In February, Courtney Armusewicz was in California, getting ready to sit in on a graduate school class, when her phone rang. It was her mother in Hampton Bays.
“We need to have a serious talk,” she said.
Ms. Armusewicz knew it could be about only one thing.
In January, the 25-year-old had undergone a medical test, a screening for BRCA, the genetic mutation that increases a woman’s chance of developing breast and ovarian cancers. Given the extensive history of breast cancer in her family, Ms. Armusewicz said she was not surprised when her mother told her by phone that the test came back positive for BRCA2, one variation of the mutated gene.
“It hit me really hard at first. I’m 25—I figured I had some time,” the Hampton Bays native said in a phone interview from California, where she has lived since 2008, attending San Diego State University.
But instead of being discouraged by the news, she took another path: a commitment to action.
On Tuesday, she is scheduled to undergo a double mastectomy—the removal of both breasts, which are currently healthy—as a preventive measure to significantly reduce her risk of chemotherapy, radiation or even death due to breast cancer.
Her surgery will be performed by Dr. Karen Kostroff at North Shore University Hospital in Manhasset. She also will receive reconstructive surgery immediately after, performed by Dr. Lyle Leipziger.
“I figured while I’m young and healthy, I can avoid chemo and radiation and get it over with,” Ms. Armusewicz said. “For me, this isn’t something bad—this is something great. I get to control my future.”
Ms. Armusewicz said she knew from a very young age that the disease would creep up on her in adulthood.
“Ever since I was around 14, when my mom went through it a second time, I just had this hunch that I would get breast cancer,” she said. “I remember playing with my aunt’s wig when I was 3 or 4, and I remember my mom going through it.”
Her mother, Juliana, along with her two aunts and grandmother, all had cancer at some point in their lives, some twice. Ms. Armusewicz said she knew her chances of getting cancer were already high before she went to get tested for BRCA—but the test results showed her risk to be more than 90 percent.
According to the American Cancer Society, one in eight women will develop invasive breast cancer in their lifetime. It is estimated that in 2015 about 231,840 women will be diagnosed with the disease for the first time, and that 40,290 will die from it. Aside from lung cancer, breast cancer is the second-leading cause of cancer death in women.
Because of that, the decision to get a double mastectomywhich might seem drastic to some—came naturally to Ms. Armusewicz. On her blog, where she has been documenting her journey since March, she wrote that the surgery is simply not optional if she wants to live a long, happy and healthy life.
“Everything I’m going through is not something I’ve been dying to cross off my bucket list. I’m not doing this for fun,” she wrote in an entry on Sunday, just nine days before her scheduled surgery. “I mean, I guess I could wait for cancer to take over my body and possibly kill me, I guess that’s always an option. [But] if I do not have this surgery, I will get cancer.”
Her mother was first diagnosed with breast cancer 20 years ago, and then it came back a decade later. Juliana Armusewicz said that if the medical technology had been around then, she would have made the same choices her daughter has made.
“I’m happy with her decisions. She’s brave and courageous,” she said. “And I’m sad as well—she has the gene that I passed to her. So it’s a lot of emotion.
“I think it’s the best move,” her mother continued, referring to next week’s procedure. “I was diagnosed at 32, with two young children at home. At that point, had we known about the testing, I would have gone ahead and had a full mastectomy.”
Two years ago, actress Angelina Jolie stepped forward about her own choice to undergo a preventive double mastectomy, and this year she revealed that she also had her ovaries and fallopian tubes removed, a procedure known as an ovariectomy. She had also tested positive for BRCA, having a family history of breast cancer similar to Ms. Armusewicz’s.
Ms. Jolie’s experience put BRCA on the radar of women all over the world, and Ms. Armusewicz said she was inspired by the actress when making her own decision.
Dr. Edna Kapenhas, a breast surgeon and the medical director of the Ellen Hermanson Breast Center at Southampton Hospital, agreed that many more women have been inquiring about the genetic test.
