Myths and Truths about Lymphedema – Recap of June’s Educate & Empower Series

Nancy Kaufmann, OTC, CLT-LANA, St. David’s Medical Center 

Dr. Christine Fisher & Dr. Rob Whitfield, Plastic Surgeon at Austin Breast and Body



Lymphedema is a progressive variably painful swelling of the limbs resulting from lymphatic system insufficiency and deranged lymphatic transport. Physically, it is characterized by a cycle of swelling of the tissues and eventual thickening and hardening of the skin and soft tissue. There are two forms of lymphedema. Primary lymphedema is an inherited condition that is caused by a lymphatic system that develops abnormally. Secondary lymphedema occurs as result of inciting event such as infection, injury or surgical ablation. It is a long-term, progressive, and potentially disabling condition that can be a side effect of medical care and can negatively impact a person’s quality of life. The following facts and misconceptions pertain to secondary lymphedema.

Myths & Facts

Misconception:  Lymphedema is swelling caused by too much water in a certain area of the body.

Fact:  Lymphedema is a condition where protein-rich fluid known as lymph collects typically in the arms or legs resulting in pain, decreased mobility, and eventually can progress to fibrosis, fatty tissue overgrowth, recurrent soft tissue infections and disability.

Misconception:  Lymphedema happens just as much today as it did in the past.

Fact:  Improvements in surgical and radiotherapeutic techniques in recent decades have reduced the incidence of lymphedematous complications; nevertheless, from 6- 30% of patients have clinical manifestations of impaired lymphatic function in the arm following breast cancer treatment.

Misconception:  By following a long, complicated list of behavioral changes a patient can reduce the chance that they will develop lymphedema after breast cancer therapy.

Fact:  There is uncertainty and anxiety surrounding the behaviors that worsen secondary lymphedema. Many of the patient education materials currently in use promote behavioral changes that result from unproven beliefs about what causes the progression of lymphedema. These old “do’s-and-don’ts” lists have not changed significantly over the last few decades of cancer therapy, and there is little new objective data to guide us in making evidence based clinical recommendations. Scroll down below for a list of common recommendations published in a medical journal in 1966 which is similar to advice given today. These are not “evidence based” recommendations; many of these beliefs have been scientifically studied in recent decades.

Misconception:  Flying on an airplane can cause lymphedema.

Fact:  Air travel can worsen swelling in a limb with existing lymphatic malfunction.

Air travel can cause the appearance or exacerbation of lymphedema. This has been evaluated objectively in the form of a prospective, questionnaire-driven analysis of precipitating factors in a large population of lymphedema patients. Indeed, a high incidence of new lymphedema and exacerbation of preexisting lymphatic conditions were identified by these patients after the triggering event of air travel. It is possible that the problem may be attributable to a lowered cabin pressure that, in turn, exacerbates the lymphatic incompetence of the affected limb. Additionally, the long period of inactivity during air-travel and the reduced contribution of muscular pumping in the involved extremity may contribute to the temporary obstruction of venous and lymphatic drainage.

Casley-Smith J. Aviat Space Environ Med 1996; 67: 52-6.

Misconception:  If lymphedema is going to develop there is nothing a person can do to prevent its development and progression.

Fact:  Once lymphedema begins, the timing and duration of the symptoms is an important factor that contributes to the likelihood of progression. Early physiotherapy has been shown to reduce the development of chronic lymphedema.  Multiple studies have also shown that untreated lymphedema had a significant tendency to increase in severity with time. Medical management including manual lymphatic drainage, use of compressive garments, scar massage, and physical therapy have been shown to prevent the progression and the severity of chronic lymphedema.

Obesity and a history of infection of the affected extremity are highly predictive for the development of lymphedema. Treatment factors that predispose significantly to late, subjective appearance of lymphedema include the extent of axillary surgery and  exposure to axillary radiotherapy, whereas the pathological node status seemed to bear no statistically significant relation to the lymphedematous complication. The highest incidence of late lymphedema was seen in the group of patients who had undergone both surgical clearance of the axilla and radiotherapy. Scroll down below for more evidence-based details about lymphedema and its progression.

BB Lee, J Bergan, SG Rockson. Lymphedema: A Concise Compendium of Theory and Practice. 2011.

Misconception:  There is no surgical treatment for lymphedema that actually works to reduce the symptoms and severity of chronic lymphedema.

Fact:  Two modern surgical treatments for lymphedema are lymphovenous anastomosis (LVA) and autologous lymph node transfer (ALNT). The LVA procedure creates a bypass from a lymph channel to a small vein in the affected extremity, to temporarily relieve lymphatic congestion in the shorter term. Reconstruction of the damaged region with a fatty flap containing lymph nodes (ALNT) are believed to restore the anatomy, normalize the physiology and allow the re-growth of lymphatic vessels, which is beneficial in the longer term.

If conservative treatment of lymphedema fails to bring satisfactory, long-lasting results and MRL or lymphoscintigraphy demonstrate an absence of draining lymph nodes in the axillary area, autologous lymph node transfer (ALNT) could be performed to replace the missing lymphatic tissue. The ALNT procedure is considered to be physiologic for several reasons. First, scar tissue, which may be blocking lymphatic flow, is released. Second, healthy vascularized tissue in the form of a free flap is brought into the previously operated site, which may bridge lymphatic pathways through the scar tissue. Third, the flap contains healthy lymph nodes, which produce vascular endothelial growth factor C (VEGF-C). This growth factor promotes lymph-angiogenesis and is hypothesized to stimulate reconnections in the distal obstructed lymphatic system with the proximal lymphatic system. Fourth, lymph nodes have important immunologic functions, and adding healthy lymph nodes may provide benefit to a lymphedematous extremity predisposed to development of infection. Finally, lymph nodes themselves are an interface between the lymphatic and vascular system.

Traditional “Do’s and Don’ts” for Postmastectomy Patients

  • Every effort must be made to avoid all cuts, scratches, pinpricks, hangnails, insect bites, burns, and strong detergents
  • Do not pick at or cut cuticles or hangnails
  • Do not dig in the garden or work near thorny plants
  • Do not reach into a hot oven
  • Do not permit injections, blood specimens, or blood pressure recordings in this arm
  • Do wear loose fitting rubber gloves when washing dishes
  • Do wear a thimble when sewing
  • Do apply a moisturizing lanolin-based hand cream often

What does evidence-based medicine actually tell us about lymphedema and its progression?

Factors Unrelated to the Development of Lymphedema
Drug therapy
Time interval since presentation
Surgery to the breast
Radiotherapy to the breast
Menopausal status
Pathological node status

Likely Correlation with the Development of Lymphedema
Older age (>50)
Higher socioeconomic status
Non-dominant arm
Non-active individuals

Factors that Positively Correlate with the Progression of Lymphedema
Extent of axillary surgery
Radiation therapy to the axilla
Obesity BMI>30
Infection or injury of ipsilateral (same side) arm postoperatively

Nelson P.. Geratrics 1966; 21: 162.
Kissin M, et al. Br J Surg 1986; 73: 580-4.
Am. Soc. Clin Onc. 2008

Want to learn more?

Click on the links below to view the presentations given during BCRC’s Educate & Empower Series, June 2014.

Slides from Dr. Fisher and Dr. Whitfield,  Austin Breast & Body Center

Slides from Nancy Kaufmann, St. David’s Medical Center



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