Standard Treatment of Lymphedema--Patient Education--Self-Management

A recently published study showed that accurate patient education is a critical dimension of lymphedema risk-reduction.  Knowledge of lymphedema and its risk reductions is essential to all breast cancer patients, and makes a difference in their long-term quality of life.  In this study only fifty-seven percent of the participants reported that they received lymphedema information.  

• "Cancer-Related Lymphedema: Information, Symptoms, and Risk-Reduction Behaviors,"  Authors: Fu, Mei R.; Axelrod, Deborah; Haber, Judith, Source: Journal of Nursing Scholarship, Volume 40, Number 4, December 2008 , pp. 341-348(8)

If you've been treated for breast cancer, you are at risk for lymphedema of the hand, arm, back, and chest or breast on the affected side. If your surgery was bilateral, then both sides are at risk. The risk remains for the rest of your life. The good news is that you can reduce that risk by understanding a few important principles and the safe practices that follow from them. 

Two words summarize all the risk reduction practices and make them easy to remember: "Promote" and "Protect." That means you will promote the lymph flow in your affected arm/chest or other affected area, and protect the area from injury or infection.

Breathe

Do Your Self MLD

Prevent infection

• Keep the skin clean
• Keep your arm pits and the area under your breasts dry to avoid fungal infection.
• Keep your skin intact 
• moisturize your skin daily to prevent microscopic cracks
• keep nails clean, and avoid cutting cuticles
• use sunscreen or protective clothing to prevent sunburn
• use an insect repellent on any exposed skin
• avoid razor nicks and burns
• wear gloves when handling household cleansers and other chemicals
• wear rubber gloves when washing dishes
• wear sturdy work gloves when gardening or using tools
• wear a thimble when sewing to avoid needle and pin pricks to your finger
• use extra caution when cooking to avoid burns
• avoid skin punctures from IVs, injections, and blood tests
• Discuss with your doctor the use of prophylactic oral antibiotics with any medical procedure that involves the affected parts of your body

In case of nicks, scratches, burns, insect bites, abrasions or any skin break, wash the area well and apply a topical antibiotic. Watch for redness, itching, sudden swelling, warmth to the touch, rash, or fever, which may indicate an infection, and get medical help promptly.

Stay active, but be watchful

• Exercise is good for both prevention and control of lymphedema.

• Build up gradually to your former activity level.

• With any new activity, start slowly and increase gradually.

• Take frequent rests, or switch activities to avoid overuse or constant repetition.

• Stay well hydrated (avoid caffeine).

• Use your legs, not your back, to lift things (or kids!) off the floor.

• Use both arms rather than one to carry heavy objects, such as milk bottles.

• Keep your arms close to your body when hefting loads.

Stop at once if you experience heaviness, aching, firmness, or swelling. Rest and elevate your arm. You may want to try the activity again the next day, but stop earlier and plan to proceed more slowly.

Avoid constriction

• Except in an emergency, do not allow blood pressure to be taken on an at-risk arm.

• Make sure bracelets, rings, watches and clothing are not tight.

• Bras should fit comfortably, with wide straps that do not cut into the shoulders.

• Avoid under-wire bras that can limit lymph drainage below the breast.

• Keep bags and purses light so they don't dig into your shoulders or fingers.

Avoid temperature extremes

• Extreme cold may cause rebound swelling that can overwhelm the lymph system.

• If an ice pack is needed, pad it with a towel and use it for no longer than 10 minutes at a time.

• Heat can draw lymph fluid to the affected areas and overwhelm the lymph system.

• Avoid water temperatures of more than 102 degrees in hot tubs, saunas, baths or showers.

• If moist heat is needed, moderate the temperature and use it for no longer than 10 minutes at a time.

• In warm climates, limit outdoor activities to the cooler morning hours.

Control your weight

• If you are overweight, weight loss can significantly reduce your lymphedema risk.

• Try to avoid weight gain following your cancer surgery.

• Get help from a dietician if necessary.

 Use compression garments

• Always "promote" your lymph flow with manual lymph drainage massage before donning any of your compression garments.

• Garments should fit well and be checked for fit by a knowledgeable professional.

• Always wear a glove or gauntlet with a compression sleeve to avoid trapping any excess fluid in your hand.

• If you have had bilateral surgeries, wear garments on both arms.

• Wear your garments when you exercise or for any strenuous or unusual activities, or if your arm feels achy or heavy after exercise.

• Wear your garments for air travel, and for an hour or two after you land while your arm recovers from the pressure changes.  (Please click here to learn more about controversial studies done on wearing compression garments while flying.)

• If you choose to travel without wearing compression garments, take a well-fitted sleeve and glove with you in your carry-on luggage in case you develop heaviness or swelling. (Please click here to learn more about controversial studies done on wearing compression garments while flying.)

Consider Sentinel Node Biopsy (SNB) if it is appropriate

Since surgeons have begun using the Sentinel Node Biopsy procedure (the removal of one to four lymph nodes identified by a tracer as being linked to the tumor) in place of complete axillary dissection (the clearing of many more lymph nodes from the axilla) to detect cancer spread, fewer breast cancer patients have developed lymphedema. Though many doctors consider the lymphedema risk to be minimal following Sentinel Node Biopsy, it is still significant, as this study from Sloan-Kettering (NYC) shows:

     McLaughlin, S.A. et al.: Prevalence of lymphedema in women with breast cancer 5 years after sentinel lymph node biopsy or axillary dissection: Objective measurements. (Journal of Clinical Oncology, Vol. 26, No. 32 (November 10), 2008: pp. 5213-5219) It compares the risk of developing arm lymphedema in women who've had breast cancer surgery with sentinel node biopsy versus those who had axillary lymph node dissection. The paper was published in November, 2008, in the Journal of Clinical Oncology.

