The Gold Standard for Lymphedema Management
In several conversations with different physicians, there is a question that always seems to arise: What can you do to help a patient with lymphedema? I have been asked the same question by patients and caretakers diagnosed with this chronic condition. My reply is always the same: “We can do Complete Decongestive Therapy, the gold standard treatment for lymphedema.”
Lymphedema is a chronic condition where abnormal accumulation of protein-rich fluid occurs in the subcutaneous tissue. It may present in the extremities, face, neck, trunk, abdomen, genitalia, and internal organs following surgery and different types of cancers (breast, prostate, bladder, uterus, lymphomas, melanomas). Patients with morbid obesity, diabetes, cardiac, renal, hepatic, vascular, and pulmonary conditions can also develop lymphedema.
There are two types of lymphedema: primary and secondary. Primary lymphedema is associated with congenital malformations of the lymphatic system, and secondary lymphedema develops from known etiologies. In the United States, secondary lymphedema can result from breast cancer and the medical conditions mentioned above. Filariasis is the main cause of secondary lymphedema globally, where the parasite Wuchereria bancrofti infects the lymph nodes following a mosquito bite.
There are four stages of lymphedema: Stage 0 or Latency where there is no swelling or skin changes but, the potential to develop lymphedema due to comorbidities. Stage 1 is the Reversible Stage where soft and minimal edema occurs but subsides with elevation of the affected limb. Stage 2 is the Spontaneous Irreversible stage. There is fibrotic tissue, no-pitting edema, and frequent skin infections. Stage 3 or Lymphostatic Elephantiasis presents with extreme limb volume, skin fibrosis with papillomas, deep skin folds, and possibly Elephantiasis nostras verrucosa (ENV) where there is cutaneous hypertrophy.
Lymphedema affects approximately 0.1% of Americans1 and 70% of breast and prostate cancer patients2. If left untreated, lymphedema progresses into skin changes such as fibrosis, dermal hyperplasia3, recurrent skin inflammation and edema, papillomatosis, hyperkeratosis, and telangiectatic (thickened wall in dermal vessels); all of which can cause cellulitis, bacteremia, and sepsis; not to mention the psychological and debilitating functional impairments the patient develops.
Lymphedema is incurable but can be managed with Complete Decongestive Therapy (CDT), also known as Complex Decongestive Therapy – the gold standard treatment in lymphedema management. CDT is an intensive therapy program consisting of two phases: Phase I-Decongestion and Phase II-Maintenance.
The goal in Phase I is to decrease limb swelling and improve skin integrity. There are four components: skincare, manual lymph drainage, compression therapy, and exercises. Skincare is crucial to prevent further skin changes. The products used are acidic soaps and lotions to maintain the low ph that normal skin presents. Manual lymph drainage is a type of light massage that stimulates lymph flow in the lymph vessels and collectors. Compression therapy includes the use of short-stretch bandages along with soft materials such as cotton and foam-based products to create padding and prevent skin breakdown.
Lymphedema exercises include ankle pumps, deep breathing, upper and lower extremity strength, range of motion and functional mobility. Lymphedema patients are recommended to exercise when compression is used in the affected limb to prevent additional lymphatic fluid from accumulating in the interstitial spaces of the skin. Under normal circumstances, blood flow will increase to supply oxygen and nutrients to the working muscle but with lymphedema, this leads to increase swelling. Thus, the patient should exercise while wearing compression bandages or garments.
The goal in Phase II is to maintain the limb size achieved during Phase I and prevent exacerbation of swelling. To accomplish this goal, the patient is instructed in skincare, self-MLD, and to wear a special compression garment such as compression stockings or socks and/or velcro wraps. Also, the patient is encouraged to continue with the exercise routine prescribed during Phase I. During Phase II, an intermittent pneumatic compression pump (also known as a lymphedema pump), is recommended. The pump facilitates lymphatic flow but should not be used as a stand-alone treatment but along with the components of CDT.
It is imperative to remark that the patient receiving CDT must be treated by a Certified Lymphedema Therapist or CLT. CLTs have completed specialized training and board certifications to treat lymphedema. Patient safety, limb compromise, circulation problems, skin breakdown, pressure injuries, throbbing pain, the spread of infections, among other complications can arise from untrained individuals performing CDT.
Adherence to the program is necessary for lymphedema management to achieve positive outcomes including the prevention and reoccurrence of swelling. However, it is important to mention that even with good adherence, an exacerbation of comorbidities can lead to re-swelling of the affected limb. Therefore, lymphedema management must include patient education, not only about their lymphedema but their comorbidities as well.
Also, it is our duty as clinicians to advocate for the patient when there are limited resources to manage the patient’s condition. The Florida Breast Cancer Foundation, the National Lymphedema Network, the Academy of Lymphatic Studies, Norton School, and the Lymphology Association of North America (LANA), among others, are available resources for lymphedema management.
Lymphedema doesn’t need to be a debilitating condition. With proper care, education and advocacy, it can be managed. The patient has the right to quality of life and with the help of a Certified Lymphedema Therapist, lymphedema doesn’t have to take that away from them.
- Sleigh, B. & Manna, B. (2020). Lymphedema. Available at: https://www.ncbi.nlm.nih.gov/books/NBK537239/. Accessed January 28, 2020.
- United States Senate Finance Committee Chronic Care Reform. (2015). Available at: https://www.finance.senate.gov/imo/media/doc/Weiss%20Chronic%20Care%20Letter%20to%20Senate%20Committee%20(3).pdf. Accessed January 28, 2020.
- Riches P. (2019) What is Lymphedema? Available at: https://www.medicalnewstoday.com/articles/180919.php. Accessed January 28, 2020.
- Fang-Yih L, Ching-Fu H, & Bai-Yao W. (2012). Elephantiasis nostras verrucosa: swelling with verrucose appearance in lower limbs. Can Fam Physician, 58(10):e551-553. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3470531/. Accessed January 28, 2020.
Dr. Nilma Elias Santiago is a Doctor in Physical Therapy, Certified Lymphedema Therapist, Wound Care Certified, and Ostomy Management Specialist. She is the owner of the Integumentary Physiotherapy Clinic in Altamonte Springs, FL. For more information contact her at firstname.lastname@example.org