Living with Lymphedema

Tammy Ratliff studies her right arm every morning in the mirror, checking for redness, splotches or swelling. She stretches, performs deep breathing and practices self-massage on her arm before heading to work at a staffing agency in Nashville, Tenn. During the day, the 48-year-old watches for signs of increased swelling, letting go of the computer mouse for a while to stretch and move. Eight years after breast cancer surgery, which included a lumpectomy and removal of 15 lymph nodes, managing her lymphedema is a way of life.

Part of the body’s immune system, the lymphatic system circulates lymph, a clear fluid containing white blood cells that acts, in part, to remove bacteria and certain proteins from the tissues. When even a few of the body’s hundreds of lymph nodes are removed, the system’s ability to filter out waste and route fluids can be compromised, resulting in a backup of fluids called lymphedema.

“The lymphatic system is the body’s sewer system,” says Diane Galvin, a physical therapist at Cleveland Clinic Foundation in Cleveland.

“If the lymphatic system is not working optimally, one may be more susceptible to infection,” she says, adding that more severe infections can develop into cellulitis, a potentially serious bacterial skin infection. Although lymphedema can occur on its own, albeit rarely, the condition most frequently develops as a result of something else—infection, for example, or cancer treatment that includes surgical removal of nodes or radiation near nodes and vessels.

Although lymphedema is more commonly known as a complication of breast cancer treatment, it can result from treating many types of cancer, including head and neck, lymphoma, melanoma, ovarian, prostate and uterine—anywhere that nodes are removed or damaged by radiation or surgery. Indicators of lymphedema include swelling, tightness, pain and reduced range of motion in one arm or leg, although sometimes both arms or legs can be affected.

[Early Detection of Lymphedema is Key]

In advanced stages, swollen areas can harden, indicating that the swelling may be less easily reversed. And because lymphedema is generally considered a chronic condition, managing it requires constant care, often with the help of a trained therapist.

Everyday Challenges

Ratliff’s symptoms began seven months after her breast surgery, once she’d begun receiving radiation treatments. She saw a physical therapist, but her lymphedema progressed. At its worst, her upper right arm swelled so much that it was four inches larger in circumference than her left arm.

Ratliff says she had a very difficult time finding clothes to fit her swollen right arm. “It wasn’t just that things were tight,” she says. “It was a whole different size range. That arm looked like it belonged to someone else.”

Having already been hospitalized because of cellulitis, Ratliff takes penicillin to prevent additional infections. She also keeps an antibiotic on hand for flare-ups and has a standing prescription for intravenous antibiotics. She says a recent hornet sting on her right hand, in addition to a scrape on her thumb, required her to take an antibiotic for two weeks to clear the infection.

“Just a bug bite and you can become sick very quickly,” Ratliff says.

Early detection can improve the results of treatment for lymphedema, but survivors must act quickly, at the first signs of a problem. “If we do early screening, we can pick up subclinical lymphedema,” Galvin says.

“If we treat it effectively, early, it doesn’t become a huge problem.”

Wearing compression garments, engaging in guided exercise and carefully lifting weights can prevent lymphedema or reverse swelling and keep it at bay.

When preventive measures aren’t enough, complete decongestive therapy (CDT) with a lymphedema therapist, such as a physical or occupational therapist, is the standard of care. The process involves daily visits with a therapist who performs manual lymph drainage, a massage technique that stimulates the flow of lymphatic fluid (though recent studies suggest this portion of therapy might not bring significant added benefit over other components). Next, the therapist bandages the limb to reduce swelling and guides the patient in specialized exercises.

Therapy sessions continue until the swelling has subsided, at which point patients can perform their own therapy. Compression garments replace bandages, often accompanied by special bandaging options at night.

“Self-care means assuming responsibility for all those components that you had done by a professional,” says Sheila Ridner, chairwoman of the National Lymphedema Network Research Committee and a professor at Vanderbilt University School of Nursing in Nashville, Tenn. “Less than half of patients are able to maintain that intensive routine,” she adds, explaining that some self-management routines can take up to an hour a day to perform.

“If you do it, you can manage your swelling fairly well and reduce your risk of infection, but it’s burdensome, and sometimes even if you do everything right, you still have problems.”

Complementary and Experimental Treatments

A number of potentially beneficial treatments lie outside the scope of CDT. Clinical trials abroad suggest that acupuncture could be a helpful complement to standard care. The therapy was long overlooked because of the misconception that acupuncturists would insert needles into the affected area and cause infection.

Low-level laser treatment, an FDA-approved lymphedema therapy, has been shown to be as beneficial as massage in some studies.

Innovative surgical procedures are also being studied, although some are controversial and carry certain risks.

An autologous lymph node transfer involves replacing missing nodes with healthy nodes from another part of the body. The hope is that the new nodes will stimulate growth of new channels to move lymph and prevent a buildup of fluid. A clinical trial is currently underway to determine the procedure’s effectiveness.

Lymphedema bypass surgery—or lymphaticovenous anastomosis—connects lymphatic veins and vessels to maintain the flow and drainage that the removed lymph nodes once supported. Research suggests that this microsurgical procedure could benefit people when nonsurgical interventions fail. In an ongoing pilot study, surgeons are performing this procedure at the same time as mastectomy and node removal, in an attempt to eliminate the chance of patients’ developing lymphedema in the first place.

Other surgical options include liposuction to remove fatty tissue from patients with chronic lymphedema and debulking of excess tissue.

Despite the lack of clinical data, demand for solutions continues to grow. Although not established as standard care, surgical options are increasingly considered. In April, the Annals of Surgical Oncology published a review of scientific literature from the past decade about surgical developments for lymphedema, which concluded that “with proper diagnosis and appropriate selection of procedure, surgical techniques can be used to treat lymphedema safely and effectively in many patients when combined with integrated lymphedema therapy.” Patients should remember, however, that these procedures are not considered standard care, and should discuss the risks and benefits with their doctor.

Financial and Psychological Costs

Some health insurance plans don’t cover physical or occupational therapy, and insurers often balk at covering unproven surgical procedures, leaving patients to bear the cost of treatments, whether or not they work. Add to that the time and effort required to see results and maintain them, and for some patients, it’s too much, says Ratliff, who has been able to reduce the swelling in her arm with daily care.

“Some women can’t handle one more thing,” Ratliff says. “The hair loss was enough, or the weight gain, or losing their breasts, or having the scar. One more thing is the straw that breaks the camel’s back. So, they don’t seek treatment.”

Ridner encourages people with lymphedema to educate themselves so they can educate others. “Patients have to be their own advocates,” she says. “It makes them feel empowered and more in control.” And she advises patients who suspect they might be developing the condition to promptly inform their healthcare provider or seek out a lymphedema specialist or a physical therapist who is familiar with lymphedema.

Talking Points:

> Managing lymphedema requires constant care and could include the help of a trained lymphedema specialist.

> Self-management routines can be time-consuming but effective.