     The purpose of the study was to compare the prevalence of lymphedema after sentinel node biopsy alone to the prevalence after that was followed immediately by axillary lymph node dissection because of a positive node. Women had measurements of arm circumference taken just prior to their surgery and again approximately 5 years later.

Of the 936 women enrolled in the study, 600 (64%) had sentinel node biopsy  alone and 336 (36%) had sentinel node biopsy  followed by axillary lymph node dissection. Arm circumference measurements showed that 5% of the women in the sentinel node biopsy group had measurable lymphedema at the time of the follow-up visit, compared with 16% of the women in the sentinel node biopsy /axillary lymph node dissection group.

The authors concluded: “When compared with sentinel node biopsy /axillary lymph node dissection, sentinel node biopsy  alone results in a significantly lower rate of lymphedema 5 years postoperatively. However, even after sentinel node biopsy  alone, there remains a clinically relevant risk of lymphedema. Higher body weight, infection, and injury are significant risk factors for developing lymphedema.”

The authors pointed out that adoption of sentinel node biopsy  as an alternative to axillary lymph node dissection occurred only recently, and lymphedema can develop years after axillary surgery. They suggested that previous studies of the prevalence of lymphedema after sentinel node biopsy  might not have estimated the true, long-term risk. For example, they noted that “approximately 25% of women ultimately developing lymphedema will do so after 3 years, …” so studies that report the prevalence after less than 5 years of follow-up are probably underestimating its actual prevalence. The authors found only two previously published studies that included patients who had been followed for longer than a median of 2.5 years.

The authors also noted that baseline measurements are critical when distinguishing changes in arm circumference that result from lymphedema versus differences that are due to “normal” arm asymmetry. They said they found only one previous study that used baseline measurements on a large number of women who were followed for more than 2 years.

The baseline measurements in this new study were done pre-operatively, at the time of the sentinel node biopsy . Measurements were taken 10 cm above and 5 cm below the olecranon process (the "point" of the elbow) on both arms. Follow-up measurements were taken at the same sites on both arms 3 to 8 years later. Changes in the at-risk arm were calculated using a formula, and lymphedema was defined as L > 2 cm at either measurement location.

Of the patients who underwent sentinel node biopsy alone, 5% (31 of 600) had measurable lymphedema, as compared with 16% (55 of 336) who underwent sentinel node biopsy followed by axillary lymph node dissection. Regardless of the type of axillary surgery, lymphedema was more likely to develop in the upper arm than in the forearm.

Other factors that were associated with development of lymphedema were greater baseline and current body weight, higher baseline and current BMI (body mass index), and a history of infection or injury in the at-risk arm during the interval between surgery and the follow-up visit.

The type of breast surgery (mastectomy versus breast-conserving surgery) did not affect the risk of developing lymphedema, once the influence of axillary node removal was removed from the calculation. Patients who had breast or chest wall irradiation on the at-risk side had a slightly greater risk of developing lymphedema (10%, vs. 8% with no irradiation), but the difference was not statistically significant. However, among women who had a mastectomy and sentinel node biopsy/axillary lymph node dissection, radiation was associated with a 20% risk of lymphedema, compared with a risk of only 11% among women who had a mastectomy with sentinel node biopsy/axillary lymph node dissection but did not have radiation.

The authors noted that the development of lymphedema is unpredictable and it can occur years after axillary surgery. They suggested that, based on previous reports and their results in this study, the true incidence of lymphedema is commonly underestimated because of too short a follow-up interval. It is likely that the previously reported rates of lymphedema following sentinel node biopsy of 0% to 7% within 6 to 36 months after surgery are just a fraction of the patients who will eventually develop lymphedema. The rate of lymphedema increases as women are observed for a longer period of time after surgery. Therefore, only long-term follow-up can accurately predict the incidence of lymphedema, whether due to axillary lymph node dissection or sentinel node biopsy.

Measurement of arm circumference is an objective method of detecting lymphedema but it might not be the most reliable indicator of clinically significant lymphedema.  The authors point out that a calculated difference of 2 cm is an arbitrary indicator. Also, such a change might not be noticeable on an obese woman, but could be severely disfiguring on a thin one. Also, they said, patients’ perceptions of arm swelling and discomfort should not be discounted in consideration of an lymphedema diagnosis. The authors proposed that the true prevalence of clinically significant lymphedema might require assessment of patients’ symptoms as well as objective measurements of the arm.
 

In addition to all of the above risk reduction  recommendations, we suggest each and every patient with lymphedema, or at risk for lymphedema, wear a medical alert bracelet (free from Peninsula Medical, Inc. ) as well as a g-sleeve when going to doctor's appointments or being admitted into the hospital, for additional protection of their at risk limb.

  

In addition, there are many places on the web that sell lovely medical alert bracelets that look like jewelry.  Here are some examples of places we have found lovely bracelets in all price categories.  There are many available, but these are some of our favorites available at the sites below and others:  The beautiful selection of this medical alert jewelry is huge!

And yes, they can easily be worn over your sleeve/glove!

 

 

Laurenshope

Creative Medical ID

HAH Originals

Page Last Modified 09/29/2015

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