Going through a cancer diagnosis and treatment is an incredibly overwhelming and life-changing experience. But for some people, their experience doesn’t end when treatment finishes with life after cancer treatment presenting other challenges, like a diagnosis of lymphoedema. We spoke to Ashlynne about her experience with lymphoedema after breast cancer to raise awareness about this lifelong condition.
Lymphoedema, which is swelling caused by damage to the lymphatic system, can affect people following cancer treatment. It can be a side effect of cancer treatment when lymph nodes have been removed or damaged causing lymph fluid to build up in tissue under the skin.
The swelling can occur in an arm or leg but can also affect other parts of the body. It is a lifelong condition that can be managed with care and treatment that may include compression garments, massage and other therapies.
Brian Simpson, Senior Physiotherapist – Lymphoedema at Flinders Medical Centre says that unfortunately, lymphoedema care has been poorly resourced in the past but in 2020, SA Health implemented a new compression garments subsidy scheme and provided funding for a new lymphoedema treatment service in Southern Adelaide.
“It’s important that people who are experiencing lymphoedema symptoms get an assessment and treatment as early as possible from their health care team, which can include a GP, treating specialists, nurses and lymphoedema therapists,” Brian says.
“I have had an interest in lymphoedema for many years. In 2006 I undertook additional training in Lymphoedema as I was curious to learn more about this poorly understood condition. The lymphatic system is amazing and a vital part of the normal function of our body.”
Brian says that lymphoedema can have a huge impact on the mental and physical wellbeing of those impacted.
“Other than having physically larger arms or legs, other symptoms of lymphoedema can include skin changes; risk of infections and cellulitis; limited and impaired function of the affected limb; difficulty exercising; fatigue; and difficulty wearing clothes, shoes or jewellery,” Brian says.
“A diagnosis of lymphoedema can also have an impact on emotional and mental wellbeing. It can result in feelings of anger, shock and frustration, especially as this is a chronic condition following a cancer diagnosis in some cases – the impact of facing ongoing challenges and self-management of the condition can take a huge mental toll.”
Ashlynne was 45 years old and living in regional South Australia when she was diagnosed with breast cancer, after finding a lump in the shower.
“I was running late for work one day and dropped the squidgy in the shower. I thought, ‘I don’t have time to pick that up, I’ll just wash with soap in my hand’. That’s when I found a lump,” Ashlynne says.
Her treatment involved a mastectomy and another surgery to remove some lymph nodes. Before she’d left the hospital after her second surgery, her arm started to feel swollen and heavy. But as she’d just undergone two surgeries in three weeks, doctors didn’t think anything of it.
Ashlynne’s symptoms didn’t go away and after doing her own reading, she learnt more about lymphoedema. She started travelling to Adelaide once a month to receive lymphoedema treatment and implementing the recommended self-management strategies to manage her symptoms, finding that they helped with the symptoms she was experiencing. It wasn’t until five years later that she received a formal diagnosis.
Ashlynne says that everything she does revolves around managing her lymphoedema.
“Before I put my feet on the floor in the morning, I do my self-massage in bed. Then it’s washing yesterday’s garment, then putting today’s garment on after moisturising post shower,” Ashlynne explains.
“If I’m out in the garden, I have gloves on so I don’t get cuts or nicks and if I do, I go straight inside to put disinfectant on it and cover it up so I don’t get cellulitis.”
“I make sure not to use water that’s too hot when washing dishes, and when I’ve been sitting for a period of time, for instance driving to Adelaide which I do often, I make sure to stop on the way to take lots of deep breaths.”
Despite learning to manage her lymphoedema and never letting it stop her from doing what she enjoys, like travelling and swimming (with her garment on), Ashlynne says the experience has been hard on her.
“I think if it wasn’t for the lymphoedema, I could move on from the cancer experience,” Ashlynne says.
“My message to others impacted by lymphoedema is don’t let the rules of living with lymphoedema stop you living. Just be patient and try different things to find what reduces your swelling, that you can live with and manage.”
If you or someone you know is impacted by Lymphoedema, speak with your treating health care team or call Cancer Council 13 11 20 to speak with an experienced cancer nurse and connect with services and support groups.
Learn more about Lymphoedema in our Understanding Lymphoedema resource.