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Published May 14, 2013, 11:47 PM

Fargo sisters hope more women will get tested for breast cancer gene

Say preventive surgery an empowering decision
FARGO – When Mindy Obrigewitch’s family heard Tuesday that film star Angelina Jolie disclosed she had her breasts removed due to a steep hereditary risk for breast cancer, they posted furiously on the Facebook page of the Fargo woman.

By: Emily Welker, INFORUM

FARGO – When Mindy Obrigewitch’s family heard Tuesday that film star Angelina Jolie disclosed she had her breasts removed due to a steep hereditary risk for breast cancer, they posted furiously on the Facebook page of the Fargo woman.

That’s because the gene Jolie has is the one they carry, too – BRCA1, which can give a woman a nearly 90 percent chance of developing breast cancer. It’s the reason Obrigewitch, like Jolie, had a double mastectomy before being diagnosed with cancer. It’s the reason Obrigewitch’s sister is planning to do the same.

The sisters are among those who hope that Jolie’s admission, made in an op-ed published Tuesday in the New York Times, will spur other women to be tested for the gene and to consider the pre-emptive procedure.

“I guess for me, it was pretty easy,” said Mindy Obrigewitch of the decision. “I’m kind of a black and white person.”

Putting health first

In black and white, the statistics on BRCA1 and its related genetic mutation, BRCA2, are unsettling.

Sanford Health gene counselor Jamison Beek said women who carry the genetic disorder can have an 87 percent chance of developing breast cancer, compared to the 12 percent chance the general population faces.

Though it was difficult, Obrigewitch and younger sister Ashley Mergens both described their decisions to have their breasts removed as empowering.

“There was some part of me that wanted to experience breast-feeding my children,” said Obrigewitch, who was 24 and still dating her now-husband, Josh, when she went through with the surgery. “But not being there for my children instead? That was the decision.”

Obrigewitch had the surgery Mayo Clinic three years ago. Her husband says the decision to put her health first – the strength it took – was a big part of his decision to marry her.

The gene can also be carried and passed on by men, who face a 6 percent chance of breast cancer if they carry it, compared to the less than 1 percent of men in the general population who develop breast cancer.

Obrigewitch said her father got tested at the same time as she and her two sisters, after a family history that included one aunt getting breast cancer at 29 and another getting it in her early 30s.

Mergens has tested positive as well and plans to have a double mastectomy sometime next year.

“I’m definitely not good with hospitals and needles, so that’s something,” said the 21-year-old.

For now, she is going in for breast exams every six months at the Mayo Clinic, and for an MRI and a pelvic exam every year – as the gene also increases a woman’s odds of getting ovarian cancer to 44 percent.

Mergens isn’t worried about the aftermath of the surgery or about reconstruction, which she plans to have, as her sister did, shortly after the mastectomy.

“It’ll be kind of nice not to have to wear a bra,” she said.

While other celebrities have publicly discussed their double mastectomies, Mergens said Jolie is the biggest so far, something she thinks will only help increase awareness.

Cost issues

One of the drawbacks of the genetic test for BRCA is the cost, which Beek estimated at about $3,800.

The test isn’t covered unless patients meet their insurance company’s criteria for having a sufficient history of breast cancer in the family – a history that looks back three generations, Beek said.

“We run into some frustrating aspects … when it’s not being covered, like the patient may have a smaller family, or may have more men in the family,” he said.

Beek said so far there is only one lab in the country that tests for BRCA and the patent on the gene won’t expire for 20 years.

BRCA is the most common type of hereditary cancer syndrome among Sanford clients, Beek said, and that 5 to 10 percent of all cancers are in that hereditary grouping.

Blue Cross Blue Shield of North Dakota does cover genetic testing for BRCA but did not provide specifics of coverage Tuesday in a written statement from Dr. Eunah Fischer, internal chief medical officer.

“Coverage is provided for genetic testing when medically necessary. Women that test positive for the BRCA1 gene also have coverage for related treatments, which can include mastectomy and reconstruction surgeries,” the statement said in part.

Testing stigma

The other problem with testing – the one Beek most hopes Jolie’s op-ed will change – is the fear many people have of genetic testing in general.

“People have a kind of a doom and gloom outlook to genetic testing,” he said. “I talked to our nurse navigator, and she thinks we’ll be getting some more calls.”

For Obrigewitch, genetic counseling is helping her make the call to have her ovaries removed, once she’s finished having children.

And with the double mastectomy she’s already undergone, she now has less than a 5 percent chance of getting breast cancer.

“For her [Jolie] to have a positive attitude about this, to say this is the right thing to do, for me, I think will really help women,” she said.

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Readers can reach Forum reporter Emily Welker at (701) 241-5541