Lymphedema is often thought of as a breast cancer complication, but it shows up across a wide range of diagnoses. A one-page fact sheet from the Lymphedema Advocacy Group (LAG) and the Lymphedema Education & Awareness Project (LEAP), Lymphedema: Not One Disease, makes that point with numbers. Here is a summary for therapists and providers.
The big picture
Chronic lymphatic system failure affects an estimated 3 to 5 million Americans. About 10% of cases are primary (congenital) and 90% are secondary (acquired).
Primary lymphedema: about 10%
More than 40 rare conditions are linked to primary lymphedema. Some you may see in practice:
Milroy's disease (congenital) and Meige disease (lymphedema praecox)
Lymphedema tarda (onset after age 35)
Lymphedema-distichiasis syndrome
Turner syndrome and Noonan syndrome
Klippel-Trenaunay syndrome and Parkes-Weber syndrome
Yellow nail syndrome and Hennekam syndrome
Lipedema, which is also on LAG's list
These patients often need lifelong compression, starting at a young age, and many need custom flat-knit garments.
Secondary lymphedema: about 90%
Cancer-related, about 68% of all cases. Overall, about 15.5% of cancer patients develop lymphedema. Estimated rates by cancer type from the fact sheet:
Breast: 40%
Sarcoma: 30%
Gynecologic: 20%
Melanoma: 16%
Genitourinary: 10%
Head and neck: 4%
Not cancer-related, about 22% of all cases. Causes include burns, ilio-femoral bypass, infection, paralysis, radiation, rheumatoid arthritis, surgery and trauma.
Why it matters for referrals
Screen beyond breast cancer. Sarcoma, gynecologic, melanoma, GU and head and neck patients are at real risk. So are patients after vascular surgery, burns, trauma or repeated cellulitis.
Diagnosis drives coverage. Under the Lymphedema Treatment Act, Medicare covers compression for lymphedema from any cause, primary or secondary, when it's documented. Note the cause and the affected areas in the chart.
Match the garment to the area. Head and neck, trunk, genital and hand involvement often need specialty or custom garments. Our fitters can help you choose.
To refer, call (800) 883-1549, text (517) 657-5223, use our referral form, or order on Parachute Health. Measurement forms are on our Forms page. See also 6 Things to Know About Lymphedema.
Source: "Lymphedema: Not One Disease," Lymphedema Advocacy Group and Lymphedema Education & Awareness Project; statistics as cited on the fact sheet (J Am Coll Cardiol 2008; Vasc Med 1998; Clin Genet 2010; Cancer 2010; J Clin Oncol 2009; Ann NY Acad Sci 2008; Eur J Cancer Care 1996). Learn more at LymphedemaAdvocacyGroup.org and LymphedemaProject.org.
