Leaving Long Island: The Blog

Below is an article from the Des Moines Register, time-stamped 12:49 PM, Sep 25, 2012 and written by

ESTELA VILLANUEVA-WHITMAN
Special to the Register

Fern Kupfer assumed she would eventually die of cancer. But learning she carried the gene that made her more likely to develop breast and ovarian cancer came as a surprise.

It lead to months of worry, research and decision-making with lifelong physical and emotional implications.

Kupfer, a retired Iowa State University English professor, reflects on that experience in her new memoir, “Leaving Long Island.” Part of the book follows the four months from testing positive for BRCA, a genetic marker for developing breast cancer, to her bilateral mastectomy in August 2009.

Kupfer was watchful about her health and had regular mammograms. Her mother and grandmother both had breast cancer, but both were post-menopausal. Two cousins also tested negative for BRCA.

“I just thought, I don’t have it. I’m in my 60s. I thought it was unnecessary,” Kupfer said.

That changed when her doctor discovered a lump in her breast and suggested genetic testing. Kupfer is of Ashkenazi Jewish descent, which meant she had higher risk of carrying the gene. Wanting to know for her daughter, she agreed to the test, but didn’t obsess over it. When the result was positive, she became angry and cursed the news. That led her daughter and brother to also get tested, both with negative results.

Patients with the gene have up to a 50 percent higher risk of getting breast cancer by age 50 and up to an 87 percent chance by age 70. Age of diagnosis is the main high-risk factor and patients under 50 are automatically referred for genetic counseling, said Mary Ellen Carano, the genetic risk educator who worked with Kupfer.

Testing is based on a variety of factors and looks at family history of breast and ovarian cancer across generations. Patients with BRCA have three options to lower their risk: surveillance, chemoprevention through medication, or surgical removal of the ovaries through an oophorectomy and/or prophylactic bilateral mastectomy.

Kupfer’s doctors were family friends, so she asked what they would do if their wives were in the same situation. She connected with other patients, perfect strangers, viewing their scarred chests in public restrooms. Her book includes a series of emails with one of the women, sharing her insecurities and anxiety over her future appearance and fears of being a burden.

For many years, Kupfer was an advocate for special needs children. She lost a son, Zachariah, to Canavan disease, another genetic condition she weaves into the memoir and was the focus of a previous book, “Before and After Zachariah.”

The connections she made with other women helped her chose an oophorectomy, followed by bilateral mastectomy without reconstruction.

Carano said Kupfer does a good job illustrating the struggles women with BRCA face. While removal of the ovaries is less visible, the decision often depends on where women are in their hormonal state. Removal of the breasts, however, can affect self-esteem and appearance. The majority of BRCA patients she works with choose to have prophylactic mastectomies.

“It’s a daily reminder and it’s a very agonizing decision,” Carano said, “I don’t think the implications of what that is really hit until afterwards for a lot of people.”

Kupfer feels her decision was reasonable and smart.

“If you don’t do the research or know about the genetic components, it sounds so extreme to take off healthy breasts, to take off a healthy part of the body,” she said.

Kupfer hopes her book is helpful to women making difficult choices and will appeal to others wanting to read about the topic.