Women may ignore cancer-related lymphedema: survey

NEW YORK (Reuters Health) - Many women who experience abnormal swelling of the arm or shoulder area following treatment for breast cancer — a bothersome condition called lymphedema — suffer in silence, a new survey indicate.

Others don’t follow the treatment advice of their doctor or use “alternative” treatments, which they may not discuss with their doctors.

Lymphedema is a common, chronic condition that often develops after breast surgery involving removal or damage to the lymph nods in the armpit. It occurs when excess lymphatic fluid accumulates, leading to swelling, rash, redness and blistering that causes tenderness, numbness, or aching in the arm, chest wall and breast.

“Lymphedema has a profound impact on health and well-being, but often goes undiagnosed and untreated by physicians and patients,” said Jane Armer in a statement. “Understanding the ways that people self-manage the chronic symptoms of lymphedema is essential to facilitate an improvement in the use of treatments and quality of life.”

Armer, at the University of Missouri-Columbia and the Ellis Fischel Cancer Center, and colleagues asked 40 breast cancer survivors with lymphedema how they manage the condition and discovered that the most common strategy was to not treat the symptoms at all. For 12 out of 14 symptoms, patients reported taking no action 29 percent to 65 percent of the time, the researchers found.

“I was perhaps most interested in the finding that the most frequent symptom management response was ‘no action’,” Armer told Reuters Health. “This informs me as both a nurse and a researcher that more needs to be done in understanding effective management approaches for lymphedema and educating patients and health professionals about available management alternatives.”

For those that did do something about their lymphedema, most often (about 47 percent of the time) they used doctor-recommended techniques — typically non-drug approaches like simple lymph node drainage and wearing compression garments.

Others turned to drug treatments such as antibiotics and over-the-counter painkillers, while still others favored “lay symptom management” — strategies not recommended by healthcare providers but which include common sense, folk, complementary or alternative methods — like resting, drinking water, or applying heat or ice to combat arm swelling.

According to Armer, patients increasingly are using these types of therapies and most don’t talk to their doctor about it.

“It is essential that women communicate with their health care providers (both primary care providers and specialists) about the treatment alternatives they have sought and are using for their health conditions. Only in this way can their self-management and overall health be optimized,” Armer said. “Two-way communication between the patient and all members of the health care team is vital.”


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