A diagnosis of lung cancer comes with a huge financial burden that goes beyond the hefty out of pocket costs for scans, surgery and drug treatments, a patient representative says.

Loss of paid employment is a common occurrence for patients with lung cancer whose ability to work is hindered by the side effects of treatment and the need to take time out to access medical care, according to Alexandra Golledge, a Queensland mother diagnosed with lung cancer several years ago.

Speaking at the Australian Lung Cancer Conference in Sydney on 6 April  she said Australian data show that one in three people with lung cancer are forced to give up work entirely and 22% leave the workforce temporarily to undergo treatment after their diagnosis.

Overall about two out of three patients with lung cancer have a substantial drop in income because of their diagnosis, and the impact goes beyond financial hardship, she said.

A diagnosis of lung cancer often involves a huge upheaval in family circumstances, with partners also having to leave the workforce or reduce their working hours to help provide care and children leaving education.

In her own case, she described how she relocated from northern Queensland to Melbourne in order to access specialist care. The need to travel for medical care is a major financial burden for many patients with lung cancer, particularly those living in regional Australia, she noted, particularly with the many hidden additional costs such as fuel, fares, parking, accomodation, childminding and meals.

Out of pocket costs for scans, surgery and other treatments can run into thousands of dollars for patients with lung cancer, said Ms Golledge, and this shows the need for upfront questions and answers with treating clinicians to avoid financial shocks.

The increasing availability of innovative but non-PBS listed drugs for lung cancer also meant that patients faced costs of $5,000 to $10,000 a month if they wanted to access cutting edge treatments, she added.

“These costs are obviously out of reach for many people, but some will sell or refinance their homes to pay for the latest targeted treatment for lung cancer,” she said.

The financial burden of complementary treatment should not be ignored, Ms Golledge added. While it is easy to dismiss the use of herbal remedies and supplements as discretionary spending by wealthy people on ‘silly’ treatments, the reality is that 65% of lung cancer patients use some form of complementary therapy, she said.

Posts on patient support sites showed that people with lung cancer were spending $15-$20,000 on naturopaths and Chinese herbal medicines because they provided a sense of hope and control and were non-toxic symptom control, she noted.

Overall, it has been estimated that the costs following a cancer diagnosis are around $50,000, she concluded.

“It’s not just a fiscal problem. We know [financial hardship] is linked to higher rates of distress, lower quality of life, lower access to treatment and lower survival,” she said.