Understanding and Managing Lymphedema
Women treated for breast cancer are at risk.
Surgery for breast cancer usually involves removing a few lymph nodes from the underarm to see if the cancer has spread. Typically a sentinel node biopsy is done to see if the tumor cells have spread to the lymph system. Depending on the size of the tumor and lymph node status axillary lymph nodes may be removed. Vessels that carry lymph fluid from the arm to the rest of the body may also be removed or damaged in the process, changing the way the lymph flows and making lymph fluid more difficult to circulate. If the remaining lymph vessels cannot remove enough of the fluid, the excess builds up in the tissues, causing swelling and discomfort, or lymphedema.
Talk to your Doctor BEFORE breast cancer treatment about the risk of lymphedema and ways to minimize that risk before undergoing treatment.
Why do I need to know about Lymphedema?
Lymphedema is a condition involving a buildup of lymph fluid in the body tissues when the lymphatic network has been injured or compromised. Surgery and or radiation for any type of cancer that affects the lymphatic system — such as breast or pelvic cancer, lymphoma, or melanoma — put the body at risk because the lymphatic network can be injured or compromised. Lymphedema occurs when lymphatic vessels are damaged or lymph nodes removed, preventing the flow of fluid through the lymphatic network. A buildup of fluid occurs and has nowhere to drain and no way to be cleansed. It can cause arms and legs to swell, to ache, to become infected. Although it usually affects arms or legs, it may also affect the face, ankles or trunk, or areas remote from the surgical site. These symptoms can become worse over time if not treated. However, it does respond well to specialized treatment, especially if diagnosed at an early stage, even though there is no way to predict who will develop it.
- It can be caused by trauma, infection, radiation, or surgery
- It can occur in both men and women
- It can develop immediately after surgery and treatment -- or many years later
- It is a chronic and progressive disorder that can usually be controlled if caught early
Lymphedema is not life threatening but it is life changing. Because it is a chronic, often progressive disorder, knowing the symptoms and being aware of ways to lower the risk, is critical. Awareness and self-education is crucial so that preventive measures can be taken and activities avoided that may trigger lymphedema.
What is the lymphatic system?
The lymphatic system is a part of the circulatory system and immune system. The circulatory system is a network of veins, arteries, and capillaries that circulates the blood throughout the body. Blood is pumped through the body by the heart and is composed of red cells (that supply oxygen and remove carbon dioxide), white cells (that fight infection), and plasma. As the blood flows through the capillaries, plasma leaves the capillaries and filters into the interstitial spaces in the tissues. This fluid supplies the cells with nutrients and removes the waste products from cell metabolism. Much of this fluid is reabsorbed by the blood before it flows out of the tissue.
The remaining fluid, called lymph, is collected by the lymphatic vessels (which parallel the veins) and is returned to the venous blood before it reaches the heart. The lymph system depends on muscle contractions to move lymph through the vessels. As the lymph is pumped back into the blood, it passes through lymph nodes clustered along the lymph vessels. White blood cells circulate in the lymph fluid, fighting infection and cleaning out harmful cellular wastes and proteins. The main function of the lymphatic system is to maintain a balance of fluids in the body and filter harmful substances from the lymph fluid. From one to two quarts of lymph fluid are moved by the lymphatic system each day. Lymphedema interrupts the flow of fluids through these systems and causes a buildup of fluid in the affected tissue.
Ways to reduce swelling after surgery
Short term swelling of the affected arm or breast after surgery is common and to be expected; this usually lessens over the next 3 to 12 weeks. Once your doctor gives you the okay, you should:
- Use your affected arm as you normally would for bathing, dressing, eating, and combing hair.
- Talk to your medical team about doing exercises to get back normal shoulder and arm movement. To relieve pressure, raise your affected arm above your heart several times a day, and open and close your fist 15-20 times to pump lymph fluid out of your arm.
- With radiation therapy, the swelling may last longer, but even during treatment you should do gentle stretching exercises to maintain movement in your arm and shoulder.
Remember: your goal is to use your arm as normally as possible as soon as you can.
Precautions to lower risk
It is not clearly understood why some people develop lymphedema and others do not, no matter what they do. However, it is best to take some precautions and to be alert to subtle symptoms.
- Always have blood draws, shots and IVs done on your unaffected arm.
- Practice meticulous skin care, keeping your skin clean, well-nourished and in good condition. Use insect repellant and sun screen. Wear protective gloves when using chemical cleansers, washing dishes, using steel wool, gardening, or doing yard work.
