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Common Misconceptions about Lymphedema and Advances in Treatment

Common Misconceptions about Lymphedema and Advances in Treatment

By Dr. Stanley Rockson, LE&RN Scientific & Medical Advisory Council Founding Chair

This is a 10-minute read.

When I entered the medical field about 45 years ago, the prevailing wisdom was that the lymphatics are a kind of sewer system that takes all of the unpleasant stuff from the body and flushes it away. That’s quite a misconception, and it’s one of several that we’ll cover in this article.

In addition to the common misunderstandings about lymphedema and why these are incorrect, I’ll also cover what we’re learning from emerging research, the biological and genetic connections involved, new advances in treatment, and the role of education for our patients.

Common Misunderstandings and Mysteries of Lymphedema

We hear a lot about toxins in relation to lymphedema: toxin buildup, toxin flushing, toxins poisoning the body. But this really comes from a fundamental misconception about how the lymphatic system works.

Toxin buildup isn’t the problem. We don’t have toxins traveling throughout the lymph. In actuality, toxins are handled by the liver or are excreted by the kidneys. Unfortunately, we see this stereotype perpetuated in lifestyle magazines and other entertainment sources that misunderstand the science involved.

When there is a problem in the lymphatic system, it’s not like a toxic clog that prevents a house’s pipes from draining correctly. That’s the wrong mental image to use.

Instead, think of a malfunctioning lymphatic system as a house that’s full of termite damage, where the entire architecture of the body has become abnormal. Sure, it may start as fluid accumulation, perhaps even in a single location, but the tissues become so altered throughout the body that the entire system changes for the worse.

The second major misunderstanding about lymphedema involves why some people develop it and others do not. This isn’t a misconception as much as it is a mystery to be solved. If some people can avoid developing lymphedema due to a biological or genetic difference, what can we learn from that? 

Breast cancer is the most-studied context within which we can learn about the development of lymphedema. Each category of cancer has a percentage of people who are impacted by lymphedema during and after treatment.

It’s clear that the bodies of some individuals have learned to coexist with the damage caused to the lymphatics and some have not. There is a tolerance variance among people. Some people have damage but they never develop lymphedema. Why? This is a realm of medicine that holds much opportunity for future research.

Biology and Lymphedema

Unfortunately, we do not yet have the full capacity to make lymphedema go away once it’s beyond Stage 1. Our goal must be to encourage latency and to manage its effects. 

However, we shouldn’t be frustrated that there is no complete cure for lymphedema quite yet. We have learned many things that help us understand the development of lymphedema and apply this knowledge to the effective treatment of patients.

Here are some valuable things we have learned about lymphedema so far:

  • Primary lymphedema occurs in about 45,000 of the 10+ million total population of people with lymphedema.
  • Primary lymphedema has a strong link to acquired lymphedema. 
  • Genetic mutations can cause primary lymphedema.
  • Breast cancer patients with acquired lymphedema have higher instances of a type of genetic variation, called single nucleotide polymorphisms (SNPs), in the same genes that cause types of primary lymphedema. This may be an indicator that some are genetically predisposed to develop lymphedema when the lymphatic system is damaged by cancer therapies. 

Therefore, some people with secondary or acquired lymphedema may have an altered genetic make-up that makes it more difficult to sustain latency when the system is damaged. Another way of saying this is that some of this variance in patients is genetically determined.

It’s important to note that the line between primary and secondary lymphedema can be easily blurred. Someone who appears to have developed lymphedema may have simply been genetically predisposed to it.

In terms of mutations, some people harbor clear-cut mutations and some do not. Those with clear-cut mutations are often diagnosed because something traumatic has happened to them. For these patients, even a slight trauma could initiate the development of lymphedema. 

For example, if a child is born with clear indications of lymphedema at birth, this is primary lymphedema. If someone lives in Southeast Asia and has been infected by a nematode and develops lymphedema, this is secondary lymphedema. 

But for others, the clinician will need to do some digging before calling someone’s condition primary or secondary lymphedema. Everything is contextual and requires clinical acumen to understand thoroughly. Sometimes, we can’t know with certainty what’s actually going on.

Treatment Obstacles and Advances

The study of lymphedema can be somewhat frustrating because it comes with many obstacles. However, it also comes with many new advances that are quite exciting, particularly when you consider the positive impact it can have on our patients.

The primary obstacle to treating lymphedema, from a clinician’s point of view, is that it is addressed differently than other chronic conditions. Unlike many other types of disease, lymphedema is handled with physical treatments that are often difficult for the physician to oversee. 

For this reason, it’s challenging and sometimes undesirable for a clinician to assume a strong role in the treatment process. All aspects of the clinician’s role are being undercut by the condition itself. This challenge is one of the reasons I am so passionate about lymphedema research.

Through research, we are learning that lymphedema is both a fluid problem and a structural problem. We’re learning that we can’t focus so much on the fluid that we forget the importance of the overall structure of the body’s tissues.

After more than two decades of research in the field, I am 100% convinced that lymphedema is an inflammatory disease. A specific inflammatory component is the main driver of lymphedema, and we are seeing that when this pathway is overstressed, the body blocks the lymphatics from repairing themselves by interfering with the healing of these pathways.

This is why I am dedicated to finding a medication that treats lymphedema by reducing the specific inflammation involved. While this chronic disease may not ever be fully curable, it can be managed to the point that it sometimes becomes subclinical.

