When Chilli Amar’s mother was diagnosed with ovarian cancer at age 54, her doctors urged Amar and her sister to be tested for BRCA2, the gene defect associated with a high risk of developing the same cancer. The radio personality, who co-hosts the “Loo & Chilli” weekday morning show on WASH (97.1 FM), put off the test.
But after her mother’s death five years later, in 2009, Amar decided she was ready to face the results.
“My mother wasn’t able to live her life to the fullest, because she was taken away too soon,” said Amar, who lives in Northern Virginia. “In order to honor her, I decided I’m going to live enough for both of us. Not just in years, but in the quality of life that I have.”
After testing revealed she had the BRCA2 gene, Amar and her husband, Don, decided to have a child as soon as possible, knowing elective surgery to remove her ovaries would likely follow. Her son, Donato, was born in October 2013.
Today, during National Ovarian Cancer Awareness Month, Amar, 43, is speaking openly about the choice to have elective surgery to remove her ovaries (oophorectomy) or ovaries and uterus (hysterectomy) to prevent ovarian cancer.
“It’s scary to think about surgery, but at the same time I’ve got a 2-year-old and I want to be around when he’s much older — decades and decades,” Amar said of her impending procedure. “It would eliminate my risk almost completely. Here’s what I could do today to eliminate that. Why wouldn’t I?”
Initially, Amar was leery of the surgery, fearing the recovery time and side effects from a hysterectomy. Her husband , whom she describes as “the greatest support ever,” had no such qualms. “He said, ‘Will it help you live longer? Then let’s do it,’ ” Amar said.
After consulting with several doctors and reading about her options, Amar said she was reassured to learn there are minimally invasive procedures that include short recovery times, and medications to help with side effects.
Amar’s doctor, Paul Mackoul of the Center for Innovative GYN Care in Reston, said a BRCA2 gene abnormality is associated with a 25 to 50 percent or higher risk of developing ovarian cancer, as well as a higher breast cancer risk. Mackoul said many women are not given sufficient information from primary care providers on choices about their personal health.
“A lot of women are very nervous about the word hysterectomy,” Mackoul said. “And rightfully so — if you go online and read about hysterectomy, you’ll read some awful things — a lot of people hear that word and just turn south — they decided they’re not going to do it.”
Mackoul said most women consult only with ob-gyns rather than going to a specialist, such as a gynecological oncologist, who may be able to suggest a wider range of available minimally invasive options.
“What we’ve done is develop techniques that allow people to just get two small quarter-inch incisions, so they can get hysterectomies done and they are able to go home that day and go back to work within a week,” Mackoul said.
Amar said many women do not take the time to focus on their own health because they are so busy taking care of others — but that is all the more reason for women to put health at the top of their to-do list.
“Get as educated as you can about whatever the issue might be for you: Heart disease. Diabetes. Cancer. Be your own advocate,” Amar said. “Ask questions of family members: Hey, what did uncle so-and-so die from? What about Mom? It’s a map to your medical history.
“I don’t think enough of us ask those questions — we don’t want to probe, we’re scared,” she said. “Doctors won’t know you have a history unless you share it with them. Read and read and read some more. The more I know, the less anxious I feel.”
Stressing that each woman should make decisions that are right for her, Amar said she will “absolutely” share her own journey with her listeners.
“I guess because of the line of work I’m in, I’ve always been comfortable talking about my real life,” she said. “There’s a part of me that wants to shout it to the whole world. I share and share because I want there to be open dialogue. I just don’t think we talk about it enough, and we need to.”
Lanyi is a freelance writer.