FAQs about Lymphedema
What is lymphedema?
Lymphedema is an abnormal collection of lymph, a high-protein fluid that flows just beneath the skin. It is a chronic condition that develops when lymph nodes in a particular area are damaged and can no longer move 100% of flowing fluid from that area, where it builds up and causes swelling. This can occur after a surgical procedure, infection, radiation treatment, or other physical trauma.1-4
Lymphedema has no cure and often goes undiagnosed because the medical community has not been well educated about it. Physicians could benefit from more in-depth research on, and education about, lymphedema.
What is the lymphatic system?
The lymphatic system is part of the immune system, containing cells that fight infections. It is a transport mechanism that brings those cells to where they need to work and then drains them away. When the lymphatic system is compromised by surgery, trauma, or improper development, the affected part of the body is prone to recurrent infection.1
Why is lymphedema associated with breast cancer?
Lymphedema can develop after lymph nodes under the arm are tested or removed to diagnose, stage, or treat breast cancer. In advanced breast cancer, lymphedema generally develops in the arm, hand, breast, or torso on the same side of the body as the procedure.2
What are risk factors for lymphedema?
The risk of developing lymphedema varies based on individual circumstances including general health and method of lymph node removal. There is a low risk of lymphedema when you have a sentinel lymph node biopsy where one or just a few lymph nodes are removed from the armpit area to check for cancer. The risk increases with an axillary lymph node dissection. This procedure removes a greater number of lymph nodes that may have cancer. Radiation treatment can also increase the risk of lymphedema.1,4
The lifetime risk of developing lymphedema for breast cancer patients is 15-25%. For those who have surgery using sentinel node techniques, and have no subsequent radiation, the risk goes down to about 6%.1
Other things that can damage your lymph system include an infection after surgery, severe injury to your surgical area or the affected arm (such as a serious burn or wound), new tumor growth, and being overweight.2
Does lymphedema come back?
Lymphedema can develop or reappear months or even years after treatment.5 The primary risk for developing lymphedema is in the first year after surgery and radiation therapy. By then, 90% of all cases will have appeared. That number goes up to 95% after 3 years. Minimal risk remains after that. Vigilance in daily care, taking precautions, and remaining under surveillance can minimize long-term risk for later development of lymphedema.1
Do my emotions play a role?
It is natural to feel anger and frustration when you develop lymphedema after having already had breast cancer. Your body may look or feel different. It can be upsetting and uncomfortable and can affect your self-image as well as your ability to do some of the things that were once routine. It is important to try to live life in as normal a way as possible. Talking about your feelings while seeking support from friends, family, and the medical or support group community can help you express feelings and learn ways to cope. This should help deal with emotional as well as medical components of having lymphedema. Some people may experience severe emotional responses including anxiety or depression. Be sure to seek medical advice if you are having difficulty managing your emotions.
What are the signs of lymphedema?
Symptoms of lymphedema include swelling, a feeling of heaviness or tightness in the extremities, reduced mobility in the limbs and an increase in pain and/or infections.
Can I prevent lymphedema?
There is no exact way to predict who will develop lymphedema. Taking steps to prevent lymphedema can have a positive impact on outcomes. Vigilance and keeping careful watch for possible danger or difficulties can help reduce associated swelling, discomfort, and risk of infection. Exercise, eating a healthy diet along with weight management, and good skin care can also help reduce the chances of developing lymphedema.1,2
Skin protection is an important preventive component. A skin care regimen that uses gentle soap and moisturizers, keeping skin clean and dry, wearing sunscreen, garden gloves, and other protective gear can prevent skin from cracking. Be careful not to cut yourself. If your skin is cut or bruised, clean the area and use antibiotic ointment to prevent infection. Call your doctor or seek medical attention if you are not healing or notice the infected area is getting worse.
What is a Lymphedema therapist?
Lymphedema therapists receive special classroom and practical training prior to being certified. They combine physical therapy and manual therapy skills to provide a full range of therapeutic services to combat lymphedema. Some health insurance plans cover these therapists, some do not; so be sure to check in advance. A doctor, physical therapist or lymphedema therapist can manage your treatment. An initial evaluation should measure limb volume (the amount of excess fluid retained), identify functionality, including goals and limitations, and specify a course of treatment.5,6
What is CDT?
A lymphedema therapist can create a plan for complete decongestive therapy (CDT). Elements of CDT include diagnosis, manual lymphatic drainage (MLD), multilayered compression bandaging, wearing compression garments, therapeutic exercise, and ongoing self-care. Other approaches include pneumatic pumps instead of manual drainage, medical Kinesio tape, which can be applied to the skin to direct lymph to reduce swelling, and aquatic therapy.5,6
What are the options to treat lymphedema?
A non-surgical approach is first-line treatment for lymphedema. Surgery is a possibility but generally only after other approaches have failed. Consult your physician or lymphedema therapist to determine whether surgery is necessary and appropriate for you.1,4,5
First line treatments focus on reducing swelling and controlling the pain of lymphedema.
- Exercises: Light exercise can promote lymph fluid drainage. Don’t overdo it; strenuous efforts can make your condition worse. Yoga and deep breathing exercises also help keep you flexible and promote good mental health.
- Bandaging: Wrapping your affected limb encourages lymph fluid to flow back toward the torso. You should be instructed in the proper method of bandaging. They are generally tightest at the furthest point, e.g., around your fingers or toes and get looser as it goes up your arm or leg.
- Manual lymph drainage: MLD is a special massage technique that helps the flow of built-up fluid (lymph) out of an affected area. Lymphedema therapists are specially trained in these techniques. If you have an active skin infection, blood clots, or active disease you may be instructed to hold off on massage until those conditions clear.
- Pneumatic compression: Some people find intermittent pressure an effective way to help drain lymphatic fluid. A pump connected to a sleeve worn over your affected area alternately inflates and deflates the sleeve to promote movement decreasing the fluid build up.
- Compression garments. Long sleeves or stockings made to compress your arm or leg encourage the flow of the lymph fluid out of your affected limb. Wear a compression garment when exercising the affected limb.
- Healthy eating: Watching your diet, by decreasing salt and limiting processed meats, can reduce fluid retention. Weight management is also important, as being overweight can exacerbate the condition and reduce mobility.
- Elevation: Raising the affected area above the heart allows gravity to work naturally to help drain excess fluid.
What are compression garments?
Medical Compression Wear, also known as compression garments, are wearable sleeves, gloves, shapewear, shirts, shorts or socks that help prevent fluid buildup. They apply pressure to the body parts to keep lymph moving in the right direction. They are an integral part of any treatment plan.5
The most important element of compression wear is getting them properly fitted. There are trained fitters who can help you identify the garments that will be useful for your condition. Specialty stores and websites sell compression garments. Search the terms “compression garments” and “medical compression wear” to identify stores near you. Some websites to consider include5:
What restrictions do I have with lymphedema?
It is important to get back to a normal routine. It is safe to exercise, work, drive, and fly. Consult your treatment plan to understand personal limitations. To reduce the chance of infection and injury, avoid manicures in public salons, protect the affected area by having blood pressure checks, blood draws, or injections on the opposite arm or hand. Even try to carry your handbag or briefcase, and anything else that exerts pressure, on the opposite side of your body. Physical activity increases blood flow, which increases the formation of lymph. Understand your limits.1
How old were you when you were diagnosed with metastatic breast cancer?