Specialized Care Improves Lives of Patients With Head and Neck Lymphedema
By Bryan Tutt
Lymphedema is generally not painful but can be disfiguring, and no cure is available. In cancer patients, lymphedema is usually caused by lymph node damage or scarring of lymphatic vessels following surgery or radiation therapy. “Any treatment that impairs the lymphatic drainage system can result in lymphedema,” said Jan S. Lewin, Ph.D., a professor in the Department of Head and Neck Surgery and chief of the Section of Speech Pathology and Audiology at The University of Texas MD Anderson Cancer Center.
Lymphedema is commonly seen in the arms of patients treated for breast cancer or the legs of patients treated for genitourinary cancers. Lymphedema in the head and neck region is much less common than lymphedema in the extremities, and it presents different challenges for patients and clinicians.
The effects of head and neck lymphedema are not simply cosmetic. When lymphedema affects the lips, tongue, eyes, or throat, the functional problems can be severe and even life-threatening. Swelling of the face, mouth, and neck can substantially impede speaking and swallowing. Swelling around the eyes may affect reading, writing, and even walking. Lymphedema that affects the airway may result in difficulty breathing. The emotional consequences—frustration, embarrassment, and even depression—can also be significant.
Although lymphedema is most often managed by physical, occupational, or massage therapists with specialized training, many of these certified lymphedema therapists will never see a patient with head and neck lymphedema.
“Extremity lymphedema is the physical or occupational therapists’ area of expertise. When lymphedema occurs in the head and neck region, it often affects the ability to speak, swallow, or breathe, and its treatment requires a unique skill set,” Dr. Lewin said. She believed that head and neck lymphedema treatment outcomes could be improved by training speech pathologists—who were already familiar with the anatomy and physiology of the head and neck and were likely to be treating the patients for speech and swallowing dysfunction—to become certified lymphedema therapists.
The head and neck lymphedema program in the Department of Head and Neck Surgery began in 2006 and now has two speech pathologists who are certified lymphedema therapists, Brad Smith and Leila Little. They provide evaluation and treatment to patients referred by MD Anderson physicians or by physicians outside the institution as well as patients who are self-referred but have been diagnosed with head or neck lymphedema by a physician.
The program of management for head and neck lymphedema at MD Anderson consists of outpatient treatment provided by a certified lymphedema therapist combined with a self-directed treatment program that the patient can perform at home. Although some patients come for routine outpatient visits, most can manage their lymphedema at home after one to three visits and return in 4–6 weeks for a followup evaluation. “The ability to easily access the head and neck region allows much of the therapy to be performed at home, a feature that enhances patient adherence to the therapy regimen,” Mr. Smith said.
“The majority of our patients tell us that their swelling is worst when they first get up in the morning and improves throughout the day. That’s the opposite of what patients with extremity lymphedema experience; their swelling increases throughout the day,” Mr. Smith said. “This is why management of swelling in the arms or legs is often a life-long process. In contrast, patients with head and neck lymphedema often respond quickly and avoid the need for lifetime treatment.”
According to Dr. Lewin, there is no standard objective measurement to evaluate treatment outcomes in patients with lymphedema in the head and neck area. Instead, photography and tape measures are used to document change over the course of treatment. “Our data over the past 6 years show that more than half of patients demonstrate improvement on their first follow-up visit, and more than 70% show an overall reduction in lymphedema if the patient has been compliant with the treatment program—regardless of whether the setting is outpatient or home-based,” she said.
Mr. Smith said, “We can almost eliminate the swelling in patients with mild edema within 6 months. For patients with severe scarring and more swelling, it may take longer. Even if we can’t eliminate the swelling, we’re almost always able to get some improvement.”
Although the management of lymphedema should first be attempted with complete decongestive therapy, Dr. Lewin said that surgery is an option for patients with chronic, severe head or neck lymphedema when standard methods of treatment are ineffective.
Ms. Little added that better long-term results are achieved when lymphedema is treated in its early stages—before the tissue becomes fibrotic. Therefore, patients whose edema has not resolved within 4–6 weeks of the completion of treatment for head and neck cancer should be referred for evaluation. “There are usually treatment options available,” she said. “Lymphedema isn’t something a patient should have to live with.”
For more information, call Dr. Jan S. Lewin at 713-745-2309.
Other articles in OncoLog, August 2013 issue: