Women are facing tough decisions when they learn they have a gene which puts them at a higher risk of getting cancer.
Actress Angelina Jolie announced Tuesday she had a double mastectomy when she learned she carried a gene that gave her an 87 percent risk of getting breast cancer. Because of Jolie’s celebrity status, the BRCA1 and BRCA2 genes are in the spotlight.
“Empower yourself with knowledge. Be informed and make good decisions for you,” advised Lisa Miller, whose decisions for her health meant getting tested for the breast and ovarian cancer gene because of her family history.
The gene testing dates back to the 1990s and getting the results often leads to more questions.
“When I found out that I was BRCA positive, I had to make a tough decision,” explained Miller.
Miller tested positive for the same gene that Jolie had, indicating she had a strong chance of developing breast and ovarian cancer.
“What Angelina Jolie did today, many women have been able to make the same decision,” said Miller.
Miller saw close relatives battle ovarian and breast cancer. When she learned she carried the breast cancer gene, she opted against a preventative double mastectomy.
“Being 48 at the time, it wasn’t right for me and my husband at the time,” Miller said.
She did have her ovaries removed, which lowered her risk, but still, two years later, Miller was diagnosed with breast cancer. She underwent chemotherapy and had a double mastectomy, removing the breast with cancer and the other without.
Her daughters also got tested and learned they are BRCA1 carriers, too.
“One is 25 and one is 28. Surveillance has begun with mammography, alternating every six months with breast MRI,” Miller said. “They’re not going to be doing anything at this point in time surgically, they both would like to have families, so we are going to hold off on that.”
IU School of Medicine breast surgeon Gary Dunnington says more young women are opting for preventative double mastectomy.
“I have never seen a woman who has regretted making that decision. I think for those of us not in the situation, it’s very difficult for us to imagine the agony, the angst, with every screening event when you know you’re a carrier of this breast cancer gene, which for BRAC1, probably has a risk of 65 percent of developing a breast cancer at some point in your lifetime. So with every mammogram, it’s the concern ‘this could be the event’,” Dunnington said.
Miller says her prognosis is promising and has no regrets.
“I’m still very happy with my decision,” she said.
As a multi-million dollar movie star, though, Jolie’s choice for genetic testing and a double mastectomy probably didn’t factor in cost the way it would for the average woman.
“It’s expensive by most people’s idea of…there’s a lot of other things you’d want to buy,” said Stephanie Cohen with St. Vincent Hospital.
Cohen does genetic counseling for St. Vincent and helps women decide every day, if the testing and procedures to follow are worth it.
“The good news is insurance is usually covering them when it’s appropriate and they’re usually covering prophylactic surgeries and follow up care that’s required based on their findings of the genetic test,” explained Cohen.
The test to see if a woman is a carrier of the gene is expensive, costing around $2,500-3,000. According to Cohen, for the test to be covered, certain guidelines have to be met, like a family history of ovarian cancer, male breast cancer, or breast cancer before the age of 50. Even then, it all comes down to what your insurance will cover and what you can afford to pay out-of-pocket.
“It really varies widely,” said Cohen.
If you test positive, options include close surveillance, taking drugs which reduce your risk, or opting for preventative surgery.
“Personal decision. Good, bad or indifferent, it’s your decision,” said Miller.
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