Prevention, Nov 1997 v49 n11 p110(7)
(patients do not have to live with post-surgical lymphedema; includes tips on how to find treatment for the condition and how it can be prevented) by Stephanie Slon.
Abstract: Swelling that makes a leg twice its normal size after cancer surgery, is a disabling painful condition which few doctors recognized as treatable. Causes and prevention of the condition are discussed. One treatment for lymphedema is simple decongestive physiotherapy, a massage technique.
Full Text: COPYRIGHT 1997 Rodale Press Inc.
"You're lucky you survived cancer," her doctor said. "You'll just have to learn to accept it." Lucky and accepting were not at all how Jillian Leslie felt when, 18 years after beating cervical cancer, she watched in alarm as here left calf swelled, and here left foot became misshapen and deformed. After four years of unsuccessful treatment by her doctors -- who concluded that the ballooning leg was "mysterious but not serious" -- Jillian did some investigation on her own. She quickly uncovered her problem: lymphedema, a common complication of cancer surgery or radiation treatment. Not only did she learn that lymphedema causes an unattractive swelling of the limbs, but she found out that it could progress to a disabling, painful, and sometimes deadly condition. What's worse, she discovered that few doctors (and insurance companies) recognize the disorder, and fewer still seem interested in treating it.
To understand lymphedema, you need a little anatomy lesson: An inctricate system of lymphatic vessels drains excess fluid called lymph from tissues. Lymph fluid passes through lymph nodes, tiny clusters of tissue strategically placed throughout the body, which filter out bacteria and impurities (and help defend the body against infection). Lymphedema occurs when the lymphatic vessels become blocked by scar tissue as a result of radiation treatments or when lymph nodes are removed or damaged during surgery. With fewer avenues for excess lymph fluids to leave the extremities, it builds up and causes the limbs to swell. People who undergo abdominal operations or surgeries for cervical, ovarian, prostate, or testicular cancers often experience lymphedema in their legs. The disorder typically strikes breast-cancer patients in the arm on the side of the mastectomy or lumpectomy.
Lymphedema is rare in the overall population, but the magnitude of the problem comes into focus when you do a little math: Of the 1.75 million breast-cancer survivors in the United States, between 155 and 30% are expected to develop lymphedema, which works out to about 500,000 women and men (who also get breast cancer). Add to that the lymphedemas provoked by other types of surgeries, plus the minority of people born with the condition, and you have a substantial number of people suffering from the disorder. Jillian Leslie is not alone in her frustrating quest for help. Many breast-cancer patients report that their doctors seem to adopt the attitude that their work is complete once they remove the cancer, and they see lymphedema as an acceptable consequence of the surgery. Does that kind of thinking suggest that the medical community may be neglecting this serious disorder? Many patients, and even some physicians, believe so.
"Most of our people come in almost in desperation because nobody seems to know much about their condition or how to treat it," says Chester Plotkin, MD, director of the University Hospital of Cleveland Lymphedema Center. Despite the lagging awareness of lymphedema in the broader medical community, Dr. Plotkin notes that lymphedema can be treated (though not completely cured). The most highly effective treatment for lymphedema is called complex decongestive physiotherapy (CDP).
CDP is a noninvasive treatment method that combines specialized massage, compression bandaging, and exercise to move the excess fluid out of the limb and keep it from returning. The cornerstone of the treatment is manual lymphatic drainage (MLD). A specially trained therapist moves the accumulated lymph fluid outward and away from the affected area using short, gentle strokes that simulate a mild pumping motion. This gradually pushes the stagnant fluid through the existing channels to where it can be reabsorbed by the body. A typical outpatient treatment lasts one to four weeks and involves one or two MLD sessions a day, five days a week. The sessions last between 1 and 2 hours each. During treatment, patients also learn how to perform certain self-care techniques for their home program.
Between sessions, the limb is wrapped in nonstretchy bandages, and the patient performs simple exercises. The stiff bandages provide resistance which "enhances the muscle pumping action of the limb," explains physical therapist Jenny Bradt of the Mayo Clinic Lymphedema Center in Rochester, MN. Once their treatment is complete, all patients don a supportive sleeve or legging, known as a compression garment, from the time they wake up until they go to bed to keep the limb at its slimmer size, says Bradt.
