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Diagnosing Lymphedema  

What does Lymphedema look like?







Diagnosing Lymphedema

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:
  • 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 measured.
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%.

30-MONTH POST-BREAST CANCER TREATMENT LYMPHOEDEMA, Armer JM, Stewart BR, Shook RP. J Lymphoedema. 2009 Apr 1;4(1):14-18

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 paper is:

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.  Journal of Clinical Oncology, Vol. 26, No. 32 (November 10), 2008:  pp. 5220-5226.

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 swelling.

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 discomfort.

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.

Further 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 sentinel node biopsy 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 lymphedema.”


Page Last Modified 09/29/2015

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