Shining a light on lymphoedema

A chance conversation in April first connected Catherine Davies and Dr Hayley Reynolds.

But the pair are now firmly bonded in their mission to make a difference for sufferers of an incurable condition.

Lymphoedema causes swelling due to a buildup of lymphatic fluid when the body’s lymphatic system is blocked, or damaged through the likes of cancer treatment. It requires lifelong management and can cause painful and permanently swollen limbs and increase the risk of serious and recurrent infections.

It particularly affects breast cancer survivors; after enduring often gruelling cancer treatment, up to 40 percent of these women will subsequently develop lymphoedema.

Among them is Catherine, a development manager whose work involves raising philanthropic funding for the University’s Auckland Bioengineering Institute (ABI) and the Liggins Institute.

She has worked at the University for 12 years but had only been in her current role for three weeks when she was diagnosed with breast cancer in March 2024. She largely worked from home during extensive treatment that included surgery, chemotherapy, radiotherapy and immunotherapy. She had good results from her cancer treatment but developed symptoms of lymphoedema around the time she returned to the office in February this year.

“It’s one of these conditions, unfortunately, where there is no cure,” says Catherine. “I will be dealing with it for the rest of my life, and I’ve moved from active cancer treatment straight into active management of lymphoedema.”

When Catherine was talking to a colleague about starting lymphoedema treatment, the workmate mentioned that ABI senior research fellow Hayley Reynolds was investigating the condition. Catherine and Hayley have since collaborated on media interviews about lymphoedema, sharing complementary patient and researcher perspectives.

“I am very open with my story,” says Catherine, who wants to increase philanthropic support for lymphoedema research, “and Hayley is a genius, so if there’s anything I can do to help encourage other people to support her work, obviously that’s my job, but it’s now also a passion.”

Hayley leads ABI’s cancer imaging research group andsays investigating lymphoedema was a natural progression. ABI specialises in modelling the body’s systems, and in a Marsden-funded project Hayley and her team are developing computational models of the lymphatic system, specifically focused on people undergoing cancer treatment.

“We’re trying to understand why and how lymphoedema develops in some people, but not others,” says Hayley. “We’re wanting to develop a multi-scale model that we can feed clinical data into and simulate the impacts on the lymphatic system of some of the key treatments that someone might receive for cancer.”

The goal is to use this information to further personalise cancer treatments, she says, so that lymphoedema doesn’t develop in the first place.

Hayley and her team are cooperating with researchers from Harvard Medical School and the Australian Lymphoedema Education, Research and Treatment Centre (ALERT) at Macquarie University. The New Zealand researchers recently gained Catalyst Fund seed funding to bring US and Australian researchers to New Zealand for a five-day workshop early next year; and the University of Auckland team and ALERT’s Associate Professor Hiroo Suami will subsequently travel to the US to learn more about the US team’s clinical work and collaborate to develop more advanced lymphatic technologies. 

Learning about Catherine’s experience brings home the importance of the work, says Hayley, who has long been personally driven to create better outcomes for cancer sufferers. Twenty years ago, her brother died from leukaemia after complications arising from a severe infection that compromised his treatment regime.

“That’s instilled in me this real desire to try to make things better for people with cancer,” she says. “It’s terrible what cancer patients go through, and I find it awful that you can get through that and then still end up with a debilitating condition. So, if we can eliminate or reduce those side effects, that’s a good thing.”

Catherine notes that health economics research related to the condition is also underway. Her lymphoedema is currently considered mild to moderate and isolated to her reconstructed breast. She’s under the care of a lymphoedema specialist and foots the bill for weekly drainage massage and compression garments to hopefully limit its spread.

But she says many can’t self-fund such options, yet the cost to the health system and a sufferer’s productivity and quality of life if the condition goes untreated and becomes severe is far greater.

“So, it makes good economic sense to be trying to intervene early, and investing in not only finding better treatments, but ways to prevent it occurring in the first place.”

Caitlin Sykes