- Primary lymphedema is a rare inherited condition caused by the absence of, or abnormalities in, certain lymph vessels and nodes. This condition may be present at birth or develop at puberty or in adulthood.
- Secondary (acquired) lymphedema can develop as a result of cancer, cancer treatment (e.g., surgery, radiation), infection, trauma, scar tissue, or anything that changes, blocks, or interrupts the flow of lymph through the lymphatic system.
What Causes Lymphedema?
The following are some potential causes of lymphedema:
- Cancer itself (that causes blockage of the lymph system)
- Surgery and/or radiation therapy involving the lymph node region
- Recurrence or spread of a tumor to the lymph nodes
- Infection of and/or injury to the lymphatic vessels
- Inflammation or scar tissue formation
- Temporary loss of lymphatic function
- Blockage of a vein by a blood clot
While lymphedema is most often associated with breast cancer, it can result from treatment for other cancers, such as prostate cancer, gynecological cancers, lymphoma, and melanoma. The greater the number of lymph nodes removed, the higher the risk for developing lymphedema.
Symptoms of Lymphedema
While lymphedema can develop in any part of the body, it most often affects the arms or legs. For instance, if lymphedema develops after breast cancer treatment, it can affect the area around the breast and underarm, as well as the arm closest to the surgery site.
The following are some potential symptoms of lymphedema:
- Swelling in the arms, hands, fingers, shoulders, chest, or legs
- The skin indents when pressed and stays indented (early symptom)
- A weakness or heavy feeling in the arms or legs
- A feeling of tightness or stiffness in the skin
- Pain, heat and/or redness in the affected area
- Aching in the neck, shoulders, spine, or hips
- Decreased movement or flexibility in the hand, wrist or ankle
- Difficulty fitting into clothing; tight-fitting ring, watch or shoes
When Does Lymphedema Occur?
The course of lymphedema varies from person to person, and swelling can range from mild to severe. Lymphedema can occur within a few days, weeks, months, or even years after surgery or during the course of radiation therapy. It commonly develops very slowly, becoming noticeable 18 to 24 months after cancer treatment. Early diagnosis and treatment for lymphedema is important to help reduce symptoms and prevent the condition from progressing.
Treatments for Lymphedema
Lymphedema treatments vary from person to person, depending on the severity and cause. Treatment may include skin care, manual lymph drainage, gentle massage, and light exercises to help stimulate the lymphatic system. Wearing compression bandages, pumps, or garments (e.g., sleeves, stockings) can also help prevent additional fluid from accumulating in the tissue. In addition, medications can help reduce inflammation, prevent blood clots, and treat infections.
What is the Outlook?
When lymphedema goes untreated, the lymph fluid that collects in the tissues can be very uncomfortable. This accumulation of protein-rich fluid can lead to an increase in swelling and a hardening of the tissue, which can cause bacteria to form and an infection to develop. Untreated lymphedema can also lead to decreased function and mobility in the affected limb, skin breakdown, and other complications.
Fortunately, with proper care and treatment, lymphedema may be prevented or controlled. And, while lymphedema can cause a great deal of distress, knowing you have choices in how to manage the condition may help you better cope with the situation.
NOTE: THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS REPORT ANY SYMPTOMS OF LYMPHEDEMA TO YOUR PHYSICIAN IMMEDIATELY.
Tips for Managing Lymphedema
- Communicate with your healthcare team. Better recovery occurs when lymphedema is discovered early, so it is important to tell your doctor if you experience any symptoms. Try to monitor your activities to determine if a particular activity causes the condition to worsen. Also, follow up regularly with your healthcare team to ensure compression garments are well-fitted.
- Support the affected limb in a raised position. Try to keep the affected arm or leg above the level of the heart when possible. Elevating the affected limb may temporarily help to reduce the swelling. Avoid stretching, pulling, or holding your arm over your head for extended periods of time. Also, elevation may eventually become less effective at reducing the swelling.
- Stay alert for signs of infection. Poor drainage of the lymphatic system may make the affected limb more susceptible to infection. Try to check all areas of the arms and legs daily for signs of infection, which may include a fever over 100 degrees Fahrenheit, chills, redness, pain, tenderness, heat, swelling, and/or rash. Immediately report any warning signs of infection to your doctor.
- Wear well-fitting compression garments. Compression garments can help squeeze the lymph fluid through the remaining vessels before it builds up to help prevent swelling. As long as you do not have open wounds or poor circulation, it may help to support the affected limb with a compression garment during strenuous activities or air travel. Compression stockings, sleeves, or bandages must be carefully fitted and monitored to apply the right pressure while avoiding too much tightness near the top.
