Understanding lymphedema

When Heather James was diagnosed with breast cancer in May 2024, she had physically and mentally prepared herself for surgery, treatment and recovery.

Heather James is grateful for the care she’s received at MultiCare

What she didn’t anticipate was developing lymphedema, a chronic condition that would require daily management.

After breast cancer surgery, an edema (swelling caused by trapped fluid) developed at her tumor site. It was drained frequently until she underwent radiation treatment.

“But two months following radiation, my breast became large and heavy,” recalls James, 58. “I thought it was just the fluid pocket from surgery filling again.”

MultiCare Cancer Institute radiation oncologist Jane Cho, MD, discovered in an ultrasound that James’ swelling was actually lymphedema.

What is lymphedema?

To understand what lymphedema is, it’s helpful to know what the lymphatic system does.

The lymphatic system plays a crucial role in your immune system. It helps remove waste from cells and tissues, transport immune cells that fight bacteria and viruses, and regulate the fluid that surrounds the body’s tissues.

But when this system becomes blocked or damaged, lymph fluid can’t circulate properly and begins to build up, causing swelling in the affected area.

While the arms and legs are the most commonly affected areas, lymphedema can also occur in the breasts, abdomen or genitals.

The causes of lymphedema

Lymphedema has two types: primary and secondary.

Primary lymphedema is a rare genetic condition where a person’s lymphatic system is underdeveloped or damaged. Some people are born with it, while others may develop it during puberty or adulthood.

Secondary lymphedema is more common and often caused by breast cancer treatment. Cancer treatments such as surgery, radiation and chemotherapy can potentially damage the lymphatic system. When lymph nodes are removed for biopsy or treatment, or when radiation damages the nodes in surrounding areas, the lymph fluid can no longer flow properly through those pathways.

Other causes of secondary lymphedema include poor blood flow in the legs (chronic venous insufficiency), congestive heart failure, severe infections, and surgeries, such as hernia repair or prostate surgery, that involve or affect lymph nodes.

Recognizing the early warning signs of lymphedema

Early lymphedema symptoms are often subtle and can be easy to dismiss. They may include a sensation of heaviness or persistent achiness in an arm or leg.

“If you catch the symptoms in a very early stage, it can be reversed,” says Paula Hemp, a certified occupational therapist with MultiCare Cancer Institute – North Star Lodge.

As the condition progresses, you may see mild swelling along with the sensations of heaviness and discomfort.

“Even when you start seeing a little bit of swelling, though, we can still reverse it,” Hemp says.

However, if lymphedema continues to advance without treatment, reversal may no longer be possible. In severe cases, the skin may thicken and harden, range of motion decreases and the risk of skin infections increases. The tissue can become fibrous and wounds may develop.

But with appropriate care, lymphedema can be controlled and quality of life significantly improved.

Treatment for lymphedema

The gold standard treatment for lymphedema is complete decongestive therapy (CDT). The CDT approach includes five components that work together to manage the condition:

1. Manual lymph drainage: This gentle massage technique opens lymphatic pathways and redirects fluid to areas where the lymphatic system still functions properly. This allows the body to reabsorb fluid and reduce limb size.
2. Compression therapy: Compression garments like sleeves, stockings or bandages help maintain fluid balance and prevent fluid from accumulating again once it has been reduced.
3. Exercise and movement: These act as natural “pumps” to keep fluid flowing. Simple exercises like moving the affected limb, along with physical activity such as walking, provide benefits.
4. Skin care: Keeping the skin clean and well-hydrated with gentle lotion helps protect against infections.
5. Self-care: At-home care, including self-massage techniques, compression methods, exercise routines and skin care practices, ensures you’ll maintain the results achieved in therapy long-term.

Effective treatment helps with daily challenges that can make everyday tasks like walking, dressing or driving difficult.

“Lymphedema therapy allows patients to move better and walk better because their limbs aren’t feeling so large and heavy,” Hemp says. “It can improve range of motion and the ability to do their daily activities. And one of the biggest improvements patients tell me about is that their clothes fit better.”

James’ condition, which showed up in her left arm and chest, led to congestion and tightness in those areas.

Her medical oncologist, Blair Irwin, MD, with MultiCare Cancer Institute, referred her to a pain management specialist and physical therapy for treatment.

“Movement and walking are some of the best things I can do for it,” James says. “I’m in a lot of compression garments, which are part of my new reality. They allow me to be more active and feel more comfortable in my skin. I’m grateful they are comfortable and solve a significant amount of problems.”

James is currently seeing an occupational therapist (OT) who helps her with her daily activities and movement.

“I’ve recovered range of motion working with the OT,” she adds. “I can lift my arm above my shoulder now.”

Managing the emotional aspect of lymphedema

In addition to the physical side of the condition, people with lymphedema may experience body image concerns, self-consciousness or frustration.

James was referred to MultiCare Cancer Institute clinical psychologist Joe Mitrovich, PsyD, to help manage sleep issues, but he also helped her work through body image issues associated with lymphedema.

“I feel like my body is this separate entity that needs to be managed, but Dr. Mitrovich helped with ways I could deal with that,” she says. “I’m trying to find things that feel new and fresh, like attending trivia nights, taking walks in beautiful places and working in my garden. It’s about balancing what I can’t control with what I can still enjoy.”

Ongoing lymphedema management

While lymphedema requires ongoing management, people with the condition can live full, active lives with the right combination of daily self-care, regular use of compression garments and emotional support.

James’ medical team exemplified the kind of comprehensive, whole-person care that makes this possible. She says Dr. Irwin advised her to take a walk like she takes a pill, setting a clear goal that has become part of her daily routine.

“I had been tackling one physical thing after another with cancer treatment, so for my doctors to express concern for my holistic well-being was particularly helpful,” she adds. “I really have appreciated how they have listened and made every effort to get me the help I need.”

Preventing lymphedema

MultiCare Cancer Institute doctors and providers make sure patients are aware of the chances of lymphedema before they have cancer treatment.

“If a person is undergoing breast cancer surgery, we see them before surgery and give them education on what to expect and signs and symptoms to watch for, so they can either prevent (lymphedema) or catch it early,” Hemp says.

She advises anyone at risk for lymphedema, particularly those who have had breast cancer surgery or treatments affecting the lymphatic system, to wear compression garments when flying or traveling to higher elevations.

“The change in cabin pressure on airplanes can cause fluid to accumulate, and for some individuals, their first experience with lymphedema occurs after a flight,” Hemp adds.

If you notice unusual heaviness, achiness or swelling in an arm or leg, especially if you’ve had breast cancer surgery, radiation treatment or surgery involving lymph nodes — or you have other risk factors — it’s important to see your doctor or other health care provider.

“If you notice any of these symptoms, we want you to come in for therapy right away so we can teach you the techniques and get a garment that can help prevent it from progressing into something larger or more severe,” Hemp adds.