Tallulah Anderson comes from a very large family; one that happens to be genetically predisposed to breast cancer. “I have seven brothers and three sisters,” she said during a recent conversation; “and both my mom and dad had breast cancer.”
Tallulah’s father and brother passed away from breast cancer, as did her mother, and her oldest sister is a forty year breast cancer survivor. Another sister was recently diagnosed with breast cancer, as was her daugher—Tallulah’s niece. Tallulah herself was first diagnosed in 1999 at the age of 37.
“They recommended that I get genetically tested right away,” she added; “I have another brother who was diagnosed with stage zero last year. The genetic testing shows that our BRCA2 gene isn’t just about breast cancer, it can also show up as prostate cancer, and I have another brother who has some complications with that.”
Given the prevalence of breast cancer within her family, one might expect inspection and prevention to be at the forefront of Tallulah’s domestic conversations, but that hasn’t always been the case. “My family isn’t always proactive about this stuff,” she lamented; “My brother wasn’t thrilled to be in an office with a bunch of women all wearing pink gowns, and he didn’t want to go back for radiation even after they found a lump. Even with my father dying and my other brother, he was still reluctant.”
As both a patient and an advocate for breast cancer awareness, Tallulah is more than aware of the misgivings within the African-American community when it comes to health care and the medical industry as a whole. “You really have to build trust,” she explained; “The communities I work in are primarily African-American and they’ve never heard of people with metastatic breast cancer living more than a year. They’ve never heard of male breast cancer. They don’t know all of the new treatments. So I have to come up with creative ways to get the information out.”
Back in 2015, after her second diagnosis, Tallulah started an advocacy group in Maryland called 2 for 2 Boobs, dedicated to educating patients and caregivers about breast cancer awareness. Rather than general fundraisers and seminars, she holds more inclusive events designed to bolster turnout. “I produced a play last year called Shades of Pink: Our Voices…Our Stories featuring breast cancer survivors telling their stories,” she recalled; “I did another event called Line Dance For a Cause, where we had people line dancing and sharing their experiences, as well as doctors talking about fitness, diet, and overall health. I’ve done everything from yoga in pink, to cooking in pink. You’re gonna cook, but in between the dishes you’re gonna learn about breast cancer.”
Whether it’s her own family or people within her community, Tallulah understands the social obstacles that have predisposed African-Americans to health disparities, especially as they pertain to breast cancer. “There’s still a stigma around getting tested,” she explained; “I have people tell me: they just want to experiment on us. Others say they don’t want to know if they have cancer, so why even open that door? But once they hear my story, and stories from others, they tend to change their mind. Once they realize that getting tested cannot only save themselves but also others in their family, they tend to become more open minded.”
Genetic testing has not only helped Tallulah manage her care as a breast cancer patient, it’s also helping to inform her sister’s care as well as her niece’s. “When my sister in Florida was diagnosed, her doctors actually asked me to send them my BRCA test,” she remembered; “My niece is in San Diego, so I’m trying to send them that info over the internet, but now I’m hoping to do it with my Ciitizen profile.”
As someone who believes that better education leads to better results, Tallulah believes organizing all of her health in one place is a big step forward—not just for herself, but for her family and future family members. “I’ve been trying to build my family tree of cancer, so I want all that data,” she explained; “We’re all genetically connected—we have nieces and nephews, and more family members coming. If there’s a way for someone like me who has a genetic mutation to be part of improving my family’s care, that’s important. To have control over that data is a really good thing.”
As a three-time survivor, Tallulah understands the difficulties involved for patients in organizing and controlling their health information. “I’ve had a mastectomy of my left breast, and I’ve had my ovaries and fallopian tubes removed because my type of cancer is fueled by estrogen,” she recounted; “I’ve had care at two different hospitals, but my original doctor retired, so when I was looking for a new doctor it was over an hour a way.”
In order to update her new care team with her complete health history, Tallulah had to drive hours back and forth to collect her old imaging and records. “I had to pick up a CD-ROM one time and drive it over to my other doctor who couldn’t even look at it,” she recalled; “Their EHRs weren’t compatible and it was a headache, so I like the idea of having everything digital in one place with Ciitizen where I can control who has access to it.”
For Tallulah, progress in her community begins with the information. “We’ve been trying to get more African-American men to get genetically tested and I’ve been trying to sign up my brothers to do that as well,” she said; “I used to work for BET and I had the opportunity to meet Richard Roundtree who is a male breast cancer survivor. Now you have Beyonce’s dad who was diagnosed last year. More people in our community are becoming aware of male breast cancer, so for me it’s about education.”
However, given her family history and the tragedy she’s already experienced as a result, Tallulah’s push for better awareness through data is far more personal. “I have a son who I want to get genetic testing when he turns thirty,” she stated; “Breast cancer runs in both the males and females within my family—the gene was dominant from my father’s side—so I want him to know the risks. Several of my dad’s first cousins died from ovarian cancer, which also is connected to the BRCA2 Gene. Two of my sisters had the same BRCA gene cancer, but my other sister does not, so knowing exactly what you’re up against is the key to fighting your disease.”
Looking to find out more about your genetic data and how your family history may affect your cancer treatment? Join Tallulah at Ciitizen and get your complete health data organized and under your control.