- Protect the affected area. Try to protect the affected area from scratches, sores, burns, insect bites, or other irritations or injuries. Your body can respond to these events by making extra fluid. Keep the skin clean and dry to reduce the risk of infection. Wear protective gloves while doing housework or gardening. Avoid exposure to extreme cold or prolonged heat, which can be associated with increased fluid build up, swelling, or chapping/chafing of skin.
- Limit certain activities. Avoid muscle strain, vigorous activities, repetitive movements, heavy lifting, or pulling of the affected limb. Also, avoid prolonged lying, standing, sitting or crossing the legs on the affected side. These activities may increase the pressure in nearby blood vessels, which can lead to increased swelling. If possible, try to avoid having blood pressure taken, blood drawn, or injections given on the affected side as well.
- Maintain proper nutrition. Eating a well-balanced diet can help the body tolerate cancer treatments, fight infection, and rebuild tissue. Try to maintain a healthy weight, since being overweight can increase the chances of swelling. Avoid foods high in salt and fat. A
registered dietitian can help develop an appropriate meal plan for you.
- Stay active. Exercise and activity may help stimulate the lymphatic system and improve lymphedema by helping to drain lymph fluid from the limbs. However, it is important to gradually increase the intensity of activity and avoid fatiguing the muscles of the affected area, which can cause injury or additional fluid accumulation. A rehabilitation therapist can help develop an individualized exercise program for you.
- Dress comfortably. Wear comfortable, well-fitting clothing and shoes. Women should wear well-fitted bras and bra straps should not be too tight. Avoid socks, hosiery, or undergarments with tight elastic bands. Wear loose watches, jewelry, and gloves. Avoid carrying handbags on the affected arm.
- Get pain under control. You may experience pain caused by the swelling and pressure on nerves, loss of muscle tissue and function, or scar tissue. Your doctor may treat your pain with medications, relaxation techniques, transcutaneous electric nerve stimulation (TENS), or other methods. It’s important to address pain caused by lymphedema so you can eat well, sleep well, and maintain your quality of life.
- Consult with a rehabilitation therapist. Your doctor may refer you to a rehabilitation therapist trained in managing lymphedema. A rehabilitation therapist can assess your condition and work with you to develop an individualized lymphedema management plan.
- Seek emotional support. In addition to physical challenges, lymphedema can cause emotional difficulties. If you need additional assistance to cope with lymphedema, talk with your doctor about counseling and other available resources. Support groups can be a great source of emotional support.
NOTE: THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTHCARE PROVIDER REGARDING THE MANAGEMENT OF LYMPHEDEMA.
Helping You Manage Lymphedema at CTCA
At Cancer Treatment Centers of America (CTCA), we aim to bring you total care as we help you fight cancer. We understand that a condition like lymphedema can be an uncomfortable and upsetting result of cancer and its treatment.
Your multidisciplinary care team at CTCA, including oncology rehabilitation therapists, will help build an individualized lymphedema management plan for you before and after surgery and/or radiation therapy.
For instance, if you are having an axillary node dissection for breast cancer, you can learn about lymphedema and prevention measures ahead of time. In addition, depending on your treatment plan, a sentinel lymph node biopsy can help reduce the number of lymph nodes that need to be removed and may lessen the chance of developing lymphedema.
Your care team will monitor you closely after treatment so they can intervene early if you begin to show any signs of lymphedema. Your care team will also provide education on techniques you can use in your daily life to stimulate your lymphatic system.
The Lymphedema Program at CTCA combines gentle range-of-motion exercises and massage. Your rehabilitation therapist may use one of the following techniques to either prevent lymphedema, or reduce the swelling associated with the condition:
- Lymph Drainage Therapy (LDT) is a specialized massage technique, designed to activate the pumping action of your lymphatic system and stimulate lymphatic flow. This pumping action reduces and, in some cases, prevents fluid build-up following surgery and radiation.
- Le Duc Manual Lymph Drainage combines manual lymph drainage with multi-layer bandaging and a compression pump, to clear excess lymphatic fluids from your body by activating the pumping action of the lymphatic system.
Furthermore, your CTCA care team will include pain management specialists, dietitians, naturopathic clinicians, mind-body therapists, and spiritual counselors. They will attempt to reduce side effects of your cancer treatment and improve your quality of life throughout your care. CTCA also offers image enhancement services so you can feel more confident and empowered as you fight cancer.
At CTCA, we care for you as a whole person—inside and out. We want to help you move beyond cancer and find healing and hope.
I hope this information has helped you in some way. I will check in with you again next month. In the meantime, stay strong and hopeful.