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Living with lymphedema

Author: Mia James

If you have been prescribed treatment for cancer that involves radiation or surgery that could affect your lymph nodes, you may be at risk for lymphedema. Lymphedema is a buildup of lymph fluid in the tissues just under the skin, which causes swelling in affected areas. Though this is an unwelcome and bothersome side effect, there is a lot you can do to manage lymphedema; established rehabilitation practices and support from specialists can help control swelling and pain, preserve range of motion and keep you feeling well.

What is lymphedema?

Lymphedema swelling, which often affects the arm or leg, is caused when extra lymph fluid builds up in tissues because lymph vessels are blocked, damaged or removed by surgery. Lymph nodes—part of the lymph system—are small collections of tissue that work as filters for harmful substances and help fight infection.

Benita Stevens, an Oncology Rehabilitation Specialist at Cancer Treatment Centers of America (CTCA) in Philadelphia, Pennsylvania, and a Certified Lymphedema Therapist, says that in addition to arms and legs, lymphedema can also affect the chest, breasts and genitals. “It’s caused when the lymphatic system is compromised by lymph node removal or radiation near or around lymph nodes [for cancer treatment],” she says. This may cause trauma to the lymph system, which, she explains, “can put a person at risk for lymphedema.” Breast cancer patients are a well-known risk group, but anyone who has undergone treatment that affects the lymph nodes might also be at risk.

The physical signs of lymphedema can be relatively easy to understand and identify: swelling, pain in the affected areas, a loss of range of motion, and redness or changes to skin texture. You may also feel emotional and psychological symptoms. Stevens says that some of her patients have a negative body image as a result of the swelling and find that their clothes no longer fit like they used to. “They report stress around shopping and buying clothes,” Stevens says. Lymphedema can also put you at risk for cellulitis, a skin infection.

Education first

An important step in lymphedema management, says Stevens, is to begin education as soon as you are prescribed a treatment that might put you at risk. In advance of any treatment, asking your doctor if lymphedema might be a consideration is a good idea. Doctors, she adds, should make patients aware of the possibility of lymphedema if appropriate: “Telling the patient about lymphedema before treatment begins is important so that they know what symptoms to look for.” Awareness about the early-warning signs of lymphedema and management can lead to better outcomes. “Lymphedema patients often say they wish they knew about the risk at diagnosis so that they could take preventive measures and understand the facts,” Stevens explains.

Relief through rehabilitation

A certified lymphedema therapist, a professional specifically trained to care for patients with lymphedema, performs rehabilitation for lymphedema. Certification involves training in complete decongestive therapy, a combination of compression methods (including wraps or garments), exercise and massage—all intended to reduce the swelling and the pain associated with lymphedema. Education on skin care to reduce the risk of infection and ways to avoid sun exposure (as sunburn can further tax the lymphatic system) are also included in the training.

Massage in lymphedema management involves what is known as “manual lymph drainage,” where the therapist uses hand strokes to encourage lymph fluid to flow out of the arm or leg. Compression is also applied to promote drainage—with compression garments (such as sleeves and stockings), bandages wrapped around the affected limb (the therapist will instruct you) and, sometimes, pneumatic compression (using a compression garment that is attached to a pump, which inflates the sleeve or stocking to apply pressure to the limb). The therapist can tell you when you should wear a regular compression garment, such as when on an airplane.

When it comes to exercise, Stevens stresses the importance of working with a certified lymphedema therapist to determine which types of activities are appropriate. “Your therapist will help you avoid muscle strain and activities that cause trauma,” she says, “and help you choose exercise that supports your lymph system and strengthens your immune system.” Depending on your symptoms, the therapist may recommend that you wear a compression sleeve during exercise. Stevens also suggests using common sense when considering activities: “If you haven’t done a certain activity before, consult your therapist,” she says. “For example, if you’ve never played tennis before, don’t play for two hours on your first try.” In general, start any activity (new or old) at a low intensity so that you do not cause trauma.

Stevens says that lymphedema rehabilitation is a priority in cancer treatment at CTCA. “Rehab is not an afterthought here,” she explains. “If patients have procedures that put them at risk of lymphedema, we [lymphedema specialists] are part of the recovery—even before lymphedema develops.”

Whenever patients undergo a procedure or therapy at CTCA that puts them at risk, a lymphedema risk-reduction kit is part of postsurgical care. With the kit, Stevens says, “Patients walk out with items to help them feel empowered to take care of themselves.” The kit includes sunscreen samples, gloves (for skin protection) and informational booklets from the American Cancer Society. Stevens says that she has seen great results when patients follow the rehabilitation plan with the help of a specialist. “The best outcomes happen when patients see their therapists regularly,” she says.

Additional management tips

Though there is currently no definitive research on nutrition and lymphedema, Stevens advises maintaining a healthy weight, as this is certain to support overall health and well-being and may help you cope with symptoms. Stevens also encourages patients to always address unusual changes or symptoms in lymphedema: “If anything worrisome occurs, such as an increase in skin temperature or a change in skin color, contact your doctor immediately.” And ask the specialist to help you learn about skin care—caring for cuts, scratches and burns—and preventing infection.

If you are facing treatment that could harm your lymph nodes, it is good to know that you have resources and qualified experts to help you learn about and manage lymphedema. If you think you may be at risk, consult your health care team and get a head start with education.

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