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.
