Manishi Khatter thought she was through the worst of it. After being diagnosed with breast cancer, she had a lumpectomy and radiation, finishing her treatment just before Christmas in 2023. 

Then, in January, she noticed her left breast and chest wall felt swollen. It could have been slow healing, but Khatter — a family doctor who works in women’s health — suspected something worse.

By March the upper part of her left arm was swollen too, and she knew — it was lymphedema, a chronic and debilitating condition that affects 1.25 million Canadians, most of them cancer survivors. 

“My first reaction was, ‘There must be a solution, this isn’t going to be my life forever.’ Then I started to realize, ‘OK, maybe it is, because this is long term,’” Khatter recalls.

“When you have cancer you’re just trying to survive, but lymphedema is one of the things that doesn’t go away.”

Khatter had already signed up for the Alberta Cancer Exercise program run by Margaret McNeely, University of Alberta professor of rehabilitation medicine, adjunct in oncology and director of the U of A’s Cancer Rehabilitation Clinic. McNeely also leads a nationwide project to update Canada’s lymphedema treatment guidelines. 

Now McNeely is heading up the new Lymphedema Research and Training Program, part of the recently established Dianne and Irving Kipnes Health Research Institute. It will focus on early detection and intervention, filling a desperately needed gap in research and clinical treatment options for people like Khatter. 

“We can’t prevent lymphedema, but we can monitor it closely — especially for high-risk people who’ve had more surgery or more advanced breast cancer — and at the first signs of swelling we can start treatment,” McNeely says. “Our aim is to reduce the swelling and support the lymphatic system to get back on track.”

Numbers on the rise

A healthy lymphatic system delivers nutrients and white blood cells throughout the body and carries away debris and harmful substances by filtering them through the lymph nodes. When lymph flow is blocked, fluid builds up, causing painful swelling (edema) that can lead to increased risk of infection. 

It can happen anywhere in the body, depending on where the damage is. Secondary lymphedema can occur following treatment for breast, gynecological, and head and neck cancers, as well as melanoma. Primary lymphedema is when a person is born with a damaged lymph system. 

Khatter did not have high-risk factors like obesity, diabetes or a sedentary lifestyle. But she did have surgery on a tumour and some lymph nodes under her arm, as well as radiation.

Less-damaging surgical methods are available, but with improved cancer detection and more people surviving, lymphedema case numbers are on the rise, according to the Canadian Lymphedema Framework. 

Despite this, there’s a lack of research into the best ways to treat lymphedema, says McNeely.

 

Mental and physical exhaustion

McNeely’s best advice — and Khatter’s own instinct — was to see a physiotherapist right away. 

Khatter was willing to try almost anything to control the swelling. She did daily prescribed stretches and kept up with her gym routine. The physiotherapist told her where to find specially fitted compression garments like a bra and sleeve, which help to keep fluid from building up. They are uncomfortable but must be worn eight to 12 hours each day.

She found a massage therapist who could do manual lymph drainage, a technique designed to push fluid out of the affected area and improve function of the entire lymph system. She went weekly at first, paying out of pocket, and learned how to do some of the fluid-clearing techniques at home.

Khatter found this daily lymphedema care routine — and daily reminder of her breast cancer diagnosis — exhausting physically and mentally. 

It took months before she would wear the compression sleeve without covering it with other clothing because she felt self-conscious and didn’t want to answer questions about her diagnosis. 

“It was all still feeling so raw and so fresh, and a part of me wanted to just hide it,” she says.

After a while, she realized that most people didn’t even notice the sleeve, or chose not to ask. Now she wears funky sleeves with paisley and flower patterns on them that look like tattoos. 

She’s embraced her new look — and her new routine — because it’s working. 

“I do believe — although there is no way to verify this — that my early intervention with physiotherapy, education, manual lymphatic drainage and compression are why my lymphedema did not progress and in fact has improved since diagnosis,” Khatter states. “The only way to really know is to stop doing it all and have it get worse, and I’m not willing to do that.”

Even though the swelling is now under control, she continues to wear compression garments every time she works out, and for a period of time most days, especially when her arm feels heavy. She goes for manual lymphatic drainage once a month for maintenance. She swims regularly, an exercise known to improve lymphedema.

“I was very fearful at the beginning that my whole arm and my hand were going to swell up, and that never did happen,” she says. “Now lymphedema is in the background instead of front and centre in my life.”

Building evidence for better care

McNeely says Khatter did everything right. 

“I know this as a clinician, but we don’t have the research evidence to support it in practice,” says McNeely, a member of both the Women and Children’s Health Research Institute and the Cancer Research Institute of Northern Alberta. 

Her new research program aims to gather that missing evidence and improve quality of life for people living with lymphedema — a personal cause for donor Dianne Kipnes, who developed lymphedema in her legs after undergoing surgery for cervical cancer. 

New tools like MRI are now available so McNeely and her team can analyze what’s happening within the muscle, fat and other tissue of a swollen limb, instead of just using a measuring tape to monitor overall size. 

Their latest randomized controlled trial examined the effect of combined compression therapy and progressive resistance exercise. While the data are still being analyzed for publication, McNeely says study participants felt an improvement in their symptoms. The MRI data will help the team understand which patients benefited most, allowing them to tailor future treatment recommendations.

“A lot of women stop doing much with the arm because when they use it, they feel like it gets more swollen,” McNeely explains. “We tested the participants’ muscle strength prior to starting the exercise program and then challenged them. We would modify the exercise program if their swelling increased, but the intensity of the resistance exercise was slowly increased and the arm would adapt nicely.”

That study was led by doctoral student Mona Al Onazi, a CRINA scholarship winner, and was funded by the Alberta Cancer Foundation. 

McNeely is also updating the training for health-care professionals who work with cancer patients. Simultaneously, U of A oncology researcher Spencer Gibson, the Dianne and Irving Kipnes Chair in Lymphatic Disorders, is working to understand other causes at a molecular level, including oxidative stress and lipid toxicity associated with fatty acids.

“I think the Kipnes Institute has the potential to bring people together from basic science, medicine, radiology, nutrition, occupational therapy, exercise science, even psychosocial oncology,” she says. “This network of people who are all linked with a common goal to improve care is my vision.” 

Khatter says she’s eagerly awaiting McNeely’s research results.

“We need to do better at early detection and management, and get the knowledge and education to the people who need it. I am truly an example of what that can accomplish.”