Tests
How is lymphedema diagnosed and tested?
If you notice any signs of swelling after cancer surgery that involved lymph node removal, contact your healthcare provider right away. At your visit, your provider will do a physical exam to check for swelling.
You may be asked to do imaging tests, which are non-invasive (not surgical). These can help find problems with your lymphatic system. Imaging tests may include:
- Lymphoscintigraphy tests for lymphatic system abnormalities in the lymph flow or structure. You’re injected with a very small amount of radioactive substance called a radiotracer that travels through the area being tested. A special camera and computer above you create images inside your body that show any problems in the lymphatic system. The procedure is painless (though you may feel a prick with the injection) and side effects are minimum. The radioactive material will pass through your system through your urine.
- Doppler ultrasound looks at blood flow and pressure by bouncing high-frequency sound waves (ultrasound) off red blood cells. It can help find obstructions and rule out other possible causes of swelling, like blood clots.
- MRI (magnetic resonance imaging) uses a magnet, radio waves and a computer to make a series of detailed 3-D pictures inside your body. It can display an exact picture of the extra fluid in your tissues.
- CT (computed tomography scan) uses X-rays to show detailed, cross-sectional images of your body's structures. CT scans also show blockages in the lymphatic systems. Both CTs and MRIs display the size and numbers of lymph nodes which help determine the type of a primary lymphedema.
- Bioimpedance spectroscopy is a noninvasive test that measures a patient's total body water, extracellular and intracellular. Many clinics use this test for patients at risk for lymphedema, with regular, routine assessments taken to check for any changes in volumes. It’s been shown to be able to detect lymphedema before there are any visible signs of swelling.
- Indocyanine green lymphography (ICG) is a colored dye injected under the skin and taken up by the lymphatics. A special infra-red camera maps out lymphatic function. Lymphography is an imaging technique which allows for visualization of the superficial lymph flow.
Management and Treatment
How do I treat my lymphedema?
Treatments vary, depending on the stage and cause of the condition. Physical treatment is the standard, though antibiotics may be prescribed for infections. Antibiotics used for treating these infections can include penicillin (amoxicillin) or, in case of penicillin allergy, clindamycin or clarithromycin. Diuretics (water pills) don’t play a major role in treatment of lymphedema.
Can lymphedema be cured?
As of now a cure for lymphedema has not been found, however symptoms such as swelling, pain and discomfort can be improved with proper management and treatment.
Can painkillers relieve lymphedema pain?
The most effective treatment for lymphedema pain is to reduce swelling. Usually this helps to ease some of your discomfort. Because everyone is different, your provider can advise you on use of non-steroidal anti-inflammatory drugs (NSAIDs), like aspirin, ibuprofen and naproxen, or non-NSAIDs like acetaminophen. The prescription NSAID ketoprofen has shown promise in some patients in reducing pain and swelling.
Lymphedema treatments and therapy
Your providers may send you to a lymphedema therapist. These trained specialists can get you started on the best ways to keep swelling under control.
The most common treatments include:
- Compression garments: Compression sleeves and stockings for the arms and legs relieve swelling. Compression pushes the fluid back into circulation by increasing the rate that the lymphatic fluid is filtered out of the soft tissue. Compression also gives you external containment which prevents and helps control swelling.Other compression garments are designed for different areas of the body where swelling occurs. These can be fit to your needs.
- Multi-layer compression bandaging: Short stretch bandages helps reduce swelling to soft tissue. They’re applied with levels of pressure to help re-route fluid from the swollen areas. Once the lymph fluid is moved out of a swollen limb, it’s a good time to wear compression garments to prevent swelling from returning.
- Compression devices: A pneumatic compression pump connects to a sleeve which is wrapped around the arm, leg, chest, genitals, head and neck. The sleeve is inflated and deflated on a cycle. This on-and-off pressure gets fluid moving through lymph vessels and veins and keeps it from building up in the arm or leg. Compression pumps have also been shown to reduce risk of infection.
- Manual lymphatic drainage (MLD): A very light form of massage involves gentle skin stretch on soft tissues completed by a therapist. Lymph from the swollen area is gently transferred into an area with working lymph vessels. Patients can be taught to perform MLD on themselves.
