Lillian’s story

Family-at-Pearl-Beach_400x267When 35-year-old Lillian woke up one morning in October 2014 with a sore left shoulder and arm, she never thought it would be stage four lung cancer.

“It was two days after my 34th birthday and I didn’t think too much of it because the pain went away quickly.”

However, after experiencing soreness in the left side of her neck and finding a small lump above her collarbone on the same day, an ultrasound to investigate the lump was ordered.

“When the radiographer immediately sought the attention of the radiologist after seeing my lump I got nervous.”

The radiologist took a needle biopsy of the lymph node and two days later Lillian’s father, a doctor, told her she had primary lung cancer.

“It was the most horrifying news of my life. I was on the train on my way home from work and I knew it had to be bad news when dad asked where I was. I was only moments away from home, so I insisted that he tell me. When I was first diagnosed, I met with a Cancer Council counsellor who helped me to process everything.”

Lillian+Daughter_PreDiagnosis_300x450After being diagnosed, Lillian’s doctors found she had a pericardial effusion (effusion of the heart lining). She underwent surgery to drain over one litre of fluids from around her heart, and created a window for any further fluids to drain from her heart to her abdomen.

“I’m grateful that there were no complications and I recovered from the surgery quite quickly.”

A social justice lawyer, Lillian was tested for all known genetic mutations of lung cancer. Her doctors found her tissue sample tested positive to ROS1 translocation, a very rare form of genetic mutation.

“I was very blessed to have a fantastic medical team who found this early. With the help of Rare Cancers Australia, we were able to fundraise money to pay for the target therapy Crizotinib which costed $7,800 per month ($93,600 per year) at the time.”

The side effects of Crizotinib included fatigue and light flashes which Lillian was able to manage.

“I felt well and was able to return to work immediately and even went to Fiji for a holiday a couple of months after the diagnosis.”

Complications arose however when Lillian’s liver suddenly reacted badly to the drug.

“After many weeks of trying to reduce the dose, I had to cease the medication which was devastating.”

A young mother, Lillian was aware of the impact her cancer may have on her daughter.

Lillian+Family_PreDiagnosis_400x267“Jessica was three when I was diagnosed. I’ve always been very honest with her about my illness and explain everything in the simplest way so she can understand. I would answer her questions about medicines, hospitals and heaven, and I always make a point to let her know that she can’t ‘catch’ cancer and that she’s not to blame for my disease.”

Lillian and her husband have found their family, friends, colleagues and greater community to be a great support while she currently flies to Melbourne every few weeks to participate in a phase one trial of a new target therapy.

“In so many different ways, each has given us their encouragement to help us through the hard days and celebrated with us the good days. For all that they do, however big or small, I’m eternally grateful.”

A non-smoker, Lillian wants to reduce the stigma that lung cancer is only caused by smoking.

Lillian+Husband_PreDiagnosis_300x450“When I tell someone that I have lung cancer, their first response is rarely a sympathetic ‘I’m sorry to hear’. The first thing most people say is ‘but did you smoke?’ If only our nation understands that smoking also causes many other health conditions such as cardiovascular diseases and other cancers. If only our nation understands that one in three women diagnosed with lung cancer is a non-smoker such as myself. To reduce stigma is to reduce unnecessary pain experienced by lung cancer patients and their loved ones who are already going through so much.”

For now, Lillian is hopeful of a successful outcome from the clinical trial and is grateful for advances in cancer research, especially in Australia.

“So far the medication is going well, my tumours are stable and I feel almost no side effects. Jessica, like all young children, is great at keeping me in the moment. She’s also taught me to see the world through a child’s eyes and appreciate everything around me. I’m so thankful for medical research without which my options would be very limited.”

Learn more about Cancer Council NSW’s support services.

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