In 1984, Catherine (Cathy) Holley, RN, operating room nurse on the Surgical Oncology/Trauma team, began to experience pain and swelling in her leg that never seemed to go away. It wasn’t until the early 1990s that Holley was finally diagnosed with secondary lymphedema, a result of a surgery she had before the swelling began. She quietly lived with and managed the condition in private until a couple of years ago when she was caring for a patient who also had lymphedema. Holley realized she could use her voice, vast medical knowledge and personal experience to become an advocate for lymphedema education and awareness.

“Many people don’t know much about lymphedema and that is one of the biggest problems – we need more awareness and education,” says Holley. “More than 10 million people in the U.S. have lymphedema – more than multiple sclerosis, muscular dystrophy, amyotrophic lateral sclerosis (ALS), Parkinson’s disease and AIDS combined. This is something I am very passionate about and am trying to make a difference here at MGH, as well as in the Boston community.”

Holley now speaks at conferences, educates clinicians and patients at the MGH and co-chairs the newly created Massachusetts Chapter of the Lymphatic Education & Research Network. In recognition of March as Lymphedema Awareness Month, Holley shared some important information with MGH Hotline to continue her quest to educate the public.

What is lymphedema? How is it caused?

Lymphedema is a swelling that occurs due to injury or impairment of the lymphatic system. It can be caused by anything that disrupts the flow of lymph fluid through the vessels or the nodes, causing fluid build-up.There are two types of lymphedema:

Primary lymphedema you can be born with or can develop during adolescence, and is caused by developmental abnormalities of the lymphatic system.

Secondary lymphedema occurs from the inability of the lymphatic system to perform one of its basic functions: the removal of water, protein and waste from the tissues throughout the body. Secondary lymphedema can be a result of any trauma to the body – any surgery, an infection, burns, radiation and cancer, even a mosquito bite. More than half of lymphedema cases are cancer-related, with the highest incidence (more than 500,000 cases in the U.S.) stemming from breast cancer with axillary lymph node dissection.

It is difficult to predict who will develop the condition, but you can get it wherever there are lymph nodes that may be injured. No body part is immune. It can occur immediately, but may also occur years after a major surgery or trauma.

What are the symptoms?

Early symptoms can include feelings of heaviness, tightness or fullness, usually in an arm or leg. There can be a dull ache and swelling. If your clothes or jewelry aren’t fitting, this can be a sign of swelling.

The primary thing to remember if you have had surgery, experienced trauma to an area, had any sort of disturbance to your body or if you think there is a problem, reach out to your surgeon or primary care physician. Find a certified lymphedema therapist – the MGH has them – for an evaluation.

Lymphedema is often overlooked, underdiagnosed and untreated; we all have to be advocates for ourselves. We know how we feel and can identify subtle changes that may occur.

Can lymphedema be treated?

There is no cure, but it can be managed. The biggest hurdle is accurate diagnosis. Once diagnosed, the key to treatment is early intervention and managing swelling. The earlier you identify it, the less chance that it will progress.

Work with your primary care physician or certified lymphedema therapist for a specific management plan.

Upcoming Lymphedema Awareness Month events

I want to educate health care providers and patients about the importance of early diagnosis and prevention so others can learn how to manage and live with this lifelong disease. Lymphedema is 24/7, and if we don’t control it, it will control us. It is all about prevention of progression.

March 6, 9 am – 2 pm: Information table by Coffee Central in recognition of World Lymphedema Day

March 15, noon – 1 pm: Luncheon lecture in the Blum Center, Understanding Lymphedema, by Holley.

Learn more about lymphedema at www.lymphaticnetwork.org or www.lymphnet.org.



Read more articles from the 03/03/17 Hotline issue.