Living with Lymphedema: Susan O'Brien's Story

Susan OBrien Lymphedema patient

Gently, ever so gently, Allison Barber massages Susan O’Brien’s right arm, slowly moving the accumulated lymphatic fluids that have caused her hand and arm to swell toward her shoulder.

“I can feel it moving,” says O’Brien, who had a double mastectomy and several lymph nodes removed as part of her breast cancer treatment in 2011. Her cancer remains in remission, but O’Brien 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.

“I’m creating space, a place for the (fluids) to go,” explains Barber, a physical therapist at the Stefanie Spielman Comprehensive Breast Center’s Oncology Rehabilitation facility.

She pushes the fluid up to the shoulder and gently down O’Brien’s back. “I’m pushing it down to the lymph nodes in the groin area,” Barber says.

O’Brien has learned how to keep her lymphedema at bay — Most of the time. “When I get sick with a cold, the lymphedema flares up,” she says, adding this caused the flare up a week ago.

“That makes sense,” says Barber. “The body’s immune system is fighting the cold and gets overwhelmed.”

Her lymphedema is also triggered by over exertion, lifting heavy objects and too much sun.

 “What I tell people is, you have to get a handle on it,” O’Brien 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.

Did Barber learn about working with lymphedema patients in “regular” physical therapy school?

“We spent about two hours on it over three years,” she says, adding that the physical therapists at the Breast Center “train for a month before we see patients. We learn about the impact of radiation and chemo and all about lymphedema.”

The Lymphology Association of North America (LANA) has certified about 20 physical therapists in Ohio. “Ten of them are from the Spielman (Center), and we’re sending more every year,” Barber says.

“We’re so lucky to have this right here,” O’Brien says.

She also 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.

“Which one’s cooler? I’m riding in Pelotonia this year,” O’Brien asks.

Barber recommends the circular knit sleeves, which she compares to yoga pants. The flat knits are heavier and more like stiff jeans.

Barber traces O’Brien’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 O’Brien’s arm to measure the circumference.

On the order form, Barber writes down the measurements at each of the 15 points.

“This arm is consistently a little bigger, maybe five to 10 percent,” Barber says of O’Brien’s right arm.

“I had all the lymph nodes in my right arm removed and only a few in my left,” O’Brien says.

Next, Barber has O’Brien 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.”

O’Brien’s right arm is almost fully decongested.

“It takes about two weeks to get the new compression gloves and sleeves,” Barber explains, as she slowly and gently begins wrapping O’Brien’s right arm. First with a thin “stocking,” and then a couple layers of “the white, fluffy stuff.”

“I’m creating a mild compression gradient that pushes the fluid up from her hand,” Barber says.

The final layer looks like an ACE bandage, but Barber explains “an ACE stretches the length and width of the bandage, but in this one only the width stretches.”

O’Brien 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,” O’Brien 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 O’Brien 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 O’Brien, 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),” O’Brien says. “And now it’s so much less.”

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