What is Lymphedema and Do I have it?

One of the first questions nearly every patient asks me is, What is lymphedema? 

Lymphedema is one of the least understood, most underestimated, and minimally researched complications of cancer and its treatment (Cancer.gov). 

A special kind of swelling, lymphedema is rich in waste products and proteins that build up in and just beneath your skin. Cancer-related lymphedema can occur after lymph node removal, post-surgical scarring and radiation therapy. 

Lymphedema doesn’t always look like swelling. At first, the buildup of fluid can be so small it’s just a feeling: heavy, achy, tired. 

Over time and especially without treatment, the feelings often develop into visible swelling, create skin changes like hardening and thickening, and increase risk for infection.

The second question patients generally ask me during our first meeting is: Do I have lymphedema?

Your risk of getting lymphedema after cancer interventions can depend on several factors: what surgery you had, if you are obese or gain weight after surgery, whether or not you had radiation and which type of chemotherapy, and also whether or not you experienced complications after surgery, like an infection or a fluid pocket called a seroma. (Uptodate.com, Author:Babak Mehrara, MD).

It is estimated that 5-40% of women will get lymphedema after breast cancer surgery (Breast cancer.org). With sentinel lymph node biopsy or axillary lymph node dissection the estimates are 11% and 30% respectively. These numbers can increase significantly with radiation therapy.

Some reports suggest as many as 75% of patients with cancers of the head and neck will get lymphedema (Deng J, Ridner SH, Dietrich MS, et al.: Prevalence of secondary lymphedema in patients with head and neck cancer. J Pain Symptom Manage 43 (2): 244-52, 2012. [PUBMED Abstract]).

We also know that lymphedema is most commonly diagnosed 6 months to 2 years after cancer interventions, and the risk for lymphedema after cancer is lifelong.

Do I have lymphedema? This important question isn’t always definitively answered at our first meeting, though it often is. 

My approach to assessment includes skilled touch, observation, manual techniques like drainage massage and scar mobilization, and measurements. These combined with a thorough discussion of your own observations, experiences and sensations, are generally enough to determine whether what you are experiencing is lymphedema. 

We then work together to design a personalized plan of care to reduce your symptoms, promote the health of your intact lymphatics,  and create a robust tool box from which you can draw daily so you can safely get back to doing what you love.