June 1, 2004
Health Journal
Efforts Mount to Combat Lymphedema,
A Devastating Side Effect of Cancer Care
By TARA PARKER-POPE
Staff Reporter of THE WALL STREET JOURNAL
A devastating side effect of cancer treatment is finally getting attention from doctors and lawmakers, but many patients still aren't aware of the risk.
The problem is called lymphedema, a painful and debilitating swelling of an arm or leg that can occur months or even years after cancer treatment. In patients whose lymphatic systems have been damaged by radiation or the removal of lymph nodes, even minor overuse of a limb can trigger extreme swelling. Breast-cancer patients, who may have lost a dozen or more lymph nodes as part of their diagnosis and treatment, are particularly susceptible. But patients treated for prostate cancer, gynecological cancers, head and neck cancer, testicular cancer, bladder cancer, colon cancer and melanoma are also at risk.
If not treated swiftly, the condition can be irreversible. But the problem is, many patients don't even know about it. Doctors often fail to warn about lymphedema, either because they themselves aren't aware of it or because they don't want to scare patients. Some physicians even mistakenly prescribe diuretics to reduce swelling -- a treatment that can actually exacerbate the disease.
Ignorance can have serious consequences. Simple acts like carrying a heavy bag, cutting a finger or working too long at the computer can trigger the swelling. That's because the body responds to infections, injury or exertion by making extra fluid. The lymphatic system normally helps drain this fluid from body tissues, but in someone with a compromised system, even a slight increase in fluid buildup can quickly lead to overload, causing swelling in an arm or leg, depending on where the lymph nodes were removed. The limb can swell far out of proportion to the rest of the body.
While data are scarce, studies so far show from 20% to 45% of patients who are at risk for lymphedema will eventually develop it. Treatment can last for a few weeks, or for the rest of a patient's life, and involves constant care, including physical-therapy treatments, special exercises, bandages and compression garments.
"Patients usually are not educated in advance so they're not aware of some of the risk factors and the fact that they could take precautions," says Pam Massey, director of rehabilitation services at University of Texas M.D. Anderson Cancer Center in Houston. To prevent the problem, patients should avoid overuse of the arm or leg most at risk and learn to recognize symptoms so they can seek treatment quickly.
Lymphedema is beginning to get more attention in part because so many cancer patients now are living far longer, forcing doctors and researchers to focus on the long-term effects of cancer treatments. And patient advocates are pushing to improve insurance benefits for the treatments. Insurers often deny coverage because they don't have a certified lymphedema specialist in their plan, or some plans may put a cap on the amount of treatment a patient receives. In January, a Virginia law began requiring insurers to cover the costs of lymphedema treatment and supplies. Lawmakers in New York and Massachusetts also are mulling lymphedema-related legislation.
But for many patients, the biggest hurdle is getting the right diagnosis. Long Island, N.Y., shop owner Catherine Pascucci had three lymph nodes removed and a lumpectomy and radiation treatment for breast cancer three years ago. After her surgery, she returned to her fragrance shop, lifting boxes and ringing sales, never knowing that such overuse put her at risk for lymphedema.
About three months after cancer surgery, she noticed her bracelet was tight, but her breast surgeon dismissed her swollen arm as a reaction to a bug bite. Months later, another doctor told her about lymphedema, and she finally sought the right treatment. Today she must undergo regular physical-therapy treatments and wear compression bandages on both arms to control the swelling.
"My doctors never said, 'Don't lift. Don't carry,' " says Ms. Pascucci, 65 years old, who now hands out lymphedema brochures to customers. "Now I have to deal with this the rest of my life."
When lymphedema is caught early, treatment is relatively effective and the condition can be kept under control with minimal care. A physical therapist, who should have 120 to 140 hours of specialized training, uses a gentle massage that helps the fluid drain away from the painful arm or leg. The treatment, which may be needed two or more times a week for several weeks, can cost as much as $200 for an hourlong session. Custom compression garments and bandages can cost $700 or more, and most patients need two sets. The garments generally must be replaced every six months.
Delays in treatment can be disastrous. After surviving invasive cervical cancer, Folsom, Calif., resident Carolyn Chastain developed lymphedema, but her insurer wouldn't pay for visits with a trained specialist, sending her to an unqualified therapist within the plan and providing ill-fitting bandages. After finally complaining to state regulators about the inadequate treatment, the denials were reversed. But the delay in getting proper treatment left her with an irreversible form of the disease. The 43-year-old aerospace engineer was forced to quit work and now spends about eight hours a day on treatment, bandage care and exercises to cope with extensive swelling in both legs.
"The last thing a person should have to do after battling for their life with cancer," she says, "is to fight for every pittance of health care related to lymphedema."
The National Lymphedema Network, www.lymphnet.org, provides extensive information on the disease.
E-mail healthjournal@wsj.com.
