Alberta Cancer Foundation

Living with Lymphedema

By: Silvia Pikal

When Anne Muir was diagnosed with stage 3 breast cancer 34 years ago, she was in shock.

“I was a physically active, 29-year-old mother of two,” Muir says. “It just didn’t seem possible.”

While undergoing treatment, Muir developed lymphedema, a common complication of breast cancer care. When lymph nodes are removed from a patient’s armpit area to see if the cancer has spread, it can damage the area, leading to a build-up of fluid and causing significant swelling, especially in the arm.

Muir’s left arm was affected.

“I would bring it to my doctors’ attention, but would always feel that I was lucky to be a survivor and that this was just something to live with,” Muir says. “Still, my arm just kept getting larger. It felt like a tree branch.”

She was forced to adapt and use her right, non-dominant, arm in daily life. But over the years, it slowly became worse.

Decades passed, and it got to the point where clothing didn’t fit and exercise became more challenging. In March 2016, Muir asked a doctor if she could get a referral to a physiotherapist who specialized in lymphedema treatment.

“The response was typical: it’s been a long time, so it was not likely,” Muir says. “But I became my own advocate that day and asked him to try.”

The next week, she saw a physiotherapist at the Cross Cancer Institute who was instantly concerned about the size of her arm and told Muir about a study that could help.

Called “Night-time Compression for Breast Cancer Related Lymphedema (LYNC): A Randomized Controlled Efficacy Trial,” the study is supported by the Canadian Institutes of Health Research and the Alberta Cancer Foundation and investigates whether nighttime compression for breast cancer-related lymphedema improves arm lymphedema volume in breast cancer survivors. Participants in the study were randomized into three groups:

1. Those wearing a daytime sleeve for 12 hours a day. (Currently, the standard care is daytime compression only.)

2. Those wearing the daytime sleeve plus nighttime compression through the application of multi-layered compression bandaging.

3. Those wearing the daytime sleeve and nighttime compression systems with foam padding and Velcro strapping for about eight hours at night, in addition to daytime compression for about 12 hours a day.

The principal investigator of the study, Dr. Margaret McNeely, is an associate professor in the University of Alberta’s physical therapy department. She performs clinical research in the Cross Cancer Institute’s rehabilitation medicine department.

McNeely describes how, in addition to the physical discomfort of lymphedema, there’s also an emotional impact.

“It’s a constant reminder of cancer — you’re always having to deal with this chronic swelling,” McNeely says.

Since bacteria can accumulate in the limb, there’s also a higher risk for infection. According to McNeely, about 30 per cent of women with lymphedema have problems with ongoing infections.

“Things we wouldn’t think about — a hangnail or a little cut — might lead to cellulitis or an infection in the arm,” she says. “Those infections can become systemic and make you very ill, very quickly.”

So far, the findings of the study (which began in 2014 with final data collection happening this December) suggest that women applying nighttime compression — whether through use of multi-layered bandaging or the Velcro wrap system — along with the use of a daytime compression sleeve, have better control of their lymphedema than women who use a daytime compression sleeve only. In the study, the level of swelling in women who used the daytime sleeve alone stayed about the same, while women who applied nighttime compression were found to have a reduction in limb volume of 15 per cent.

McNeely says that now, thanks to the study, physical therapists at both the Tom Baker Cancer Centre and the Cross Cancer Institute will have research to guide practice and will be able to recommend that patients apply compression at night.

“This was a very positive study for a chronic condition,” McNeely says.

For Anne Muir, the results have been dramatic. When she joined the study in April 2016, her first measurement revealed close to 900 millilitres of extra fluid in her left arm. Through the added use of the nighttime compression system, the swelling has been reduced to 300 millilitres. She is now able to use her arm more effectively and says it’s changed her life from “being a survivor, to being someone who thrives.”