Many lymphedema patients are not receiving treatment


CHICAGO, Illinois, Dec. 17, 2018 – For post-cancer surgery patients who develop lymphedema, swelling in the arms or legs may become their new normal. They live with compression sleeves or stockings, perform daily checks of their limbs and stay alert for changes, pain or problems.

Since lymphedema (LED) may be complicated by a serious infection, these patients should be under professional care. But a new study finds that a significant percentage of cancer patients are not getting any care for their lymphedema, leading to a notable treatment gap. While 94 percent of breast cancer patients get help for lymphedema, only 75 percent of prostate cancer patients with LED are under treatment. Cancer surgery or radiation can damage the lymph system, which can result in lymphedema.

That was one of the findings of what may be the largest contemporary review of lymphedema patients and their treatment ever done in the U.S., (published recently in the Journal of Vascular Surgery: Venous and Lymphatic Disorders). Researchers examined more than 27,000 de-identified records in a data base of patients diagnosed with lymphedema. Breast cancer was the most common disease associated with lymphedema, accounting for a third of the patients, while advanced venous disease was the second most common cause at 10 percent.

“We found a significant treatment gap [between breast cancer surgery patients] and other patients with lymphedema,” noted vascular surgeon Dr. Thomas O’Donnell of Tufts University, lead author of the study. In addition to prostate surgery patients, patients with other conditions had lower lymphedema treatment rates: venous leg ulcers, 82 percent; melanoma, 82 percent; uterine cancer, 81 percent; ovarian cancer, 83 percent.

“The reasons why patients don’t seek treatment are not available,” O’Donnell said. “Maybe their physicians are unaware of possible therapies, or their condition is viewed as mild, or the patient declined to get treated.”

The body’s lymphatic system is critical to health. Besides fighting infection, healthy lymphatic vessels are responsible for absorbing extra fluid and proteins and returning them to circulation. When the lymph system is damaged or fails, chronic edema is the result.

Ignoring the symptoms of LED is not a good idea, Dr. O’Donnell noted. Even a small cut or bug bite on the affected limb may set the stage for a serious infection, he said, since a damaged lymph system struggles to combat infection. Moreover, letting the swelling continue untreated can cause scarring and a hardening of the skin and fatty tissue due to an inflammatory reaction. That makes it more difficult to treat as lymphedema worsens.

Since the lymphatic vessels are the third (but lesser-known) component of the circulatory system, patients who need medical care for lymphedema are likely to be referred to vascular specialists, who treat arteries, veins and diseases of the circulatory system. Surgery or radiation for cancer isn’t the only cause of lymphedema. It can occur during another illness, such as chronic venous insufficiency (CVI), recurrent infections, severe multiple sclerosis, a debilitating stroke or other immobilizing condition. Less frequently, the cause is genetic.

Swelling can occur up to three years after surgery, Dr. O’Donnell noted.

What can lymphedema patients expect during treatment?

In the first, acute phase, lymphedema is treated with a form of light massage that promotes lymph drainage out of the limb; compression bandaging to maintain the fluid reduction and skin hygiene.

In the home maintenance phase, patients learn to self-manage their condition, may be prescribed physical therapy and may wear compression garments. They might also receive machine-assisted compression using an “intermittent pneumatic compression” (IPC) device, which simulates manual lymphatic drainage.

Possible glimmers of hope

Some vascular and plastic surgeons are exploring surgical options for lymphedema in highly selected cases.

Fat removal. “There are two surgical concepts,” Dr. O’Donnell said. “In one, the surgeon debulks the limb, by removing the excess fatty tissue that accumulates when LED becomes advanced. Now surgeons are using liposuction and that’s become popular.” Microsurgery. “Lymphaticovenous anastomosis” is a delicate vascular surgery that connects a lymphatic vessel or a lymph node to a vein. While this technique has shown some success in a small number of patients, it has not been tested in randomized trials. A less invasive option: Some advanced types of programmable IPCs can be used at home, simplifying the process for those who previously went to a hospital or clinic for treatments.

Advanced forms of IPC have been shown to cut the rates of skin infections in half compared to conservative therapy or a simple form of IPC in a separate analysis of this same data base, as published recently in the Journal of Vascular Surgery: Venous and Lymphatic Disorders by the same group. (Full disclosure: Dr. O’Donnell is affiliated with one such company, Tactile Medical.)


Lymphedema Comorbidities and Treatment Rate in the United States. Journal of Vascular Surgery: Venous and Lymphatic Disorders. October 2018.
Health and Economic benefits of advanced pneumatic compression devices in patients with phlebolymphedema. Journal of Vascular Surgery. June 2018.