Know risk, know reward
When actress Angelina Jolie went public with her decision to undergo a preventive double mastectomy, the revelation sent shock waves across the nation. Newspapers far and wide plastered her story on their front pages.
When Camy Velasquez heard the news, though, she merely nodded in understanding.
“Wise decision,” she says. “A very wise decision.”
Velasquez should know. Three months ago, following a simple blood test, the 42-year-old Archdale woman made a similar decision to remove a breast that’s not even cancerous. She also plans to have her ovaries removed, although they’re not cancerous, either.
Like Jolie, Velasquez had tested positive for the BRCA1 gene mutation, which sharply increases a woman’s risk of developing breast cancer and ovarian cancer. The only difference is that Velasquez had already been diagnosed with breast cancer in one breast, which was removed; then she took the blood test and consequently opted for the preventive mastectomy and hysterectomy.
According to national incidence rates, a woman’s risk of breast cancer jumps from 8 percent to 87 percent if she’s known to have the gene mutation, and her risk of ovarian cancer increases from less than 1 percent to 44 percent.
“With numbers like that, I think it’s a wise decision for any woman with this gene to have both breasts removed, and then go forward with breast reconstruction,” Velasquez says. “I had discussed this with my oncologist, and I already knew what route I was going to take if the test came back positive.”
Velasquez will have to finish her chemotherapy and radiation treatments before undergoing the second mastectomy and hysterectomy.
Health professionals say such preventive surgeries were already becoming more common, but they expect an exponential increase in the wake of Jolie’s bold revelation.
“I think what she’s going to do is like what Katie Couric did for colon cancer screening in terms of awareness,” says Dr. Bernard Chinnasami of Cornerstone Hematology/Oncology in High Point.
In fact, that’s already happening. Jo Thomas, breast cancer navigator for Cornerstone Health Care, says her office has received numerous calls since Jolie went public on May 14.
“A lot of these callers are appropriate for the genetic testing, and others just want to look into it a bit more,” she says. “I think some people assume anyone can just show up and get the test, but it’s about a $3,000 test, and there are some pretty strict criteria for who should get the test.”
That list, determined by the National Comprehensive Cancer Network, includes such criteria as:
•A breast cancer diagnosis for an individual 45 or younger.
•An ovarian cancer diagnosis for someone of any age.
•A family history of breast and/or ovarian cancer.
•A breast cancer diagnosis in a male of any age.
•An Ashkenazi Jewish ethnicity.
If you meet any of these criteria, insurance companies will usually pay for the genetic testing, according to Thomas.
“Sadly, Medicaid does not pay for it at all, and Medicare will not pay unless a patient has already been diagnosed,” she adds. “So even if you’re high-risk but you’re on Medicare — well, we’re hoping that changes in the future.”
If a patient meets the criteria, Thomas recommends the patient do the genetic testing if possible.
“Instead of this being a scary thing to find out (if a patient has the gene mutation), this is more of a knowledge-is-power kind of thing,” she says. “They’ll know what steps they need to take to stay healthy.”
Chinnasami says a preventive mastectomy is the logical next step.
“If you’re positive for this gene, it’s almost a case of not if you get breast cancer, but when you get it,” he says.
And for patients who test positive but do not choose the preventive mastectomy, “it’s like waiting for an ax to fall on your head every time you go to get a mammogram,” Chinnasami adds.
Medical professionals say more and more women who test positive for the gene mutation — even those who have not been diagnosed with breast cancer — are opting for preventive mastectomies, followed by breast reconstruction.
“I’ve had a number of patients, including a mother-daughter pair, who have done that,” says Dr. Virgil Willard II of Regional Physicians Plastic Surgery, who performs breast reconstruction for women who’ve undergone a mastectomy.
According to Willard, the reconstruction surgery is generally covered by insurance.
Velasquez says the positive results from her genetic test made the decision to have a preventive mastectomy a relatively simple one, despite the specter of facing breast reconstruction.
“My self-confidence is not based on my appearance,” she says. “...I knew this would be a challenging year ahead of me, but I was OK with it. I knew the most important thing was simply doing whatever I have to do to survive.”
Cathy Weaver, executive director of Guide Posts of Strength — a High Point-based cancer support organization — says Jolie’s decision to go public about her preventive double mastectomy may be her greatest legacy.
“I wasn’t the biggest Angelina Jolie fan, but this is the thing I admire her the most for,” says Weaver, a breast-cancer survivor whose test for the gene mutation came back negative.
“This is a very difficult decision to make, and for someone who cherishes their privacy to go public is an incredible gift, because there’s no question this test will help save lives.”
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For more information about testing for the breast-cancer gene mutation, visit www.cancer.gov/cancertopics/factsheet/Risk/BRCA.