Lymphedema is the swelling of the soft tissues caused by a build-up of lymph fluid. Depending on the type of surgery and other treatments a person has, it’s possible for lymphedema to occur in the arm, hand, breast, trunk, or abdomen. The swelling can be accompanied by pain, tightness, numbness, and sometimes infection.
Lymphedema can happen days, months, or years following breast cancer treatment and can be temporary or permanent.
To understand how lymphedema happens, it helps to understand how the lymphatic system works. The lymphatic system is part of your immune system and helps protect your body from infection and disease. This system consists of a large network of lymph nodes and lymph vessels located throughout the body. Lymph nodes are small, bean-shaped organs that trap unwanted substances and fight infection. Lymph vessels are tubes that circulate lymph, a clear fluid that is pushed through your body's tissues to cleanse them and keep them firm. The contractions of your muscles push the lymph fluid through the lymphatic system. The lymph nodes filter the lymph fluid, removing bacteria, viruses, cancer cells and other substances that could cause harm. The filtered lymph fluid is then returned to the bloodstream, and the unwanted substances are eliminated from the body.
Lymphedema can happen when lymph vessels or lymph nodes are removed or damaged. If there aren't enough nodes and vessels to drain the lymph fluid out of your arm, the fluid can build up in the spaces between the skin, fat, muscle, nerve, and connective tissue cells (known collectively as soft tissue).
Lymphedema can affect your whole arm or parts of your arm. Some people experience lymphedema only in the hand, or the hand and wrist area. It’s also possible to have lymphedema in the breast, trunk, and/or abdomen depending on what type of surgery and additional treatment you had. Some women who have had TRAM flap breast reconstruction (tissue moved from the abdomen to the breast area) experience lymphedema in the abdomen and/or the trunk.
Lymphedema usually develops gradually over time and the swelling can be mild, moderate, or severe.
Symptoms of arm lymphedema include:
- swelling and achy discomfort in the arm or hand
- a heavy feeling in the arm
- numbness in the arm or hand
- a tight feeling in the skin on the arm
- rings, watches, or bracelets seem to be too tight
- noticeably less ability to flex or move your arm, hand, or wrist
- signs of infection include fever, redness, warmth, and tenderness in the arm or other part of the body at risk for lymphedema
Breast cancer treatments that can cause lymphedema are:
- Surgery that removes lymph nodes. Removing lymph nodes under the arm means there are fewer nodes to filter the lymph fluid.
- Radiation therapy to the lymph node areas after lymph node removal surgery can increase the risk of arm lymphedema. The scar tissue that forms from radiation can cause blockages in lymph flow and make it harder for the body to build new lymphatic pathways.
- Steroids used in some chemotherapy regimens. Steroids can sometimes cause fluid retention. Sometimes this fluid retention affects the arm and the trunk, but this is usually temporary and resolves when treatment ends.
Lymphedema can develop very soon after surgery or radiation or it can develop months or even years after these treatments. People who have many lymph nodes removed during surgery may be at great risk of developing lymphedema.
Avoiding and managing lymphedema
If you've been diagnosed with lymphedema, there are treatments to reduce the swelling, keep it from getting worse, and reduce the risk of infection.
Lymphedema can be treated by a physical therapist or other healthcare professional who has special training. A lymphedema specialist is trained in techniques that can help reduce swelling and increase strength and flexibility. Your specialist should be able to create a program for you that includes massage of the affected area, physical therapy exercises, skin care, and if necessary, compression bandages and fitted sleeves. Check with your insurance company to make sure your lymphedema treatment is covered.
Reduce swelling after surgery. Right after surgery, the arm or breast area involved may swell. The swelling is usually temporary and usually goes away over the next 6 to 12 weeks. To help ease this swelling:
- Use your arm as you normally do as much as possible, including when styling your hair, washing, dressing, and eating.
- Start doing the exercises your doctor, nurse, or physical therapist showed you how to do. This may be 1 day to 1 week after surgery, depending on the instructions you were given. These exercises will help you regain your shoulder and arm range of motion. Range of motion usually returns in about 4 to 6 weeks.
- Lift the swollen arm higher than your heart for 45 minutes 2 or 3 times a day. Do this while you're lying down. Place your arm on pillows so your hand is higher than your wrist and your elbow is a little higher than your shoulder.
- Exercise your arm while it's higher than your heart by opening and closing your hand 15 to 25 times. Try to do this 3 or 4 times a day. This exercise helps push lymph fluid out of the arm through the lymph vessels that are still there.
