Life with the BRCA 1 gene - Tanya Saad tells her story

TANYA Saad smiles and her face is beautiful. A cluster of tight curls hint at her Lebanese heritage and her body is strong, athletic but softened by the curve of her breasts.

It is her breasts that have thrust her into the spotlight and become the catalyst for a national conversation about the medical history of families and the need for genetic testing to be part of the public and political dialogue about preventative health.

Tanya is a "Taree Saad", a very small but very visible family in our community. Visible, says Tanya because she was not Anglo Saxon and visible because her family owned footwear stores. Visible was not something Tanya wanted to be during her childhood in Taree as she fought to find friends, survive relentless bullying at school and ultimately, search for her place within her community.

That was then. This is now.

Now Tanya is very visible and very aware of her place and purpose. Her name, face, heritage, sexuality and breasts are on television, in magazines and newspapers following her choice to share her story about the decision to have a preventative double mastectomy and reconstructive surgery after learning she had the deadly BRCA 1 gene.

The story is now committed to paper in a book, titled 'From The Feet Up' and this month she will return to Taree to promote the book, but more importantly, promote the need for people to be aware of the medical history of their family, to raise the issue of genetic testing as a preventative health measure and to encourage people to see the value in developing resilence through hard life experiences.

Cancer peppered the Saad family tree and so in 2008 Tanya decided to undergo genetic testing, she had a sixth sense that something was wrong and the outcome opened Pandora's Box.

She carried the BRCA 1 gene fault and the news answered many questions about the prevalence of cancer in the family but also propelled her and her family into a world of medical choices and experiences that were confronting, painful and frightening.

"Cancer was everywhere in my family. 85 per cent of our closest family members had breast or ovarian cancer or prostate cancer in our men," Tanya said.

"I was 30 when I learned that I had the BRCA 1 gene fault. It was devastating and it forced me to make choices, and to consider my life in a very real way.

"You know, my life has a common thread of three experiences that I see as really defining me. My heritage, faulty genetics and my sexuality.

"Remarkably, the BRCA 1 gene fault in some ways was less of an impact on me because I couldn't see it. It was major, but with it there was also a sense of de ja vu, in so far as that I had been here before.

"My life had always been about finding my feet when I was a fish out of water, with no steps to follow. This was no different to being the eldest Arab daughter in an Anglo Saxon community who had to go to school in a small country town, or coming out as a gay woman now, I was the first woman in my family to test for the BRCA 1 gene fault and to make the decision about possible preventative surgery."

Tanya is one of three daughters and her sisters, Paula and Vivian, decided to follow Tanya's lead to learn if they carried the BRCA 1 gene fault. Paula tested positive and Vivian tested negative.

The genetic lottery united the sisters as they worked together to support each other through the emotional process of asking the big questions, assessing the impacts, and deciding if, how and when a preventative double mastectomy was the right decision.

"Making the decision, a decision that seems so radical, was so hard and an emotional roller coaster experience. Some days, I felt strong, and absolutely believed that this was the right thing to do, and then the next day, I would question myself and wonder if I should play the genetic lottery," Tanya said.

"It felt like I was playing a game of chance and really, it's not one you want to lose."

So Tanya played her hand and decided to have the preventative double mastectomy. Forefront in her mind was choice. She knew the diagnosis of cancer removed a great deal of choice from the individual. "For me, my future health and improved outcomes for breast reconstruction were critical in my decision," Tanya explained.

"Preventative action delivered me the best health outcome. With the BRCA gene it's a conversation, it's a choice and it gives you some power in terms of the outcome in how you recover and move forward with reconstruction.

"To begin with, you are cancer-free, you get to keep your nipples, you get to keep your skin. This makes a big difference, whereas if I had developed cancer, the choices are dramatically reduced, you may not get to keep your nipples, or the skin, depending on the cancer and that makes a big difference in reconstruction.

"There are so many challenges that you have to face and permanent outcomes that come from cancer treatment, chemotherapy and the removal of your lymph nodes.

"When you have cancer, all you want to do is live. So that is your priority in terms of treatment, how your breasts look after treatment is not as high a priority. You want to live.

"But the removal of your breasts is an extremely hard and personal journey, and really, you don't know how much it will affect you, and how you will feel about your body until they are gone."

It was a heartbreaking decision but the right decision for Tanya and she says the experience has given her a great deal, indeed "the profound moments in your life are not about getting what you want, they are about discovering who you are."

Tanya is now a woman who is proud of her choices, her heritage and her courage to tell her story. The next chapter of her life is a work in progress but it will involve beginning conversations about big issues, such as breasts, genetic testing, bullying, and sexuality.

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