Lymphedema, a painful (and, in its worst incarnation, potentially life-threatening) condition suffered by many breast cancer survivors, has long been seen as collateral damage from treatment. You have lymph nodes removed (as about 80% of us do at the beginning of treatment), you’re at risk for lymphedema. You have radiation, you may be at risk for lymphedema.
You’ve at least heard of lymphedema, right? It was the title of one of those little pamphlets the oncology nurse gave you after you’d been diagnosed. You know, the one you threw on the counter or stuffed in a grocery bag, vowing to read when you weren’t so distracted with thoughts of death. Only then you started treatment, and things got busy, and you never did get a chance to read that little printout.
When you have surgery on your breast, and one or more lymph nodes under your arm are removed to check for cancer, your whole system on that side is affected. Along with the nodes come some of the vessels; scar tissue blocks other vessels, and suddenly, the lymph system may not be able to do its job as efficiently and effectively. (Sometimes radiation causes scarring or inflammation of nodes or vessels, with the same negative effects.)
Lymph nodes are hard-working little nodules clustered in various parts of your body whose job it is to filter harmful bacteria and other infections out of the lymph fluid that circulates around your system. These harmful invaders are then destroyed by white blood cells. Bottom line, it’s your lymph system that helps you fight infection; you need it.
Lymphedema is the buildup of fluid in your arm, hand, or trunk signalling a partial failure of your lymph system. This buildup can range from “Gosh, why do my rings feel so tight today?” to “WOW, my whole arm is red and itchy and swelled up like a balloon!” It can appear immediately, or decades after treatment, so it’s a lifelong concern.
And it’s serious. Lymphedema is something you need to deal with, not ignore. It can turn into cellulitis, a painful and dangerous skin infection. Yet according to a study published recently in the Journal of Clinical Oncology, many women with lymphedema never receive an official diagnosis. Of 1,200 breast cancer patients in the long-term Iowa Women’s Health Study, which ended in 2003, 37% showed “persistent” signs of lymphedema; yet only 8 percent had been diagnosed with it.
Perhaps more disturbing, of the 37% with symptoms, a full 60% had never even heard of lymphedema. And of the 40% who knew what it was, less than 2% had actually sought treatment.
Is your arm or hand swelled, even if ever so slightly? If so, listen up. There’s effective treatment for lymphedema; decongestive therapy (a type of massage) helps drain your arm of fluid, while elastic arm and hand sleeves keep the swelling from returning.
Are you worried about insurance covering treatment? Know this: If you had a mastectomy and your group health insurance paid for it, that same insurance is required, by federal law, to pay for lymphedema treatment—as is Medicare.
