Ontisar Freelain is a breast cancer survivor who is committed to creating conversations that do more than pin a pink ribbon on a lapel.
Through “Beyond a Mammogram” a free speaker’s bureau presentation she founded with her husband, Rasul Freelain, an Oak Park police officer, the couple share her heartfelt journey of surviving breast cancer with audiences at schools, community groups and churches, and recently at Oak Park and River Forest High School. Ontisar’s story is that she is a survivor of breast cancer because she became her best advocate, demanding that more tests be done, even though doctors had given her the all clear when the lumps were getting bigger.
Being a woman whose grandmother had suffered through and died of breast cancer, Freelain also knew she was in the category of women who are at high risk of developing cancer.
“Beyond a Mammogram is an organization that wants to keep the matter of personal breast health at the forefront of people’s minds,” Ontisar says. “Those who are in the high-risk category should think about more than just getting an annual screening mammogram, especially if they feel something is wrong.”
On Saturday, Sept. 27, the couple from the Beverly community in Chicago, is spearheading an inaugural effort to raise $1 million toward cancer research with a Beyond A Mammogram 5 K Walk-A-Thon, in Hyde Park. Cost is $35 (it includes a T-shirt), and steps off at 8 a.m. at Harold Washington Park, 5200 S. Hyde Park Blvd.
All proceeds, they say, will be donated to the breast cancer research of Dr. Olufunmilayo Olopade, an oncologist at the University of Chicago who is “working to develop cures for the most aggressive types of breast cancers that do not currently have treatments,” Ontisar says.
“Being aware of breast cancer is very important at a certain time, but there seems to be a spot between being aware and taking action,” said Rasul Freelain. “There are pink ribbons everywhere, and there are bumper stickers and custom license plates in Illinois. But once you are aware, what is the next thing? That is what we are focusing on with young people. What can anyone do to move beyond being aware of breast cancer; we want to save people’s lives.”
Living in Fear
In the fall of 2011, at age 39, Ontisar had her first mammogram, afterwards receiving a letter from the breast care center requesting a return visit.
“It read that there is a suspicious area in your right breast and basically they said they wanted to take a second look at it,” says the working mother of three. She then did a self-exam, which confirmed the news. “That was gut wrenching, and I felt actual terror.”
Three weeks later Ontisar scheduled a diagnostic mammogram, and during the test was told that the mammogram alone could catch whatever was going on, which now she understands is not true, but then out of fear decided not to ask more questions.
“At the time I wanted to believe her, because anything else would be so unsettling,” she said, describing how for too many months her doctors didn’t suggest she take further measures — have an MRI, ultrasound, or biopsy — and she didn’t pursue the doctor taking those measures, as she never sounded an alarm, even though Ontisar suspected the lump in her breast was getting bigger, not better.
“It was like I was playing Russian roulette with my own breast health,” she said, “…and finally at the start of my second annual mammogram I brought the lumps to the attention of the technician and requested an ultrasound and biopsy, because at this point, one lump had gone into two lumps. Still, the mammogram did not pick up the lumpy mass in the upper part of my right breast. It cleared me.”
However, it did pick up the same benign lymph node that was cleared the previous year (which was in the lower quadrant of the right breast), confirming to her that having a mammogram isn’t an end-all, especially when a woman is doing self-exams and is aware of changes in her breast tissue.
“Before my biopsy was performed, the radiologist offered me the option of putting a marker on the mass, and waiting another six months or being biopsied,” she said.
The call diagnosing her with stage two breast cancer came the day after Christmas.
“I was given the option to have a single or double mastectomy, but because of my familial history, I decided to have both breasts removed,” says Freelain.
It was during a chemo session, with her husband at her side, that their philanthropic organization, Beyond a Mammogram was born.
“We want to be able to get this thing going right away, to start conversations, in particular among teens and young adults, that will save lives,” says Rasul Freelain. “To request that we speak at your event, to discuss a corporate alliance, or to volunteer for the walk-a-thon, please contact us.”
To request a speaker at your event or to discuss corporate alliances for matching gifts, contact: info@beyondamammogram.com