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Diagnosing Lymphedema  

ASCO podcast by Dr. Judith Nudelman regarding Living With Lymphedema

What does Lymphedema look like?







Diagnosing Lymphedema

"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,’”
Andrea Cheville, MD Mayo Clinic :

Lymphedema is a “clinical” diagnosis as there is no universal standard or method for diagnosing it. This lack of diagnostic criteria makes it very difficult to interpret studies—as they may all use different definitions of lymphedema. This variability leads to the uncertainty about about the prevalence, incidence and risk of developing lymphedema.
For breast cancer lymphedema the incidence of lymphedema is quoted as around 7% with “just” sentinel node biopsy, but rising to 25% with radiation, chemotherapy and additional lymph node removal. (
Carol Doeringer has complied a grid of the quotes lymphedema risk for breast cancer lymphedema based on the scientific literature. The wide variability is due to the lack of a diagnostic standard:

Jane Armer PhD has studied women for almost 10 years, using methods of perometry (a laser volume measurement), arm circumference measurements, surveys. The initial data, published after 30 months of follow up showed: “At 30 months post-treatment, LE incidence ranged from 41-91%, with 2cm being the highest estimation method and self-reported signs and symptoms (SS) the lowest.”
30-MONTH POST-BREAST CANCER TREATMENT LYMPHOEDEMA, Armer JM, Stewart BR, Shook RP. J Lymphoedema. 2009 Apr 1;4(1):14-18

While scientists and clinicians attempt to standardize the diagnosis by establishing diagnostic criteria, such as a 10% volume increase, a 2 cm increase in limb circumference, early lymphedema may present as symptoms or subtle changes in the area, such as change in skin color and subtle obscuring of tendons and boney prominences.
DIAGNOSING BREAST CANCER RELATED LYMPHEDEMA IN THE ARM Anthony Stanton, Stephanie Modi, Russell Mellor, Rodney Levick, Peter Mortimer, J Lymphoedema, 2006, Vol 1, No 1 P.15
Additionally, it’s relatively easy to measure arms (and legs) as they are simple cylinders, but hands, breasts, chests, trunks and abdomens are extremely difficult to measure.
Current diagnostic methods:

1) Calculating the volume of a limb based on multiple measurements: the significant swelling is felt to be between 5-10%. Additionally, some clinicians feel that a 2 cm discrepancy is significant. There is little data to support this, and Armer’s study showed that if a single measurement is used, it would diagnose lymphedema in 91% of women she studied.

2) Perometry: a sensitive laser measurement that can accurately calculate the volume of arm or leg, a significant enlargement is felt to be between 3% and 10%. Perometry works best on arms and legs, and is less useful for hands, feet and other body parts.

3) Bio-impedance: measures fluid levels in tissue. Although relatively easy to use, bio-impedance is not FDA cleared to diagnose lymphedema and serial measurements are helpful in aiding in the diagnosis of lymphedema, but the entire clinical scenario must also be evaluated.

4) Symptom surveys: validated symptom surveys have been shown to be sensitive for the diagnosis of lymphedema.

5) Lymphscintography: an imaging system for the lymphatic system, it requires skillful interpretation and can be very useful in demonstrating lymphatic function.

So, in summary, there is no single method that absolutely diagnoses lymphedema. Patients need to be concerned when they are told that they can not have lymphedema due to a lack of volume increase: this is arbitrary and lymphedema may exist without a certain volume increase, or in fact without any measurable swelling.

People at risk of lymphedema should get measurements of the affected area—if possible—so that they can correlate their symptoms with any swelling. Symptoms are important and unfortunately, are often discounted in studies that demonstrate that women report swelling/warmth/tenderness/decreased movement, yet have no measurable swelling. In studies, these women are reported not to have lymphedema—yet they very well might have impaired lymphatic function and would benefit from evaluation and treatment that is personalized to their degree of lymphatic impairment.

Lymphedema is not static. People swell and drain. They congest and decongest. Their lymphatic function can improve, or deteriorate. A person’s history and symptoms are a crucial components of diagnosing and treating lymphedema.

Page Last Modified 04/15/2015

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