Getting a Diagnosis of Lymphedema

Being diagnosed with lymphedema can be challenging. Many of you may have struggled without a diagnosis for far too long. Unfortunately, there is no single official diagnostic criteria for determining if someone has lymphedema. This becomes even more complicated if you have primary lymphedema, where the symptoms may have been present since birth or have been around for a long period of time and gradually worsened.

There are some diagnostic or imaging tests that can be performed to help with diagnosis. However, a physical exam and thorough history of symptoms are typically key to a correct diagnosis. Often history and physical examination alone are used to make the diagnosis. Your medical professional needs to make sure there are not other significant medical conditions that can also cause swelling or contribute to your symptoms. You will be asked many questions about when your symptoms first started, how they progressed, and what other medical conditions or surgeries you may have had. It is important to share if you have ever had infections in the area of the body that is affected.

During the exam, your medical professional will look at your entire body. Even if it is suspected to be secondary lymphedema, which is only found in the at-risk area, your medical professional should examine your skin and soft tissues, lymph nodes, venous system, and swollen body parts. 

Imaging

Imaging technologies such MRI, CT, or ultrasounds can be used to see if there is a collection of extracellular fluid in the tissue.Bio-impedance testing can measure even small, clinically imperceivable amounts of fluid, and can be used to detect early lymphedema. However, these types of tests cannot detect the cause of the swelling. Lymphoscintigraphy is a type of imaging that uses nuclear medicine to see lymph vessels and lymph nodes. It can show if your lymphatic system has any abnormalities in lymph flow or structure.

Who Should Diagnose Me?

In the U.S., there are very few special doctors for lymphedema that can diagnose and prescribe treatment for you. If your doctor thinks you may have lymphedema, it is important that they write a prescription for you to be evaluated by a Certified Lymphedema Therapist (CLT). You will need a prescription that states, “Evaluate and treat for lymphedema of [the body part].”

It is important to note that while CLTs are not allowed to diagnose conditions in the U.S., they can often aide the physician in clarifying the correct medical diagnosis. Finding a CLT can be challenging, but it is important to find a qualified therapist.

Other Ways Lymphedema is Diagnosed

Limb measurements have been a standard way of diagnosing lymphedema for decades and have been shown to be accurate1. The International Society of Lymphedema (ISL) recommends that clinicians use simple limb volume assessments to determine severity and assist with staging (minimal <20% increase, moderate 20-40% increase, and severe >40% increase2.) Other factors considered are extensiveness of swelling, presence of infections, inflammation, and other descriptors.

For breast cancer related edema and patients followed over time, the National Lymphedema Network (NLN) recommends professional referral to a Certified Lymphedema Therapist any time there is a >=2cm change in any of the circumferential measurements or a >5% volume change to the at risk limb. A minimum of six measurements per limb are recommended. Measurements should be done by a trained medical professional.

1. Position Statement of the National Lymphedema Network. Topic: The Diagnosis and Treatment of Lymphedema. Updated Feb. 2011.
2. The Diagnosis and Treatment of Peripheral Lymphedema: 2013 Consensus Document of the International Society of Lymphology. Lymphology 46 (2013) 1-11.
3. Position Statement of the National Lymphedema Network. Topic: Screening and Measurement for Early Detection of Breast Cancer Related Lymphedema. Updated December 2013.

lymphedema CT imaging scan