Experts: Being proactive with breast cancer not to be taken lightly

PHOTOGRAPHER: Kelly de la Rocha

In a New York Times op-ed piece splashed all over social media Tuesday, actress Angelina Jolie revealed that earlier this year she had a preventative double mastectomy after discovering she carried a “faulty” gene that greatly increases the risk of breast cancer.

Jolie, whose mother died of ovarian cancer at age 56, said she shared her story in hopes that other women could benefit from her experience.

Local medical experts and others who work with cancer patients applauded Jolie’s bravery and initiative, but cautioned that her decision is not for everyone.

Through genetic testing, Jolie found she carried BRCA1, an inherited gene mutation that affects DNA repair. Doctors estimated she had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer.

“When you inherit a mutation, your DNA can’t correct itself, so that over a lifetime, you have this very high risk of a collection of cancers,” explained Ricki Lewis, a genetic counselor at CareNet Medical Group in Niskayuna.

The genetic defect is detected by a blood test. Most women will not test positive, Lewis said, but there are some red flags that indicate who should be tested. Those include multiple cases of breast or ovarian cancer in a family, particularly in people under age 50, and a family history of male breast cancer.

The BRCA1 gene can also cause prostate cancer, Lewis noted.

“I, as a genetic counselor, think that anyone with a lot of members of the family with any type of cancer should consider testing,” she said.

The test itself should not be taken lightly, experts agree. Counseling should be sought in advance so advice can be obtained about what to do in the event of a positive result, said Eileen Bird, executive director of To Life!, a Saratoga Springs nonprofit organization that provides breast cancer education and support services.

“If you [get tested] without some assistance, you would potentially create a level of anxiety that is not necessarily healthy,” she said.

A positive test result doesn’t equate to a diagnosis of cancer, Lewis pointed out.

“What you inherit is a susceptibility gene. You do not inherit cancer,” she said.

BRCA1 carrier Mara Ginsberg was not surprised to find that her body harbored the gene. Both her mother and aunt died of breast cancer at 44.

Ginsberg, the founder of To Life!, was diagnosed with breast cancer at 37 and had one breast removed. About two years later, she found out she was a BRCA1 carrier while participating in a study by the University of Washington.

“What I did do before I even had the [genetic] test was carefully evaluate with a genetic counselor both my risk factor and my options for what I would do if the test came back positive,” the 54-year-old said.

As a result of the test findings, Ginsberg had her ovaries removed, but it wasn’t until several years later that she made the move to have her second breast removed as a preventative measure.

“And don’t you know, they found something when they did that. It wasn’t malignant, but the doctor said it would have been in short order,” she recounted.

In a statement, the American Cancer Society Board of Directors said, “Only very strong clinical and/or pathologic indications warrant doing this type of preventative operation.”

There is no consensus about what the best option is for women who are carriers of BRCA1, said Dr. Alvaro Carrascal, senior vice president of cancer control for the American Cancer Society. Having preventative surgery doesn’t guarantee elimination of breast cancer risk, because even the best surgeon could leave some breast tissue in the body, he said.

There are other options besides a preventative mastectomy, he noted. These include preventative chemotherapy and vigilant screenings and exams.

Eliminating cancer risk factors like smoking, excessive alcohol consumption and unhealthy eating habits can also help reduce the likelihood of getting cancer, he said.

Women considering a preventative mastectomy should get a second opinion before proceeding, Carrascal recommended.

Expenses also need to be taken into consideration. According to the American Cancer Society, insurance plans created before the passage of the Affordable Care Act are not required to cover the costs of genetic counseling, testing or any surgery to reduce the risk of breast cancer. Under the Affordable Care Act, new plans are required to cover the costs of counseling and testing for breast cancer risk. There is no such mandate for the coverage of surgery.