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Breast cancer affects one in eight Australian women, paying $10,000 and more in out-of-pocket expenses

ABC Health logoABC Health 19/06/2018
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For women being treated with breast cancer, first comes the shock of the diagnosis, then almost immediately comes the shock of the often overwhelming bills.

And it is regional women who are often the most at risk for the financial burden of treatment.

Anita Jamieson was diagnosed with breast cancer in January 2018.

After a career as a senior flight attendant she is now a self-employed travel photographer and single mother.

She was on a working adventure with her 5-year-old daughter as a treat before the start of school when she found a lump in her breast.

"One morning I woke up with what I thought was a heart attack," Ms Jamieson said.

"The very next day I went into town and found a breast screening bus.

"I was diagnosed with aggressive breast and lymph cancer. It's changed my life completely."

The choice to go private

Ms Jamieson received her diagnosis in Townsville just after Christmas when many of the specialists at the public hospital were on leave.

She was told she needed chemotherapy treatment immediately and that the best delivery for her would be to have a port-a-cath inserted under the skin on her chest.

"The tumours were so large, the cancer so aggressive, I had to go down that route of private hospital because I couldn't wait'," Ms Jamieson said.

"Within three days of my diagnosis I was in surgery getting a port put in.

"Three days after that I got my first chemo."

Ms Jamieson sold her house at Eltham on the NSW north coast and moved to an apartment on the Queensland border to be near a private hospital with a good reputation for breast cancer treatment.

This also meant she could be close to both her oncology team and her daughter's school.

It was a good plan — until she had to pay for it all.

"Then came the bill shock. The gaps you have to cover to pay the hospitals, the doctors and anaesthetists, it just all adds up," she said.

Bill shock is common

Kirsten Pilatti, the CEO of Breast Cancer Network Australia (BCNA), says Ms Jamieson's experience is common.

A state of the nation breast cancer report, just completed by BCNA, interviewed 3,500 women and men with breast cancer across Australia.

"The day you're told you have breast cancer your world turns upside down. But not only that, the bills start at that very moment in time," Ms Pilatti said.

"What we found was the financial discussions are not happening for women after a breast cancer diagnosis."

Ms Pillati said that the costs were complex.

"In the private system it is true that there are large and varying gap fees, but there are also out-of-pocket expenses for many other allied health treatments like the physio for women who have had their lymph nodes removed and will need that treatment for the rest of their lives," she said.

"I think one of the real challenges at the point of diagnosis is you form a relationship with the doctor and create a bond with that person, and your greatest fear is getting that cancer removed as quickly as possible.

"It is really difficult for people to have a financial discussion about the out-of-pocket costs".

The report also found the small costs such as hospital parking can add up to hundreds of dollars, and for regional women the high cost of fuel and transport to appointments is often a plane ride away and not well subsidised.

Compounding the unexpected costs is that women often have to give up work while receiving treatment.

The tally of out-of-pocket costs

The state of the nation report found women were out of pocket on average $10,000, but for some women these costs could be over $20,000.

The women most at risk were those who were in need of reconstruction surgery after mastectomy as it is classified as cosmetic surgery, rather than a breast cancer treatment.

The other group at high risk of on-going costs, often for the rest of their lives, are women who had lymph surgery.

"The stories the really stay with you are those where women arrive at a consultation shaking with an invoice for $23,000 after having radiation treatment, having no idea how they are going to pay for it, and at having no understanding of how much she was going to get back through Medicare," Ms Pillati said.

"The bill shock is very real to our members right around the country."

Ms Jamieson is just six months into her treatment and the tally so far is between $10,000 and $15,000.

"I did not expect this. Not now. I did not plan for it," Ms Jamieson said.

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