Lymphedema After Cancer Treatment: Management and Prevention
Mary Rosenberg, PT, CLT-LANA, physical therapist and lymphedema therapist, Richelle Drake, CLT-LANA, lymphedema therapist and Marchelle Brown CLT, lymphedema therapist
This is a summary of a lecture presented on November 18, 2003.
Cancer treatments often have side effects, some of which are immediate while others may arise years later. Not everyone is affected by the same side effects and some of these are short-term while others are enduring. Lymphedema is a secondary condition that arises from cancer treatment; the estimate of the number of patients who experience it varies depending on where you derive the statistics. Lymphedema as a side effect of cancer treatment is usually caused by surgery and radiation that disrupts the flow of the normal lymph system. Many patients are unprepared for this development and, while many physicians and health care providers are uncertain about its treatment, there is a growing awareness that it should be addressed early. It is important for patients to understand their risk factors, how to identify symptoms and options available for treatment so that they can advocate for care in its earliest stages.
What is Lymphedema?
n accumulation of protein rich fluid called lymph that causes a swelling in the interstitial spaces (just under the skin) between connective tissue. This swelling around the connective tissue is caused by the lymphatic system’s inability to carry away accumulated fluid and often occurs in an arm or leg, but can occur anywhere in the body. Lymphedema can be due to primary or secondary conditions. Primary lymphedema is caused by a congenital condition in which lymph nodes or lymph vessels are deficient or impaired. Secondary lymphedema is an acquired condition that may arise following the removal of lymph nodes during surgery or destruction of lymph nodes and lymph vessels from radiation, infections or other injury. Lymphedema can occur shortly after surgery or radiation or may not develop for years. Patients who have had breast cancer with lymph node dissection and radiation or patients who have had pelvic surgeries for ovarian, bladder, prostate or colon cancer are all at risk for developing lymphedema. Lymphoma and malignant melanoma patients are also at risk.
Lymphedema is categorized into three stages. Stage I is reversible and is marked by swelling and pitting of the skin. Pitting is characterized as a dimpling when pressure is placed on an area, much like the “Pillsbury Doughboy,” e.g., if a finger is pushed into the skin it leaves an indentation that may take a few minutes to disappear. Elevation and lymphedema therapy often help to reverse the first stage of lymphedema. Stage II lymphedema is irreversible and must be managed. Swelling will occur whenever management is not underway. Tissues are firm and may also be accompanied by pitting. Stage III lymphedema is rare. It is marked by severe skin changes and is referred to as lymphostatic elephantiasis.
The human body has 600 to 700 oval shaped lymph nodes that range in size from 1/16 of an inch to one inch. These lymph nodes filter and purify the fluid that flows through them, rendering bacteria and viruses harmless. The lymph vessels leading to the nodes are a complex network of channels with one-way valves. They remove metabolic wastes, excess water, toxins and foreign substances from the connective tissue. Ultimately, the fluid that is processed by the lymphatic system returns to the blood stream. The lymphatic system moves and processes two to four liters of lymph in a 24-hour period. The lymphatic system is like a garbage disposal for the human body. The lymph system is divided into quadrants such as the leg and pelvis or the arm and chest. Each quadrant has a basin of lymph node chains that become interim draining points en route to the final draining point in veins at the neck. The areas in the body with the highest concentration of lymph nodes are the neck, the armpits (axillary), the groin (inguinal) and the abdomen.
Cancer treatments that damage these areas can cause lymphedema. The natural flow of lymphatic fluid may be impeded by missing passageways or missing lymph nodes that have been damaged or removed during treatment, like a roadblock. When these pathways are broken or interrupted, the amount of fluid in the tissues can outweigh the transport capacity of the remaining lymph vessels and this protein-rich fluid becomes stored within the tissues, unable to escape through the usual channels. These trapped protein cells begin to absorb water, causing swelling and discomfort.
This condition can be as serious as it is painful. The added weight of the edema can keep the affected arm or leg from functioning and moving properly. Furthermore, as the edema persists, the absorbed water within the protein cells begins to stagnate and the tissue becomes highly susceptible to infection from a cause as minor as a pinprick. The resulting infection, known as cellulitis, must be treated immediately with antibiotics and sometimes may require hospitalization. Symptoms of infection include a red or hot area especially around a puncture wound, cut, scratch or burn. Other signs include general malaise or flu like symptoms, such as fever with no evidence of broken skin.
