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Meet the women choosing to have 'brutal' cancer prevention surgery

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Spending months in a chemotherapy ward was all Lisa Bardas needed to convince herself, without a doubt, that getting her ovaries and fallopian tubes removed was the right decision.

“What did I see?” asked the health coach from Melbourne.

“I saw a lot of tired people.

“And I choose life.”

In the beginning, Lisa had spent time in hospitals and at doctor’s appointments as a support for her younger sister, Ellie Rogers, 38, who was diagnosed with aggressive breast cancer at the end of last year.

Then came another test result that put the entire family into the firing line of cancer.


Ellie was positive to BRCA1, a gene mutation known as the "breast cancer gene" that can prevent the body producing protein that suppresses tumours.

There was a 50/50 chance Lisa would have it too. The results came back positive.

For BRCA1 carriers that risk developing cancer in their lifetime is overwhelming.

The likelihood of developing breast cancer before the age of 80 is estimated to be about 72 per cent, while about 44 per cent will be diagnosed with ovarian cancer.

That disease still has a survival rate of less than 50 per cent.

It is believed the genetic abnormality was passed down to Lisa and Ellie from their father and his father before him, late businessman Walter Heine, whose family background was Ashkenazi Jewish, a population that has a higher than average rate of the mutation.

“We knew women in the family had died early, but we never thought about it for some reason,” said Lisa.

“Really, my sister being diagnosed with cancer at 38, she saved my life and hers, which is a pretty big gift.”

Lisa was not sick. In fact the 42-year-old mother of two is glowing with health.

But she quickly made the decision to have a double mastectomy and full hysterectomy, including removal of her ovaries, fallopian tubes and uterus.

Lisa is one of a growing number of Australian women choosing to take the drastic preventative measure.

In 10 years, the number of women undergoing surgical removal of the ovaries and or their fallopian tubes at Melbourne’s Royal Women’s Hospital has rocketed from 19 a year to 106.

The Angelina Jolie effect

Doctors put much of the increase down to the impact of Hollywood actress Angelina Jolie, who in 2013 revealed that she had undergone a double mastectomy (removal of the tissue of both breasts) because she carried the BRCA1 gene.

Later, in another opinion piece in The New York Times, Jolie announced she had undergone further surgery to have her ovaries and fallopian tubes removed.

“I lost my mother, grandmother and aunt to cancer,” she wrote in 2015.

“My doctors indicated I should have preventive surgery about a decade before the earliest onset of cancer in my female relatives. My mother’s ovarian cancer was diagnosed when she was 49. I’m 39.”

Surgeon and gynaecologist David Wrede said that after Jolie came forward the numbers of people at the Familial Cancer Centre at the Royal Melbourne Hospital and Royal Women's Hospital requesting genetic testing more than doubled overnight.

“Literally,” he said.

“It absolutely went through the roof.

“I think doctors got more aware too, so younger women with breast cancer were being referred and ovarian cancer survivors were being referred.

“[Jolie] was brave and it is one of those times where celebrities use their media power usefully and very constructively.”

Choosing 'risk-reduction' surgery

When women were facing that kind of risk, Mr Wrede said, they did not need a lot of persuading about the appropriateness of surgery.

He said it became complicated when a woman’s close relative was diagnosed with ovarian cancer, but no genetic cause could be detected.

“It gets more difficult when the risk level gets down to 3 to 5 per cent,” he said,

“If you have no gene abnormalities in the family, and you have a sister or mother who has had ovarian cancer, is it is worth putting someone through premature menopause?”

Mr Wrede said at-risk women were usually advised to have their ovaries removed around the time of menopause, or five years before the age an older relative detected their tumour.

“We understand the anxiety about retaining ovaries when you have this knowledge, but a normal hormonal cycle is highly beneficial for women, so making someone menopausal at 35 is a very big deal," he said.

It is thought a woman with a BRCA mutation can reduce her risk of cancer by about 90 per cent by undergoing a mastectomy, as well as having her ovaries and fallopian tubes removed.

The Royal Women’s Hospital director of oncology Professor Orla McNally explained that the remaining threat was from primary peritoneal cancer.

“Inside our tummies everything is covered with a covering called the peritoneum,” Professor McNally said.

“A cancer can arise on those surfaces, which if you look down the microscope is indistinguishable from ovarian or fallopian tube cancer and we treat it the same.

“While it is very rare, it would appear that women with the BRCA mutation are at slightly higher risk of getting that cancer as well, but there isn’t anything we can do to prevent that, you can’t go and take out the peritoneum.”

The ripple effect

Lisa and Ellie’s family are now undergoing the unenviable task of finding out which of their cousins and aunts could be positive to BRCA1.

Their four young children will not be tested until they are adults, and that’s got the sisters thinking about what can be done in to improve treatments in the meantime.

They say they are embarking on fundraising to help the Walter and Eliza Hall Institute of Medical Research develop a cure.

While there is promising work being done to develop a screening tool for earlier detection of ovarian cancer, Mr Wrede says he does not see an alternative to surgery being developed and widely implemented for another 15 to 20 years.

Though the sisters appreciate the choice available to them today, Ellie says undergoing the major surgery “still feels primitive”.

“I’m very much hoping my daughter doesn’t have to do anything as brutal as this.”

After chemotherapy, and having her breasts and fallopian tubes removed, Ellie may still have her ovaries and uterus taken out later this year– another drastic measure that could potentially save her life.