When Susan Kocass, of Mortdale, was told she has lymphoedema, she had no idea what it was.
She was first diagnosed with bowel cancer in 2004, and then it spread to her lungs.
“I’ve had cancer four times,” she said.
“I hadn’t heard of lymphoedema until I got it.
“They don’t tell you about all of the side effects of cancer because there are too many, and you might not get them all.”
Lymphoedema is the accumulation of excessive amounts of protein-rich fluid resulting in swelling of one or more regions of the body, such as in the limbs, breast, genitalia or head or neck.
Secondary lymphoedema is the most common type developing following damage to the lymphatic system. Patients most at risk of developing it include those who have been treated for cancer where the lymph nodes have been removed or damaged during surgery and/or radiation.
The condition cannot be cured but it can be reduced and managed.
March is Lymphoedema Awareness Month.
Mrs Kocass says the condition affects her lower body, from her hips to her toes.
She wears strong compression bandages, and daily exercise and drainage is a regular part of her life.
“My limbs swell, and then it comes back the next day,” she said.
“It has to be treated every 24 hours. If I miss a day, my legs end up like a balloon.”
Oatley cancer rehab physiotherapist, Sharyn Wappett, works with patients who have lymphoedema.
She says the chronic condition is not well-recognised.
“We are probably seeing more cancers, but we are seeing more survivors. Lymphoedema can be a side effect of this survivorship,” she said.
“It has a huge psychological impact for people who suffer from it because often they get through cancer and are cured, but are left with a swollen arm of leg, and it’s a constant reminder of what they’ve been through.”