It is important to recognize the potential signs of early lymphedema. While it may begin as a recognizable swelling, it may also feel like a tightness or heaviness of the affected area/limb. Early signs might include a tightness of clothing–a foot that does not fit into a shoe or an indentation at the sock line that is exaggerated. One of the ways to assess swelling is to look for symmetry in hands, wrists, arms, legs, ankles. Compare areas such as hands for wrinkles, veins, tendons/bones and general definition of these structures. Arms or legs can be measured at several points. Lack of symmetry between limbs may be an indication that the lymph is causing swelling. It should be noted, however, that sometimes one limb is larger than the other due to dominance of that limb. If you are at risk for lymphedema, taking measurements of the limbs in advance might be one way to help detect it early.
Prevention of Lymphedema
While there is not overwhelming research on the prevention of lymphedema there are some ideas about potential causes or exacerbators of the conditions for people at risk or those who have already had an episode of lymphedema. Heat can be a cause because it makes molecules and blood vessels expand and fluid escapes faster. An impaired lymphatic system cannot handle this increased fluid. Heat can be generated internally through excessive exercise. External heat factors such as hot water, hot sun, and flames can also be problematic. Prevention techniques include keeping water temperatures below 98 degrees, wearing oven mitts when handling hot kitchen items and cooling down after activities. Avoiding alcohol is also a good idea as it generates heat and fluid release. Alcoholic consumption causes a depletion of water and a greater concentration of protein, making it more difficult to manage lymphedema. Deep tissue massage has a similar effect as heat because it increases circulation and the release of fluid into the tissues. Deep tissue massage is okay in uninvolved quadrants because the increased heat production from increased circulation to the muscles is less than with exercise, but should not be done to affected areas because it will cause irreversible lymph vessel damage. There is some controversy about gentle massage; however, avoiding massage in the affected quadrant or area may be the most cautious approach. (Note: The type of massage in manual lymph drainage, MLD, which is used to treat lymphedema and is explained below is different than other types of massage.)
Protecting the skin is very important for people who have lymphedema to avoid changes and skin degradation. Skin punctures can be avoided by wearing protective gloves while gardening, latex gloves while handling papers to avoid papercuts and cuticle remover rather than scissors. If minor cuts and scrapes occur use good first aid techniques such as carefully washing the wound, using antibacterial ointment and avoiding rubbing alcohol. Traveling with a small first aid kit that includes band aids, antibacterial ointment and a supply of antibiotics may be a good idea and should be discussed with your doctor.
Avoiding needles such as injections and IVs in the potentially affected limb or quadrant is also an important prevention technique. When possible use the other arm for blood draws. If not, choose the side that may have had the least amount of damage, e.g., the one that had fewer lymph nodes removed or less radiation. Tourniquets trap fluid in limbs so it is important to avoid these. Many people do not realize that they can create a “tourniquet effect” by carrying a purse or shopping bag on their arm or by wearing a bra that is too tight. Foam padding, bra expanders and other cleverly devised tools can assist in reducing the likelihood of trapping fluids or creating a tourniquet-like effect. Wearing a lymphedema alert bracelet on an affected arm while in the hospital may help to avoid hospital staff from using your affected arm for injections and IVs. Also, blood pressure cuffs can cause similar problems. Alternatives include taking blood pressure on the other arm or leg or making certain that the cuff is not over-inflated. Knowing your usual blood pressure can help the technician reduce the need to tighten the cuff beyond the necessary level.
Stress on the body from overdoing exercise or injury can be another problem. It is important to know your limit and use moderation when making changes in routines. Slowly increase endurance, wear proper compression garments during exercise and try to avoid injury. Exercise can improve the flow and can be taught by a lymphedema therapist. Emotional stress can restrict breathing and breathing deeply helps to increase the natural flow of fluids through the body. Keeping well hydrated should also be part of your overall prevention plan.
