For many cancer patients, the side effects that come with treatment can prove challenging.  Secondary lymphedema is one common side effect that impacts some patients who undergo surgery or radiation therapy.  Cancer-related lymphedema is the “silent side effect” that is an incurable and irreversible condition associated with lymph-involved cancer treatments.  Lymphedema can develop shortly after treatment or years later.  This chronic condition not only has a negative impact on quality of life and health, but is also a significant cost burden on the growing cancer survivor population. 

What you need to know…

“Cancer treatments involving lymph nodes can damage lymph drainage routes, causing accumulation of lymph fluid in the interstitial tissue of related limbs and body areas and secondary lymphedema.  Subsequent swelling can cause pain, discomfort, heaviness, distortion, and reduced mobility and function, thereby affecting quality of life physically and psychologically. Although there is no cure, symptoms of lymphedema can be controlled if the disease is detected and treated before it has significantly progressed. The prevalence of secondary lymphedema is increasing as improvements in cancer detection and treatment have led to a growing survivorship population.

Cancer-related lymphedema can affect a survivor of any type of cancer in which the lymph nodes are involved in treatment, including skin, gynecologic, urologic, colorectal, and head and neck cancers.  Evidence demonstrates sentinel lymph node biopsy reduces lymphedema risk in patients with breast and vulvar cancers compared with axillary lymph node dissection. Patients with other solid tumors requiring treatment that adversely affects lymphatic function are also at significant risk of developing lymphedema.  Overweight or obesity at cancer diagnosis is a well-supported risk factor for breast cancer–related lymphedema.

Currently, lymphedema cannot be cured; it can only be managed, with the goal of decreasing limb size and maintaining it, preventing complications, and improving limb function and overall well-being.  The impact of lymphedema on quality of life ranges from subtle to drastic, and feelings include frustration, distress, depression, and anxiety, especially in regard to body image.  These effects extend into social ramifications like role function and social support as well as pain and disability. Breast cancer survivors reported the effects of lymphedema (i.e., swelling, pain, poor body image) threatened their occupations, social life, hobbies, and activities as well as their physical and mental quality of life.

Lymphedema is an unwelcome consequence of cancer treatment, and patients and health care providers should be aware of the signs, symptoms, and risk factors for lymphedema. Access to proper and prompt treatment should then be a priority, and barriers to this care (i.e., cost, availability of certified provider) should be removed.”  DOI: 10.1200/JCO.2012.41.8574 Journal of Clinical Oncology 30, no. 30 (October 2012) 3726-3733. 

Head and Neck Cancer-Related Lymphedema

“Secondary lymphedema is a significant problem in head and neck cancer patients. Depending on the site, head and neck lymphedema can be classified as external lymphedema (involving external structures of the head and neck, eg, facial lymphedema) and internal lymphedema (involving mucosa of the upper aerodigestive track, eg, laryngeal lymphedema). Head and neck lymphedema can substantially impact daily functions (eg, swallowing, speaking) and cause distressful symptoms (eg, body image disturbance).”  Vol. 26 No. 1 – Lymphlink Reprint, Archived January 2014 

Cancer-Related Lymphedema Statistics by the Lymphatic Education and Research Network

All cancer treatment survivors are susceptible to developing secondary lymphedema.  It is reported that 100% of those treated for head and neck cancer will develop lymphedema at some point in their lifetime.  It is projected that 40% of all breast cancer survivors will develop secondary lymphedema in 2016.  Women who undergo axillary lymph node dissection (more than 4 nodes removed), have a lifetime risk of secondary lymphedema of 15 – 25%.  Surgery limited to sentinel node dissection (no more than 4 modes removed), without adjuvant radiation, the risk is about 6%.  Breast cancer survivors with arm lymphedema have been found to be more disabled, experience a poorer quality of life, and have more psychological distress than do survivors without lymphedema.  In addition, women reporting swelling have reported significantly lower quality of life with multiple functional assessments. 

90% of lymphedema cases occur in the first year following surgery and radiation therapy.  By the end of three years, 95% of cases will have developed.  After three years, the risk remains, but it is small.

Studies report aggregate total health care costs per patient in a 12-month period were $62,190 for cancer-related lymphedema care (inpatient services $15,458; outpatient services $21,222; office visits $15,278).

Psychosocial Impact of Living With Cancer-Related Lymphedema

“Poorer overall health-related quality of life was reported among cancer survivors with lymphedema. The consistent, detailed, and vivid descriptions from the qualitative studies suggest that cancer-related lymphedema exerts tremendous negative psychosocial impact, which quantitative studies failed to capture.

Strategies include helping patients to build a routine for daily care, setting goals, exercise [appropriate for lymphedema], positive self-talk, providing helpful resources, and organizing support groups.”

Additional References:

Pyszel A, Malyszczak K, Pyszel K, et al.: Disability, psychological distress and quality of life in breast cancer survivors with arm lymphedema. Lymphology 39 (4): 185-92, 2006. 

Ridner SH: Quality of life and a symptom cluster associated with breast cancer treatment-related lymphedema. Support Care Cancer 13 (11): 904-11, 2005.