Karen Eubanks Jackson, Founder/CEO of Sisters Network Inc, and a 26-year, 4-time breast cancer survivor, is recognized nationally as a leader in the African American breast cancer movement.
Karen Eubanks Jackson founded Sisters Network in 1994 to connect with other African American breast cancer survivors. At least that was the initial reason for its founding. As she learned more about the impact of the disease in the African American community, she found a staggering breast cancer mortality rate, limited culturally sensitive materials, and a general lack of support and sisterhood for those diagnosed. In founding Sisters Network, she endeavored to make a difference on a national level. She wanted to break through the silence and shame of breast cancer that immobilize many African American women and ultimately impede early detection and affect survival rates.
Under her leadership, Sisters Network has developed numerous national breast health outreach initiatives, including the first national African American Breast Cancer Conference, the annual Stop the Silence African American Breast Cancer 5K Walk/ Run, and the Breast Cancer Assistance Program.
To this day, Sisters Network is the only national African American breast cancer survivorship organization with more than 40 chapters throughout the country.
I had the great pleasure of speaking with Ms Jackson about her experience as an African American breast cancer survivor, the impact of Sisters Network, and her advice to young women in her community about breast health. In speaking with her, it became clear that Ms Jackson believes strongly in the creed of Sisters Network: In unity there is strength, in strength there is power, in power there is change. What follows is our thoughtful exchange.
How was Sisters Network established?
I was diagnosed with stage II breast cancer in 1993. I was aware that I had a family history, but I didn’t know very much about the disease or what to expect as a survivor. I felt the need to speak with other survivors who looked like me. I wanted to join a national organization for African American women, but, to my surprise, there was nothing to join!
The lack of a national organization for African American survivors was a concern for me, and I believed there was a universal need for sisterhood among African American women.
I jumped right in, not knowing what to expect; I just knew that it was the missing link for women across the country. We needed to share our experiences to help each other and our community. So, in 1994, I founded Sisters Network.
How would you describe your experience as an African American breast cancer survivor in 1993?
In 1993, African American women felt that they were being blamed for not seeking medical care early enough. Because African American women are more likely to have triple-negative breast cancer, which is aggressive, we were being diagnosed with stage III/IV. There was backlash from the medical community about what the African American community was not doing—namely screening. But at that time, the African American community didn’t want to speak the word “cancer,” let alone talk about the disease.
For many women diagnosed with triple negative, there was a feeling of “What’s the point? If I have this type of cancer, there is no cure.” There was a general feeling of hopelessness with this diagnosis.
When I started Sisters Network, the first thing I wanted to do was to change the narrative around breast cancer as a death sentence. And to let people know that there are different types of breast cancer— not everyone is triple negative. And even if you have triple-negative disease, there is hope. We really had to educate women about the different types of breast cancer.
Can you share a Sisters Network success story?
Yes, one immediately comes to mind. I’ll preface by saying, this was an unusual circumstance. A woman approached me who had heard of Sisters Network. She was scared, so I went with her to the doctor, who confirmed that she did have cancer. Although she had her own accounting business, she didn’t have health insurance. The reason this case is unusual, is that I just happened to have an opportunity to go on a radio program to talk about Sisters Network, and I shared this woman’s story. We were attempting to raise money to help her cover the cost of treatment. Shockingly, someone contacted us to pay for her treatment—an anonymous donor.
This was a wonderful but unusual story. Really, every day we have success stories. We are out there talking to women in our community about breast health, helping the newly diagnosed, and providing support to long-term survivors. We’re providing the education that they need and connecting them to resources.
It’s important for women in our community to learn about available and appropriate resources and how to access them within their communities. Some people may think that if they get sick, they can go to the local hospital and they can fix you. But not all hospitals are equipped to handle cancer. Not all cities have a cancer center. We believe that there are people within the African American community who have breast cancer and insurance, yet don’t know how to go about finding the best care available. You should be seen by a doctor who specializes in your type of cancer. Anytime we can ensure one more woman is aware of the best resources and care available to her, well, that is a success.
We’d like to learn about the Sisters Network financial assistance program
Yes, the Breast Cancer Assistance Program. Sisters Network strives to provide financial support to African American breast cancer survivors in need of assistance with copays, childcare, or transportation to treatment appointments. The financial burden of cancer is just one more thing to deal with when you’re undergoing treatment for cancer, so we’re doing our best to help alleviate that burden.
What advice would you give to young African American women regarding breast health?
Prioritize your health by knowing your health history. Open that discussion with your family. I understand that sometimes there is a stigma around talking about cancer, but I want to tell you that information is power. Learn your family history and understand what it means for you. If there is a history of breast cancer in your family, it doesn’t necessarily mean you will have breast cancer, but understanding your risks, taking the right precautions, and talking about it with others will help empower you.
What would you say to a newly diagnosed woman?
There is hope. Get over the initial shock and fear of the words “breast cancer” and get on with living. I personally know many long-term survivors. I am a 26-year survivor; one of our members is a 15-year triple- negative survivor. There is hope.
I understand you are in the process of publishing a book?
Yes! I am very excited about it! The title is In the Company of My Sisters: My Story, My Truth, and it will be released this year at the Sisters Network Stop the Silence Walk on April 25 in Houston, Texas. The book recounts my experience as a breast cancer survivor and as an advocate for others.