This month AJN features the first of a two-part article on post–breast cancer lymphedema, a debilitating sequelae to treatment for breast cancer that’s characterized by the abnormal accumulation of lymph in the arm, shoulder, breast, or chest. In editing this article, I was struck by the sense of isolation reported by many of those who develop this condition, which can be visibly disfiguring and functionally disabling, and for which there is no cure. Yet according to the authors, many clinicians “seem unaware of the condition” and many breast cancer survivors don’t get the education and support they need either to reduce their risk for or to manage lymphedema.
In Part 1, authors Mei Fu and colleagues describe lymphedema’s pathophysiology and diagnosis; in Part 2 (forthcoming in August) they’ll discuss current approaches to risk reduction, treatment and management, and implications for nurses. Part 2 will offer a list of resources for patients, nurses, and others. I wondered whether any survivors were using the blogosphere to forge connections. Here’s what I found:
At Mothers with Cancer, a blog written by 20 women, lymphedema posts have their own category. One mom lauds her lymphedema therapist as a “genius . . . she finds answers to my other aches and pains. Yesterday, she discovered what’s been causing the incredible pain under my right shoulder blade.”
Laurie Kingston, a Canadian writer, is one of the aforementioned Mothers with Cancer; she’s also got her own blog, Not Just About Cancer. She posts about everything from her kids to cancer survivorship activism and what it’s like to wear a prosthesis when one has lymphedema.
And though not a blog, BreastCancer.org has a community forum on lymphedema. Currently active topics include compression sleeves, lymphedema and exercise, and patients’ experiences with low-level laser therapy, a relatively new treatment.