Preventing Lymphedema After Breast Cancer

Lymphedema isn't just a legacy of breast cancer treatment. The leg can swell if groin nodes are damaged from other cancers, including gynecologic cancer. Melanoma treatment left former presidential candidate John McCain with facial swelling. Occasionally, rare diseases can trigger a different form of lymphedema.

But lymphedema among breast cancer survivors may be most common. It's been estimated to affect between 20 percent and 30 percent of patients who have 10 or more under-the-arm nodes examined, called an "axillary lymph node dissection."

A surprising study published in November's Journal of Clinical Oncology suggests few such women may be diagnosed. University of Minnesota researchers analyzed records from the huge Iowa Women's Health study, to cull more than 1,200 patients who'd had breast cancer between 1986 and 2003. Eight percent had been formally diagnosed with lymphedema yet another 37 percent of the women suffered persistent lymphedema symptoms, including a swollen arm.

Today, some women have far fewer nodes examined in a "sentinel node biopsy," and separate research suggests those women are far less likely to get later lymphedema -- possibly as low as 5 percent, Paskett notes -- although many don't qualify for the smaller surgery because of large tumors or other factors.

But perhaps most concerning from the Iowa data, only 40 percent of the women with swollen arms but no diagnosis had heard of lymphedema and less than 2 percent had sought care for their arm symptoms.

Yet early care is key, as Anne Holman of Washington, D.C., can attest. In 2006, doctors found cancer in eight of 18 lymph nodes. She was undergoing chemotherapy to shrink her tumor before an eventual mastectomy when one day her arm turned red and itchy. Come in right away, said Minna Manalo, a nurse practitioner at Georgetown University Hospital's breast cancer unit.

Along with a skin inflammation, Manalo diagnosed lymphedema -- Holman's arm was just starting to swell. Daily for two weeks, she underwent what's called complete decongestive therapy, where a machine massaged fluid from her arm and it then was tightly bandaged to counter swelling. Once her arm shrank, Holman was prescribed a lifelong therapy: A tight elastic sleeve and fingerless glove to wear regularly, especially during her job as an international flight attendant, plus arm exercises to help push out returning fluid.

"I'm trying to stay ahead of the game," says Holman, 61. "You can't cure this, but you can manage it."

Paskett's study -- now recruiting participants at Ohio State, Georgetown and a growing number of other hospitals -- tests whether milder versions of those techniques could prevent lymphedema in the first place. Women recovering from a large node removal are randomly assigned to either a regimen including personalized arm exercises, or just lymphedema education.

Results aren't due until 2012. Meanwhile, cancer groups advise:

• Be alert for subtle swelling. Don't ignore a tight ring or watch, or clothes suddenly not fitting.
• See a certified lymphedema specialist, who has proper training in fitting compression garments and proper use of decongestive therapy. Improper use of either can worsen the condition. 
• Obesity and arm injuries are additional risk factors. So watch your weight; avoid injections in the affected arm; clean cuts and seek care for infections promptly; wear gardening gloves and oven mitts; and avoid temperature extremes, such as hot tubs.