Lymphedema Treatments Are Poorly Utilized

Kate Johnson


October 29, 2003

Lymphedema is an underrecognized complication of cancer therapy, and even when it is recognized, it is often undertreated, says Dr. Anna Towers, Director of the Palliative Care Program at McGill University in Montreal, and head of the university's Lymphedema Program.

"Of the people I see who have been diagnosed with lymphedema, 99.9% have been followed by their oncologists for10 years, but told their lymphedema is just a side effect of their cancer treatment and there's nothing that can be done," she said, stressing that the condition should always be investigated because it can sometimes be an indication of cancer recurrence.

Experts who recently gathered at an international meeting on lymphedema, hosted by McGill University, agreed that lymphedema is a condition that carries huge morbidity, and can even be fatal, but most physicians know very little about it.

"Awareness is a big problem because early diagnosis is essential in preventing progression of this disease," said Dr. Horst Weissleder, Professor of Radiology at the University of Freiburg in Freiburg, Germany. "Physicians need to know that there are treatments available, and the earlier they are started the better, ideally within the first few months after diagnosis. The longer it's left, the more likely you will have changes in the tissues that make it difficult to treat," added Dr. Towers.

Lymphedema is the abnormal accumulation of lymph fluid under the skin and subcutaneous fatty tissue, which causes excessive swelling -- mostly in the limbs, but also elsewhere in the body. Untreated it can bloat body parts to up to 3 times their normal size, causing pain and producing huge skin folds and the bulbous swellings known as elephantiasis. It can also cause permanent skin changes and cellulitis, and in severe cases it can lead to a rare form of cancer called lymphangiosarcoma.

The cancer patients who are most at risk for lymphedema are breast cancer survivors, who, as a result of either lymph node dissection or radiation therapy, can develop arm lymphedema. Estimates of the incidence of lymphedema in this population vary from 20% to 40%, which works out to roughly 40,000 new cases per year in the United States, said Dr. Weissleder, who is the author of "Lymphedema Diagnosis and Therapy."[1]

"Gynecologists will also see lymphedema manifested as leg, genital, or abdominal swelling after surgical removal of lymph nodes, or pelvic radiotherapy for gynecologic or pelvic tumors," added Dr. Towers. She said that, typically, lymphedema does not occur until 1 or 2 years post treatment --but has been known to occur up to15 years later.

Dr. Andrea Cheville, Assistant Professor, and Director of the University of Pennsylvania Cancer Center's Lymphedema Program, says awareness of gynecologic lymphedema is slowly growing, but until recently "there was utter denial among gynecologic-oncologists that gynecologic lymphedema could complicate their treatments."

"For patients with a history of gynecologic cancer, if you see any genital swelling, changes in the skin texture, changes in hair growth, thickening of the labia, the presence of papillomas or discreet warty growths, or lymphorrhea – think lymphedema," Dr. Cheville said.

Lymphorrhea (excessive vaginal leakage that is more watery than a typical vaginal discharge) may be difficult to recognize, especially if it is occurring intravaginally. However, physicians can distinguish it from normal vaginal discharge or vaginal infections in a number of ways. "Many times, vaginal discharge is whitish or curdish, thick and opaque, but this is not. Lymphorrhea tends to be clear or a little bit yellow-colored. If you do cultures on it, it is negative. But patients may sometimes complain that it is malodorous. Lymph has no odor, but it is very proteinaceous, which makes it a good culture for bacteria," explained Dr. Cheville.

The diagnosis of lymphedema is one of exclusion -- and in addition to ruling out the recurrence of metastatic disease, physicians must also rule out deep vein thrombosis as well as renal, liver, and heart disease, said Dr. Towers.

"An experienced lymphologist or a well-trained physician could establish a diagnosis of lymphedema in 98% of cases, based on clinical aspects only," said Dr. Weissleder, adding that less experienced physicians may find imaging a useful adjunct.

Clinical aspects include edema that does not respond to diuretics, signs of cellulitis, and the Stemmer skin-fold sign (a fold thicker than 4 mm on the dorsal aspect of the second toe), he explained.

Goals in the treatment of lymphedema include reducing the swelling and preventing recurrence, as well as preventing the development of cellulitic infection, said Dr. Towers. Combined decongestive therapy consisting of manual lymph drainage, compressive bandaging, and exercise while wearing bandages is successful in redirecting the lymphatic fluid into functioning vessels and lymph nodes, but she says few physicians recommend this to their patients.

In the case of gynecologic lymphedema, these treatments must be modified, said Dr. Cheville. "Bandaging is very difficult because it's tricky to adequately compress the vulvar region," she noted, adding that she uses a specially designed bandage with Velcro straps and odor control pads. She recommends that unless physicians have training in lymphedema management, they should refer -- but she acknowledges the difficulty in finding well-trained therapists.

"There are very few therapists who have comfort and experience treating lymphedema, and especially genital lymphedema. Predominantly, these would be physical therapists, but some nurses and some occupational therapists do it as well."


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