Sisters share story of BRCA diagnosis, preventative surgeries
INDIANAPOLIS (WISH) — By just looking at Amy Austin and Emily Barrick, you cannot see all that makes the sisters who they are.
“We shared friends in high school and were very close,” Barrick said.
To figure it out, you must start with their mom: a nurse, a choir director and a breast cancer patient at age 37.
“She had her first chemo on my birthday,” Barrick said. There would be many sick days, but her last came when she was just 42.
“It was hard being so young,” Barrick said. At 15 and 16, respectively, Emily and Amy saw what breast cancer could do.
“We definitely had to grow up much faster because of that,” Barrick said.
And there would be more death from cancer in the family, too. So when their aunt tested positive for the BRCA gene mutation, an abnormality within the DNA that is related to breast and ovarian cancer, Amy knew what she had to do.
“Just having that in the back of my mind that when I went I really wasn’t surprised. I mean, I was hopeful, there’s always a 50/50 chance whenever you go for the genetic testing that when they told us, I wasn’t really surprised” Austin explained.
“So then she hounded me to get tested, literally every week she was asking when I was going to get tested,” Barrick said.
She eventually did, and the test came back positive.
“I remember telling her: ‘Of all the things that we share and have in common, I wish this wasn’t one.’ But I’m so glad that we could go through it together,” Barrick said.
They also shared the same doctor, Dr. Kandi Ludwig, director of the Breast Care program at IU Health North.
“The average woman has about a 12 percent chance of getting breast cancer over the course of her lifetime,” Ludwig explained. “Women who carry these BRCA mutations have somewhere between a 60 to 80 percent risk of developing breast cancer before they reach age 70, so it is a dramatic increase. Ovarian cancer is extremely rare in the average population. The risk of ovarian cancer in these women can be about 40 to 60 percent.”
With those statistics in mind, their mom’s fate and the future of their own families, Emily and Amy had some decisions to make.
“The day I found out I was positive my sister was with me and my husband and my aunt and the boys had swim lessons that night, so I was upstairs getting ready and doing a few last minute things and my husband Andy was downstairs and I heard them all laughing and I had a moment where I thought, ‘They’ll be OK if something happens to me.’ And it was the very next day, like, nothing’s going to happen to me, I get a choice in this, and got to go and have my preventative surgeries,” Austin said.
She underwent a mastectomy and hysterectomy. Barrick also chose to get a mastectomy and her Fallopian tubes and ovaries removed when her youngest baby was four months old.
“Having five kids, I did not want to take the chance of the screening and even catching it early, ’cause even if you got it early, you’d still have to have some kind of surgery and chemo, and I just didn’t want that stress over my head, so I figured that it would be much less anxiety to just go through the surgeries and then be done,” Barrick said.
While some like Emily and Amy take preventative measures, others choose to undergo surveillance.
“Enhance screening with breast MRI and mammograms,” Ludwig said.
“In someone who still wants to maintain fertility, we recommend surveillance, so that consists of yearly pelvic exams a pelvic ultra sound and a CA125, which is a blood test that can diagnose an early ovarian cancer for patients who are at risk,” said Jeanne Schilder, gynecologist oncologist at IU Health.
Schilder sees patients related to the risk of ovarian cancer.
“Some new data suggest that not only the Fallopian tubes and ovaries are at risk, but we now know that there’s a certain type of uterine cancer that women with BRCA 1 mutations are at risk for. It’s not as prevalent as ovarian cancer and breast cancer in these women, but there is an increased risk of a type of uterine cancer called papillary serous uterine cancer, that tends to be a higher risk in the BRCA 1 patient rather than BRCA 2, and may be a slight increased risk in BRCA 2 patients. But we are now recommending increased surveillance of the uterus and in some patients will recommend a prophylactic hysterectomy as well,” Schilder says.