Women face long wait or crippling cost for surgery to beat breast cancer

AN INCREASING number of healthy women with the deadly breast cancer gene are choosing to have a double mastectomy, only to be told they have to wait years for the surgery or be tens of thousands of dollars out of pocket.

AN INCREASING number of healthy women with the deadly breast cancer gene are choosing to have a double mastectomy only to be told they have to wait years for the surgery or be tens of thousands of dollars out of pocket.

Advocacy groups have slammed public hospital waiting lists and private health cover rebates as a “cruel blow” to women trying to safeguard their lives.

Today, The Courier-Mail can share the story of Kelly James, a Toowoomba mother of three who does not have breast cancer but will spend $45,000 to reduce her risk of getting the disease, which has killed five family members.

Kelly James with her mother Linda Lobwein and her children Abbey, 6, Patrick, 4, and Charlotte, 7. Picture: Annette Dew

The special education teacher, 39, carries the mutated BRCA 2 gene, which gives her a 70 per cent chance of breast cancer in her lifetime.

“When I found out in January, I never thought ‘poor me’ but, ‘oh my God, my kids are going to miss me reading to them at night’,” says Mrs James of Charlotte, 7, Abbey, 6, and Patrick, 4.

“I have a heavy history of women dying so I was told if I had the gene, not to wait a year or two, which is the waitlist I was looking at in the public system.

“I thought, ‘I can act on this now and be there for my kids, my family and my job’.”

Mrs James will have a 12-hour operation, including a breast reconstruction using tissue from her stomach, at Brisbane’s Wesley Hospital on May 12.

She expects to be back at work in July.

What she didn’t expect was to be slugged $45,000 for the surgery that will lower her risk of breast cancer to 1 per cent.

Mrs James, who has basic hospital cover with Medibank, is furious.

“My biggest anger is that to have the treatment I need, which will include removing my ovaries at a later date, I have to withdraw $37,000 from my super,” she says.

“And because it is deemed elective, the amount will be taxed at 22 per cent so I’m looking at $45,000, with only a $7000 rebate. It is heartbreaking.”

Kelly James says she felt she needed to act immediately for the sake of her children. Picture: Annette Dew

Danielle Spence, from Breast Cancer Network Australia, says the underfunding of preventive surgery is a cruel blow to women trying to do the right thing.

“Kelly has a triple whammy, she can’t get swift access through the public system, the public purse doesn’t cover the cost of her surgery privately, and she is being taxed on taking steps to save her life,” Ms Spence says.

“Kelly is not having surgery for cosmetic reasons. She’s being a responsible mum, caring for herself, trying to get back to work and reducing her long-term cost on the health care system.”

Brisbane surgeon Dr Jenny Gough will lead the six-person team operating on Mrs James.

Dr Gough says many more eligible women are being screened for BRCA genetic mutations since the tests were added to the Medicare rebate system in November last year.

“Anyone carrying a gene mutation today, pretty much all of them opt for a double mastectomy.

“There is heightened awareness since Angelina Jolie came out [in 2013] with her BRCA mutation and breast removal.

“We do see some people with no family history who have become really worried they’re going to get it (breast cancer), but this is not an augmentation or cosmetic enhancement, so we have to select patients for whom it’s medically appropriate.”

For the past two years Mrs James has been caring for her mother Linda Lobwein, 60, who has been battling the disease.

“I want to treasure every moment because I’ve seen how cancer has torn my own beautiful mother apart,” she says.

“She went from being a grandmother who jumped on the trampoline with my kids to a 37kg frail woman who also has lung disease following chemotherapy.”

Ms James, who husband Martin is also a teacher, says the financial and emotional stress has been huge.

“We’re told as women, look after your body, check your boobs, take action, but then good luck, you’re on your own.”

If you can help Kelly James with her treatment costs, go to
gofundme.com/kelly-james039s-brca-gene2-surgery