Suffering in Shadows
Lymphedema, a cancer therapy side effect, can go unrecognized.
Shelley developed inflammatory breast cancer, an aggressive form of the disease. “Within the week, I...saw the oncologist and began chemo,” she writes. She then underwent a double mastectomy, eventually followed by 25 radiation treatments. “I had my surgery on a Friday and by the next Monday I began to have swelling in my left arm,” Shelley recalls, realizing right away that it was lymphedema. While she could hide the scars on her chest, the sleeve on her arm was another story: “When I returned to work I was asked a lot of questions.”
Fran, another breast cancer survivor, says one surgeon “dismissed my questions and told me not to worry about lymphedema because it ‘hardly ever happens.’” Her symptoms appeared as she underwent radiation treatment; fortunately, she knew to seek help. Despite the changes that this condition has wrought in her life, including the need to constantly protect her arm, Fran feels that she has “embraced and accepted both the emotional aspects and physical limitations of my lymphedema.”
These women’s stories are just two that appear in Voices of Lymphedema (Lymph Notes) regarding a disorder often understood only by those who either have it or treat it. Despite lymphedema’s low public profile, though, clients and therapists alike agree that while the condition may not be curable, it can be successfully managed.
Lymph, a fluid that fills the space between cells, travels through the lymphatic vessels. Lymph nodes, which help filter the fluid, occur along the vessels, concentrating in the groin, neck and armpit.
When lymph backs up it can cause swelling, heaviness, tightness, tingling, numbness or stiffness.
Gwen White, PT, co-author (with Jeannie Burt) of Lymphedema: A Breast Cancer Patient’s Guide to Prevention and Healing (Hunter House), compares it to a partially plugged drain. “If the drain is partially plugged up it will still drain as long as the stream of water is not too great,” she explains. “If the faucet is turned on high, the sink will start to back up because the drain can’t remove the amount of water that is coming into the sink.”
Primary lymphedema occurs as the result of an inherited defect. But anything that damages the lymphatic system can disrupt lymph drainage, including cancer and its treatments. Arm lymphedema following breast cancer may be the best known case, but this condition can occur in any part of the body. “I have even [seen] someone with swelling inside their mouth,” says White.
Lymphedema can develop immediately or years after cancer treatment ends. (One surgical technique that may reduce occurrence is the sentinel node biopsy, in which only two or three lymph nodes are removed instead of 10 or more.) And although there are ways to lower the risk—trying to not overuse or overheat the affected limb, having blood drawn and pressure checked on the unaffected one, protecting the skin from injuries and sunburn—nothing is foolproof. “I never want people to feel guilty that they did not do enough to prevent lymphedema,” White says. “People are always at risk once the lymph nodes have been compromised.”
If lymphedema does develop, find a practitioner who will provide the correct diagnosis, along with a properly qualified lymphedema therapist (the therapist may help guide you to the practitioner). Visit www.lymphnotes.com and www.lymphnet.org, site of the National Lymphedema Network (800-541-3259), for practitioner lists and discussions on acceptable certification.
Lymphedema is treated with complete decongestive therapy (CDT); it includes manual lymph drainage (MLD), a type of massage designed to stimulate lymph flow out of the affected area. This effect is reinforced by compression, provided at first by special short-stretch bandages (the common variety is too stretchy) and then by various types of compression garments and/or aids. The method used in each case “depends on the type of lymphedema, on what the patient can afford to spend, if the person needs daytime garments only or also nighttime compression,” says Alma Vinjé-Harrewijn, PT, CLT-LANA, co-author (with Ann Ehrlich and Elizabeth McMahon) of Living Well with Lymphedema (Lymph Notes). “The nighttime garments are inelastic, so they can be worn when you’re not moving.”
CDT also employs proper skin care, in the form of a daily cleansing and moisturizing routine, and exercise. Vinjé-Harrewijn says Nordic walking, or walking with poles, “is especially good because it helps people who’ve had breast cancer to stretch the shoulder.”
Education, a crucial CDT component, covers how to manage lymphedema both physically and emotionally. “Some patients find it can be very depressing to develop lymphedema,” White says. “I often encourage people to seek professional help.”
Diet is another part of self-care. “Eat whole foods, with a good variety of foods,” recommends Vinjé-Harrewijn. “Coconut oil has medium-chain triglycerides that can be taken up by the bloodstream instead of by the lymphatic system, which is already burdened by having lymphedema.”
White suggests drinking eight glasses of water a day. But she says to cut down on caffeine; anything with a diuretic effect can drain water from the body, which allows proteins in the lymph to concentrate and support the growth of infectious organisms. Weight loss can help by reducing the amount of tissue lymph has to travel through. Finally, some people with lymphedema have also used horse chestnut, flavonoids, Pycnogenol, selenium and other supplements (such usage should always be monitored by a trained practitioner).
Lymphedema can certainly be unsettling. But White stresses that you don’t have to suffer with it: “There is help available and it is very effective.”