African-American Women With Breast Cancer Need to Know About Patient Advocate Bridgette Hempsteadby Pamela Kaufman Health Writer
African-American and women of color facing down a breast cancer diagnosis have an incredible ally: Bridgette Hempstead, founder of the Seattle-based support organization Cierra Sisters. Hempstead, who has spent decades working to increase awareness of breast cancer risk in underserved communities, talked to HealthCentral by phone about fighting myths, training women to become their own best advocates, and confronting her own metastatic breast cancer diagnosis.
HealthCentral (HC): Tell me how you came to found Cierra Sisters.
Bridgette Hempstead: It goes back 21 years. I was sitting on the couch one day and it was like the voice of the Lord said, “Go get a mammogram and do it now.” I really didn’t know anything about breast cancer but I went to see my doctor. She gave me a laundry list of reasons why I didn’t need to get a mammogram. The last reason was, “You are African-American. It’s not something you need to worry about because it really doesn’t affect your community.”
But I demanded a mammogram and she begrudgingly gave me the referral. I was diagnosed with breast cancer on my 35th birthday.
After that, I went on a huge quest to find true information to share with my community. As doctors started hearing about me, they began sending women to me to counsel about their diagnosis. As the group got bigger, we started meeting at Starbucks to talk about what they were going through, how they could handle it, how to navigate the health care system, and what to ask their doctors. That’s basically how Cierra Sisters started.
HC: Breast-cancer death rates are 42 percent higher for African-American women than white women. Why such an enormous gap?
Hempstead: You see all the racism in the news, and in health care, we’re dealing with the same kinds of racial disparities and prejudices. You’ve got some doctors telling African-American women, “No, it can’t be breast cancer.” Then, months later, or a year later, they’re saying, “Oh, my God, you have stage IV cancer. How did this happen?” You have a large number of African-American women who are not even offered clinical trials if they are stage III or IV. And that’s unfair.
I can share my own story. Fast forward to 18 years after my initial diagnosis. They said my disease would never come back. Well, it did. It came back, and it came back in my lungs and my liver.
I was in a different health care system then. What that system told me was, “We don’t do PET scans on people like you.” Meaning that my life was not valuable enough. When I asked to be in a clinical trial, I was refused. I said, “How do you have the right to tell me that I can’t go in a clinical trial that I qualify for?”
I got out of that system; I’m with Seattle Cancer Care Alliance now. Julie Gralow, M.D., is an incredible advocate, an incredible oncologist. She makes sure I get the same treatment as anyone else.
HC: Can you talk about the emotional challenges you face living with metastatic cancer?
Hempstead: The biggest was sharing the news with my three grown daughters: “I’m metastatic now. There’s no cure, and I will be on treatment the rest of my life, even if I become NED, which is ‘no evidence of disease.’”
That was hard, but what I also shared with them was that I’m not afraid of death. What our society doesn’t realize is that everyone is going to leave one day. We don’t know how we’re going to leave, but one day we will leave.
So my message to my daughters was, live your best life now and value our community. Value our family. Value through giving what’s in your heart, in the capacity that you can give. Number one, be true to yourself and love yourself most. That’s not a selfish thing, because if I don’t love myself then I will have nothing to give to you.
HC: How do you wish people would react when you tell them you have metastatic breast cancer?
Hempstead: I think I would like for them to say, “I stand with you.” Sometimes you’ll have good days; sometimes you’ll have bad days. Knowing that someone will stand with you no matter what, and hasn’t planned your obituary at that moment, is a very powerful unity.
HC: Can you talk about the work you’re doing to help women teach each other?
Hempstead: It’s a program called CEPS — Cierra Empowerment Partnership. It’s a breast health education program for African-American women and also women of color that trains ordinary people who have the heart to want to talk to their community. We train them in evidenced-based information, not myths. They learn how to navigate the health care system — how to empower themselves, how to advocate for themselves, and how to identify the available resources, whether they’re down south or in California.
[Interview has been condensed and edited.]