Lymphedema, an undertreated aftereffect of cancer, deserves more attention

Lymphedema specialist Johanna Murphy right, shows breast cancer survivor Anne Holman an exercise to treat her lymphedema at Georgetown University Hospital in Washington Tuesday, Dec 23, 2008. (AP Photo/Jose Luis Magana)

here is an aspect of cancer seldom, if ever, discussed. As we approach the end of Breast Cancer Awareness Month, this complex and potentially deadly aftereffect called lymphedema needs to be addressed. Few physicians discuss it with their cancer patients, and those who do seldom discuss options for care. There is limited access to proper treatment because few medical professionals have the required skill set, and few insurance plans cover the needed tools for disease care and management. Medicare doesn’t cover these tools at all.

Cancer patients aren’t the only ones impacted by lymphedema. In October 2009 I was two months into a health program of daily, hourlong exercise sessions: three days of cardio, three days of stationary bicycle, one day of aqua aerobics. Once, putting my socks on after cycling, I noticed my left ankle was swollen. Thinking I had banged it against something, I paid it no mind. It continued to swell. The health program required a monthly visit to its doctor, who suggested a visit to my primary care physician at Group Health, now Kaiser Permanente.

My physician ordered X-rays of the ankle. Nothing. She thought it might just be a sprain and recommended that we “watch it for a while.” Two months later, it was still swollen. By the time the 6-month-long program was over, my ankle had gone from egg size to navel orange. I raised concerns in subsequent doctor’s visits and was told repeatedly that I just needed to lose more weight. I found myself staring at fat women’s ankles. Extremely few had swollen ankles.

When I qualified for Medicare, I switched medical plans. By then both ankles were swelling: the left to grapefruit size, the right to navel orange. I couldn’t wear many types of shoes. My new doctor at the Polyclinic listened carefully and finally sent me to see Dr. Jeffrey Bernstein, a vascular surgeon. He looked at my ankles and the thickness of my legs and in just a few moments diagnosed lymphedema caused by an underlying genetic disorder.

I had never heard of lymphedema. Dr. Bernstein gave me what little information was available and told me to get compression garments to manage the lymphedema. I asked what type of specialist I needed to see. The answer: none. There are no physicians who specialize in lymphedema. In fact, doctors get very little training about it in medical school. Following my own curiosity, I began researching online. The condition is not curable, but lymphedema, I discovered, is manageable.

A short primer on the lymphatic system, the body’s bacterial sewage drainage system. While veins and arteries carry blood and nutrients throughout the body, the lymphatic system picks up the trash, cleanses it and deposits any remaining, cleansed fluid into the heart to go back into the bloodstream. According to the National Library of Medicine, that trash, known as lymphatic fluid, consists of “white blood cells, especially lymphocytes, the cells that attack bacteria in the blood, and fluid, called chyle, from the intestines, which contains proteins and fats.” Lymph nodes are the sewage treatment centers where the cleanup takes place.

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