"Some people even have to exercise and sleep with their bandages on; it's not an easy regimen of treatment," says Bradt. But for them, it does have its rewards: They can halt the progression of the disease and watch the problem limb decrease in size.
While lymphedema experts strongly endorse the principles of CDP, they also admit that all parts of the program aren't right for every person. Doctors often prefer a mix-and-match approach. For example, MLD is not recommended for patients with active cancer, so doctors often employ wrapping, exercise, and elevating the troubled limb instead. Arthritis or other medical conditions, may be limiting factors, interfering with a person's ability to massage and wrap the affected limb. And a person's own preferences and ability to comply with the treatment need to be considered. "We'll expose patients to all of these therapies, and sometimes they'll have a distinct notion of what they want to do," explains John Cooke, MD, PhD, director of Stanford University Medical School's Lymphedema Center.
If you've heard of lymphedema before, you may have heard of pneumatic pumps to move the fluid out of the limb. They're somewhat controversial and not considered by some doctors to be the ideal treatment. Yet the pump -- as an adjunct to CDP -- may be helpful in creating a personalized treatment program. Gail Gamble, MD, co-director of the Mayo Clinic Lymphedema Center, says, "Rather than deny the treatment, we will certainly use what may be appropriate for a particular patient's needs."
The emotional impact of lymphedema is sometimes even more difficult to handle than the rigorous treatment regimen. Lymphedema patients often experience depression, increased self-consciousness, low self-esteem, and a devastating social isolation. Jillian found that shopping for clothes, once a pleasurable activity, was now a chore. And she dreaded putting on a bathing suit. Mary Jane Massie, MD, a psychiatrist at Memorial Sloan-Kettering Cancer Center in New York City, says this kind of thinking is common in lymphedema sufferers, and this is what she tells her patients: "Think how troubled we are by the pimple at the end of our nose that the rest of the world either doesn't see, or if they do see it, realizes that a pimple doesn't affect our personality or our productivity." Jillian has been able to hurdle her depression by tapping her sense of humor, becoming an advocate for lymphedema education, and simply by counting her blessings every day.
The future of lymphedema treatment is like one of those old good-new/bad-news jokes. On the upside, there is a growing activism that is raising awareness about lymphedema, and there is a growing number of centers offering CDP treatment. On the downside, treatment remains an expensive tedious process that demands a commitment not every patient can make. And so far, Medicare and some HMOs have refused to cover the cost of MLD, compression wraps, and garments. For the most part, optimism prevails among lymphedema advocates. Their goal: Get the word out so that a person struggling with lymphedema will never again hear a doctor say "Just live with it."
In many cases, you can prevent lymphedema – or drastically reduce you chances of developing it -- by following some important before-and-after surgery steps.
Worrying about lymphedema may seem frivolous when faced with cancer surgery, but it's not. Be sure to ask your surgeon for a detailed explanation of your surgery and how it might put you at risk for lymphedema. If your doctor is short on answers, the American Cancer Society, the National Cancer Institute, and the National Lymphedema Network can tell you more.
Ask if the new lymph-node-friendly surgical and mapping techniques might be used in your case. There are ways surgeons can reduce lymph-system damage.
Ask for a baseline measurement of the arm or leg that's most likely to be affected. Have it measured again after surgery and at follow-up visits to the doctor to catch any early signs of swelling that may develop.
It's critical to continue the following post-surgery measures indefinitely since lymphedema can develop even years after surgery, as Jillian Leslie found out.
Locating a qualified lymphedema specialist is dicey, because there currently is no national accreditation standard for clinics or certification program for therapists or doctors. Your best bet is a lymphedema treatment center (often affiliated with a medical school), because a team of doctors, registered nurses, physical therapists, and specially trained massage therapists can provide a customized program. The National Lymphedema Network (NLN) offers a resource guide that lists treatment centers and practitioners across the country that have met NLN sponsorship qualifications and have chosen to be on their referral list. Call 1-800-541-3259 or visit the NLN Web site at http://www.wenet.net/~lymph-net'. The NLN also offers a helpful sheet that lists a set of questions you can ask to help you evaluate a potential lymphedema center for your treatment. We recommend it highly. You can also call the Stanford Lymphedema Center at 1-650-498-6921 or visit their Web site at http://med-www.stanford.edu/school/ lymphedema/.