A tough decision to beat a frightening threat

Every year, as the date of her regular breast-cancer screening drew nearer, Rose Smith fought a rising sense of panic.

A single mother of a primary-school-aged child, she had lost a 34-year old sister and a best friend to breast cancer, and watched her mother battle the disease. She had lumpy, lesion-prone breasts, which meant repeated call-backs, biopsies and agonising waits for results. The annual merry-go-round would leave her emotionally exhausted.

Last year, though never having been diagnosed with cancer, the then 40- year old came to a stark decision: to lose both breasts rather than keep living with the fear.

Several times she got cold feet. ''But then I kept thinking back to all those biopsies. I felt I couldn't keep going through this any more'' says Smith, who is a martial arts instructor, singer and props assistant with Channel 7's Home and Away.

''I had a little girl who was then 10½. I wanted to be there to teach her to be a teenager; I wanted to help her become a good human being.''

In November she underwent a prophylactic double mastectomy. That operation and the sometimes gruelling process of breast reconstruction which followed was documented over months by a close friend, the photographer Kellie Lafranchi. The images, confronting in their honesty and intimacy, will form the basis of a photographic exhibition to be held in Sydney next month, designated Breast Cancer Awareness month.

Smith hopes it will help lift the veil on radical breast surgery and assist other women facing similar choices about breast removal and what follows.

Double mastectomies, what breast cancer specialists call ''risk reduction surgery'', are not as rare as might be supposed among women who are at high risk, says Associate Professor Judy Kirk, the head of the Familial Cancer Service at Westmead Hospital.

''You see women like this who are young, they need to be there for their family, they are the primary carer and really they will take this major decision in order to best be there. They really want to survive'' she said.

Kirk's government-funded centre counsels women who have been found to carry faulty BRCA 1 or BRCA 2 genes, associated with much higher rates of breast and ovarian cancer than in the general population.

Up to 10 per cent of the 500 women on the clinic's books at any one time end up choosing to have their breasts removed without receiving a cancer diagnosis.

Others choose preventative medication, or have ovaries and fallopian tubes removed because of the strong link between genetic susceptibility to ovarian and breast cancer.

''We know that if we do that [remove ovaries and tubes] around the age of 40 we can halve the risk of breast cancer in these women,'' Kirk says.

Surprisingly, there are no centrally collected figures on the numbers of double mastectomies carried out in Australia, though the Melbourne breast surgeon Professor Bruce Mann estimates it's ''likely to be in the [low] hundreds''.

It is a choice heavily influenced, doctors say, by a woman's direct experience of breast cancer within her family.

''For a woman who has close relatives who've died an early death from breast cancer, or who had particular struggles with therapy, it's much more of an option than someone who has seen their affected family member go on to live a full and healthy life,'' Kirk says.

The Breast Cancer Network Australia, which will host a major conference in Sydney next month, says 38 Australian women every day learn they have the disease, and seven a day die from it. However, survival rates are constantly improving. Smith's doctors found a pre-cancerous lesion in one of her breasts after removal, strengthening her conviction she had made the right call.

But she was underprepared for how physically , financially and emotionally gruelling the operation and its aftermath would prove to be. She contracted double pneumonia, and with Medicare restrictions on rebates for screening of women under 50, found herself thousands of dollars out of pocket - ''a lot for a single mum''.

''I was so fit before the surgery,'' she says. ''There were times, yes, after the operation, when I wondered if I had done the right thing, looking at these two poor deflated teabags and wondering what I had done to myself.''

While some women choose not to have reconstruction, Smith wanted a natural shape restored.

New breast mounds can be created with implants, or with natural tissue ''flaps'' usually taken from the abdomen.

Either option has pluses and minuses (the flap procedure produces more natural looking breasts but is a bigger operation and more expensive).

She opted for implants, but then came weeks of what was at times extreme discomfort, as the expanders placed surgically under her pectoral muscles were topped up with fluid to mould her body into a shape that would best accommodate the new breasts.

She feels her surgeon has done a ''beautiful job'' and that she is nearly fighting fit again, but the scars can still be painful (doctors say that will diminish over time.) When she looks at photos, ''I have the odd sensation that I'm looking at someone else's body.''

What she has gained is a stronger guarantee of a shared future with her daughter, of having a firm floor under her life.

Kirk says one patient emailed her recently with a similar, poignant message: ''I was the first woman in four generations to see my beautiful daughter get married … It was a celebration never to be forgotten, or taken for granted.''

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