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Breast cancer patients: Stanford launches lymphedema registry study

Xeni Jardin at 9:48 am Tue, Nov 6, 2012

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Lymphedema occurs in about 7% of breast cancer patients who have undergone sentinel lymph node biopsy (to see if disease has spread to these lymph nodes), and in greater percentage of patients whose nodes end up being removed (because one or more contain cancer) and patients who receive radiation therapy after breast surgery. Lymphedema is basically a chronic swelling of the affected arm, caused by trapped lymph fluid. It can be disabling, disfiguring, and extremely painful.

"Once lymphedema develops, it is permanent," says my friend Dr. Deanna Attai, a breast surgeon in Burbank, CA. "Physical therapy can help minimize swelling and other complications, but there is currently no cure. Early recognition and prompt treatment definitely makes a difference."

Dr. Attai points me to news that Stanford University has opened a national registry study to gather information from breast cancer patients with and without lymphedema. "The goal is to gain information on what type of monitoring is being performed and how that might impact outcomes," she explains. More here and here.

I'll be enrolling, for sure—I'm at high risk, personally, because of the specifics of my treatment. If you or a loved one has breast cancer and meets the study criteria, pass it on.

Boing Boing editor/partner and tech culture journalist Xeni Jardin hosts and produces Boing Boing's in-flight TV channel on Virgin America airlines (#10 on the dial), and writes about living with breast cancer. Diagnosed in 2011. @xeni on Twitter. email: xeni@boingboing.net.

MORE:  breast cancer • cancer • crowdsourcing • data • Health Care • women

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  • chgoliz

    And don’t forget: the swelling and tenderness in an area you *know* you’ve had cancer cells is very very scary.  You end up scheduling an ultrasound to make sure it’s “only” lymphedema.  Money, time, stress…..