By Monica Hubbert, MOT, OTR/L, CLT
Lymphedema can be a major and long-term concern for many cancer patients, but good communication and collaboration among the patient, the treating oncologist, and supportive-care professionals can lessen these impacts and help patients to move forward with good quality of life.
Lymphedema is a protein-rich edema that results from trauma to the lymphatic system—including damage caused by necessary interventions such as sentinel-node biopsy, node-bed dissection, and radiation therapy — and reflects a mechanical insufficiency of the lymphatic system. It typically occurs in one or more of the limbs and may also involve other body parts, such as the corresponding trunk quadrant, breast, head and neck, or genitalia.
The body continues to produce its normal lymphatic load, but some anatomical change has caused a reduction in the system's ability to accommodate and transport lymph fluid. The accumulation of lymph fluid that results from this insufficiency can lead to considerable pain and discomfort for patients, and significantly limit their mobility and ability to complete physical tasks that used to be routine.
Early referral of all patients experiencing or at high risk for developing lymphedema to a certified lymphedema therapist as soon as possible is advised, but this option is not always readily available. There are many steps an oncologist can take to help patients understand and manage lymphedema, either in collaboration with a certified lymphedema therapist or before a specially trained therapist has been engaged.
Advising Patients on Risk & What to Expect
Education is one of the most important things that clinicians can provide to patients, and to all staff members who have direct contact with the patient. Good communication and flow of information among all these parties throughout a patient's journey enables appropriate triage and is likely to improve the patient's long-term outcomes.
While lymphedema in cancer patients typically develops within the first 2-3 years after treatment, that is just the most common range of onset; patients receiving the treatment interventions outlined above are at lifelong risk of developing lymphedema. The highest incidence of lymphedema occurs in patients with breast cancer, sarcomas, gynecologic cancers, melanoma, genitourinary cancer, and head/neck cancers.
Good education for patients starts before they have surgery to remove lymph nodes or other treatments that can impact their lymphatic system. Patients should be informed of how many nodes will be removed, their location, and what parts or sections of the body are at risk for developing lymphedema, as well as the anatomy, physiology, and pathophysiology of the lymphatic system—what the function and capacity of their lymphatic system was before surgery and what they can expect post-operatively. They should be advised they are at a lifelong risk of developing lymphedema and will have to monitor for symptoms for the rest of their life.
Education for patients who are at risk for lymphedema—all patients who are undergoing a change to their lymphatic system—should include guidance on maintaining a healthy and active lifestyle, how to avoid classic risk factors such as needle sticks or having blood pressure taken on an at-risk limb, when to be concerned about subjective symptoms of heaviness or fullness of the limb, and whom to contact if they suspect that they are experiencing lymphedema. It's especially important that patients in the highest risk group—those with BMI greater than 25, those undergoing or who have undergone radiation therapy, and those who had lymph nodes or node beds removed—be advised at time of treatment that they are at high risk for developing lymphedema. Patients who evidenced infection after surgery or during the acute treatment period are also at higher risk for developing lymphedema.
Practitioners and patients should be aware of the services that may be available through a certified lymphedema therapist. This professional has undergone training in caring for patients with lymphedema at a specialist level, and can be an occupational therapist, physical therapist, nurse, physician, massage therapist, etc. These professionals will perform a lymphedema-specific evaluation and formulate an individualized treatment plan.
Monitoring for lymphedema
A surveillance model should be implemented as part of standard care for patients at risk of developing lymphedema. Every interaction with the patient is an opportunity for the clinical team to monitor for signs of lymphedema. An initial assessment should be performed 1 month following the treatment intervention, and then in 3-month intervals after that for at least the first year.
One of the most valuable sources of information to support this surveillance is the patient's subjective input regarding experiences of sensation of fullness, limb heaviness, achiness, or feeling that clothing or jewelry is becoming tighter, and patients should be urged to not delay reporting these symptoms. A good way to collect and track this input is through either a pre-visit written questionnaire or in person as part of the individual's check-in process.
Baseline data can significantly improve the team's ability to monitor for and diagnose lymphedema. Patients who are at high risk for lymphedema should have baseline circumferential measurements taken at standardized points prior to intervention and intermittently throughout the follow-up process. Bioimpedance devices, if available, can be used to document these measurements and track any changes.
Self-monitoring is a necessary skill for every person at risk of developing lymphedema. Patients should be instructed on how to monitor for subjective signs and symptoms, as well as for intermittent episodes of edema throughout their lifetime. It's also important for patients to know whom to contact when they identify these signs, and for the clinic to have an established protocol for triaging these patients.
A holistic approach to treatment can help empower patients and encourage them to follow through with all the steps involved in managing the symptoms associated with this chronic condition.
When a difference of greater than 1 cm in circumferential measurements between the affected extremity and the non-affected extremity occurs 3 months or more after the initial surgical intervention, a patient may benefit from conservative management. This approach will vary depending on the stage of lymphedema, and may include any or all of the following interventions: fitting the patient with a compression garment, offering skilled instruction on performance of self-manual lymph drainage, performing targeted exercises with compression, education on skin and nail care, and use of multilayered short-stretch compression bandages.
Compression garments may be used prophylactically with a lymphedema that is latent or at the beginning stages of development. These garments should only be provided by individuals who understand compression garments and how to fit for them. Patients are often provided with a compression garment immediately after treatment, when post-traumatic edema is present and fluctuation of weight may still be occurring. Poor-fitting compression garments can contribute to lymphedema symptoms. Another difficulty is that compression garments are given and then worn at a later date when changes to the body composition have occurred. Compression garments should be provided only when there is a source to monitor them for fit and form.
When conservative management is not sufficient for managing the symptoms of lymphedema, complete decongestive therapy (CDT) performed by a certified lymphedema therapist is likely indicated. CDT involves skin care with specific lotions and soaps, wound care, compression bandaging or garments, lymphedema-specific exercises, and manual lymph drainage.
Patients should be educated on the importance of meticulous skin and nail care (including avoiding nail salons or patronizing only highly scrutinized establishments) to reduce the potential for cellulitis or other infections of the skin. Assessment and treatment for nail fungus and/or infections of skin folds should occur prior to referral for lymphedema management; multiple episodes of cellulitis may indicate the presence of an untreated lymphedema. Patients should also be educated on limiting or avoiding the use of lotions or skin products with fragrance or high alcohol content, as these products tend to dry skin and may lead to creases or microcracks.
Patients should be educated on the importance of exercise as part of a healthy lifestyle. When the patient or care team is unsure about whether it's safe for the patient to resume normal activities, "low and slow" is a good mantra—low weight with low repetitions and slow progression.
Pain management and psychosocial support are also critical for patients with lymphedema and should be integrated into each patient's treatment plan.
Connecting With a Therapist
Every member of the clinical team can play an important role in providing guidance, direction, and hope to patient who have or may develop lymphedema.
Organizations such as the National Lymphedema Network and Lymphedema Association of North America are good resources for those looking to locate a certified lymphedema therapist. If you are not able to find one in your area, another option is to reach out to your local therapy resources to discuss your patients' needs. You may also consider creating a position in your clinic or sponsoring an employee for training through a program accredited by the North American Lymphedema Education Association.
Monica Hubbert, MOT, OTR/L, CLT, is an Occupational Therapist at Roswell Park Cancer Institute, Buffalo, N.Y.