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By LAURAN NEERGAARD, Associated Press WASHINGTON (November 27, 2000 5:47 p.m. EST
Every day, Suzanne Ben Aida pulls a tight elastic glove over her swollen right hand and arm, and every night she adds a swath of bandages. It's a battle to keep her arm from ballooning -- a legacy of breast cancer called lymphedema. Many patients aren't warned to expect such a complication and they struggle to find good care when the symptom strikes.
The very therapy vital to fighting breast cancer leaves 15-20 percent of patients with this side effect, a swelling of the arm on the side where the breast tumor struck.
That means a staggering 300,000 breast cancer survivors may cope every day with some degree of lymphedema. For some, it's a mild swelling that merely annoys when rings or clothing don't fit.
Others can be disabled as their arm painfully balloons to twice its normal size and leaves them prone to infections.
Yet many doctors dismiss women's complaints as a small price for surviving cancer, leaving patients to sort through a bewildering array of touted therapies. Some help, some don't, and others could be harmful.
So says the American Cancer Society, which is so concerned that it's funding the first effort to certify health workers who provide quality lymphedema treatment. The society also has just published a lymphedema guide in its cancer journal and a plain-English patient version.
But more research is vital. Lymphedema is "an area of profound neglect," says report co-author Robert A. Smith, the society's cancer screening director. "We need desperately to be able to give women better advice" both on treatment and reducing women's risk of getting lymphedema.
Part of the immune system, lymph vessels channel important fluids around the body. When lymph nodes under a breast cancer patient's arm are removed or damaged by biopsy, surgery, or radiation, lymph fluid can build up, called lymphedema. (A few other surgeries and rare diseases cause other kinds of lymphedema.) There's no cure. It can be a daily, very public reminder of women's cancer battle.
"Everybody asks you what happened to your arm, bar none," says Ben Aida, 56, of Reston, Va., who describes her arm as noticeably enlarged since undergoing a lumpectomy and lymph node biopsy in 1999. "And you're really limited in what you can do with that arm."
Good news: New "sentinel node biopsies" that require removing fewer lymph nodes to check for cancer's spread, and better targeting radiation therapy to just the cancerous spot, should reduce women's risk of getting lymphedema. But not all oncologists use the newer methods yet, and they're not appropriate for all patients. So what should breast cancer patients know?
Take some common-sense precautions, lymphedema experts advise, even though more research is needed to prove their effectiveness:
Avoid vaccinations, blood pressure measurements, even skin punctures like insect bites on the arm on the cancer-affected side.
Get prompt treatment at signs of infection.
Avoid wearing constricting clothing, and avoid heat, including suntanning, hot baths and saunas.
Lift heavy objects with the other arm. Study is urgently needed to find how much exercise is OK.
Watch out for swelling because early treatment is best, Smith advises.
What treatments work? "Complete decongestive treatment," or CDP, tops the cancer society's list.
Health workers who are specially trained -- that's key -- gently massage fluid from the arm, then bandage it and later fit patients with elastic gloves and sleeves to keep fluid from returning.
Ben Aida calls herself lucky -- she gets CDP several times a month from a special lymphedema clinic at Inova Fairfax Hospital near her Virginia home. But she missed a session last week and "it already was bigger yesterday. It's a real battle," she says.
How do women find good care? The cancer society is funding the Lymphedema Association of North America's development of a competency exam for therapists. The goal: a standard, hopefully by next year, to guide women, and insurers who sometimes balk at repeat treatments, to quality care.
As for other therapies, Smith's report says:
Elastic garments alone help some women. But they must be properly fitted by a specialist, not an untrained store clerk.
Elevating the arm helps mild cases.
Some doctors recommend controversial "pneumatic pumps," devices that force out fluid.Some studies suggest they work well, others not so well. But women need careful instruction in using them because misuse can worsen swelling.
No surgery has yet proven effective, nor have diuretic drugs.
Some doctors are experimenting with drugs called benzopyrones, but one U.S. study found no value and some worrisome side effects.
Lauran Neergaard covers health and medical issues for The Associated Press in Washington.
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