Lymphedema Diagnosis


There is not yet one standard set of criteria that everyone uses to diagnose lymphedema. Some experts believe that a difference of 2 centimeters (cm) or more in the circumference of the arm versus previous measurements — or versus the unaffected arm, if previous measurements aren’t available — suggests the presence of lymphedema. Others use a volume difference of 200 milliliters or more between the affected and opposite arms as an indicator of lymphedema.

According to Andrea Cheville, MD, associate professor of physical medicine and rehabilitation at Mayo Clinic, it’s important to look at the whole picture: not just size and volume measurements, but the appearance of the limb or other body part. “There is no one value or standard you can use to say, ‘OK, if you meet that you have lymphedema, and if you don’t, well then you don’t have it,’” says Dr. Cheville. “For example, there may be no size or volume changes in the arm, but you could have subtle hand swelling or pitting on the arm. So it’s important not to be too locked into arm measurements alone, as that can create a false sense of security. You also need to be watching the arm and looking for the loss of what we call ‘anatomic architecture’ — an inability to see the veins and tendons in the arm as clearly, or less pronounced knuckles, or skin that is less wrinkled and therefore looks younger.”

Dr. Cheville served on an expert panel that came up with guidelines for defining lymphedema for the National Cancer Institute (NCI). Researchers supported by the NCI use these guidelines as their basis for diagnosing lymphedema. The system assigns lymphedema and lymphedema-related fibrosis a grade, based not only on measurements but also changes in appearance. If you take part in a clinical trial for lymphedema, you might encounter these guidelines:

Grade Lymphedema of the Limb Lymphedema of the Trunk Lymphedema-Related Fibrosis (scarring of soft tissue under the skin)
Grade 1 5-10% difference between the affected and unaffected arm in volume or circumference, at the point of greatest visible difference; swelling or loss of anatomic architecture (usual shape and contour) on close inspection; pitting edema Swelling or loss of usual anatomic architecture on close inspection; pitting edema Soft tissue responds only minimally or moderately to elevation (raising the limb) or compression; texture is moderately firm or spongy
Grade 2 More than a 10-30% difference between the affected and unaffected arm in volume or circumference, at the point of greatest visible difference; obvious loss of anatomic architecture, skin folds, and normal shape Obvious loss of anatomic architecture, skin folds, and normal shape Marked increase in density and firmness; there may be “tethering” of the skin (changes in texture that make the skin look as if it is being pulled from within)
Grade 3 More than a 30% difference in volume between the two arms; major changes from the normal shape; interference with the activities of daily life; leaking of lymph through the surface of the skin (called lymphorrhea) Major changes from the normal shape; interference with the activities of daily life; leaking of lymph through the surface of the skin (called lymphorrhea) Very marked density and firmness with evident tethering
Grade 4 Disabling; diagnosis of lymphangiosarcoma (a rare tumor that can develop in cases of long-term, untreated severe lymphedema) Disabling; diagnosis of lymphangiosarcoma (a rare tumor that can develop in cases of long-term, untreated severe lymphedema)

If you’re not taking part in a research study, though, you’re unlikely to come across this grading system. Your lymphedema therapist is more likely to use a staging system like this one from the International Society of Lymphology:

Stage 0 (latent or subclinical lymphedema)

  • no visible edema (swelling)
  • no pitting (temporary indentation of skin when pressed)
  • sensations of local heaviness or tightness; these may be present for months or years before obvious swelling occurs

Stage 1 (early or mild lymphedema)

  • visible edema, with or without pitting
  • edema gets better when the limb is elevated

Stage 2 (moderate lymphedema)

  • visible edema, usually with pitting
  • hardened, thickened skin and tissue (as fibrosis worsens, pitting may disappear)

Stage 3 (severe lymphedema)

  • visible edema  
  • enlargement of the affected area
  • hardened, thickened skin and tissue that does not "pit" or indent when pressed upon 
  • lymph leaking through damaged tissue

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