To me, it is clear that multi-modality treatments are necessary to properly treat lymphedema. Despite the advances in pharmacology, lymphedema remains a condition that requires a multi-pronged approach to deliver the best patient outcomes.

For a physician, the proper position to take with patients is as follows: 

  • Proactively minimize the rate of lymphedema progression.
  • Manage the patient’s expectations about permanently stopping the progression.
  • Help them understand that we’re not just dealing with fluid; it’s a structural problem that involves the remodeling of the tissues in chronic edema.
  • Explain the role of compression therapy and the importance of following through at home.

While pneumatic compression devices play an important role, lymphedema is not resolved by this therapy. As part of my ongoing research, I am conducting medication research for a drug that will reduce the inflammation caused by lymphedema to be used in tandem with compression therapy in the future.

Risk Reduction for Lymphedema

Lymphedema treatment requires an approach that includes risk reduction and management of the condition to limit its progression. I’d like to share some best practices for risk reduction and some things any clinician should keep in mind as they treat people with the signs of lymphedema:

We can detect increasing fluid volume in the tissues via bioimpedance spectroscopy before edema is clinically detectable by examination. I’ll provide more explanation about bioimpedance below.

Therefore, proactive and early detection is extremely important in terms of risk reduction for lymphedema.

We know that when you identify a minimal increase in fluid, within six to eighteen months the patient there is a 98% likelihood of the clinical appearance of lymphedema, unless measures are undertaken to stabilize the condition at this preclinical stage.

Adoption of early detection modalities is critical for preventing the progression of lymphedema from the preclinical to the clinical stage.

Bioimpedance spectroscopy is a form of tissue composition test that is performed non-invasively and quickly to predict abnormal appearance of extracellular fluid in regions of the body. Bioimpedance is the physical characteristic of body tissues that predicts the resistance to the propagation of an applied electrical current, although it cannot be felt by the individual being examined. 

A lower bioimpedance indicates the presence of water buildup because water is a very good conductor of electricity. We measure this via bioimpedance spectroscopy as a part of early detection. 

It is desirable for all high-risk patient groups, including those who have lymphadenectomy of radiation therapy to lymph node-bearing regions, to have periodic bioimpedance spectroscopic studies to detect the early transition to tissue fluid accumulation. This will permit early initiation of aggressive measures to halt progression. Typically this is performed quarterly during the first year following completion of cancer treatments.

Other cutting-edge techniques are also being developed to detect early changes in limb fluid volume. I believe that we need better adoption of these new modalities, particularly because it is so much less expensive to detect and treat lymphedema in the earliest stage than it is to treat later-stage, clinically apparent lymphedema. 

Why I am Passionate About Lymphedema

My passion for lymphedema research, education, detection, and treatment was sparked early in my career when I was assigned to take over a lymphedema clinic. 

Early on, I traveled to Europe and learned the European physical methods of treating lymphedema; at that time, there was little familiarity with decongestive physiotherapy in the United States. The more I cared for patients in the clinic, the more I felt the scientific need to better understand proper lymphedema care and the call to do additional research to discover the best way to help these patients achieve better outcomes.

I pursued and received grants to further my study of lymphedema. I began to understand that these patients have a complicated biology, with underlying factors that need the expertise of a skilled and patient clinician.

At a certain point, my research focus evolved to develop and embrace animal models of lymphedema. I began exploring genetics and the molecular underpinnings of lymphatic disease. I theorized that if we better understood how the tissues were impacted by lymphedema, we could evolve therapeutics that might reverse the tissue damage.

I truly and deeply care about lymphedema patients and I want them to receive better care. This has fueled my passion for lymphedema research.  

The Importance of Education

It has been well-established that the lymphatic system, and specifically lymphedema, are under-taught to clinicians. The lymphatic system is vital and central to the human body, but the relevant education is lacking. There are several reasons why this is the case.

Lymphatics have been difficult to image under the microscope and in vivo.

This unidirectional circulatory system is difficult to access in the living patient and therefore resists clinical study.

The science and medical communities have been slow to understand exactly how the lymphatic system works.

This lack of education impacts the ability to care for patients. Let’s wrap up this article by looking at two helpful resources that can further your familiarity with the facts about lymphedema.

LE&RN, the Lymphatic Education & Research Network, provides a wealth of information. LE&RN has established standards for institutions that wish to be LE&RN Centers of Excellence in the Diagnosis and Treatment of Lymphatic Diseases.

Lymphatic Medicine: Paradoxically and Unnecessarily Ignored, which I authored, is available for free from the National Center for Biotechnology Information online database of the U.S. National Library of Medicine/National Institutes of Health.  

I encourage you to take advantage of these resources and deepen your understanding of lymphedema. It’s important to clear up the many misconceptions about lymphedema and replace them with evidence-based knowledge that comes from scientific research. This is the best way to provide our patients with the education and support they so desperately need.

About the Author

Dr. Stanley G. Rockson, M.D., is the Allan and Tina Neill Professor of Lymphatic Research and Medicine at Stanford University School of Medicine. After earning his medical degree from Duke University School of Medicine in Durham, North Carolina, Dr. Rockson completed his internship and residency training in internal medicine at the Peter Bent Brigham Hospital of Harvard Medical School, in Boston, Massachusetts, and fellowship training in the cardiac unit of Massachusetts General Hospital, Harvard Medical School. He is a fellow of the American College of Cardiology, American College of Angiology, and American College of Physicians, as well as a member of the International Society of Lymphology, American Society of Internal Medicine, the Society of Vascular Medicine and Biology, and the Paul Dudley White Society, among others.