A River Runs Through it – Until it Doesn’t: Lymphedema Part 1
One summer afternoon, I drove past a group of young women entering a restaurant. All clad in floaty sleeveless blouses, their arms swung loose and casual, naked in the golden sunlight. I looked on with a yearning for what I had once taken for granted. Both of my hands and arms were shoved into compression garments, wrapped like sausages from fingertip to shoulder despite the searing Phoenix heat. Because of dual diagnoses of lymphedema, I will never again experience the simple, exquisite freedom of bare arms.
We often hear the body is made mostly of water but where does all that fluid live? Turns out, much of it resides in our mysterious lymphatic system; a component that is key to physical functioning but poorly understood even by most physicians. The lymphatics represent an entire ecosystem operating just beneath our skin that functions as the body’s personal recycling plant; balancing fluids, delivering nutrients, removing waste, and cleaning up toxins. Tiny streams of fluid move through miniature, pulsing gates that operate like one-way streets. Once the fluid moves along the one way street, it can’t do a U-turn; so it travels on through the body with remarkable efficiency. I took no notice of the lymphatics until they stopped functioning due to the complexities of Inflammatory Breast Cancer (IBC). Lymphedema is the disease process that results.
In the United States, the most common cause of lymphedema is breast cancer and its treatments. About 20% of breast cancer patients develop lymphedema in the months or years following treatment. I was naïve enough to believe that if I awoke from my mastectomy without lymphedema I’d be home free. Later, I discovered that lymphedema could develop years after cancer treatment and that, especially with IBC, there is no escape from the risk.
Growing up alongside mountain streams in Montana, I noticed that water always found its way. Trickles of melting snow formed small streams that eventually transformed into deep rivers punctuated by frothing rapids. Traveling underground or over boulders, sometimes creating mythic canyons, not much blocks the course of water. And yet, in my own body, cancer interrupted nature’s inherent wisdom and brought to a halt the smooth passage of lymphatic fluid through my arms and torso.
Although lymphedema may impact anyone with breast cancer, it is inextricably linked with inflammatory breast cancer. Early in the disease process, the cancer cells of IBC block lymphatic vessels in the skin covering the breast. This grants the IBC breast its typical appearance as swollen, red, and hot to the touch. Cancer cells then recruit the lymphatics in their dirty work, affirming IBC’s reputation as an aggressive disease.
Although I had realized my risk in the months following my surgery, I held out hope that I would be spared the challenges of lymphedema. It was not to be. Nine months after my first mastectomy, I received the official diagnosis. My arm and hand swelled enough to be clinically measurable but the signs were there even before my surgery. I knew this because I’d signed on for a clinical trial at MD Anderson Cancer Center. What I didn’t anticipate was the extent to which lymphedema would drastically alter my life, including changing the type of clothing I could wear, the loss of my most treasured leisure activities, and the unrelenting campaign to move lymphatic fluid by artificial means, all day and all night. Constant management of lymphedema reminds me daily of the quest to survive Inflammatory Breast Cancer.
Note: The clinical trial and tales of non-surgical and surgical interventions for lymphedema are topics of future blog posts.