Nancy Lindley had noticed swelling in various parts of her body for years. Sometimes her legs, sometimes her left arm, but the swelling always went away.
In January, however, Lindley, 75, began to notice swelling in her right arm. And, unlike in other areas of her body, this swelling never went down.
Lindley was surprised to learn she wasn’t just experiencing swelling, she had lymphedema — some 25 years after she was diagnosed with breast cancer.
The Vancouver woman underwent a mastectomy of her right breast, had 11 lymph nodes removed and received chemotherapy in 1991. Three years later, in 1994, a small spot on her left breast led Lindley to undergo another mastectomy.
Lindley’s breast cancer appeared to be gone until 2011. That’s when she learned the cancer had spread to her chest wall and three places in her thigh bone. After five years of various chemotherapy drugs, Lindley made the decision in November to stop breast cancer treatment and begin hospice care.
Early signs of lymphedema
Catching lymphedema in the earlier stages is important to treating the condition before it becomes permanent, said Joyce Masters, a physical therapist and certified lymphedema specialist at PeaceHealth Southwest Medical Center. Here are some early signs and symptoms of lymphedema:
• Aching in any part of the body near where lymph nodes were removed.
• Bruiselike tenderness.
• Feeling of heaviness or bulkiness.
• Lighter or darker coloring of the skin.
• Feeling of swelling without actually seeing swelling.
Not long after, Lindley was diagnosed with lymphedema and made an appointment to see Joyce Masters, a physical therapist and certified lymphedema specialist at PeaceHealth Southwest Medical Center. While not life-threatening, the condition can be painful.
When Lindley first saw Masters, her right arm had hard spots and indentations that never went away. Her wrist and fingers were swollen, her right arm was considerably larger than her left arm, and the skin was bright red in spots.
Lindley didn’t only have lymphedema, she had advanced stage lymphedema.
How it develops
Lymphedema is the abnormal accumulation of protein-rich fluid. To better explain lymphedema and the lymphatic system, Masters compares the body to a fish tank.
“The lymphatic system is the filter to the fish tank,” she said.
Cells in the body produce waste in the form of fluid, which contains not only cellular waste but water, bacteria, viruses, proteins and fats. The job of the lymphatic system is to filter that fluid, like a filter in a fish tank that sucks up dirty water, cleans it and returns clean water.
The lymph nodes serve as the actual filter. Clusters of nodes are in the armpits, groin and neck and are responsible for filtering the waste of that region of the body.
When lymph nodes are taken from the armpit — as is often done during breast cancer surgeries to determine whether the cancer has spread — that reduces the ability of the lymph nodes to filter the fluid in that area of the body. If that part of the body also underwent radiation, that further disables the lymph nodes, Masters said.
If the lymph nodes cannot keep up with the amount of fluid that needs to be processed, swelling occurs. That swelling is lymphedema.
Depending on when the lymphedema is caught and treatment is started, the condition may be reversible.
Lymphedema is broken down into four stages.
Stages 0 and 1 are considered reversible. Stages 2 and 3, however, are not reversible.
While the earlier stages may show little or no swelling, later stages produce more and denser swelling. In earlier stages, the swelling may go away with rest. In later stages, interventions are needed to reduce the swelling.
In addition, during later stages, scar tissue forms. Once scar tissue is created, it’s there for life, Masters said.
In Stage 3 lymphedema, the fluid converts to fibrotic fat. That, combined with the scar tissue, means the arm will never return to “normal” size, Masters said.
Lymphedema can be treated in any stage, but treatment is most successful when the condition is caught early, Masters said. Typically, lymphedema is treated by activity modification, positioning, exercise, manual lymphatic drainage and compression. The extent to which each is done depends on the lymphedema stage, Masters said.
Compression is the best thing people can do to manage their lymphedema and requires patients to wear special compression garments day and night, Masters said.
“I don’t think there’s any way to treat lymphedema without compression,” she said.
But with compression and other treatment, most people with lymphedema can continue to work and recreate as they did before lymphedema. Catching the condition earlier, however, increases those odds.
“The worst thing is them not getting treatment until they have a permanent condition,” Masters said.