“A lot more people ask for it,” she said. “Not everybody who asks for it is a candidate to have it. But, yes, there’s more awareness.”
Candidates who should be tested for BRCA, according to Dr. Kapenhas, include individuals who have an extensive history of breast and ovarian cancers in their family. Other red flags include diagnoses before the age of 50, if a woman has cancer in both breasts, and if a male in the family has breast cancer as well.
Dr. Kapenhas recommends that women who test positive for BRCA1 or BRCA2 undergo both a double mastectomy and an ovariectomy, as the two surgeries reduce more than just a woman’s chances of getting cancer. “These interventions … are not only reducing cancer risk but also reducing mortality,” she said. “That’s really significant.”
The doctor noted that a mastectomy can be life-altering, and that many might choose not to go through with one because of that. “Breasts are external organs. It’s part of your image. It’s part of being female,” Dr. Kapenhas said. “As far as the femininity and having an altered image of themselves … they’re going to be looking fine. [It makes a] significant difference … in their life as far as breast cancer and reducing risk of death.”
But Ms. Armusewicz says the fear of physical change is completely absent from her mind. Instead of worrying about how her body will be different, she is focused on the fact that she will be able to live her life cancer-free.
“I’m so ready for my surgery. I consider myself extremely lucky, instead of, ‘Oh, my body is going to change,’” she said. “I’m really excited about it, just to wake up with that … one thing off my plate. It really couldn’t have come at a better time.”
As with most surgeries, Ms. Armusewicz’s double mastectomy is anything but inexpensive. But while she has not been given a definite cost for the procedure just yet, the price can typically range from $15,000 to $50,000, including reconstructive surgery. Her insurance company is expected to cover about 85 percent of the cost, leaving Ms. Armusewicz and her family to pick up the remaining 15 percent because she went to out-of-network specialists that don’t accept insurance.
To help pay for her portion of the surgery’s cost, Ms. Armusewicz was persuaded by a friend and a cousin to set up a Go-FundMe campaign, using a website to collect contributions from supporters. With that campaign, the 25-year-old came out publicly about her decision in hopes of raising at least $5,000 for the initial deposit required for the surgery.
The last thing she expected was to reach her goal—but as of early May, she’d exceeded it by nearly a thousand dollars, with donations from more than 70 people, some of whom she didn’t even know.
Those close to Ms. Armusewicz said they were grateful to see her receive so much encouragement for her decision.
“People have literally come out of the woodwork to show her support and be there for her,” said Lauryn Dougherty, Ms. Armusewicz’s older sister. “To see them kind of pull together and show their support was really, really amazing.”
The entire family’s goal in sharing Ms. Armusewicz’s story is to encourage other women to get tested for BRCA. Ms. Dougherty went for testing—hers came back negative. Their mom stresses that the technology could have made a big difference in her own life had it been available when she was 25.
“I am hoping and praying that she touches many, many people … and helps those with breast cancer,” she said about her younger daughter. “And they’ll get the right care and they won’t be discouraged.”
For Ms. Armusewicz, the widespread support has excited her not just because of the donations pouring in, but because it has gotten the word out about her choice. She said she receives messages on her blog from people all over the country about their own personal struggles beyond cancer.
“There’s always people that can relate and say, ‘Oh, I thought I was the only one.’ I really believe in making that connection with people,” she said. “I think it’s so great that people are now having this dialogue, and mastectomies are things that people know about.”
Ms. Armusewicz said that she eventually will opt for an ovariectomy as well but added that she would like to have children first. She is satisfied with combating at least one of the cancers she’s at risk for now.
“Breast cancer, sorry—you’re not going to tear me down,” she said.
Courtney Armusewicz’s GoFundMe campaign can be found at www.gofundme.com/s3b9a2a8. The blog about her journey can be found at builtfromthefireprevivor.blogspot.com.