News this week that Angelina Jolie has had a preemptive double mastectomy shines a spotlight on BCRA1, the defective gene that puts carriers at high risk to develop breast and ovarian cancer.
According to NBC News, Jolie, 37, revealed on Tuesday that she carries the BRCA1 gene and that she had mastectomies in February on her otherwise healthy breasts. In April she had reconstructive surgery, Dr. Kristi Funk said in an interview with The Associated Press.
According to an article in the New York Times, some breast cancer experts feel that Jolie’s revelation will carry a lot of weight in influencing women to become fully informed about BCRA1.
I thought this would be a good time to reprise a post from March, 2012 on Justine Avery, a South Kitsap grad and the daughter of county Assessor Jim Avery. Justine also carries the gene, and she documented her decision to undergo prophylactic mastectomy in a personal blog. Here’s Justine’s story again.
SKHS grad makes preemptive strike against breast cancer
March 13th, 2012 by Chris Henry
Justine Avery is tired of living with a ticking time bomb. Avery, who carries the BRCA1 genetic mutation, has an 85 percent chance of developing breast cancer. The disease killed her mother Sandy Avery, first wife of Kitsap County Assessor Jim Avery, in 1989, when Justine was 9. So Justine has decided to get a prophylactic (preventative) bi-lateral (both sides) mastectomy.
The date of the surgery, Thursday, has been set for some time. Justine has approached the impending procedure with courage and a sense of humor. A 1999 South Kitsap High School graduate who lives with her husband Rob Sands and works in Seattle, Justine was feted by friends at a recent “Ta Ta to the Ta Ta’s” party. Her BFFs who put it together “made a very naughty cake.”
“I’m very supportive of it. I think it’s a very wise thing to do,” Jim Avery said of Justine’s decision.
Justine, who also has a 40 percent chance of developing ovarian cancer, has kept friends and family up to speed with a blog. Part of her motivation in going public with such a private matter is that she has been part of two studies on genetic predisposition toward ovarian cancer, and she hopes to raise funds for the Marsha Rivkin Center and Fred Hutchinson Cancer Research Center. Because of the research, high-risk women like her can get free screenings twice a year, something not covered by insurance.
Justine’s raised nearly $4,000 toward a goal of $10,000. That’s not counting about $2,000 raised from the Ta-ta party, with part of the donations coming from the sale of ta-ta-tinis … two olives. The support of friends and acquaintances — some of whom she hasn’t talked to in years — means a lot.
“It’s kind of made me feel at peace with my decision,” she said. “It’s kind of made me realize that what I’m doing is the right thing. It’s the right decision.”
More importantly, Justine said, she wants to share information with and offer support to other women who may have the gene, or who like her have already been tested and face some tough choices. Justine is not telling others what to do. On the blog, she simply shares the back story of her bold decision.
Her mother was diagnosed at age 38 (Justine is now 31). “I don’t remember a time when my mother wasn’t ill,” Justine said. And yet that didn’t stop Sandy Avery from living a full life. “It was always in the background. She was a wonderful mom with a great spirit. The cancer didn’t stop her, up until the last hour. She was a great mom.”
The aggressive cancer spread to other organs, and Sandy Avery died after six years of rigorous treatment. Other family members who developed cancer were her aunt, who survived breast cancer diagnosed in her 40s but later died of ovarian cancer, and her cousin, diagnosed in her 30s, who is a cancer survivor.
After her cousin’s diagnosis, some members of the family were tested for the “breast cancer gene” and found a positive link. Justine’s older sister, who escaped the BRCA1 gene, urged her to get tested, but Justine resisted, at least at first.
“Maybe to some degree I have always felt it was only a matter of time before the other shoe dropped,” she wrote on the blog. “Maybe it was because I was sick of the anxiety of going to get my boobs squeezed between two pieces of glass once a year and I figured that if I didn’t have the gene, I would not have to revisit this for at least another 12 years; or maybe it was to shut everyone up already…. Regardless, I truly believe the decision I made 3 years ago at the age of 28 is going to save my life.”
Justine is quick to point out that cancer caused by the gene is relatively rare. “Only 7 percent of breast cancers are caused by a genetic mutation (BRCA1 and BRCA2). If someone in your family has been diagnosed with breast cancer, it most likely means they are part of the other 93 percent. It’s when you see patterns of early diagnosis that you should start to consider genetic testing.”
Justine’s gut reaction to the whole situation: “This sucks! … Up and down for sure. I’m dealing with the suckiness of it all. I have a wonderful family who has helped me sift through the decisions I’ve been confronted with.”
Justine outlines the choices facing women who test positive for the gene. The first is vigilance in the form of frequent mammograms, MRIs, blood tests and ultrasounds.
“I am so thankful for the constant screening. My mom didn’t have the opportunities I have. But to be honest I’m getting tired of it,” she wrote.
The second option involves a five-year course of a chemotherapy drug called Tamoxifen, which results in early (and temporary) menopause, cutting her cancer risk in half.
“The last option may seem ‘radical’ to some: a bilateral prophylactic mastectomy. In other words, amputation of my precious boobies, because they will most likely kill me. I have chosen the latter of the three.”
Back to the time bomb analogy, there’s a 15 percent chance that, like on the cartoons, a little white flag saying “boom!” will pop put of the bomb, all that worry for nothing. But there’s really only one way for Justine to control the outcome and avoid a diagnosis she calls “unacceptable.”
“I still am haunted by the fact that I’m cutting off two perfectly normal (and quite lovely I might add) breasts for something I ‘may’ get,” she wrote. “But here’s the thing, ‘may’ in this circumstance means an 85 percent chance … That also means I only have a 15 percent chance of not getting it. I will sit at a craps or blackjack table for hours but I would never play those odds.”
Justine wants to have children and so is delaying a decision on removing her ovaries at this time. She knew you’d want to know.
According to Justine’s oncologist, about 50 percent of women with her type of family history elect prophylactic mastectomies, and about 80 percent get hysterectomies once they are done having children.
Since genetic screening has only recently become more common among families with a strong background of breast/ovarian cancer, Justine hopes writing about her experiences will help other women navigate this new frontier in women’s medicine.
“I am actually the first one in my family who is ‘choosing’ to do this preventatively. It can feel lonely sometimes,” she wrote. “This is my way of not only documenting this time for those in my family that may come later, but also helping to create awareness of breast cancer.”