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Home / Health Conditions / Metastatic Breast Cancer / Why Black Women Must Be Super Advocates

Why Black Women Must Be Super Advocates

metastatic breast cancer
Photo credit: Jamil Rivers/Penn Medicine News

Making a difference in someone’s life can truly go a long way. In fact, when it comes to our health, sometimes we could all use a little help from others. Breast cancer survivor Jamil Rivers has impacted other women’s lives in a huge way. 

Years ago, the working mom of three received the daunting diagnosis that she’d developed Metastatic breast cancer. Research indicates that Black women like Rivers are at a “40% higher risk of developing Breast cancer than white women.” With the healthcare system being rigged, many Black Women don’t receive the proper treatment or resources they need to sustain a healthy life. 

Unfortunately, Rivers has seen cancer up close and personal, after watching her husband’s battle with cancer. Though, her personal experience proved useful in helping her ask the right questions at doctor's visits and receive the proper treatment she needed. Additionally, being well-versed in oncology care led Rivers to help other women advocate for themselves. 

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This Is No Ordinary Common Cold

Like any cough, we immediately think to ourselves that we’ve caught a common cold. Most people will say they’re not a fan of being sick in bed all day.

Unfortunately, Jamil Rivers didn’t have a choice in the matter. The mysterious presence of a “cold” seemingly ran through her whole family. First her, then her husband, and then their three children. However, Rivers soon discovered that she didn’t just have a common cold. Instead, her prognosis was much worse. 

The 44-year-old spent days being in and out of doctor’s offices and taking antibiotics that didn’t work. It wasn’t until a trip to her cardiologist, that she found her liver covered in lesions.

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Prior to the visit, she recalled her OB/GYN informing her that her breasts had undergone small changes. The doctor assured her she had nothing to worry about. Turns out she received bad advice. The tests that followed shortly after her trip to the cardiologist seemed to confirm Rivers’ fears; she had metastatic breast cancer. Her life was turned upside down.

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Jamil Rivers Demands Answers From Her Doctor

“She was treated upfront with chemotherapy because her liver function was abnormal. The cancer had completely infiltrated her liver,” according to Dr. Hayley Knollman, an oncologist at Penn Medicine’s Rena Rowan Breast Center in the Abramson Cancer Center, who treated Rivers after the diagnosis.

Knollman expressed how impressed she’d been by Rivers' knowledge of breast cancer and her willingness to learn more. From day one, Rivers wanted to know how they were going to treat her chronic disease. 

The first plan of attack was chemotherapy. For the next 10 months, Rivers was in and out of sessions. Though Rivers found the option too rigorous and hard on her body.

In the end, she opted for less toxic therapies, such as estrogen blockers. Thanks to her regular medication and doctor visits, Rivers has been able to maintain a healthy life. Not to mention, she’s caring for her three sons and working full-time. Knollman credits the Philadelphia mom as a “powerhouse.” The woman is certainly a force to be reckoned with. 

Photo credit: Jamil Rivers/Penn Medicine News

RELATED: 5 Reasons Black Patients Should Participate in Metastatic Breast Cancer Trials

Jamil Rivers Teaches Other Women The Importance Of Advocacy

In addition to being a “powerhouse,” Rivers took on the role of a breast cancer advocate. It wasn’t just enough to be her own champion. During her treatment, the Philadelphia native discovered many women, especially Black women, needed help in managing their breast cancer diagnosis.

It wasn’t long before Rivers committed herself to patient advocacy and founded The Chrysalis Initiative. Rivers shared her battle with the chronic disease and encouraged other women to do the same. Furthermore, the initiative offers a wealth of benefits for sufferers such as patient coaching, training for care providers, and other resources to reduce disparities in breast cancer outcomes.

Thus far, Rivers’ organization has helped around 10,000 patients. Almost 100 percent of women who received coaching through The Chrysalis Initiative reported improved health literacy.

Additionally, the majority of participants expressed an interest in participating in clinical trials for breast cancer. Most clinical trials leave Black patients out of their studies. Fortunately, Rivers is changing the narrative and bridging the gaps in racial disparities within the healthcare system. Though, there’s more in store for patients. Additionally, the initiative has plans to partner with new hospitals, expand its services to people with lung and ovarian cancers, and increase its involvement in clinical trials. 

“Sometimes Black women are not offered the highest standard of care. 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 advocate for themselves,” Rivers said in a previous interview. 

It’s women like Jamil Rivers that are making a real difference in the world. The mother of three has survived breast cancer and learned to advocate for herself in the process. Even more endearing, she’s taught other Black women to do the same and get them the help they need. 

By Aja Sheppard | Published March 16, 2023

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