A SURVIVOR'S STORY

By now, most breast cancer patients who undergo a mastectomy or lumpectomy know about arm lymphedema, a common condition involving upper extremity swelling that can occur following surgery, radiation or chemotherapy. Many breast cancer survivors and health care providers falsely believe that as long as their arm does not swell they have avoided the life long condition of lymphedema.

Unfortunately, patients who undergo breast cancer surgery, either lumpectomy or mastectomy, radiation or breast reconstruction are at risk for developing a similar condition known as truncal lymphedema. Lung cancer patients are also at risk for truncal lymphedema. This condition involves swelling in the chest or back following one of the above listed procedures. It can present with or without significant involvement of the adjacent upper extremity. Truncal lymphedema often remains undiagnosed or misdiagnosed due to difficulty in accurately and objectively measuring its presence or severity. Symptoms of truncal lymphedema are similar to that of upper extremity lymphedema. The primary symptom that patients report is pain in the shoulder, chest wall or back. It is usually more severe than the pain patients report with arm lymphedema. Anterior chest wall swelling is commonly present, especially in the affected breast or chest wall where the breast once was. Some women have swelling collect under the incision from their surgery. Swelling of the back, shoulder blades or involved side of the trunk is also often common. As stated earlier, swelling may or may not occur in the involved arm. If the patient has undergone breast reconstruction, edema may settle around the newly constructed breast and may lead to complaints of fullness, poor shape, breast asymmetry or discomfort. These symptoms persist long after the healing stage of reconstruction and are often accompanied by tissue texture changes such as fibrosis and scar or breast tissue contracture. Patients can affect the degree of development and progression of truncal lymphedema. Steps taken to avoid increased pressure or the tourniquet effect are the best line of defense. Underwire bras are not recommended for anyone who has breast cancer or is at risk for developing lymphedema. Avoiding a heavy prosthesis which puts added pressure on the chest wall and loads bra straps is recommended. Eliminating narrow bra straps and using wider, padded straps helps to disperse pressure over a greater area, easing the tourniquet effect. It is also a good idea to ensure proper bra fit, especially avoiding constriction around the chest. Choosing a bra with a wide, flexible band decreases circumferential chest compression. Experienced certified fitters and breast prosthesis vendors can direct patients to find the right bra for their body type and needs. Patients should also be advised to avoid constriction around the waistline (i.e. belts, tight waistbands) to minimize circumferential compression. Medical treatment for this condition involves a multidisciplinary approach. Patients should contact their physicians if they notice acute or persistent swelling. Medical workup may be performed to rule out infection or other problems. Physical Therapy is commonly ordered to start complete decongestive therapy (CDT), scar tissue or fibrosis mobilization, therapeutic exercise and compression therapy. CDT includes intensive, hands-on manual lymphatic drainage techniques to be performed by a therapist with specialized training in lymphedema management. A therapist with this training knows specific techniques and patterns for redirecting and removing excess lymphatic fluid. Studies have shown that CDT, in conjunction with scar tissue or fibrosis mobilization can significantly reduce the presence of edema, improve range of motion, and reduce pain. Lymphedema therapists will teach patients how to perform self massage, scar tissue mobilization and exercise at home so that the patient can manage this condition for a lifetime. Many patients do require short or long term use of compression therapy which may include use of specialized bandages, compression pads or custom bras. The specialized bras work to provide compression where it is needed most while avoiding the tourniquet effect on the chest wall, back or shoulders.