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LYMPHEDEMA FACTS

The Training Station PT Specializes in Lymphedema Care

1: Who is at risk for lymphedema?

Anyone with a chronically reduced lymphatic transport capacity (lymph node dissection, burns, radiated tissue, orthopedic/general surgery) OR anyone whose lymphatic fluid has exceeded his/her transport capacity for a significant period of time (chronic infection, systemic response from trauma). 

A well-conducted prospective study (Ridner et al) followed 138 breast cancer patients for 30 months post diagnosis. Individuals with body mass indices of 30 or higher at the time of diagnosis were 3.6 times more likely to develop lymphedema, but weight gain after diagnosis was not related.1

2: What is lymphedema and what are the signs and symptoms of lymphedema?

Lymphedema is swelling that occurs when protein-rich lymph fluid accumulates in the areas in between cells of our bodies. This space is called the interstitial space and the fluid that is in this space is typically about 16% of a human’s total body weight (fun fact!). Lymphatic fluid may contain items such as plasma proteins, extravascular blood cells, excess water, and organ-tissue bye-products.1 

There are two types of classification systems. The first is from the International Society of Lymphology, which classifies lymphedema into the following stages:

Stage 0 (also called subclinical or latent): There are no visible changes to the arm, hand, or upper body at this point, but you may notice a difference in feeling, such as a mild tingling, unusual tiredness, or slight heaviness. You can have stage 0 lymphedema for months or years before obvious symptoms develop.

Stage 1 (mild): The arm, hand, trunk, breast, or other area appears mildly swollen as the protein-rich fluid starts to accumulate. When you press the skin, a temporary small dent (or pit) forms; you may see this referred to as “pitting edema.” Such early-stage lymphedema is considered reversible with treatment because the skin and tissues haven’t been permanently damaged. When you elevate the arm, for example, the swelling resolves.

Stage 2 (moderate): The affected area is even more swollen. Elevating the arm or other area doesn’t help, and pressing on the skin does not leave a pit (non-pitting edema). Some changes to the tissue under the skin are happening, such as inflammation, hardening, or thickening. Stage 2 lymphedema can be managed with treatment, but any tissue damage can’t be reversed.

Stage 3 (severe): This is the most advanced stage, but it is relatively rare in people with breast cancer. At stage 3, the affected limb or area of the body becomes very large and misshapen, and the skin takes on a leathery, wrinkled appearance.5

 

The second system is Common Terminology Criteria for Adverse Events: 

Grade 1: 5% to 10% interlimb discrepancy in volume or circumference at point of greatest visible difference; swelling or obscuration of anatomic architecture on close inspection; pitting edema.

Grade 2: More than 10% to 30% interlimb discrepancy in volume or circumference at point of greatest visible difference; readily apparent obscuration of anatomic architecture; obliteration of skin folds; readily apparent deviation from normal anatomic contour.

Grade 3: More than 30% interlimb discrepancy in volume; lymphorrhea; gross deviation from normal anatomic contour; interfering with activities of daily living.

Grade 4: Progression to malignancy (e.g., lymphangiosarcoma); amputation indicated; disabling lymphedema.1

 

3: Where do you go if you suspect you have lymphedema?

Speak with your oncologist, gynecologist or primary care physician and request a referral to a Certified Lymphedema Therapist (typically PT’s and OT’s). The Lymphology Association of North American recommends the following: Therapists providing CDT should have completed at least 135 hours of training. (See NLN Position Paper: Training of Lymphedema Therapists.205) Additional specialty training may be required for therapists treating facial, truncal, and genital lymphedema, or lymphedema in people with complex illnesses or disabilities.4

4: When could lymphedema occur after lymph nodes have been removed secondary to a cancer diagnosis?

It has been reported to occur within days and up to 30 years after treatment for breast cancer. The overall risk of lymphedema for all cancers is reported to be 15.5%.4 Eighty percent of patients, who are diagnosed with lymphedema, experience onset within 3 years of surgery; the remainder develop edema at a rate of 1% per year.1

5: Why does lymphedema occur?

The swelling typically occurs for one of two reasons: the bodies transport capacity to remove the protein rich lymph fluid is reduced (i.e. lymph node dissection, radiated tissue, burns, person born with a reduced transport capacity – primary lymphedema) OR the protein rich lymph fluid volume has exceeded the transport capacity of the body (i.e. infection, localized trauma). Fun fact: Normal daily lymphatic transport = 10% of our actual functional capacity to transport lymphatic fluid!2

6: How is lymphedema treated?

Complete Decongestive Therapy is the gold standard. This is composed of two main phases. The first is a decongestive phase, where the excess lymphatic fluid is removed through a combination of short stretch bandaging, manual lymphatic drainage, diaphragmatic breathing, proper skin care, patient education on precautions, exercise and appropriate sleep.4 This phase can last anywhere from 2-8 weeks – dependent on patient preference and availability. Fun fact: the CDC recommends adults 18-60 get at least 7 hours of sleep/night, adults 61-64 receive 7-9 hours and 65+ get 7-8 hours of sleep/night!3 The second phase is a maintenance phase, where the patient is fit for the appropriate compression garment as determined by his/her CLT (i.e. sleeve and glove, sleeve and gauntlet, compression thigh highs, knee highs, panty hose, abdominal compression top, facial compression-wear, breast compression bra) in conjunction with proper skin care, practicing lymphedema precautions, diaphragmatic breathing, exercise and continued appropriate amount of sleep/night.4 This phase is life-long. 

Works Cited

 1. https://www.cancer.gov/about-cancer/treatment/side-effects/lymphedema/lymphedema-hp-pdq

2. Lymphedema Management, Zuther, Joachim E.: 2009 Lymphedema Management DOI: 10.1055/b-0034-74696

3. https://www.cdc.gov/sleep/about_sleep/how_much_sleep.html

4. http://www.lymphnet.org/pdfDocs/nlntreatment.pdf

5. http://www.breastcancer.org/treatment/lymphedema/how/stages

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