"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
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
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.
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