Lymphedema, a painful and often debilitating buildup of lymphatic fluid in an arm caused by removal of the lymph nodes, is an often overlooked aspect of breast cancer treatment.

A 1998 report estimated as many as a third to a half of the nearly 200,000 women diagnosed with breast cancer each year develop the chronic condition following traditional surgery, in which all lymph nodes in the armpit nearest the affected breast are routinely removed and biopsied. (Radiation treatment may increase the risk.) A 1999 medical report put the number of people with lymphedema resulting from breast cancer in the United States at 400,000. But because there has been little monitoring of lymphedema patients, good data are scarce.

One reason there's been so little tracking: The disorder can manifest itself any time from three months to more than 30 years after surgery, say breast cancer surgeons. As thick, protein-rich fluid that is normally removed by lymph nodes begins to clog tissues, the patient's arm starts to ache and swell. The swelling can interfere with sleeping, lifting and walking and can make people more susceptible to infection. There is no cure; symptoms are generally managed with physical therapy, massage and exercise. Compression bandages are also used sometimes.

A study published earlier this year in the journal Cancer found that about 39 percent of 153 breast cancer survivors reported some level of lymphedema two decades after surgery, and that the condition caused them considerable stress.

The psychological impact doesn't surprise Chevy Chase physical therapist Janet Sobel, who sees about 20 lymphedema patients each week. "Number one, it's a constant, daily reminder that they've had breast cancer," she says. "Plus, it's cosmetically unattractive. For some people, it's very painful and they're always dealing with people asking what happened to their arm. They have trouble doing everyday things, like picking up a child, and have trouble buying normal clothes in normal stores because one arm may be bigger than the other."

Changes in surgical procedures may reduce the incidence of lymphedema. According to Ted Tsangaris, associate professor of surgery at Baltimore's Johns Hopkins School of Medicine and head of breast surgery at Johns Hopkins Hospital, the primary reason for the traditional removal of lymph nodes, which can range in number from five to 40, is diagnostic -- to determine whether the cancer has spread beyond the breast. "It was a very crude way of approaching it," said Tsangaris. "You just automatically took out most of the lymph nodes underneath the arm, handed them to a pathologist, and said, 'Find me a lymph node that has cancer.' "

But a more targeted surgical approach, called sentinel node biopsy, may make lymphedema less likely because many lymph nodes are spared. Surgeons first inject dyes into the breast. The dyes are observed to see if they travel into the lymph nodes, mimicking the pathway cancer cells might have taken. If dyes are found in a lymph node, it is removed to determine if it is cancerous. The rest of the nodes are left intact.

"If there's no cancer in the lymph nodes identified as being sentinels," said Tsangaris, "studies have shown with very good reliability that you can predict that the rest of the lymph nodes are going to be negative. You don't take them out and, therefore, the risk of lymphedema is essentially almost zero."

However, he noted, the surgery is new enough and demanding enough that many doctors are not comfortable doing it; it also requires the patient to take on a higher degree of risk: "If you take out the wrong lymph node and you tell the patient there is no cancer in the lymph nodes, it's possible she won't get any chemo or other therapy and will be under-treated."

Breast cancer surgeon Nancy Markus, who practices at Shady Grove Adventist Hospital in Rockville, says she recommends that her patients follow prescribed physical exercises and weight control -- both, she says, major factors in reducing the risk of lymphedema. "Usually," she said, "if they are diligent about doing their exercises, they don't have much of a problem with lymphedema, unless there's some inciting event to trigger it. . . . Anything that causes an inflammation in the affected arm can set it off, and once it starts, it is very difficult to completely eliminate it.

"I tell my patients to avoid constricting garments on their arm and if they get a cut or any break in the skin, to immediately treat it with an antibiotic ointment," she explained. "If redness occurs, they need to contact us for prompt antibiotic therapy because an infection can easily trigger the lymphedema."

Surgical treatment for lymphedema is reserved for only the most severe cases and has a low success rate.

Benita J. Walton, founder of Casting For Recovery, says no formal study has followed any of the program's 1,200 retreat participants to see if they've accrued any benefits, including warding off lymphedema. She says she is drafting grant proposals to do just that.

Markus recommends that women seeking more information about lymphedema contact the Mid-Atlantic Lymphedema Centers at 800-845-7525, the American Cancer Society at 800-227-2345 or www.cancer.org, the National Lymphedema Network at 800-541-3259 or www.lymphnet.org, or the Susan G. Komen Breast Cancer Foundation at 800-462-9273 or www.breastcancerinfo.com.

-- Michael Toscano

SOURCE:
The Washington Post Company