This is the condition that is most threatening to your health and function following treatment for cancer. The American Cancer Society (ACS) states that the incidence of lymphedema is as follows:

• Within the first year of having a lymph node dissection (removal of the lymph nodes), 42% of patients will experience some degree of lymphedema (from very mild to severe).
• Within two years, 58% will experience some degree of lymphedema.
• Within five years, 72% will experience some degree of lymphedema.

Mild lymphedema, may be considered as only a minor nuisance resulting in cosmetic differences, or difficulty with clothing and jewelry. Moderate to severe lymphedema can result in significant losses in range of motion, functional ability, and overall health. In any case, your risk for infection is significantly increased.

What is lymphedema?

Lymphedema is a swelling in some area of the body, usually an arm or a leg. resulting from an abnormal accumulation of lymph fluid.

Lymph fluid is a transparent fluid composed of proteins, fats, water, and cells. It is collected from body tissues and is normally removed by the lymphatic system. This system runs throughout the body, delivering the lymph fluid to lymph nodes located in central areas of the body (armpits, groin, neck, and deep in the abdominal area). The nodes will produce lymphocytes, agents used to destroy any infection that may be present (this is why you will experience swelling in the areas of the lymph nodes if you have any infection or are ill). The lymph nodes finally deposit the lymph fluid into the circulatory system where it is either utilized or eliminated in the urine.

In the case of lymphedema, the body’s ability to circulate the lymph fluid is compromised. This is usually the result of lymph nodes being removed, causing a “back-up” of lymph fluid in the lymph vessels that deposit into that area. This causes a continual cycle of increased swelling as more lymph fluid is produced in the lymph vessels, without a way to transport it out. Also, if the lymph nodes have been removed, lymphocytes are never produced and the risk for infection increases.

If the lymphatic system has been sufficiently compromised by significant swelling, it may never return to its previous state, requiring life-long care. This is why lymphedema is considered a chronic condition.

Causes of Lymphedema

Lymphedema is classified as either primary or secondary.

• Primary lymphedema is a defect in the lymphatic system that can exist at birth, develop during puberty, or occur later in life.
• Secondary lymphedema is by far more common and is triggered by trauma to the lymphatic system. Most often this is due to surgery or radiation of the lymph nodes during cancer treatment, but may be triggered by other distress such as:
  • Scarring
  • Trauma
  • Infection of the lymphatic system
  • Medication
  • Bite of a mosquito infected with a Filaria parasite
  • Airline Travel (due to changes in pressure)

Skin Care

You are HIGHLY susceptible to infections in your arm or leg if you have had lymph nodes removed. This risk increases even more if you are already experiencing lymphedema.

To decrease the risk of infection, meticulous hygiene must become part of your daily routine. Maintain a skin environment that will better fight infection by performing the following:

• Never have injections, tattoos, or blood drawn on the affected side (the arm that has had the lymph nodes removed).
• Ask that your blood pressure be taken on the opposite/unaffected side. If you have had lymph nodes removed from both armpits, then ask that blood pressure be taken at the thigh (***This is still a controversial issue, but it is better to “play it safe” rather than risk further damage).
• Perform daily “skin checks”; make sure there are no breaks in the skin, paying particular attention to skin folds and areas of reduced sensation. This would include cuts, abrasion, insect bites, or any other sign of broken skin.
• Check your fingernails and toenails for hangnails and cracked or torn cuticles (NEVER cut your cuticles!). If you wear false nails, make sure the salon disinfects their instruments.
• Use an electric shaver for hair removal on the affected side. If you insist on using a blade or razor, you must use a fresh one every time.
• Check your skin after bathing. Make sure you dry well in all creases, skin folds, and between your fingers to avoid fungal infections. If you have deep skin folds, rubbing alcohol can be used to promote dryness, or use a hair dryer set on the cool setting.
• Gloves must be worn when washing dishes (including cleaning the dishes off prior to putting them in the dishwasher). Also wear gloves while performing household cleaning chores, as the chemical cleansers may cause local inflammatory reaction, as well as cause potential skin openings. If family members have fungal infections on their feet, gloves should be worn when handling dirty laundry.
• When gardening, gloves must be worn to protect the skin from scratches and thorns. As gardening gloves tend to get dirty inside as well as out, either wash the gloves inside-out after each use, or wear washable cotton gloves inside the gardening gloves, and wash these at the end of the day.

Skin Lotion

Your skin is your “barrier of defense” against infection. It has a low pH level (5.9 pH) which is acidic, thereby helping kill off bacteria. As a continued adjunct to proper skin care and to further reduce the risk for infection caused by bacteria, you must use lotions that not only decrease the chances of rough, cracked skin, but they must also have a low pH level (5.0 to 6.9 pH level). Lotions that are alkaline/basic (greater than 7.0 pH) not only decrease the effectiveness of fighting off infection, but actually provide a healthier environment for bacteria to grow. Also, because they act against your skin’s natural acidic pH, you will need to apply them more often.

Low pH or “acidic” lotions:

• Eucerin
• Curel
• Dermal Therapy
• Lac-Hydrin
• Melaluca
• Avon Lotions
• Johnson and Johnson Baby Lotion

High pH or “alkaline” lotions:

• Nivea
• Lubriderm
• Keri
• Suave

***If you are unsure if your favorite lotion is acidic or alkaline, check to see if there is an address or 800 number located on the bottle. They can usually get back to you in a few days with the information. Tip: If you find you are reapplying your lotion frequently throughout the day, then your lotion is most likely high pH/alkaline.

Lymphedema:
Prevention and/or Reducing Your Risk

No matter what the cause, lymphedema can lead to not only decreased range of motion, decreased function, and (in the case of significant swelling) discomfort/pain, but it can become life-threatening if not properly cared for. As with any condition, the best way to treat it is to try to prevent it from occurring in the first place.