- Avoid extreme temperatures, both hot and cold.
- Avoid hot tubs, saunas, steam rooms and whirlpools. Stay out of the sun during the heat of the day.
- Clean and protect any skin breaks, and treat burns quickly and carefully with antibiotic cream and sterile bandages to prevent further injury or infection.
- Avoid pressure or constriction on the affected arm. Avoid shoulder straps when carrying purses of briefcases.
- Exercise regularly but not strenuously as overuse can trigger lymphedema. Avoid vigorous or repetitive activity, such as heavy lifting or pulling.
- Maintain your ideal weight for better lymphatic flow.
- Eat healthful foods, including fresh vegetables, fruits and whole grains, and drink lots of water.
- Use a lightweight prosthesis to lessen the pressure on the incision and surrounding tender areas.
- For air travel, wear compression sleeves and gloves, and elevate the affected arm as often as possible. Drink extra water to avoid dehydration. And remember: low cabin pressure can trigger lymphedema.
What to watch for with lymphedema
Lymphedema can develop anywhere that lymphatic vessels are damaged, anywhere that scarring has occurred, or anywhere lymph nodes have been removed. Lymphedema usually affects arms or legs but may also affect the trunk, face or other parts of the body remote from the surgical site.
Symptoms of lymphedema may be so mild that a person only notices a passing heaviness, fullness or tightness in the affected limb: one arm may feel puffier or more swollen than the other, a ring or watch may feel tight or a sleeve too small. These may be early warning signs of a compromised lymphatic system. Unfortunately, there is no way to predict who will or won't develop lymphedema, or when, if or how it may happen.
These symptoms should NOT be ignored.
Symptoms of lymphedema may include:
- Tight fitness of rings, watches, bracelets, or clothing.
- Feeling of heaviness, discomfort or fullness in the arm or leg.
- Decreased flexibility in the hand, wrist, elbow, or shoulder
- Thickening or redness of the skin.
- Decreased flexibility in the fingers, hand, wrist, elbow, or shoulder.
- Swelling in the arm, armpit or chest
- Pain, heat, redness and/or inflammation anywhere in the body. This can be the first sign of infection.
Delayed Diagnosis may limit your treatment options.
There is no way to predict if or when lymphedema will develop. Criteria for diagnosing lymphedema are subtle and not universally recognized and it is difficult to precisely evaluate the symptoms. In addition, most health care professionals are not well educated about lymphedema.
Although lymphedema is a chronic and progressive disorder that can worsen over time, early detection and treatment can help control it. Lymphedema education is critical, both before and after surgery, so that patients know what preventive measures can be taken, know what symptoms to look for and know what activities may trigger it.
Be Alert, Be Aware and Be Educated
YOU ARE YOUR OWN BEST ADVOCATE! It is up to you to monitor and be aware of any changes in your condition and consult your medical team for treatment. Early signs of lymphedema, such as aching or swelling or redness, should be discussed with your health care provider right away. Lymphedema that is not promptly treated can cause a buildup of lymph fluid in the tissues which can lead to infection, increasing discomfort, swelling, and permanent fibrotic changes in the tissue.
Delayed diagnosis may limit your treatment options.
If you suspect that you have lymphedema, it is important to consult your doctor right away. The earlier lymphedema is treated, the better the results.
Complete Decongestive Therapy (CDT) is a specialized treatment for lymphedema. Treatment helps reduce and control swelling. It is prescribed by your doctor and performed by specially trained therapists that are certified for CDT (135hr certification). It is important to check the credentials of your therapist to insure proper training. Check with your insurance company for coverage. CDT consists of the following components:
- Manual Lymph Drainage (MLD) is a massage technique for lymph drainage. MLD moves the built up fluid from congested areas into the blood stream using very gentle and specific massage movements. MLD can be done as a separate component by therapists certified in MLD.
- Compression sleeves, stockings and bandages supply external pressure to the affected limbs to prevent fluid buildup. Following drainage, patients should be measured and fitted for these compression garments by trained practitioners. (Note: many insurance plans cover such medically prescribed treatment, along with compression garments and bandages.)
- Exercises specifically designed to pump lymph through the lymphatic system increase range of motion and relieve pressure on affected limbs.
- Skin care, including careful hygiene and topical skin care products, prevent infection.