Tissues expand when there is less atmospheric pressure. Since atmospheric pressure decreases with altitude, it is a good idea to wear compression garments to provide additional support when flying or in higher altitude areas. For individuals who have never had lymphedema but may be at risk, a properly fit compression sleeve is recommended. Before wearing a sleeve on a plane, it is advisable to have a “test run” and wear the sleeve for a week before the trip to make certain that it fits and does not create problems. If traveling is infrequent, make certain that one’s body has not changed in the interim before traveling and that the sleeve still fits appropriately.
Treatment of Lymphedema
When part of the lymph system is damaged, the body has an amazing ability to compensate for changes. The body often builds bridges from one lymph vessel to another or from a lymph vessel to a vein. These are called anastamoses. The goal of lymphedema treatment is to provide a complete program of support to assist the body in its compensation through therapeutic techniques and prevention interventions. The key elements in treatment include some of the issues described above which include skin care and prevention, manual lymph drainage massage, bandaging or other nighttime compression garments, remedial exercises and gradient compression garments worn during the daytime. The therapy is called Complete Decongestive Therapy or CDT. An intensive program is initiated after assessment that combines manual lymph drainage massage (described below) and daily compression bandaging for two to three weeks, followed by wearing a compression sleeve. A critical part of CDT is teaching patients how to manage lymphedema on their own with exercises, self-bandaging and self-massage techniques. Patients learn how to prevent swelling and infection. All of the above mentioned components should be included and should be taught by a certified lymphedema therapist.
CDT can greatly reduce excess fluid in a swollen limb. Some patients have found that the limb goes back to normal or near-normal size, skin color returns to normal, and the amount of pain is reduced.
What is Manual Lymph Drainage?
Manual Lymph Drainage (MLD) is a highly specialized massage technique. It uses light-pressured strokes in a specific direction to stimulate the lymph vessels just below the surface of the skin without increasing blood circulation or reaching the depth of muscle tissue. MLD helps remove excess water, protein and wastes from connective tissue through the lymph system which then carries the filtered, purified fluid back into the blood stream. In MLD-stroking for lymphedema, the therapist channels the blocked fluid to various healthy lymph basins and bypasses regions of missing or damaged lymph nodes.
MLD, which has been practiced in Europe for decades, has been extensively researched by medical doctors and scientists. It was initiated and developed in France in 1932 by Dr. Emil Vodder and was later further developed by Vodder and other world-renowned lymphologists such as Drs. M. and E. Foldi (Germany), Dr. A. LeDuc (Belgium), and Drs. J.R. and J. Casley-Smith (Australia).
Beware of other types of massage. A technique known as “lymphatic massage” is not the same as MLD and is intended only for people who do not have compromised lymphatic systems. A basic “lymphatic massage” will not re-route fluid and, thus, will not be effective in treating lymphedema. Deep-tissue massage techniques, such as Swedish massage, can result in increased swelling. Anyone seeking treatment for lymphedema must be careful to find certified lymphedema therapists at reputable institutions. Lymphedema therapists may be physical therapists, occupational therapists, nurses, massage therapists or physicians who have received specialized training in lymphedema management. The schools require a minimum of 125 training hours and are approved by the Lymphology Association of North America (LANA).
There are many lymphedema resources which we have listed. The National Lymphedema Network, (NLN) is a good patient resource. They have a newsletter, sell the alert bracelets, and provide information on prevention, schools, research and insurance issues. Many of the resources are available in our Center or on our website in the section entitled, Cancer Support Community, www.CancerResources.mednet.ucla.edu. To contact the therapists who presented this lecture, please contact the Center for their direct dial telephone numbers.
- www.lymphnet.org: The National Lymphedema Network (800 541-3259)
- www.clt-lana.org: Lymphology Association of North American (LANA)
- www.oncolink.upenn.edu: University of Pennsylvania Medical School
- www.lymphaticresearch.org: Lymphatic Research Foundation
- Coping with Lymphedema by Swirsky and Nannery (Avery Publishing)
- Lymphedema-A Breast Cancer Patient’s Guide to Prevention and Healing by Jeannie Burt and Gwen White PT (Hunter House Publishers)
- Lymphedema an American Cancer Society booklet (800-227-2345)
- Primer on Lymphedema by Debra G. Kelly, PT, M.S. Editor (Prentice Hall)
For reprint authorization, contact SimmsMannCenter@mednet.ucla.edu.