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Lymphedema: Part 1 - What is it?

In this multi-part series, Dr. Correa will discuss lymphedema - what it is, why it happens, and how you can prevent, treat, and manage it on your own or with help from your Certified Lymphedema Therapist!


Lymphedema is the medical term used to describe swelling of a particular area of the body which is caused from damage to the lymphatic system. Women with breast cancer are at risk for developing this swelling if they have had lymph nodes removed or if they have had radiation (or both). Swelling is most commonly seen in the arm, back, and chest area surrounding the side were surgery and radiation are performed.

It may sound scary, but lymphedema is a preventable, treatable, and manageable condition that may not occur in every woman. While percentages do exist in the literature, in my professional experience, risk does not appear to necessarily correlate to the number of lymph nodes taken, age, race, or years out from surgery. I have worked with women who had 20 lymph nodes removed 20 years ago and have never had swelling (just seeing me for some shoulder dysfunction), and I've worked with women who had a single sentinel node biopsy 1 year ago who found their arm began swelling after a plane ride. Risk can, however, be related to certain environmental or life-style factors, so having an understanding of what it is, how to prevent it, and when to seek help is key.

Why Were my Lymph Nodes Removed?

The Lymphatic System is responsible for keeping our bodies clean of normal cellular byproducts and debris and protecting against foreign invaders. In some cases, the lymphatics have detected and moved cancer cells into the lymph nodes in an attempt to destroy them, but cancer cells can escape and end up in the circulatory system where it can easily spread to other parts of the body. This is why it is important that the lymph nodes be removed, and unfortunately, what places the involved area at risk for becoming congested with fluid; AKA Lymphedema.

Lymphatic Physiology and Lymphedema

The Lymphatics are an important part of our body’s defense and cleaning mechanism; the Immune System. It is also tied in with our Circulatory, Nervous, Integumentary (skin), and Filtration Systems! As red blood cells are moved throughout our body, carrying with them vital oxygen and nutrients to our tissues, they are also surrounded by other macromolecules that can penetrate the wall of the circulatory vessel and end up in the interstitium (extracellular space). Some of these molecules include proteins and water.

These proteins are not the ones we eat. They are a special kind produced by the liver and are hydrophilic, meaning “water loving”. As they infiltrate the interstitium, they attract water with them and create a pool of fluid called the lymphatic load as any debris and cell fragments are collected in the surrounding area. This lymphatic load is then picked up by the lymphatic system's collector vessels (like long straws) to be filtered through the lymph nodes and then dumped back into the circulatory system where everything is filtered again through the kidneys. The final result is a collection of toxins, cellular debris, unneeded molecules, and water which the body flushes out via urination, bowel movement, and/or sweating.

When the Lymphatic System is damaged via surgical removal of lymph nodes and/or radiation, the uptake of the lymphatic load is impaired and becomes slow or sluggish. If protein and water are not removed from the interstitium and filtrated out of the body, the protein will continue to attract more and more water and fluid can build up. This results in the limb or body part becoming swollen.

Important Note: Diuretic medications are often used to resolve edema (types of swelling not caused from lymphatic system damage) in people who have heart or kidney failure. This form of treatment is unsuccessful in people with lymphedema because it does not remove the protein from the interstitium.

Let's Clarify Some Terms

There is a lot of terrifying information floating around out there regarding lymphedema. Most commonly, people look to the internet or friends for guidance only to find the information confusing, misleading, and inconsistent. Lymphedema is referred to as a “chronic, incurable, progressive disease” process and is thought to be an inevitable side effect of breast cancer treatments. So, let’s break down what each of those terms actually mean:

  • Incurable = the lymph nodes don’t grow back

    • NOTE: Lymphedema is preventable, treatable, and managable!

  • Chronic = you will continue to be at risk over your life span, much like any other "chronic" condition such as diabetes. But like diabetes, there are things you can do to prevent the secondary medical complications associated with the condition.

  • Progressive = moves through stages

    • NOTE: lymphedema treatment (called Complete Decongestive Therapy), reverses these stages!

      • Stage 0 – No signs/symptoms

        • NOTE: from the moment you leave surgery (if nodes were removed), you are a Stage 0 (and may stay there!)

      • Stage 1 – Swelling comes and goes

        • 1a – no observable or measurable difference between the arms, but the arm feels strange; tingling, heaviness, fatigue, etc…

        • 1b – the difference between arms can be seen or measured, but still comes and goes with rest, elevation, drinking water, etc..(we will discuss "tools in your toolbox" later)

          • NOTE: Stage 1b is the best time to seek a therapist’s help!

      • Stage 2 – Swelling does not improve with any of your self-care and prevention "tools"

        • Fibrosis may be present

          • Fibrosis = hardening of the skin due to lack of oxygen and nutrients coming from the circulatory system (affect of prolonged swelling)

          • This is treatable if addressed early!

      • Stage 3 – severe swelling that does not improve

        • Permanent changes

        • Wounds

        • Secondary health complications

          • Rare and usually the result of multiple other medical co-morbidities (medical complications) and neglect of the lymphedema

Early on, swelling may not be detected by the naked eye at all. Usually, women will report that their arm feels heavy, tingly, tired, or even just different in a way they cannot describe. This very early stage is the time to start being aware of changes in the arm and to use some prevention tools to reduce the likelihood of further increases in symptoms. In the next installment of this Blogucation series, we will be covering Lymphedema Self-Care and Prevention "Tools in your Toolbox" and busting some common myths surrounding lymphedema and exercise!

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