If you had a very high cancer risk, but there was surgery available to cut that risk by up to 90% - that would be amazing, a no-brainer, right? Cheryl (not her real name) thought so.
She had no sign of cancer, but her mum had died of breast cancer in her 30s, and her grandmother had died of ovarian cancer in her 50s.
Cheryl knew she was highly likely to suffer the same fate because she had a BRCA gene mutation, meaning a much higher risk of these cancers than the general population.
When her doctor told her that removing her breasts and ovaries would drastically reduce her risk to less than 1%, she was in.
But how to do it? The public system had zero capacity to get the operation done and she couldn't afford to go private. No matter, she thought - she's got a great health insurance plan.
But she then found that her insurer didn't include this preventative treatment in her policy.
"It's disgusting." That’s the response of Dr Susie Mourton, who sees the grim toll ovarian and other gynaecological cancers can have.
"We're looking at a cancer that we don't have a way to screen, so most of the time ovarian cancer is diagnosed at an advanced stage - where a cure is unlikely."
Mourton says breast and ovary removal is standard practice in other countries. She's worked in the US where she says all insurers have this option in their policies, and she's heard the same from her colleagues in Australia.
"They're astounded insurance companies here don't pay for this."
Cheryl was eventually offered what's known as an ex-gratia payment from her insurer after taking a case to the Ombudsman and winning.
It covered most of the costs, which she's incredibly grateful for, but it didn't come without a fight. It had conditions, she says.
"It had a confidentiality clause and that is really disappointing to me."
She says she still wanted Fair Go to look into the issue, but without using her real name. She also decided not to identify the insurance company involved.
Cheryl feels strongly that the surgery option should be made widely available, and Mourton agrees, adding that it would even be cheaper for insurance companies in the long run.
In the case of ovarian cancer, prophylactic surgery for otherwise healthy women who have a BRCA gene mutation would mean day surgery to remove ovaries and fallopian tubes, with about a week’s recovery time.
But, if cancer develops, it's likely it wouldn't be picked up until an advanced stage. It would require day surgery and about six months of chemotherapy, taking about a year to recover.
Even then, there is a chance of recurrence, and a high chance the cancer would be incurable.
"Would it not make more sense to prevent it happening? Not just the cost of treatment, but morally?"
We know, from viewing posts on a Facebook site for women with BRCA gene mutations, that this is a huge issue for them.
Some insurers do provide this cover, such as Southern Cross (with a three-year stand down period) and Accuro.
Other key insurers such as AIA, NIB (who underwrite AA Health Insurance) and UniMed don't currently include this in their policies.
Cheryl appreciates not everyone would want to take this option, but feels everyone should have the choice. She says it's the best decision she made.
She says the high risk of cancer was like a dark shadow that followed her around and that now that she's free of that, her future feels bright.
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