10/21/2014

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Breast cancer survivor chooses not to test baby for BRCA gene

Breast cancer survivor chooses not to test baby for BRCA gene
Sarah Lien and her mom Barbara Hawkins at an OB appointment earlier this year. Lien is a breast cancer survivor and carries a gene that greatly increases a person's risk of developing cancer. Despite the fact that her daughter has a 50-percent chance of inheriting the same gene, Lien has decided not to test her baby for it. Courtesy Sarah Lien.
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SEATTLE – Sarah Lien knows better than most people what it’s like to have breast cancer. Not only has the Lake Stevens, Wash., woman survived the disease herself, but she has also watched her mother and grandfather live through a breast cancer diagnosis.

But when Lien went through in-vitro fertilization this year to have her first child, she chose not to test her embryos for a cancer-causing gene each has a 50-percent chance of carrying. With her due date quickly approaching, she says her daughter’s health is in “God’s hands.”

“My husband and I talked a lot about it and prayed about it,” Lien said. “I thought, ‘What if my parents had done that and chose not to have me because I had a gene?’ My life isn’t a tragedy because I have breast cancer; it’s a blessing.”

Lien first learned about breast cancer when she was just 9-years-old. Her mother, Barbara Hawkins, was diagnosed at age 37. While Hawkins was treated with a lumpectomy and radiation, she tried to shield her children from the realities of the disease.

“She didn’t want us to worry,” Lien said. “We only knew mommy was not feeling well and that we should be extra careful when giving her hugs.”

Hawkins recovered and was cancer free for more than a decade. But, cancer was not done with the family. In 2007, Lien’s grandfather was diagnosed with breast cancer. One year later, Hawkins relapsed.  She was treated aggressively with a double mastectomy, chemotherapy and more radiation. This time, Lien was old enough to understand just how ill her mother was.

“My fear was, ‘What am I going to do without my mom?’” Lien said.

While caring for her Hawkins, Lien grew increasingly concerned about her own cancer risk. She began asking her gynecologist for a mammogram at age 18 and repeated the request every year.

Each time the doctor told her medical insurance would not pay to test someone so young.

“Everyone told me, ‘You’re too young to think about it; just get it out of your mind,’” she said.

But, Lien wasn’t convinced. Each Saturday she would do a self-breast exam, never missing a week. In 2011, Lien felt a walnut-sized lump in her breast .

“I crumbled to the floor,” she said. “I knew it was cancer. I just told my husband, ‘I need to talk to my mom.’”

Days later Lien was diagnosed with stage-3 breast cancer. The disease had spread to her lymph nodes and her clavicle.

“I remember the silence in the room,” she said. “I was thinking I could die, and my husband and I are not going to have the fairy-tale life we had planned. It was too much to process.”

Lien was tested for several known cancer-causing genes and learned she is positive for BRCA2, which greatly increases a woman’s risk of developing breast cancer. Despite her mom’s history with the disease, Lien inherited the gene from her father, explaining her grandfather’s breast cancer.

Lien knew her children would have a 50-percent chance of inheriting BRCA2, but she and her husband still decided to freeze embryos before starting chemotherapy to preserve their chance of having a genetic child.

Earlier this year Lien was cancer-free and decided to use the embryos to start a family; she chose not to have them tested for the gene before implanting them.

Dr. Julie Lamb, a specialist at Pacific Northwest Fertility, said about half of the women she cares for who are BRCA positive also choose not to test their embryos for the gene.

“It’s a very personal decision,” Lamb said. “I present all the options but never tell someone to test or not test.”

Now knowing that she is having a girl, Lien plans to let her daughter decide whether she wants to be tested for the gene when she is a teenager.

“We know it’s in God’s hands and not ours,” Lien said. “But, she’s going to know she comes from a long line of women that are very strong. Whatever she has to overcome, she’s going to have all the strength in the world to back her up.”

Meanwhile, Hawkins, who was diagnosed with breast cancer a third time in 2011, is fighting for a cure for her granddaughter. She has participated in the Susan G. Komen 3-Day walk and joined in a study at the University of Washington to further medical research that could one day help her granddaughter.

“Research moves quite quickly, so we’re just praying that if she has the gene there will be new treatments,” she said. “We have to have faith that will be there for her.” 

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