Cancer and Clinical Services Patient Stories

After having a double mastectomy and several lymph nodes removed as part of her breast cancer treatment in 2011, Susan O'Brien thought her health issues were behind her.

But while Susan's cancer remains in remission, she suffers from lymphedema, a chronic condition that impacts many breast cancer patients. It causes painful and uncomfortable swelling in the arms and fingers when the fluids build up and overwhelm the remaining lymph nodes in the armpit area.

As a result, she began receiving treatment from Allison Barber, a physical therapist at the Stefanie Spielman Comprehensive Breast Center’s (SSCBC) Oncology Rehabilitation facility, to help with the pain.

Susan has learned how to keep her lymphedema at bay — most of the time. "When I'm sick with a cold, the lymphedema flares up," she says. Her lymphedema is also triggered by overexertion, lifting heavy objects and too much sun.

“What I tell people is, you have to get a handle on it,” Susan says. She has lymphedema in both arms, but it’s worse in her right arm.

“The longer you have lymphedema, the more you learn about how your body responds,” says Barber, who is specially trained in physical therapy for lymphedema patients and has an advanced certification from the Lymphology Association of North America (LANA).

“We’re so lucky to have this right here,” Susan says, who needs Barber to measure her for new, custom-made compression gloves and sleeves (also called gauntlets). Her current gloves and sleeves have become loose and are no longer effective in moving lymphatic fluids to prevent pain and swelling.

There are two types of compression sleeves: a circular knit with no seams and a heavier, flat-knit sleeve. Barber recommends the circular knit sleeves, which she compares to yoga pants. The flat knits are heavier and more like stiff jeans.

Barber traces Susan's hands on a sheet of paper and then begins measuring her arms, from the wrist up to her shoulder, using a special “paper tape” provided by the sleeve manufacturer. It features a long “spine” with about 15 paper straps, or “ribs,” that Barber wraps around Susan's arm to measure the circumference.

Next, Barber has Susan lie down, relax and take a few deep breaths “to get everything moving,” she says. “This is not technically a massage —  it’s called manual lymphatic drainage, and it’s very light; the lymphedema is right under the skin.”

The manual lymphatic drainage takes about 20 minutes.

“The gold standard is complete decongestion,” Barber says. “Get all the fluids out of her arm.”

“It takes about two weeks to get the new compression gloves and sleeves,” Barber explains, as she slowly and gently begins wrapping Susan's right arm. First with a thin “stocking,” and then a couple layers of “the white, fluffy stuff" to create a mild compression gradient that pushes the fluid up from her hand.

Susan will wear the bandage for a day, maybe two, until all the swelling in her right arm is gone. When she showers, she’ll take it off and then rewrap it around her arm – an acquired skill many with lymphedema have had to learn.

“Flying is always an issue,” Susan says, adding the changes in cabin pressure can aggravate her lymphedema. “Once I left my sleeves in my checked luggage and had to ask for an ACE bandage they got out of the medical kit. It was embarrassing to have to ask and to have people stare at me, but it worked.”

Barber tells Susan about a new class she’s created: Strength After Breast Cancer. It’s designed for women with lymphedema.

“Studies have shown that regular (and moderate) exercise reduces flare ups,” Barber says, adding her class is for four weeks and the women who take it will learn exercises they can then do at home to help mange their lymphedema.

“I’ll take the class,” says Susan, who is a motivated and informed patient determined to stay on top of her lymphedema and lead a normal, active and rewarding life. She seems to be on the right track.

“I had so much fear at first (about lymphedema),” Susan says. “And now it’s so much less.”