Local Programs Beneficial to Lymphedema
The Beth C. Wright Cancer Resource Center has many programs available to help you deal with your cancer. Programs related to and helpful for lymphedema at the Center are:
Mondays, 1:30-2:30 - Therapeutic Exercise – John Penkalski, instructor. Combining movements and exercises from qigong and Tibetan yoga along with breathing and visualizations, this class will help harmonize body, mind, and spirit adding to general well-being. Research in the United States and China has found qigong and thrul khor to be beneficial to cancer survivors following conventional or integrated therapy. John Penkalski practices Oriental medicine and acupuncture and has studied Yoga and qigong for over 35 years.
Mondays, 3:00 – 4:00 Reiki Healing Session - Reiki is a Japanese technique for stress reduction and relaxation that triggers the body’s natural healing ability and improves and maintains health. The word “Reiki” means “universal life energy” and is administered by a practitioner by placing their hands on or near the recipient. Reiki addresses imbalances in the flow of energy throughout the body. Used by a growing number of hospitals, it helps to alleviate pain, reduce stress and promote deep relaxation. Reiki treatments before, during or after a session of radiation or chemotherapy may reduce side effects such as fatigue and nausea. There is a seated Reiki healing circle at BCWCRC every week.
Wednesdays, 9:45-10:15 -Cancer Recovery Exercise Program (Held at Down East Family YMCA, Ellsworth) - This class is a collaborative effort between the Down East Family YMCA and the Beth C. Wright Center. This program is designed to help cancer patients who have cancer related fatigue due to radiation therapy, chemotherapy, or the disease process. The program provides an atmosphere of encouragement, exercise, and group motivation in order to alleviate the side effects of cancer treatments. Exercises are designed to improve cardiovascular fitness, muscular strength and endurance, and flexibility and are good for lymphedema. Each person will meet with a certified cancer exercise specialist before starting the class.
Wednesdays, 10:40 – 11:40 Yoga Class - Mary Cline, Instructor This will be a gentle but invigorating yoga class including yoga postures, breathing, relaxation and guided imagery. This Iyengar style class is for beginners and experienced students. Join us for stretching, relaxation and fun.
Wednesdays, 11:40 – 12:15 - Breathing and Deep Relaxation Class- Mary Cline – Instructor Enjoy the benefits of stress reduction and improved health that can come from these practices. This class can be done sitting in a chair, on a mat, or lying down. This class can also be done in conjunction with the yoga class.
Thursdays, 1:00 – 2:00 (Held at Jewett Community Center, Bucksport Yoga Class - Mary Cline, Instructor This will be a gentle but invigorating yoga class including yoga postures, breathing, relaxation and guided imagery. This Iyengar style class is for beginners and experienced students. Join us for stretching, relaxation and fun. This class is co-sponsored by Bucksport Bay Healthy Communities Coalition and the Bucksport Recreation Center.
4th Thursday of the month, 1:00-2:30 Caring Connections – Breast Cancer Resource and Support Group A new support and resource group for people affected by breast cancer will be held the 4th Thursday of each month at the Beth C. Wright Cancer Center. The group will be facilitated by the Caring Connections program. Call 664-0339 for additional information.
Lymphedema Treatment Resources for Hancock and Washington Counties
Results Physical and Occupational Therapy
890 Hammond Street
Robert Lammer, PT
Pine Tree Physical Therapy
760 Union Street
Christy Stout, PT
Bucksport Physical Therapy
Kim Deversterre, PT
Maine Coast Memorial Hospital
Marie-France Browning, PT, CLT
Charlotte "Charlie" Stephens, PT
Amanda Jacobs, PT
Raven Hill Integrated Therapies
Gregory Molatch, OT, CHT
Tammy Grice, COTA/L
Down East Community Hospital
Gwen Jones, PT, MS
American Cancer Society
Susan G. Komen for the Cure
The National Lymphedema Network (NLN)
The National Cancer Institute
Mercy Hospital, Portland, ME
Maine Breast Cancer Coalition (financial support)
Lymphatic Awareness Foundation
Lymphology Association of North America (LANA)
Lymphatic Research Foundation
Imaginis – Lymphedema
Medifocus Guidebook on Lymphedema
CANCERcare support services
ASCO / American Society for Clinical Oncology
Juzo Compression Garments
Jobst Compression Garments
Lymphedivas Compression Garments
This section of the web was made possible by a grant from the Maine affiliate of Susan G. Komen for the Cure® to the Beth C. Wright Cancer Resource Center.