Living with Lymphedema

Carolyn Fiedler was just two weeks away from celebrating her 10-year anniversary of being cancer-free when she noticed her right arm started swelling.

"I thought it was rheumatoid arthritis," she says.

After consulting with Philip W. Taylor, MD, of Internal Medicine and Rheumatology, he diagnosed her with lymphedema, a condition in which the lymph nodes are damaged during the treatment of cancer. It is a side effect most commonly seen in women with breast cancer, a disease Fiedler knows all too well.

In 1998, she was diagnosed with cancer in her right breast, resulting in the removal of 11 of her lymph nodes under her right armpit. Just nine months later, a tumor was discovered in her left breast, and she underwent a mastectomy. Out of five siblings, four of them -- including Fiedler -- have had cancer.

Nearly a decade later, the symptoms of her lymphedema were starting to surface, causing aches and swelling. A friend at church who also has lymphedema referred her to Southeast Missouri Hospital physical therapist Paula Stout, PT, who performs manual lymph drainage (MLD) to reduce swelling. MLD is a gentle manual treatment technique that improves the activity of the lymph vessels and reroutes the lymph flow around the areas of blockage.

"When a person has lymphedema, the immune system is compromised," explains Stout. "Lymph nodes have 'Pac Man' cells that eat up toxins from lymph fluid before returning it to our bloodstream. When someone like Carolyn has part of their lymphatic system removed, it puts them at a higher risk of infection."

In July 2008, Fiedler underwent two weeks of intense therapy with Stout, coming in daily for hour-long sessions that drained the lymph fluid from her arm. This decreased the swelling and improved her range of motion.

Once therapy was over, Stout fitted her with a compression sleeve, which prevents reaccumulation and treats fibrotic (hardened) tissue caused by stagnant lymph fluid.

Stout says that although there is no cure for lymphedema, it is possible to live without any signs of it as long as patients continue their MLD exercises at home and wear the compression sleeve, especially when they're outdoors or physically active.

"I'm grateful I had Paula," says Fiedler. "The compression sleeve enables me to use my arm more. I feel protected when I'm wearing it."

Fiedler continues her MLD exercises at home three to four times a day. In addition to the exercises, she also plays the organ every week at church and says this also aids in lymph drainage.

"I make it a point to do my exercises every day," she says. "It takes a lot of willpower and determination, but it's a conviction that I have. You can't go through life dwelling on the negative. God gives us all sorts of abilities -- it just depends how we use them. It's the attitude and the perception that makes all the difference."

Stout notes that it's easier to treat lymphedema early on but says it can be treated effectively no matter what stage it's in.

"We really urge patients to come in for treatment shortly after their procedure," she says. "We want to reduce the risk of developing lymphedema, so the sooner they come in, the sooner we can treat them with manual lymph drainage. No matter when they come in, though, it's still effective, even when it's fibrotic."

Both Stout and Fiedler say most people don't realize how prevalent lymphedema is and urges anyone who notices symptoms to seek treatment. According to Stout, over half of her caseload is lymphedema patients.

Stout says there is a "high possibility" that anyone who has had lymph nodes removed will develop lymphedema if they don't begin MLD treatments soon after their procedure.

Fiedler says she is thankful for the treatment and is excited about the possibility of going on another mission trip.

"God is continuing to be a miracle," she says smiling.