If you’ve been treated with lymph node surgery or radiation for cancer of the breast, prostate, bladder, colon, or elsewhere, keep a constant watch for lymphedema. Secondary lymphedema can develop immediately following surgery, or up to 20 years later.

To prevent the onset of this condition, at-risk individuals should avoid the following:

• Vigorous, repetitive or constricting movements or heavy lifting with the affected arm (common weight restriction is 10 to 12 pounds).
• Tight jewelry or clothing restrictions (elastic bands, etc.)
• Extreme temperature changes
• Trauma, sunburn, cuts, insect bites, scrapes, cat scratches, or sports injuries
• Overexertion
• Heavy purses: Carry your purse on the unaffected side and remove non-essential items
• Tight bra straps that “did” into the shoulder area. Use the lightest prosthesis you can tolerate and use colostomy glue to place the weight of the prosthesis on the skin instead of the shoulder
• Vigorously drying of the skin with a towel after bathing or swimming
• Obesity
• Broken and/or dry skin (see section regarding skin care)
• Low fluid intake and improper diet

Airline Travel

Although frequently recommended to be avoided if you already have lymphedema, traveling by plane is often the only option available to business people, vacationers, in cases of family emergencies, etc.

By following the guidelines below, you can safely fly with minimal discomfort and decrease the chance of aggravating your condition.

• Request a salt-free meal or snack
• Drink lots of water before and during the flight (***avoid mineral water as this has a high sodium content)
• Get up and move around the plane frequently
• Wearing your compressive bandages is best, but at least wear your compressive garment throughout the flight.
• Perform the “Compressive Garment Exercises” every half-hour (whether you are wearing your bandages or garment) to facilitate circulation and movement of lymph fluid
• Have someone else carry your luggage. Don’t do carry-on; check your luggage at the gate.

If You are Diagnosed with Lymphedema…

Relax and don’t panic: Lymphedema is a treatable condition and medical awareness of how the lymphatic system functions grows daily with continued research.

Seek out a qualified therapist who specializes in treating lymphedema: The specialist should be local as it may be uncomfortable and even unhealthy for you to travel long distances. Make sure the therapist has received specialized training in lymphatic management techniques as traditional schooling does not include instruction in this complex method. Also, check with your insurance company regarding coverage for treatment, as many will only pay for treatment administered by a certified therapist.

The earlier treatment is begun, the better and quicker the results: If left untreated, lymphedema results in hardening (fibrosis) of tissue, which harbors bacteria that can lead to skin breakdown, loss of limb function, chronic infections, and even lymphatic cancer. Monthly measurements, as instructed by your therapist, will help you monitor whether treatment should be initiated as minor increases in sizes of the arm may not be noticeable to the eye.

Keep a constant watch for the following:

• Signs of infection: rash, red blotchy skin, itching, discoloration or fever.
• Sudden, marked increase in swelling; this could indicate a recurrent tumor growth.
• Unexplained pain.

***If any of these exist, halt your treatment and contact your physician immediately.

Treatment for Lymphedema

Complete Decongestive Therapy (CDT) is the most effective method to lessen or remove the symptoms of lymphedema. Practiced in Europe for decades, CDT is just now beginning to make an appearance as a treatment option in the United States. In order to insure that treatment is performed safely and effectively, certification in this method is becoming the standard and is often required by insurance companies before payment for services is accepted.

CDT is composed of four elements:

• Lymphatic Drainage Massage (LDM) or Manual Lymph Drainage (MLD): a gentle technique that redirects the lymphatic circulation along natural lymphatic pathways in order to clear areas of lymph fluid congestion and stimulate flow.
• Bandaging and Compression Garments: initial use of specialized bandaging techniques using short-stretch bandages to prevent refill of the lymphatic system following LDM/MLD and finally certified fitting and instruction in application and usage of compressive garments to maintain the decreased girth of the limb once it has been reduced in size.
• Specific Exercises: instruction in specialized exercises performed in a specific sequence to further facilitate lymph fluid drainage while wearing bandages and/or compressive garments.
• Skin Care Instruction: to eliminate bacterial and fungal growth and to prevent infection, both which can aggravate lymphedema.

If all of the components of CDT are used, during both the intensive treatment phase and the maintenance phase, the limb can be returned to a normal or near-normal shape and function, depending on the severity of the lymphedema. As this is a chronic condition, you may need to receive continued treatment for flare-ups on a yearly basis. This is why continued measurements, skin care, bandaging, garment wear, and adherence to exercise instruction are important in maintaining a reduction in lymphedema.

***The information in this packet is compiled from information provided in part by the National Lymphedema Network, the Lymphedema Therapy Center, The Vascular Surgery and Diagnostic Center, and the American Cancer Society. Supporting information provided by Linda Fike-Looser, Physical Therapist and Certified Lymphedema Therapist – Lymphology Association of North America (CLT-LANA).

Resources

National Lymphedema Network
Latham Square, 1611 Telegraph Ave, Suite 1111
Oakland, CA 94612-2138
(800) 541-3259
www.lymphnet.org
Information and products
Lymphedema alert bracelets (get removable clasp)
Support groups
Additional resources

The Susan G. Komen Breast Cancer Foundation
National Office:
5005 LBJ freeway, Suite 370
Dallas, TX 75244
(800) 653-5355
Montana Office:
PO Box 6816
Helena, MT 59604
(800) 474-3108

Linda Looser, PT, CLT-LANA
Owner, New Horizons Physical Therapy, PC
120 S. Fifth Street, Suite 102
Hamilton, MT 59840
(406) 363-2570
Women’s Health Specialist
Incontinence Therapy Specialist
Certified Lymphedema Therapist