As a celebrity chef and food stylist on the PBS series, America’s Test Kitchen, Elle Simone Scott is used to guiding viewers through recipes in a way that puts even the most hesitant home cook at ease. Elle’s willingness to be open about her personal experiences has led this former social worker to help others in various ways. As the founder and president of SheChef, Inc., a professional networking organization for women chefs of color, Elle shares her passion by mentoring, teaching resource building, business consultation/development and most importantly, advocacy. As a board member of the Ovarian Cancer Research Alliance, Elle is also honest about her experiences as an ovarian cancer survivor.
Elle’s journey with ovarian cancer began around six years ago when she was living in Brooklyn, NY, working as a freelance food stylist and a chef, which included work for the Food Network. At the time Elle had recently started a regimen of running as her primary source of exercise.
“I was feeling pain in my lower right abdomen,” Elle explained. “I also noticed that I would have extreme fatigue. I started running because I noticed my belly getting bigger. I noticed that I was toning up and I was definitely losing the weight but my belly wasn’t getting flat.”
At the time, Elle was 37 years old and still having regular menstrual cycles. She experienced pain during and after her periods, which eventually became pain all the time. Elle went to see a gynecologist about her symptoms while she was still living in New York City.
“Once I went in to the doctor to talk about my experiences, I felt she was very dismissive of it, because she always had painful menstrual cramps,” Elle said. “She was talking to me as a 16-year-old, as if I didn’t know anything.”
Elle noted that a test had revealed a “dot” on her right ovary at the time, but the newly installed automated medical record systems made it difficult for her to schedule new appointments. It wasn’t until Elle moved to Boston and started working for America’s Test Kitchen in June 2015 that she was able to start the process of finding new health care providers and follow up on her ongoing symptoms.
“At ATK we film for about a month and I was still having these pains, and was only managing it with the occasional Ibuprofen,” said Elle. “We would film from 6:00 a.m. to 6:00 p.m. for about three weeks. I’m a food stylist so I would be on my feet.”
In September 2016 Elle had an ultrasound that ultimately led to her ovarian cancer diagnosis. “I got a call from my doctor’s office; It was my OBGYN,” she recalled. “She said I have a cyst on my right ovary that had cancerous characteristics.”
Within three weeks Elle was referred to a gynecologic oncologist and had surgery to remove her right ovary at the Dana-Farber Cancer Center. She was diagnosed with Stage 1c grade 3 ovarian cancer, which was treated with six rounds of chemotherapy. The cancer remained in remission until a recurrence during the summer of 2020.
“I made it four years with no tumor to be seen. It grows slowly and it has not reached any other place in my body,” Elle explained. “During the pandemic I am working from home, so it was a little easier to go through treatment as the only thing I have to leave my house to do physically.”
As an advocate for other people with gynecologic cancers, Elle has advice on being one’s own advocate.
“If you don’t feel like the doctor that you are speaking to is answering your questions, get a 2nd, 3rd, 4th, 5th, 6th opinion,” she said. “When we are going through a health crisis it is scary. Have someone with you who can pick up the baton when you need them to pick up the baton for you. Most insurance companies have a social worker or case worker to do the work on your behalf. It’s a resource that’s out there that people don’t know about. If you go to a hospital, they do have a patient advocacy program—that should be your first stop at a hospital.”
Elle added that in the African American community there is a historical reference for distrust of the health care system, such as the Tuskegee experiment in the mid-20th century where African Americans were used for scientific research without knowledge or consent.
“There is a distrust. I feel like sometimes that same mindset still exists in the medical system to this day. Black people are thought to have higher pain index than other people. Pain is often not addressed seriously the first time around. Don’t be dismissive. It was very frustrating. I was not given the same experience than someone who was not a person of color…Hold your doctors accountable.”
After Elle’s initial diagnosis, she became a volunteer for the Massachusetts Ovarian Cancer Coalition and decided that it was important for her to share information about ovarian cancer.
“Receiving advocacy is also important. The recurrence is often different than the initial diagnosis,” she said. “This is a completely different experience. Having access to the social workers through my health insurance was nice to have when I needed it and it made me feel not so alone. Sometimes you cannot look through what you are going through…It is very important to have someone who knows just because (someone) looks well doesn’t mean she feels well.
“I felt like getting the word out for women of color. I would never see women of color at the events. Five years in, I’m still curious what happens to women of color who have cancer. It also makes me curious about survivors—are we not surviving? Are we not getting the attention and not being believed? It could be any or all of those things.”