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The Honolulu Advertiser
Posted on: Thursday, April 3, 2008

Her mom's cancer death may have saved her life

By Liz Szabo
USA Today

Hawaii news photo - The Honolulu Advertiser

Jessica Queller opted for radical surgery after learning she had the BRCA1 mutation.

USA Today photo

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Jessica Queller spent much of her youth trying not to become her mother.

While her mom flaunted her figure, Queller hid beneath baggy dresses. Her mom spent a fortune on clothes; Queller shopped at thrift stores. When she was 20, Queller even rejected the name her mother gave her, Tiffany, for one inspired by a character in Shakespeare's "The Merchant of Venice".

But there was one part of her mother's legacy that Queller couldn't deny.

At 34, Queller learned she had inherited a gene that dramatically increased her risk of breast and ovarian cancer.

Queller's mother had developed breast cancer at 51 and died from ovarian cancer at 60.

Yet Queller, who long resented what she viewed as her mother's failings, doesn't blame her mother for passing on the gene.

Instead, Queller thanks her mother for saving her life. Her mother's disease prompted Queller to be tested for the gene - and avoid her mother's fate.

At 35, she chose to have a double mastectomy. Queller, who is now 38 and single, plans to have her ovaries removed by age 40 - soon enough to prevent cancer, but enough time, she hopes, to allow her to have a baby.

Queller has written a memoir about her experience, "Pretty Is What Changes "(Spiegel & Grau, $24.95), which is being published today.

"This whole book is about my mom," says Queller, whose younger sister also had a double mastectomy after testing positive for mutations in the gene, called BRCA1. "We feel like her life was sacrificed to save us."

Breast cancers in women with BRCA1 mutations tend to be more aggressive than other tumors. They often strike many women in their 40s, says Noah Kauff of New York's Memorial Sloan-Kettering Cancer Center. Mutations in another gene, BRCA2, also raise the risks of both cancers.

Ten thousand to 15,000 people have tested positive for the mutations, says Kauff, who estimates that several thousand have had surgery to reduce their risk.

Neither operation eliminates all risk, Kauff says, because even the best surgeon may miss some tumor cells. Cancer cells also are sometimes seeded just outside the organs that are removed.

Women with strong family histories of breast cancer were having these surgeries even before the genes were identified, he says. The discovery of the genes in the 1990s has allowed some women to avoid unnecessary operations.

Like Queller, most women struggle with the decision.

In a survey of nearly 2,700 women with the mutations, only 18 percent opted for mastectomy, according to a report from nine countries in the May issue of the "International Journal of Cancer. "More than half the women had their ovaries removed, according to the survey, which was conducted an average of four years after women had undergone genetic testing.

Queller, who has endured two additional surgeries to reconstruct her breasts, says she has never questioned her decision. Doctors found precancerous changes in the breast tissue removed during her mastectomy, she says.

Now, Queller is facing a new challenge: conceiving a baby on her own before her ovaries are removed. She has tried artificial insemination and, after her book tour, may pursue fertility treatments or in vitro fertilization.

Queller says she is nervous about revealing such intimate details of her life in her book. But she also hopes that her story will help other women grappling with the same decision.

Writing the book was also part of her grieving process, Queller says, because it forced her to read the journals that she kept during her mother's illness. She cherishes the time she spent with her mother at the end, and gained a new respect for her mother's courage.

"What was so remarkable is that, through her illness and suffering, she evolved so dramatically as a person, as a woman and as a mom," Queller says. "What was most tragic is that I finally got this nurturing, amazing mom just in time to lose her."

Queller has even learned to love her mother's shoes, which she inherited. Says Queller, "I wear them every day."