“It all started in April of 2013 when I went in for my yearly mammogram,” said Roberta Albany in a recent conversation; “I had been given a clean bill of health, I had purchased a new car and a new house, and I had been training for a half marathon with Black Girls Run, lifting weights on the side as well.” Everything seemed on the up for Roberta, until later that Fall when she noticed a lump under her armpit. “I was doing a self exam, which I always do even after I get a mammogram. I didn’t remember that lump being there in April.”
As a precaution, Roberta made an appointment with her OBGYN, who scheduled her for another mammogram as well as an ultrasound. “When the nurse took me into a room by myself, that’s when I knew something was wrong,” she recalled; “She asked me if I had a breast surgeon, and I looked at her like she was crazy. She said they only found the lump because of the ultrasound. Then she asked me how I knew to look under my arm for a lump rather than just my breast. I told her I just watched what the doctors do.”
Not only was Roberta in shock, she was frustrated that both her previous and subsequent mammogram failed in their inherent function as a safety mechanism. “The fact that the mammogram hadn’t picked up that lump annoyed me very much,” she vented; “When I went to see the breast surgeon I took my aunt with me who’s a registered nurse. I didn’t like her facial expression during that appointment.” Upon getting the results from a needle aspiration, the surgeon called Roberta at work during a Christmas luncheon and asked her if she could speak privately. “I went to my office and that’s when he told me it was breast cancer. I asked him how it was possible when just a few months earlier I had a clean mammogram?”
Mammograms had been a constant in Roberta’s life since she underwent a partial hysterectomy at the very young age of thirty, and she was disheartened by what she now viewed as their limitation. “They were pulling all my data, doing comparisons of the information to see what they had missed,” she explained; “For African American women, many of us have fibrocystic breasts, which means a denser tissue. Because of that, mammograms often are not enough. They told me I should have been getting an MRI or an ultrasound in addition, which I would have done back in April if I had known that was an option.”
Yet, because of her frequency and familiarity with mammograms, Roberta had detected the cancer through her own self checking. “I learned how to do my own monthly exams, so I know my breasts and I know what’s normal,” she explained; “Had I not learned to do that, I don’t know that I would have gone back in and caught the cancer at stage 2B.”
In February of 2014, Roberta had a mastectomy of the left breast and in April she started chemo. “I had estrogen positive cancer, so they finished off the hysterectomy and took out my ovaries and my fallopian tubes as well,” she said; “I was still trying to come to terms with the fact that I had breast cancer and the whirlwind that came with it, so I put myself in group therapy, which I think is important for your mental health when you have cancer.”
It was during one of the group therapy sessions that Roberta noticed something peculiar. “The hospital had different programs for patients or survivors to attend, but I noticed I was the only black woman attending,” she remembered; “So one day I went to my oncologist and I just asked her: ‘Do you guys pick which black people go to these events?’” Her doctor was taken aback by what she had asked, reiterating that the hospital’s programs were available to all patients, but Roberta was bothered. “When I was getting chemo and radiation, I would see other black women,” she explained; “So I asked another friend with stage four cancer if she noticed the same thing. She told me: black women with cancer want the cancer out of their bodies, but then we go back to putting our heads in the sand.”
Roberta knew this was an issue she wanted to address. “You’re telling me that in 2014 black people still don’t want to talk about cancer? That blew my mind,” she stated. At the same time, she knew from experiences within her own family that the stigma of cancer was an issue. “When I told my mom and my grandmother the news about my breast cancer, you would’ve thought I had smacked them,” she recalled. Knowing that black women die from breast cancer at a higher rate than white women, Roberta decided to get involved in patient education, becoming an advocate for an organization called Living Beyond Breast Cancer where she would bring the conversation out into the open.
“Today I tell people: let’s talk about cancer; let’s end the taboo,” she said with conviction; “I understand why we have a mistrust of the health system, but we’re either going to be part of the problem or part of the solution. I’m still the only black patient advocate at the hospital where I was treated. It makes no sense to me.” As a patient advocate, Roberta has traveled to conferences and events where she has spoken on behalf of the cancer community as a whole, but also the black cancer community. She continues to see the same issues across the board. “I realized that black people in general have disparities in all types of cancer, not just breast cancer, so why isn’t more money being spent for outreach?”
Wanting to do more, Roberta recently started her own organization called Cancer In The Know, focused on education and outreach in the black community. “My mission is to build community and provide empowerment for black cancer awareness,” she stated; “Newly diagnosed people are always being referred to me and I try to give them as much information as possible about organizations and what they do, and what resources they can take advantage of to help them with their journey.” The upcoming Cancer In The Know website will focus on advocacy opportunities and educational seminars as well.
While Roberta recognizes the importance of a general social awareness concerning cancer in the black community, she’s honest about the racial barriers preventing real change. “I exercise, eat well, and take my medications because the importance of doing so was explained to me,” she continued; “But it’s not always explained to black women by the gatekeepers of the medical field because they themselves are not black and don’t understand the need. We have to build trust between our communities, but you can’t send someone with blond hair and blue eyes to do it.”
It’s because of Roberta’s acute understanding of cancer in the black community, and her scrutiny of the systemic forces that allow the health disparities to continue, that her role as a patient advocate in conjunction with Ciitizen is so vital. “I heard about Ciitizen at a Susan G. Koman advocacy training, and to be honest I wasn’t quite sold on it at the time,” she said with a laugh: “I thought it was another one of these companies taking all my data and not giving me anything in return. Plus, I didn’t see any black people at Ciitizen.”
But today, as a Ciitizen user and advocate for the #blackdatamatters initiative, Roberta is very aware that her data as a black breast cancer patient can help drive research for others like her. “You’ve gotta keep fighting, not just for you but for the generations after you,” she explained; “You can’t ever stop. That’s the lesson. We don’t have the luxury of putting our heads in the sand. We can get the cancer out of our bodies, but the discomfort never ends as long as the disparities continue. You have to get comfortable being uncomfortable.”
To learn more about the #blackdatamatters initiative and how black women are leading the charge for better research regarding black breast cancer, visit http://www.ourblackdatamatters.com