As there is no gold standard for
diagnosis, the criteria will vary and that adds to the confusion
around how many people develop it.
The methods used to diagnose lymphedema are:
1) Arm circumference: many points on both arms are measured, and
a 2 cm difference is considered significant. A recent review for
Medicare pointed out that the 2 cm "rule" was created in one
study, but has been widely accepted as significant.
2) Symptom Surveys: there are validated
surveys, created by researchers such as Jane Armer PhD, that ask
about symptoms and can be used to make a diagnosis.
3) Measurement devices:
Due to the lack of a gold standard, the diagnosis of lymphedema
is a variable diagnosis, depending on what criteria are applied by
the clinician, and this variability leads to the wide range of
estimates about how common it is--from 5%-91%.
Bioimpedance: measures fluid load in
the tissues, and may be less sensitive than other devices
Perometry: is a laser measurement
which is most accurate on arms (as opposed to hands) but is
a very accurate measurement, and is used in the UK and some
US medical centers to follow women and to refer for therapy
is there is a 3% arm volume increase
Water Displacement method: the arm is
placed in a cylinder of water and the displacement is
30-MONTH POST-BREAST CANCER TREATMENT LYMPHOEDEMA,
Shook RP. J
Lymphoedema. 2009 Apr
In an article published in Lymphology, AW
Stanton argued that early lymphedema may not meet any of these
measurement criteria, and may present as symptoms of heaviness,
tightness and subtle fluid collections that obscure tendons.
(attached as diagnosing lymphedema)
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
There's a really
interesting paper that was published in the Journal of Clinical Oncology
in November, 2008,
comparing objective evidence of lymphedema
(measurable changes in arm circumference) with patients' perceptions of
arm swelling plus avoidance behaviors women adopted to reduce their risk
of developing lymphedema.
The citation of the
McLaughlin, S.A.: Prevalence of lymphedema in women with
breast cancer 5 years after sentinel lymph node biopsy or axillary
dissection: Patient perceptions and precautionary behaviors.
of Clinical Oncology, Vol. 26, No. 32 (November 10), 2008: pp.
This was a prospective
study designed to determine the prevalence of patient-perceived arm
lymphedema after sentinel node biopsy alone as compared with sentinel
node biopsy that was followed immediately by
axillary lymph node dissection
because of a positive sentinel node. The authors also investigated
medical and surgical factors that were associated with development of
patient-perceived lymphedema; avoidance behaviors used by women to
reduce their risk of developing lymphedema; and the relationship between
objective measurements of arm swelling and patients’ perceptions of arm
The study involved 936
women, 600 (64%) of whom had sentinel node biopsy alone and 336 (36%) of
whom had sentinel node biopsy followed by
axillary lymph node dissection.
All patients had their baseline arm circumference measured at 2 sites at
the time of their sentinel node biopsy. The women were interviewed
extensively and their arm measurements were re-taken from 2.7 to 8.0
years later (the median interval was 5 years). The median time to the
follow-up visit in this study was considerably longer than in most
previous studies of lymphedema risk.
There were 4 main
groups of patients, based on the results:
1) 84% of patients did
not perceive their arm to be swollen and had "normal' arm measurements.
2) 7% of patients
thought their arm was swollen even though no swelling could be detected.
3) 4% of patients did
not feel any swelling even though their arm was measurably swollen.
4) 5% of patients
perceived that their arm was swollen and did have measurable swelling.
Regardless of the type of axillary surgery, most patients had symptoms
that were consistent with their arm measurements: either they felt no
swelling or discomfort and did not have measurable changes, or they did
sense discomfort and swelling and the changes met the "> 2 cm" threshold
for lymphedema diagnosis. Of the 109 women who thought they had
symptoms of lymphedema (perception of arm swelling) at the time of the
follow-up examination, only 45 (41%) had objectively measurable
lymphedema (L >= 2 cm).
The vast majority of
women practiced lymphedema prevention behaviors to reduce their risk of
lymphedema, regardless of the type of axillary surgery they had. Women
who had sentinel node biopsy/axillary
lymph node dissection used
more avoidance behaviors than women who had sentinel node biopsy only.
Women whose arms were measurably swollen at the follow-up visit followed
more preventive behaviors than women whose arms were not swollen; and
women who had self-reported symptoms of lymphedema (regardless of
whether it was measurable) followed more precautions than women who did
not have symptoms.
The authors pointed
out that the threshold of L > 2 cm is a widely accepted definition of
lymphedema, but it is arbitrary and it does not consider patients’
perceptions of arm discomfort. They said they undertook this study with
the premise that “a patient’s perceptions are ultimately the most
important outcome to that individual patient.”
They also noted
that, “Data from this present study reveal
considerable discordance between objective and subjective measures of
lymphedema. Using standardized arm measurements, patient interview
data, and a validated instrument, we demonstrate that rates of
lymphedema differ depending on how it is defined. This variation
suggests one method is not adequate to accurately define the prevalence
of lymphedema after axillary surgery.”
Discrepancies between patients’
perceptions of arm discomfort and actual arm measurements suggest
that additional study is needed to determine which symptomatic
patients who do not have measurable changes will go on to develop
lymphedema, and whether or when those patients who already have
lymphedema but do not sense it, will develop symptoms of arm
The authors suggested
that, ideally, the diagnosis of lymphedema would be based on both
objective measurements and assessment of patients’ symptoms.
Correlating patients’ symptoms of lymphedema with their arm measurements
would help determine how lymphedema affects quality of life. The
authors noted that they were not surprised to find women practicing
preventive measures to protect their at-risk arms if they already had
measurable swelling or if they perceived their arm was swollen.
However, they said, a large majority of women who are at low risk of
lymphedema because they had sentinel node biopsy still follow
restrictive behaviors that could be affecting their quality of life,
even though those behaviors might not be warranted.
work is needed to determine the extent to which patient-reported arm
symptoms may represent an early manifestation of, or signal increased
risk for, subsequent arm swelling. Most women undergoing
alone, despite being at low risk for lymphedema, actively avoid
behaviors thought to increase their risk. Patient-reported arm
symptoms, whether or not they were accompanied by measurable arm
swelling, appear to prompt more precautionary behavior. To enable the
population of breast cancer survivors to further improve the quality of
their lives, additional study is needed to better understand how
objective measures and subjective perceptions of lymphedema are related
to each other, and whether avoidant behaviors reduce the risk of
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