Try to avoid infection and burns. If you have an infection or burn, your body makes extra fluid to fight it. If you've had lymph nodes removed, it can be harder for your body to transport this extra fluid and this can cause lymphedema. Taking good care of your skin and practicing good hygiene can help reduce your risk of lymphedema by avoiding infection or a burn.
- If possible, have blood drawn, injections, IVs, and vaccinations given in your unaffected arm. You also can have vaccinations or flu shots given in another area on your body, such as your hip. Tell your doctor or nurse that you're at risk for lymphedema.
- Moisturize your hands and cuticles regularly with lotion or cream. Push your cuticles back with a stick rather than cutting them with scissors. Avoid professional manicures.
- Keep your hand and arm clean, but don't use harsh soaps that can dry out your skin. Wash and protect any cuts, scrapes, insect bites or hangnails. Use antibacterial cream or ointment on any open cuts or sores and cove them with a bandage.
- Wear protective gloves when do you household chores such as washing dishes, general cleaning, or yard work.
- Use an electric shaver instead of a razor.
- Use insect repellents that won't dry out the skin. Avoid brands that contain a significant amount of alcohol. (Any ingredient that ends in "ol" is a type of alcohol.) If you're stung by a bee or wasp in the affected arm, clean the bite area, elevate your arm, apply ice and call your doctor if you think it might be infected.
- Use a thimble when you sew, to avoid pricking yourself.
- Protect your arm from sunburn with sunscreen. Use a product with a minimum SPF of 15.
- Wear oven mitts when handling hot foods.
- Avoid extreme hot to cold water temperature changes when you bathe or wash dishes.
- Don't use heating pads or hot compresses on the arm, neck, shoulder, or back on the affected side. Also, be cautious of other heat-producing treatments provided by physical, occupational, or massage therapists, such as ultrasound, whirlpool, fluidotherapy, or deep tissue massage. Heat and vigorous massage encourage the body to send extra fluid into the compromised area.
Try to avoid squeezing your arm. This can increase the pressure in nearby blood vessels, which can lead to swelling. Lymphedema also has been associated with air travel, possibly because of low cabin pressure.
- Avoid tight clothes and jewelry that restrain your movement.
- Don't carry heavy shoulder bags on the affected side.
- Don't carry heavy objects with your at-risk arm, especially with the arm hanging downward. Talk with your doctor or physical therapist about how to gradually increase the amount of weight you are able to lift. A physical therapist may start you on a weight-training program using 1 to 2 pound weights, slowly increasing the weight over time as your arm is able to handle it.
- Have your blood pressure taken on the unaffected arm. If both arms are affected, have your blood pressure taken on your thigh. Tell your healthcare provider that you're at risk for lymphedema.
- Use a light-weight breast prosthesis after mastectomy. Wear a loose-fitting bra so the straps don't dig into your shoulders.
- Talk to your doctor or physical therapist about whether you should be fitted for a compression sleeve to wear on airplane flights. Lymphedema specialists have different opinions about whether it's helpful or safe for a person who has never had lymphedema to wear a compression sleeve when flying. Some specialists feel that a compression sleeve will compromise the lymphatic system of someone who has had lymph nodes removed but who has never had swelling. But if you've already been diagnosed with lymphedema, your specialist may recommend that you be fitted for a sleeve to wear on long flights to reduce the risk of further swelling. If a sleeve is recommended, proper fitting is important. A sleeve that’s too tight can constrict the lymph flow too much. Since there is almost no research about the effects of air travel on people who have had lymph nodes removed, you and your doctor will need to decide what’s best for your situation. Much more esearch is needed before recommendations can be made about air travel and lymphedema.
Other tips to help avoid lymphema:
- Avoid alcohol. Alcohol causes blood vessels to expand and leak extra fluid into the tissues.
- Don't smoke. Smoking narrows the small blood vessels, making it harder for fluids to flow out of your arm.
- Mantain a healthy weight. Extra fat in the arm needs more blood vessels, which puts more fluid in the arm and makes more work for the lymph vessels that are still there. Some research has shown that gaining weight after mastectomy is linked to a higher risk of lymphedema.
- Control your blood sugars very carefully if you have diabetes to reduce the risk of blood vessel damage and infection.
- Take frequent breaks when you're doing vigorous or repetitive activities, especially if your arm feels tired, heavy, or achy.