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The adage ‘this too shall pass’ is often used in society when we face tough times but what happens when the challenge doesn’t go away? For many people who have experienced cancer, the chronic condition lymphoedema follows and lingers. It can be debilitating and it’s incurable.
What is Lymphoedema?
Lymphoedema involves the retention of large amounts of protein-rich fluid causing chronic swelling, usually in people’s limbs but it can also occur in other parts of the body such as the trunk, breast, head and neck or genital area. It is often as a result of cancer treatment where the lymph nodes in the body such as those in the armpits, are removed or damaged. Conservative estimates in Australia indicate lymphoedema impacts close to 20 per cent of people with cancer. It is known to occur most likely with breast, gynaecological, genito-urinary, melanoma, sarcoma and head and neck cancers.
The impact of lymphoedema
In October 2008, Sydney-sider Nicola Yee was diagnosed with breast cancer. She had a mastectomy plus removal of 33 lymph nodes under her right arm to treat the cancer and reduce the risk of its spread. Afterwards, lymphoedema soon appeared as a permanent side effect.
Nicola was alerted by her medical team at the outset of treatment that removal of her lymph nodes in her right armpit could leave her with lymphoedema. She was connected with an occupational therapist specializing in the condition, who promptly initiated treatment including massage, to minimize the impact on Nicola.
“My occupational therapist saw me just before I had the lymph node clearance and she did these measurements – by tape measure and physically as well, against my arm – and she said lymphoedema may be a problem,” says Nicola.
“It’s not a problem for everybody. She kept an eye on me and we could see, post operatively, that my measurements were going up increasingly and also I had changes in my arm that I could actually feel.
“By four to six months (after surgery), I knew that things weren’t going well and we would have to manage it on an ongoing basis.”
Nicola’s right arm is permanently swollen. Lymphoedema is a condition that can be managed, not cured. It can manifest as primary lymphoedema as a result of a genetic predisposition or other illnesses and the more common secondary lymphoedema, usually the result of cancer.
The importance of early treatment
Early detection and treatment is pivotal to keep lymphoedema well managed, says Dr Debbie Geyer, a general practitioner and chair of the Lymphoedema Support Group of NSW.
“There are some people who don’t get diagnosed until 10 years down the track and it’s just devastating for their lives,” says Dr Geyer, who is also an advocate for the Lymphoedema Action Alliance. The Lymphoedema Action Alliance, of which Cancer Council NSW is a member, is asking the NSW Government for funding to address a shortage of lymphoedema practitioners. The Alliance is calling for an extra 62.5 full time equivalent lymphoedema practitioners in the state to meet the medical needs of patients.
Treatments include compression and massage by lymphoedema specialists, who are often scarce in rural and regional areas. Education about the risks of developing lymphoedema and how to treat it early, is essential in the medical, allied health and mainstream communities, says Dr Geyer.
“People should be educated about lymphoedema early so they can get onto treatments if needed,” she says, noting that early treatment of cancer patients can help reduce the risk of developing lymphoedema.
Dr Geyer says lymphoedema is more common than people think it is and often people soldier on, without help, when treatment would make a difference.
Nicola began occupational therapy which also involves massage to alleviate “gross swelling” that isn’t painful but impacts her daily life immensely.
“I’ve got to be very careful of infections – if I do any amount of gardening, I’ve got to make sure I’ve got the big thick gloves on and if I do any cooking, I’ve got to make sure I don’t get any little nicks on my hand,” she says. Small scratches from gardening or cooking can take weeks to heal and are sometimes followed by infections that have left her hospitalized.
Emotionally, the impact has been intense, from embarrassment amidst public curiosity about her visibly larger arm to changes in Nicola’s body image of herself.
When lymphoedema first appeared, Nicola says she thought it was “just another thing to deal with” after a breast cancer diagnosis, loss of a breast and removal of lymph nodes as well as chemotherapy: “It was like hit after hit after hit”.
“When it first happened, it was incredibly embarrassing. I wanted to hide. I was dealing with my cancer, chemotherapy, I lost all my hair, my appearance changed completely because I had no hair, I wore scarves, all that sort of thing,” she says.
“It was almost like I was marked because I had cancer but to also have people ask ‘what’s wrong with your arm?’ was just another thing to deal with.”
Nicola also has to spend hundreds of dollars every few months to buy custom-made compression garments for her affected arm and wetsuits to wear for her job as a swim coach.
Exercise is beneficial to people with lymphoedema but getting too hot or doing too much exercise can exacerbate symptoms. The cost of specialized compression garments is covered only by some health funds.
Nicola says she is lucky to have been able to enlist the help of gardeners and cleaners at times to help with family life – she has three sons and works as a swimming teacher.
While Nicola says she is conscious of trying to hide her affected arm in photographs, she now tries to educate people about lymphoedema as well as helping others who also have it. She has also had lymph node transfer surgery, with nodes from her groin put under her arm to try to re-establish some drainage and relief.
“It’s something that we know I’m going to have to live with for the rest of my life,” says Nicola, who also has to shop for clothes that will fit both arms.
“With the management of it, I’m very lucky that my husband, Mark, is a very, very supportive partner…and my occupational therapist is a delightful person, a very holistic person who engages me in each consultation and asks how I am.”
Lymphoedema – the facts
- Lymphoedema is swelling in the soft tissue of the body eg. arm, leg, neck, caused by the retention of excessive amounts of fluid
- Signs include persistent swelling, heaviness, tightness and pins and needles and aches
- The condition is incurable but can be managed and early treatment is recommended
- Untreated, it leads to disfigurement, limited mobility, infections, anxiety, depression and social isolation
- Physiotherapists and occupational therapists can specialize in treating lymphoedema
Download a copy of Cancer Council NSW’s publication Understanding Lymphoedema: a guide for people affected by cancer.
Cancer Council NSW has joined the Lymphoedema Action Alliance to urge the NSW Government to fund additional services for people living with lymphoedema.