The breast cancer gene testing folks are talking about

theGRIO REPORT - With the announcement of Angelina Jolie’s double mastectomy, it leaves those without celebrity status wondering if genetic testing for breast cancer or preventative mastectomy is realistic for them...

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With the announcement of Angelina Jolie’s double mastectomy, it leaves those without celebrity status wondering if genetic testing for breast cancer or preventative mastectomy is realistic for them.

It is, says a spokesperson from Myriad Genetics, Inc., the main company that tests for two genes associated with breast cancer — BRCA1 and BRCA2. Myriad is the only company that holds the patent for the two genes and it has tested more than one million women so far.

Is it affordable?

Myriad says more than 95 percent of eligible people are currently covered by their insurance plans, especially with the new provisions of the Affordable Care Act. Medicare and Medicaid also cover the test.

“Knowing your risk and taking action not only saves lives, but it’s an economic benefit to the healthcare system,” say the spokesperson.

Blue Cross Blue Shield of North Carolina’s guidelines, for example, state that the insurance company will cover the testing if certain guidelines are met.

Dr. Bridget Oppong, breast surgeon and assistant professor of surgery at Georgetown University Medical Center, says cost can still be a deterrent.

“My last African-American patient was 32 years old. We encouraged testing, but she is someone who cannot afford to have testing,” Oppong says. “She has a job, but she has a significant copay [with her insurance plan].”

“If the test is $3,000 and you have to pay 20 percent, that’s still a decent amount of money for some women, so some choose not to get it,” she continues.

Myriad says that, despite the concept that this test is unattainable, most patients will have no out-of-pocket costs. For those without insurance, Myriad runs a patient assistance program that provides free tests or tests at a significantly reduced price. According to the website, it also assists those with insurance with copays in excess of $375.

Mastectomy for a woman who is BRCA-positive, on the other hand, is covered by insurance, Oppong says.

Getting tested

The testing cannot be done without a physician’s order. So, the first step is finding a physician who can decipher a woman’s risk. Myriad also has a quiz on their website to help patients identify their risk prior to meeting with their doctor.

According to the National Cancer Institute, the risk of having a harmful mutation in the BRCA1 or BRCA2 genes increases with the number of family members who have had breast or ovarian cancer, especially at a young age. Jolie’s mother, for example, had ovarian cancer.

Using a cheek sample or blood sample, Myriad’s laboratory delivers a report to the person’s physician, outlining the person’s risk.

BRCA testing does not, however, detect breast cancer. It only identifies risk, and only 5 percent of all breast cancers and 10 percent of all ovarian cancers lead to positive BRCA tests. Most of the breast cancers that run in families are related to genes that have not yet been identified.

Women with BRCA1 are also more likely to have triple-negative breast cancer — a type of breast cancer that affects African-American women more and is more difficult to treat. Because it does not respond to the typical hormonal treatments, the options are limited.

After finding out

Most of the women Oppong sees with a positive BRCA test are older and the decision to have a mastectomy is difficult. She also finds that mastectomy is even more difficult for the younger women she treats. When they’re young, she starts screening aggressively with MRI imaging and mammograms but she says it doesn’t eliminate risk. There’s up to an 85 percent risk of breast cancer for women who test positive for the gene.

“It’s tough for women who are young,” Oppong says. “They may want to breast feed in the future. But, we want to be aggressive because we don’t want you to have breast cancer.” She points out that Jolie has already had children.

And while breast surgeons can offer breast reconstruction after mastectomy, body image remains a real concern.

“There’s nothing like your natural breasts,” says Oppong.

Still a risk of cancer

Even with a double mastectomy, a risk of breast cancer exists. It reduces it, but only by 90 percent.

“There’s no way to remove 100 percent of the breast tissue, which would include removing the skin, which you can’t do,” Oppong explains. Those women still need close follow-up and frequent exams of the breast tissue, including self-breast exams.

Often overlooked

“I think the overall breast care in minority community is concerning to me in many ways,” says Oppong about her experience thus far as a breast surgeon. “I see a lot of patients coming here who have had substandard care.”

She also stresses the importance of including minority women in breast cancer trials. “We were first taught that minority women do not carry the gene,” she says. “But, minority groups were not really included in these studies. So now we don’t look at race as a factor [in determining risk].”

“I worry about not just access to health care, but also lack of knowledge. Women of color typically don’t do their due diligence when they’re diagnosed,” Oppong says. She suggests that all women, especially women of color, come with a list of questions to ask their doctor, such as the one on the Susan G. Komen website.

Dr. Tyeese Gaines is a physician-journalist with over 10 years of print and broadcast experience, now serving as health editor for NBC’s Dr. Ty is also a practicing emergency medicine physician in New Jersey. Follow her on twitter at @doctorty.

Note: The information included in this post is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice.