FORT WAYNE – After it all – the 16 rounds and three variations of chemotherapy, the 33 radiation treatments, the temporary loss of her hair, and most importantly, the fear and concern that gripped her husband and three daughters – Carrie Barcus still underwent a double mastectomy on Nov. 8, 2011, just three months and three days past her 41st birthday.
It all could have been prevented, she believes.
Through her diligence, Barcus hopes a new state law effective July 1 can help other women avoid what she endured. With the help of Senate President Pro Tem David Long, R-Fort Wayne, who last year listened to Barcus tell her story, a bill was unanimously passed that requires health providers to ensure coverage for certain services for women with dense breast tissue.
Additionally, it will require the medical licensing board to adopt rules or protocol establishing an education program and standards for annual screening or diagnostic tests of women with high breast density.
“Obviously it makes me feel good that one person – me – was able to do something that’s going to help save a lot of other women from going through what I went through,” Barcus said.
She has been a nurse since 1999, two of those years spent working at Parkview Whitley Hospital. In 2009, Barcus joined other nurses in a weight-loss contest for three months. After losing a few pounds, she continued to lose weight, dipping from 137 to 107.
The fact that she lost 30 pounds without trying, and that she was constantly exhausted, prompted Barcus to see her physician.
Results from a series of tests, including a mammogram, came back normal. Barcus was assured she didn’t have cancer even though she noticed tender areas in both breasts. She wrote it off as a possible cystic breast disease, which is a lumpiness that is often considered benign.
But the pain continued, and so did the weight loss and fatigue.
“So I went back again, and they said all of your tests were normal,” Barcus said. “I said, ‘I know, but you don’t turn 40 and start losing weight unless you’re dying of cancer.’ It’s not that I want something to be wrong; I just know there is.”
In October 2011, another doctor suggested that she should have an ultrasound.
“The next day they were sending me in for a biopsy, and the day after that they called me to let me know it was breast cancer.”
Because of her dense breast tissue, a condition found in 40 percent of women, Barcus’ tumor was undetected in the mammography.
Dense tissue appears white on a mammography X-ray, which makes a tumor difficult to see since that, too, shows up as a white spot.
In her introductory letter to Long, Barcus wrote, “It’s like finding a polar bear in a snow storm.”
Something, Barcus told Long in their face-to-face meeting, should be done to ensure that insurance companies cover a second test for women with dense breast tissue. The new bill also stipulates that women should be notified that they possess dense tissue.
“I was not aware that the insurance rule was not stepping up for women in this condition,” Long said. “I understand the condition, but I didn’t realize you couldn’t get further treatment or further analysis.”
Barcus is a native of Whitley County, born in the old county hospital, and a graduate of Churubusco High School. She’s a wife, a mom and a nurse who once worked the 3 a.m.-to-3 p.m. shift when Parkview Hospital Randallia was always abuzz – before the sprawling new complex was built off Dupont Road.
She relates the story of how she told the girls of her tumor.
“We had a neighbor who died of breast cancer,” Barcus said. “She was 52. And she died about six months before I was diagnosed, so my kids knew.
“When we sat them down and I said that I have a tumor, my oldest said, ‘You mean breast cancer?’ And my youngest came over and whispered in my ear, ‘Mommy, are you going to die?’ ”
There is, she was told, a 75 percent chance of her cancer returning.
She has done what she can do to fight not only her cancer, but fight for others. Then she talks about her skydiving experience and going to Vegas.