- Exercise: Physical exercise as well as decongestive exercise are important to stimulate lymphatic drainage. The muscle pump contraction filters out lymphatic fluid, and the decongestive exercises help to stimulate the lymphatic system to take up the fluid.
- Complete decongestive therapy (CDT): CDT combines compression, manual lymphatic drainage, meticulous skin care and exercise. Depending on the severity, this type of lymphedema treatment can last from two weeks to several months.
Surgical treatments for lymphedema
Surgery is considered if other nonsurgical treatments aren’t working. Not everyone is a candidate for surgery, but for some people symptoms can be eased with a surgical procedure.
- Lymphatic bypass procedure: Lymphatic vessels and veins are connected and re-routed around obstructions so that the lymph fluid can drain directly into the body's venous system. Advances in surgical techniques are now reducing risks and creating less-invasive procedures.
- Lymph node transfer: Lymph nodes from other parts of the body are placed into areas where there has been impairment to the lymphatic system. This procedure helps restore a healthy lymphatic system to that region.
- Liposuction: Liposuction is a treatment where fat and other tissues are removed through a small incision in your body.
- Debulking: Involves removing all of the skin, fat and tissue of the affected area and then placing a skin graft over this region. Only used in very advanced, severe cases.
Are compression garments and pumps used for lymphedema covered by Medicare?
Generally, compression sleeves and stockings for lymphedema aren’t covered by Medicare. A home compression pump will be covered if compression garments aren’t working well. If you have a secondary insurance to Medicare, they may cover compression garments and pumps as well. Talk to your provider about all your payment options with lymphedema therapy.
How do I manage lymphedema?
While there’s no cure for lymphedema, lifestyle changes can help control your discomfort and reduce swelling. Exercising, practicing good hygiene, wearing the right clothing and eating healthy can all help you feel better and more in control of your condition.
General guidelines for exercise
Exercise is one of the best ways to keep fluid moving within your body. Always check with your provider before starting a new exercise program. Your therapist may have special exercises for you depending on the stage of your condition.
- Avoid strenuous exercises involving the affected limb unless you have been given clearance. You’ll get specific instructions about the activities that are safe for you.
- To improve cardiovascular fitness, try aerobic activities, like walking, swimming, low-impact aerobics or specially prescribed exercises. Aim for 20 to 30 minutes most days of the week.
- Include a five-minute warm-up, including stretching exercises, before any aerobic activity and include a 5- to 10-minute cool down after the activity.
- If your normal exercise routine includes weightlifting with your arms or even strength training with your legs, check with your doctor or therapist about the best time to resume this activity and ask if there are any weight or movement restrictions.
Stop exercise if it’s causing pain and discuss this with your provider. If your affected arm or leg becomes tired during the exercise, cool down, rest and elevate it. As you resume exercise you want to make sure you slowly increase frequency and duration to allow your body time to adjust.
Avoid infections by practicing good hygiene and skin care
- Keep your skin meticulously clean. Dry your skin thoroughly (including creases and between fingers and toes). Apply lotion to surrounding skin, but not in between your toes.
- Frequently wash your hands with soap and warm water, especially before preparing food, and after using the bathroom or after touching soiled linens or clothes.
- Wear gloves while doing housework or gardening.
- Avoid cutting your cuticles when manicuring your nails. Use care when cutting your toenails. Treat athlete’s foot with antifungal powder.
- Protect your skin from scratches, sores, burns and other irritations that might lead to infection.
- Use insect repellents to prevent bug bites.
- Always wear sun protection (SPF 30 or higher) when going outside.
- Immediately report any signs of infection to your provider.
- Treat minor injuries immediately: Wash the area with soap and water, then apply antibiotic ointment. Once cleaned, cover the area with a bandage and call your healthcare provider.
Avoid tight clothing, shoes or jewelry. Wear loose clothing that won’t restrict movement of your arms and legs. Wear comfortable, closed-toe shoes and avoid tight hosiery and socks. If you have to wear watches or jewelry, be sure they’re worn loosely on the affected arm.
Sit properly. To keep fluid flowing in your legs, try practicing a good posture by keeping your feet flat on the floor and avoid crossing your legs. Try not to sit longer than 30 minutes.
