HIGHGATE — Cindy Desorcie wasn’t surprised when she tested positive for the breast cancer gene (BRCA). She’d been expecting this since she was eight years old.
Cindy has a curly, purple pixie cut—“chemo curl,” she calls it. Until cancer, her hair was straight. She wears jingly bracelets, and her face lights up when talking about her family; especially her mom, Judy, and her sister, Jennifer.
“I’ve always done things so much like my mom. I guess I always expected someday I would have this,” said Cindy. In 1981, her mom was diagnosed with breast cancer.
According to Cindy, you didn’t talk about cancer back then. “Because if you talked about cancer you were talking about death. You certainly didn’t talk about boobs in Franklin County,” she said laughing. “And you definitely didn’t put yourself out there.”
Cindy’s family runs a corner store in Highgate, where her dad once worked as a teenager. “If you go through Highgate and you blink, you’ll miss it,” she said. They’ve born and raised Vermonters. The farthest she’s moved away from her family is Colchester.
A lot has changed in the cancer world since the 80s, from testing to treatment. Cindy said that her mom watched many of her friends die because they didn’t take the radical steps of a mastectomy. Finding support systems outside of her family also proved difficult. Now Cindy thinks the conversation about breast cancer has opened up and much of the shame has fallen away. Radical surgery is more accepted and developments in the genetic testing field have aided in early diagnosis, improving overall prognosis.
Genetic testing and hyper vigilance proved to be Cindy’s saving grace. But she said there is still work to be done.
In 2017, decades after Cindy’s mom was first diagnosed, she decided to get genetic testing. At first, Cindy and her sister, Jennifer, chose not to get tested. Was it because they were afraid? “Of course,” said Cindy. “But once we knew that mom had it, we had to do something about it. It’s like getting an opportunity to have extra power and saying, ‘nah, I’m good.’”
When their mom tested positive, the sisters moved forward with their own testing. Jennifer tested negative for the BRCA gene but Cindy tested positive, sort of as she expected.
What she didn’t expect was that despite testing negative, her sister would later find a lump.
“I couldn’t understand because she got the negative test. It shouldn’t be her,” she said.
Regular mammograms are usually once a year, but if someone tests positive for the BRCA gene, like Cindy, testing occurs every six months. Due to the strong family history of cancer, Jennifer’s doctor was hypersensitive to abnormalities even though she had tested negative. In November of 2017, Jennifer was diagnosed with estrogen receptor (ER) positive breast cancer.
There are four main groups used to categorize breast cancer: luminal A, luminal B, triple-negative, and HER2 positive. ER positive breast cancer falls under group one, luminal A, meaning that Jennifer’s tumor was fueled by estrogen and progesterone hormones in the body and could be treated with surgery, chemotherapy, and hormone therapy. Luminal B includes tumors that are ER positive, PR negative, and HER2 positive. HER2 is a growth factor protein which, in excess, can fuel cancer cells.
Cindy’s type of breast cancer—triple negative—includes tumors that are negative for ER, PR, and HER2. Since typical treatments like hormone therapy or drugs target the first three groups of breast cancer, triple negative is often the most difficult type to treat.
“If I didn’t [do genetic testing] and waited till next November for my routine test, I would have been fighting for my life, not just trying to get through it,” said Cindy.
Jennifer immediately moved forward with a lumpectomy to remove the mass. Then in January of 2018, she decided to schedule a mastectomy as well. “She wanted to take control,” Cindy recalled. She describes her sister as the kind of person who jumps out of planes and climbs mountains. “The tallest peak. No question,” she said.
Cindy found a mass soon after Jennifer and, in May 2018, followed her younger sister in getting a lumpectomy. Next came chemo.
“There’s nothing fun about chemo. Nothing glamorous. It sucks. It sucks,” said Cindy. While she later scheduled a mastectomy to ensure that the cancer wouldn’t recur, Cindy underwent four rounds of chemotherapy as an “insurance policy,” according to her. But everything about chemo—how it tired her out, how it made everything taste terrible, how it made her hair fall out, how it changed her body—was terrifying. She compared the process to injecting her body with poison or an atomic bomb.
“I had a lot of nights that I cried. A lot of days that I cried. But if you don’t you’re not being real to yourself. It’s like sticking your head in the sand,” she continued. With her flirty purple hair, jangly bracelets, and easy sense of humor, it is hard to picture Cindy as broken down as she described. But for her, the positivity ebbed and flowed.
“A lot of women everyday lose their fight and it’s not because they weren’t positive,” she said. Her fight became about not pretending to not see what was happening, pasting a smile on her face, but about claiming her disease and handling it; depending on her faith to carry her through.
“Pretending you can’t see what’s going on--you can’t ever fix it,” she said. “It goes back to genetic testing. I know people who don’t want to know. That’s fine, that’s your choice. But you can’t fight what you don’t know. You put on a seatbelt when you get into a car so you don’t fly out if you get into an accident. Why wouldn’t you get ‘em squeezed?”
Over a year later, she and her sister are both cancer free.
In June, Cindy, her mom, and her sister raised money for Relay For Life together, a cancer charity walk—their team name is, “Triple D.” They raised about $8,900 and won the award for, “Most Spirited Team.”
By talking about her own story, Cindy hopes to offer solidarity to other people with breast cancer and to break down barriers preventing people from seeking help.
“We just need to be super cognizant, we need to fight against health care issues that don’t allow us to get reasonable testing done, and we need to talk about health care being something that doesn’t mean waiting until you’re not healthy,” said Cindy. “These are conversations as a society we need to have. It shouldn’t be death care. That’s what it feels like. We’re waiting for something to happen but it should be about taking care of ourselves before that.”