overwhelmed by their diagnosis, which is normal. I think sharing the information I had actually did help many people.”
Combatting racial disparities
In sharing this information and speaking with other women battling breast cancer, she began to notice a heartbreaking reality: Black women were being left out of outreach, education, research and treatment.
Black women are dying of breast cancer at a significantly higher rate than White women, she notes.
“That was shocking to me,” Rivers adds.
Jamil says the most violent aspect of cancer is the unequal medical system and unjust racial health disparities that prohibit treatment and worsen cancer outcomes for many Black women. This is the most violent aspect of cancer because of Black women’s vulnerability to “a system with unconscious bias and structural racism,” she shares.
Determined to change this, Rivers adapted her checklist into a curriculum for women living with cancer and into a training program for healthcare providers.
She also collaborated with Living Beyond Breast Cancer, the American Cancer Society and Susan G. Komen on projects utilizing the curriculum and training she developed. This was a great feat, but Rivers knew there was still more that needed to be done.
“All of those programs were really successful, but they were one-and-done projects. I felt like the need is so great, maybe we should do this every day,” she says.
A little over a year after she was diagnosed, she founded the Chrysalis Initiative. The Chrysalis Initiative is a “resource [that] provides Black women (and other disparate groups) with the tools to recognize and address racism in their cancer care, including 1:1 coaching, accessing resources and a patient community, and viewing a patient-curated provider directory—all with the purpose of erasing the line of inequality in breast cancer care.”
“We have this opportunity for people to see that what’s happening isn’t right,” Rivers adds. “I want to help everyone look critically at the way we interface with people of color in care and inspire a transformation.”
“I never believed that cancer is a gift,” but it’s a crucial “part of my story,” Rivers concludes. “I’m still here. I’m still breathing. So I’m going to live my life and do what I can with this.”
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Seeing a doctor for metastatic breast cancer
Around 170,000 people in the United States are living with metastatic breast cancer. Fewer than 1 in 3 women who are diagnosed with early-stage breast cancer later develop metastatic breast cancer, according to the Cleveland Clinic.
About 6% of women and 9% of men have metastatic breast cancer when they’re first diagnosed with breast cancer.
Your risk of developing metastatic breast cancer depends on various features of the cancer including:
- Tumor characteristics (type of cancer cells).
- Stage at your first diagnosis.
- Treatment(s) received.
Cancer that is diagnosed and treated at an earlier stage has a better outlook. Talk to your doctor about when you should start having regular breast exams and mammograms.