Consider wearing compression garments if traveling by plane. If you plan to fly in the near future, ask your provider if you should wear a compression garment on your affected arm or leg to minimize swelling. For long flights, you may need to bring additional bandages.
Be careful at medical checkups and blood draws. Ask to have your blood pressure checked on the unaffected arm. Avoid injections, IV lines or blood draws on the affected side when possible.
Swelling is better controlled with good nutritional habits. Your lymph systems works more effectively with better nutrients taken from minimally processed, natural foods (fruits, veggies, whole grains). Healthy eating keeps you closer to your ideal weight, an important factor in reducing symptoms. And it makes you feel better overall.
- Reduce foods high in salt and fat.
- Include at least 2 to 4 servings of fruits and 3 to 5 servings of vegetables in your daily meal plan.
- Eat a variety of foods to get all the nutrients you need.
- Use package label information to help you to make the best selections for a healthy lifestyle.
- Eat foods high in fiber such as whole-grain breads, cereals, pasta, rice, fresh fruits and vegetables.
- Drink plenty of water -- eight 8-ounce glasses of water are recommended per day.
- Maintain your ideal body weight. A registered dietitian or your provider can help calculate your ideal body weight for this situation, and you can measure your BMI.
- Avoid alcoholic beverages.
Can lymphedema be prevented?
There is no sure way to prevent all cases of lymphedema. But symptoms can be caught early and minimized. No matter the type or cause of your lymphedema, you can take steps to reduce or even prevent swelling.
If you’ve had breast cancer surgery:
- If you’re worried about developing lymphedema, talk to your surgeon and healthcare team about ways to head off symptoms early. For example, recent studies show resistance exercises for your arms (working with resistance bands, light weights, push-ups) may prevent symptoms.
- Soon after treatment, talk to your provider about having your arms measured at certain time intervals to check for changes in size. These checks can be done before you can see or feel any difference with swelling. Spotting changes early can help you get started on treatment right away.
Other ways to prevent symptoms:
- Keep your affected arm or leg elevated above heart level when you can.
- Move around as much as possible to keep fluid moving.
- Avoid exposing extreme hot or cold temperatures to your affected limbs. If you’ve had radiation therapy, don’t apply ice or heat to your arm or leg. This increases your risk of lymphedema.
- Protect the affected areas from sharp objects; wear protective clothes. Don’t walk barefoot outside, or garden without your gloves.
- Use electric shavers instead of scissors or razors to remove hair. Replace the shaver heads frequently.
- As always, wear loose, comfortable clothing you can move around in.
Outlook / Prognosis
What is the outlook for lymphedema?
Though lymphedema isn’t generally life-threatening, it’s a life-long condition. Controlling swelling and preventing infection in swollen areas is essential to good health. With the help of lymphedema specialists you can better manage your symptoms.
Is lymphedema dangerous or fatal?
If you don’t treat lymphedema it can become dangerous to your health. If swelling becomes unmanageable you’ll be more likely to get infections and other complications. Every infection can weaken your immune system and make you more vulnerable to life-threatening illnesses.
Chronic and untreated lymphedema can also lead to the fatal condition lyphangiosarcoma. Though very rare, this soft tissue cancer (also called Steward-Treves syndrome) can occur in women after double mastectomy. Signs of this condition are blue-red or purple markings on the skin that become ulcers and spread quickly.
Other causes of lyphangiosarcoma include primary congenital lymphedema, trauma or filarial lymphedema (a type rare in the U.S.).
A note from Cleveland Clinic
Many people with lymphedema have mild cases and cope with it well. Swelling in the legs, arms or other areas can be minor, barely noticeable. Keeping up with proper management and treatments such as regular exercise and eating well can help keep symptoms at a minimum.
But what if your symptoms are severe? Moving around freely with swollen legs and arms, doing normal activities and even dressing yourself are next to impossible. You’re constantly on the lookout to avoid infections that can happen through even the slightest injuries to the affected areas.
Lymphedema is a serious side effect to cancer treatment that can take a toll on your spirits and self-esteem, and even lead to depression. It’s a tough condition. But you can take steps to control your symptoms and make living with it easier.
If you’re hurting physically or emotionally, please reach out to your therapist or healthcare provider. They can give you the help you need or point you in the right direction to find it.