After struggling with a cough and a pinch in her side that she couldn’t shake — despite rounds of antibiotics — Jamil Rivers asked her doctor in March 2018 to order a chest scan and an ultrasound. She thought she might have strained something while moving to her new house in late 2017. Worst case, Jamil figured, the underlying cause could be her appendix or gallbladder, since issues with both run in her family. Instead Jamil was stunned to learn she had a shadow on one of her lungs and lesions on her liver.
“My brain immediately went back to a miscarriage I had two years earlier and changes I had noticed at that time in my right breast,” she says. “I was afraid it could be breast cancer, so right away I asked for a mammogram.”
Life after being diagnosed with stage 4 metastatic breast cancer
Results from the mammogram — and a liver biopsy that immediately followed it — were more frightening than Jamil, then just 39, ever would have imagined. With stage 4 de novo metastatic breast cancer (MBC), she was among the 6% to 10% of women who are first diagnosed with stage 4 “de novo metastatic breast cancer” (MBC), meaning it had metastasized by the time of diagnosis.
“I was just devastated,” Jamil says. “I thought I was terminal, and worried about my young kids and how long I’d be around.”
To make matters worse, Jamil — a mother of three and the family’s sole breadwinner after her husband was disabled by kidney and colon cancers and severe liver disease — had recently started a new job. She didn’t know if she was eligible for time off for chemotherapy under the U.S. Family and Medical Leave Act and was nervous about even asking. “The people at work didn’t really know me all that well yet, and I just wanted to keep my benefits and keep my family stable,” she says. “So I didn’t tell anyone I was sick.”
Finding a way to help other women with a similar diagnosis
Jamil did jump into self-education mode, trying to absorb as much information as possible about MBC. She also went for a second opinion about her condition and treatment options. But with breast cancer cells spreading throughout her body, chemotherapy really was the only choice.
As a Black woman, Jamil was well aware of disparities in access to quality care and treatment that lead to more women of color being diagnosed with advanced-stage breast cancer than their white peers. The incidence rate of breast cancer before age 45 is higher among Black women than white women, whereas between the ages of 60 and 84, breast cancer incidence is strikingly higher in white women than in Black women. Still, Black women are more likely to die from breast cancer at every age. Yet Jamil noticed time and again during treatment that other women of color undergoing chemotherapy with her had few, if any, of the adverse social determinants of health (e.g., less healthcare access and quality, economic instability, lack of education) frequently blamed for poorer health outcomes.
Jamil founds a nonprofit to help other breast cancer patients
It wasn’t long before women who were traditionally underrepresented, underserved, or from minority backgrounds started talking to Jamil, who appeared well informed about her cancer and effectively managing her work-life balance. They wanted to know her secret. That led to her founding the Chrysalis Initiative (TCI), a nonprofit organization dedicated to advancing legislative policy, medical research, and individualized support to better meet the needs of breast cancer patients, and particularly women of color with MBC. To date, the Chrysalis Initiative has supported more than 20,000 cancer “thrivers” on their treatment journeys, according to TCI’s BC Navi platform.
“Cancer treatment is exhausting, so it can be a lot to go chasing things down,” Jamil says. “Our job is to help patients identify and secure the resources they need and are entitled to.”
The Chrysalis Initiative allies with GE HealthCare
That’s why supporters like GE HealthCare that help the Chrysalis Initiative spread its message are invaluable, Jamil says. “You can’t really fix a problem unless you know about it, so reaching and educating patients, hospitals, and providers is just so, so important,” she says. “Having an organization like GE HealthCare backing us up and amplifying our work is vital to our success.”
“Uniting GE HealthCare’s legacy of pioneering innovation in molecular imaging with an unwavering commitment to advancing healthcare equity by joining forces with the Chrysalis Initiative is not just logical, but a beacon of progress,” says Deborah Walter, advocacy engagement leader at GE HealthCare Pharmaceutical Diagnostics. Working with patient advocacy groups is critical to the successful launch of any new technology or precision diagnostic agent, because those groups are recognized and trusted communities for peer-to-peer interactions designed to spur specific actions by patients. They can raise awareness through their own independent education and support efforts.
“In our pursuit of excellence in healthcare, we recognize that diversity is the cornerstone of progress,” Walter says. “Embracing the multitude of voices, perspectives, and experiences within our community is integral to our mission. Collaborating with organizations like TCI is a natural step towards enhancing the lives of those we serve.”
Jamil underwent molecular imaging and CT scans during treatment and continues to have regular follow-up scans to this day. In addition to shaving her head because of her chemotherapy treatment, she made the difficult decision to remove her ovaries as a preventive measure against other cancers. But she has no regrets. She’s officially cancer-free and focused on her future.
“My main goals now are to watch my boys — and the Chrysalis Initiative — keep growing,” she says.
If you’d like to learn more about the Chrysalis Initiative, you can visit their website at thechrysalisinitiative.org.
