Cancer's little-known aftershock

25 Sep 2007, Brownville, Texas, USA --- A patient, 54 with lymphedema in the right arm, in a hospital in Texas. The lymphedema is caused by removal of lymph nodes during a mastectomy on her right side. --- Image by © Bob Daemmrich/Corbis
25 Sep 2007, Brownville, Texas, USA --- A patient, 54 with lymphedema in the right arm, in a hospital in Texas. The lymphedema is caused by removal of lymph nodes during a mastectomy on her right side. --- Image by © Bob Daemmrich/Corbis (Bob Daemmrich)
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By Ranit Mishori
Special to The Washington Post
Tuesday, November 9, 2010

It's the aftershock of cancer surgery, a complication that breast cancer survivor Bonnie Pike of Phoenix calls "cancer treatment's dirty little secret," a nasty surprise that sneaks up on you.

Lymphedema, a painful and chronic swelling of the lymph nodes, may affect up to 70 percent of women who have undergone surgery or received radiation for breast cancer. Men who have undergone prostate cancer surgery often experience it as well. Yet the condition, estimated to afflict 3 million to 5 million Americans, is rarely discussed by doctors; it is sometimes ignored and frequently misdiagnosed, and it routinely goes untreated.

"My surgeon said he'd never had anybody ever develop it. . . . He still says that. It is just really hard for doctors to recognize it, for some radiation oncologists to admit" that it happens," Pike says.

Lymphedema is the accumulation of fluid at or near the site of cancer surgery - in the groin, the hands, the arms, the legs or the chest - as result of a blockage in the lymphatic system. That's the network of vessels running the length of the body through which lymphatic fluid travels to protect the body against invaders.

Scarring from surgery or radiation can cause such a blockage and the consequent buildup of fluid. This results in swelling, which in early stages can feel like nothing more than a slightly distracting tingling. Over time, however, the swelling can get worse, becoming painful, chronic and debilitating: restricting movement, impeding daily activities and requiring constant care. And once lymphedema appears, it can be hard to get rid of.

Says Judy Nudelman, a family physician at Brown University who is also a chronic lymphedema sufferer, "It affects everything I do," from playing tennis and getting dressed in the morning to flying in airplanes and even just sitting in the sun. "It's like everything I would do without thinking has to be thought through again," says Nudelman, whose lymphedema began after breast surgery.

People with lymphedema, according to a study last year in the journal Family Relations, tend to drop out of many activities, "either modifying the way they participated or not taking part."

Cancer surgery does not always lead to lymphedema, and there can be other causes of the painful condition. But there is strong evidence of cause and effect when cancer surgery is performed, because it often involves a surgical examination of nearby lymph nodes to determine whether the cancer has spread there as well. It does not really matter what kind of cancer is involved - whether it's prostate, melanoma, ovarian or something else - for there to be a risk of lymphedema, though most research has focused on its association with breast cancer.

Feeling abandoned

Yet as painful and common as lymphedema can be, it still gets very little attention in the medical literature, and, according to increasingly vocal patient groups, it is infrequently mentioned by doctors when discussing an upcoming cancer surgery or radiation treatment.

A Stanford University survey several years ago found that, on average, the lymphatic system gets only 15 minutes of attention during four years of instruction in medical school, and lymphedema may get no mention at all.

For Nudelman, who set out to raise awareness after her own problems began, one benchmark for this lack of interest is how often she hears that, as in her own case, lymphedema is "not even in the consent form" patients sign before surgery or radiation.

As a result, people who develop lymphedema after treatment often have a difficult time finding help for it. Pike, for instance, ended up going from one doctor to another after her a bilateral mastectomy resulted in lymphedema in both arms and her chest, and tried therapies that made things worse.


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