News Blog

Emerging from the Chrysalis: Patient Advocate Jamil Rivers Leads Women of Color to Better Breast Cancer Care

By Scott Harris

Jamil Rivers
Jamil Rivers

It’s a pretty standard fact of domestic life. If one person in the family catches a cold, there’s a pretty good chance everyone else will catch it too.

That’s the way it was for the Rivers household back in the winter of 2017 in the Philadelphia suburb of Drexel Hill. A seemingly ordinary bug made its way through the family: first Jamil Rivers, followed by her husband Ricky, and their three sons, who had just started school in Drexel Hill that fall.

Below the surface, though, something was very much out of the ordinary. When Rivers caught the cold, it didn’t go away.

“I just kept coughing and hacking,” she recalled. “I went to my primary doctor, who prescribed me an antibiotic initially.”

Weeks went by with no change; other treatments were no help. Then Rivers began to feel a strange pinching sensation in her side.

“I asked my doctor for a chest scan and an ultrasound of my abdomen, because the pain in my side was making me a little concerned,” Rivers recalled.

When the test results came back, they were grim. Her liver was covered in lesions. There was a small growth in her lungs. Upon hearing the news, Rivers was instantly reminded of recent changes she’d experienced in her breasts — changes her OB/GYN had assured her were nothing serious.

But subsequent tests confirmed Rivers’ fears: she had breast cancer, and it was metastatic, meaning it had spread beyond its place of origin.

Hayley Knollman
Hayley Knollman, MD

“Once cancer has metastasized, it is considered incurable but treatable,” said Hayley Knollman, MD, an oncologist with Penn Medicine’s Rena Rowan Breast Center in the Abramson Cancer Center, who treated Rivers after the diagnosis. “She was treated up front with chemotherapy because her liver function was abnormal. The cancer had completely infiltrated her liver.”

For 10 months, Rivers left work early every Friday to attend chemotherapy sessions. Rivers later transitioned to more targeted and less toxic therapies, including estrogen blockers. Today, with her cancer under control thanks to regular medication and doctor visits, Rivers, now 44, remains a full-time working mom — and then some.

Drawing on her own experiences and her time caring for her husband during his own prior battle with cancer, Rivers was relatively well-versed in oncology care, and the challenges it can present. And she continued learning more.

“From day one, she wanted to know what we were going to do,” Knollman recalled. “She was open to recommendations and asked a lot of questions.”

Jamil Rivers and her two sons

During her time in treatment, Rivers, who is Black, also discovered that many women, particularly Black women and other women of color, were in urgent need of guidance. She shared her knowledge; they shared their own. Rivers saw a need so acute that she decided to commit herself to patient advocacy, ultimately founding The Chrysalis Initiative, which offers patient coaching, training for care providers, and other resources to reduce disparities in breast cancer outcomes.

“Sometimes Black women are not offered the highest standard of care,” Rivers said. “And sometimes it’s because of avoidable problems like incomplete workups. So we’re trying to help them understand what to anticipate, what questions to ask, and how to be advocates for themselves.”

The Chrysalis Initiative currently helps about 10,000 patients. A total of 95 percent of women who receive coaching through the initiative reported improved health literacy, with 60 percent reporting a greater likelihood to participate in clinical trials for breast cancer, where women of color are traditionally underrepresented. Penn’s Abramson Cancer Center has also led initiatives to encourage Black cancer patients to enroll in clinical trials.

“She’s a powerhouse,” Knollman said of Rivers. “I don’t know how she does it. She’s a working mom of three boys and holding down two full-time jobs, and she’s also a patient with metastatic breast cancer.”

And there’s plenty more in the works. In the near future the initiative plans to partner with new hospitals, expand its services to people with lung and ovarian cancers, and increase its involvement in clinical trials.

“Sometimes there’s stress or misinformation on the other side,” Rivers said. “It’s really important to keep addressing the substandard care that marginalized people sometimes receive. We help them navigate the labyrinth. People aren’t falling through the cracks anymore.”

You Might Also Be Interested In...

About this Blog

This blog is written and produced by Penn Medicine’s Department of Communications. Subscribe to our mailing list to receive an e-mail notification when new content goes live!

Views expressed are those of the author or other attributed individual and do not necessarily represent the official opinion of the related Department(s), University of Pennsylvania Health System (Penn Medicine), or the University of Pennsylvania, unless explicitly stated with the authority to do so.

Health information is provided for educational purposes and should not be used as a source of personal medical advice.

Blog Archives


Author Archives

Share This Page: