Living with lymphedema

By Catherine Grillo

Every year, some half a million Americans undergo cancer treatments that require the removal or destruction of lymph nodes. Approximately one in five of these patients—more than 100,000 people—will develop lymphedema (swelling), a chronic and incurable complication that will change their lives forever.

The lymph system, a complex network of nodes and ducts, helps maintain the body’s fluid balance, filter out waste products, and defend the body from threats such as bacteria. When lymph nodes are removed or destroyed, the normal flow of lymphatic fluid is disrupted, and anything that causes an increase in lymphatic activity such as injury, infection, or overuse can lead to a backup of fluid in the tissues “downstream” from the missing nodes.

As fluid builds up, the affected area becomes swollen and painful, sometimes doubling in size. Restricted blood flow gradually starves cells of much-needed oxygen, and the protein-rich lymph fluid becomes a breeding ground for bacteria. If left untreated, lymphedema can lead to permanent tissue damage, scarring, disability, and in the worst-case scenario—a rare form of cancer called lymphangiosarcoma.

When Marty Houk of Long Island, New York, noticed swelling in his left ankle some three months after a radical prostatectomy, neither he nor his primary care physician had any idea of the cause. Then Houk listened to a radio show on prostate cancer and realized the source of the persistent swelling.

“The last call-in person started describing what it was like to live with lymphedema, and alarms went off in my head,” recalls Houk. “It made me sick to listen to it. Why hadn’t anyone told me about this?”

Houk isn’t alone. Although lymphedema is a side effect of cancer treatment, particularly among breast cancer patients, it has been given surprisingly short shrift in the world of medicine. When the Memorial Hermann Center for Wound Healing and Hyperbaric Medicine in Houston added lymphedema management to their program, director Caroline Fife, MD, didn’t expect to have many takers. The center had done no advertising and had limited their outreach to a small notice on the website of the National Lymphedema Network (see sidebar, page 61). But within days of launching the new program, Dr. Fife found herself inundated with desperate patients.

“They just came out of the woodwork,” she recalls. “There was a huge backlog of patients with dreadfully neglected problems, very tragic situations that had not had therapy at all.”

While there is no cure for lymphedema, it can be treated and managed once it is recognized. Research has shown that a combination of manual lymph drainage (MLD), compression devices, and protection of the affected area can make a huge difference in the lives of patients with the condition. But finding the right mix—and the professionals who understand the condition—can be a challenge.

Among the therapies available:

• Manual lymph drainage (MLD) is a specialized form of massage that helps move lymph fluid along and boosts the activity of intact lymph nodes. Unlike other forms of massage, MLD doesn’t involve deep muscle tissues. Instead, MLD practitioners use gentle pressure to move fluid away from the affected area toward the remaining lymph nodes. Several techniques exist, but the choice of which to use is largely a matter of personal preference. “When it comes down to it, it’s more important to get something done than it is to debate techniques,” says Dr. Fife. Patients are also taught techniques for self-massage once the initial therapy is complete.
  
  
• Compression devices fit over the affected arm or leg and help to maintain or reduce the swelling in the limb. Compression pumps use air pressure to mimic the beneficial effects of massage. They are designed to provide sequential, even pressure from the distal (outermost) to proximal (innermost) portions of the affected limb, moving built-up lymphatic fluid back toward the functioning lymph nodes. Compression sleeves may be custom-made or purchased off-the-shelf and are available in many styles and fabrics. Wrapping the arm or leg with specialized compression bandages is also used to reduce or control the swelling.
  
  
• Protecting the affected area means keeping the skin supple and healthy, avoiding anything that could lead to infection or inflammation (see sidebar, opposite page), and taking steps to prevent accumulation of lymph fluid. Compression garments, such as support stockings and sleeves, are critical to preventing lymph buildup when traveling or exercising.

Senior Occupational Therapist Sara Cohen, OTR/L, a certified lymphedema therapist at Memorial Sloan-Kettering Cancer Center in New York, personalizes the therapies depending on the needs of the patient.

“I try to create a program that allows them to manage their lymphedema at home,” Cohen says. “I teach them correct wrapping techniques, exercises, and self-massage.”

But Cohen cautions that each person is different in how their body responds, meaning that what may work for one patient, may not for another, adding that patients should seek out a professional to correctly fit the sleeves since an improperly fitting sleeve could irritate the skin or cause additional swelling.

In one study of 299 patients with active lymphedema, a regimen of manual lymph drainage, compression devices, and good skin care reduced swelling and symptoms by 59-68%. More importantly, patients who continued to follow the program maintained this improvement for at least a year after the study was completed.

Another well-recognized though little understood risk factor for lymphedema is excess weight. Experts recommend that patients who have undergone lymph node removal make an effort to maintain a healthy weight through a combination of diet and exercise. Although overexertion of affected limbs is a prime risk factor for lymphedema, regular exercise is one of the best ways to prevent the problem. (Gentle exercises such as yoga may actually improve lymph flow.) Just be sure to wear a properly fitting compression garment while exercising. Swimming or water aerobics are particularly good options, as the water provides natural, even pressure on the body.

In the four years since the launch of Memorial Hermann’s lymphedema management program, Dr. Fife and colleagues have treated some 500 lymphedema patients, and the center has gone from having one full-time lymphedema therapist to six. Although awareness of lymphedema has increased, Dr. Fife, like many in the field, believes that more could be done.

“I think some physicians inappropriately minimize the significance of lymphedema,” says Dr. Fife. “There is a sense that the life-threatening problem has been handled, and this is just one of the sequelae that you have to learn to live with.”