Women who have had lymph nodes removed during surgery or radiation to the lymph area under the arm are at risk for lymphedema, a swelling in an extremity, caused by an accumulation of lymph, or intercellular fluid. According to the American Cancer Society, an average of one in five, or 15-20% of women who have had standard lymph node removal, will develop lymphedema. One study estimates the prevalence at 49% when including self-reported symptoms of lymphedema. Approximately 400,000 U.S. women have the condition. Because it affects a number of our patients, we asked Wilma Morgan OTR/L, CLT-LANA, the Lymphedema Specialist in Fox Chase’s Rehabilitation Department, to address some common questions surrounding lymphedema and how it can be prevented or controlled. If you are concerned about lymphedema, please don’t hesitate to contact your oncologist or Wilma. If you have specific questions for Wilma, please submit them in the comment section below, or call her at 215-728-7000.
Q. What are the signs and symptoms of lymphedema?
The onset of lymphedema is typically one to three years after treatment and can be very subtle and unpredictable. Lymphedema can also arise 20 years after surgery. For that reason, the criteria are not universally recognized and professionals may find it difficult to recognize the symptoms.
Also be aware that lymphedema can occur after gynecological cancer, such as vulva, ovarian and uterine. Swelling can occur in either one leg, both legs and genital areas.
Lymphedema usually presents with a feeling of tightness, heaviness or aching in the arm, and you may notice decreased flexibility in the limb or a buildup of fluid in the trunk, chest wall, or limb. There may also be changes in the skin, with tightness or pitting. In some people the swelling is painful, and in others it’s not. Some people experience pain in the shoulder or back as well. Others report a feeling of fullness, heaviness, or tingling in the arm, trunk or back.
Q. What are the risks and what precautions can a patient take?
Patients who have had lymph nodes removed are familiar with many of these precautions. First, blood pressure measurements, blood draws, IVs and other interventions no longer take place on the arm on the side where the lymph nodes were taken. This is part of the recommendation to avoid constriction or pressure on the arm, along with avoiding tight jewelry, clothing or shoulder straps.
Patients also want to avoid straining or overloading the muscle in the arm. However, this does not mean that you should avoid exercise. In fact, recent studies have shown that slowly progressive strength training is safe for breast cancer survivors and that among women who participated in twice weekly, slowly progressive strength training, the risk of lymphedema flare-ups decreased by half. Strength and body image improved as well. The important point is to start gradually and build up over time.
Patients who have had lymph nodes removed are also advised to avoid infection to the arm on that side by keeping it clean and moisturized, using an electric shaver instead of a blade, and using insect repellent to prevent bites. Also, when getting a manicure, ask your technician not to cut the cuticles on your fingers, but to push them back gently. It’s also a good idea to wear gloves when gardening to avoid cuts.
Preventing burns is also important. Use sunscreen and avoid drastic temperature changes and activities that irritate or chap the skin. Use oven mitts for cooking and gloves when washing the dishes.
Changes in air pressure can cause a collection of fluid in the limbs, so patients at risk for lymphedema are advised to wear a compression sleeve and gauntlet on the hand when they fly (and at other times) to control swelling. Today, a company called LympheDivas™ makes the sleeves and gauntlets in a variety of colors and patterns.
Also, when traveling, be careful not to lift or carry heavy luggage, which can overload muscles and cause swelling. Drink plenty of water, because dehydration will draw in protein molecules to hold water, which can cause or worsen edema.
Q. Is lymphedema temporary? What are the current treatments?
Lymphedema can be temporary or chronic, but it in either case, it can almost always be managed. The goals of treatment are to utilize remaining lymph vessels and other lymphatic pathways, decongest swollen body parts, eliminate scar tissue, avoid the re-accumulation of lymph fluid, decrease the risks of infections, and maintain the normal or near normal size of the limb. Strategies to achieve these can include meticulous skin and nail care, manual lymph drainage, compression bandaging, remedial exercises, and training in self-care and lymphedema management.
We are very excited to be one of the few hospitals in the area to offer laser therapy for lymphedema. It currently has been FDA approved for breast cancer but we hope soon that it will be approved for all lymphedema treatment.
Q. What is the role of the lymphedema therapist?
Lymphedema can be an overwhelming condition, altering a patient’s physical appearance, lifestyle, and self-image. It often causes feelings of anger, frustration, sadness, fear, or hopelessness. But it doesn’t have to be that way. The role of the lymphedema specialist is to support the patient as the oncologist coordinates a tailored treatment plan, and to help the patient adhere to the plan. The lymphedema specialist is there to offer strategies and coping tactics based on both the latest research and on her experience with a wide range of patients.
Lymphedema is a condition that can be successfully managed through teamwork between the patient and her providers. The Fox Chase Women’s Cancer Center is committed to working with women to minimize the effects of lymphedema physically and emotionally, so that no one need feel she is on her own in managing it.