I’m sure by now you’ve read Angelina Jolie’s op-ed , which appeared in the New York Times this morning, about her decision to undergo a preventative double mastectomy. To recap: The actress’s mother, Marcheline Bertrand, died of ovarian cancer back in 2007, so Jolie decided to get tested to see if she carries a gene mutation that would increase her risk for both breast and ovarian cancer. Turns out, she does.
Jolie learned that since she carries the BRCA1 mutation, she has a 50 percent risk of developing ovarian cancer and an 87 percent risk (!) for developing breast cancer. That’s why back in February, she began the process of undergoing preventative double mastectomy, which included a nipple-sparing procedure, mastectomy and reconstruction—all of which she was able to keep private.
But she decided to speak out about it now, she writes, “because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.”
This morning, I spoke with Jennifer Simmons, chief of breast surgery and director of the Women’s Center at Einstein Medical Center Montgomery, about who should get tested for BRCA mutations, what the medical treatment entails, and what Angelina Jolie and others can expect post-op.
What are BRCA1 and BRCA2, anyway?
BRCA 1 and 2 are the breast cancer genes, and what those genes do is prevent breast cancer. If you have a mutation in one of those genes, it inhibits your ability to fight breast cancer, therefore increasing the likelihood that you’ll develop breast cancer in your lifetime. Mutations in either increase your chance for developing breast cancer by 87 percent. With BRCA1, you also have a 50 percent risk for developing ovarian cancer, while with BRCA2, it’s slightly lower at 26 percent.
What you have to do is weigh this information, because it doesn’t apply to everyone. Only 5 to 10 percent of breast cancers are due to BRCA mutations. So when we’re looking at the breast-cancer population at large, we want to figure out who these BRCA carriers are because you want to catch it before they develop the disease.
Who should get BRCA testing?
If you have more than three first relatives who have developed breast cancer (i.e. mother, sister and grandmother); if you have developed the disease under the age of 50 or, more importantly, under the age of 40; if you or someone in your family has had cancer in two breasts; if you have a family history of breast or ovarian cancer on the same side of your family (i.e. mother’s or father’s side); or if you have a family history of male breast cancer, you would be considered higher risk and a candidate for BRCA testing.
What does BRCA testing entail?
It’s either a blood test or you can do an oral swab and look at salivary cells. You don’t need separate tests for BRCA 1 and 2; when you’re tested, they test for both. Results usually come back within two weeks.
Is the test covered by insurance?
When it’s appropriate, it’s covered by insurance. In other words, insurance won’t cover anyone who isn’t considered at risk. BRCA testing shouldn’t be done randomly or by people who won’t understand the true risks. Doctors must demonstrate that patients have a signfigiurant risk of being a mutation carrier for insurance to cover the testing. If you don’t fall into any of the risk categories, you have to have a really, really good reason.
Okay, so if a person gets BRCA testing done and it comes back positive, what’s the next step?
I’ll have a conversation with patients to discuss their options: keeping them under close observation; putting them on tamoxifen, an anti-estrogen that decreases their chances of developing cancer; or having them undergo a mastectomy. Most of the time, when they’re mutation carriers, they’ll opt for mastectomy. My job is to give information and guide them to the decision that makes them feel comfortable.
How quickly do you get surgery on the books if a patient opts for mastectomy?
Usually if they have not developed the disease, it’s more of a mental emergency than a physical one. By the time patients know that they’re mutation carriers, they’re very anxious to do something about it. We typically plan surgeries within the following month or two.
Is preventative mastectomy covered by insurance, or is it considered elective and therefore not covered?
In the mutation-carrier population, it’s covered by insurance, as is the reconstruction. In women who are removing their breast prophylactically because they have cancer on the other side, that’s also always covered by insurance. I’ve never been in a situation where a woman is having her breast removed that hasn’t been covered by insurance.
Are mastectomy and reconstruction separate procedures?
Some doctors do them separately, as in Angelina Jolie’s case, but we do reconstruction and mastectomy at the same time. It allows the patient to go to sleep with a breast and wake up with a breast. That way, they don’t have to spend time without a breast and deal with the psychological ramifications of the decision.
Do patients have to deal with a lot of pain post-op?
Actually, none of the survey is very painful. You would think that it is, but it isn’t. It involves opening the breast, taking out the tissue and replacing it with an implant or other tissue, all while keeping the nipple in tact. The worst part is that patients lose most of the sensation that they had before. While you can reconstruct the breast, it will never feel the same.
What is the recovery period like?
Depending on what type reconstruction they chose—sometimes we use an implant, but other times we use tissue in the abdominal wall or muscle in back or buttocks—it’s anywhere from two to eight weeks.
Do most women with faulty BRCA genes also get their ovaries removed?
In cases like Angelina Jolie, where her chances for ovarian cancer are higher, given that her mother died of the disease, yes. She should have the ovaries removed, and her article indicates that that surgery will come down the road. The average age for developing ovarian cancer is around 50, so I usually encourage women to have the surgery when they’re in their 40s, after they’re finished having kids.