What Young Black Women Should Know About Stage 4 Breast Cancer
Metastatic breast cancer (MBC) is not an equal-opportunity aggressor. Black women are more likely to have advanced forms of breast cancer and more likely to be diagnosed later in their disease progression—meaning their risk level for MBC is especially high. That’s where the Tigerlily Foundation comes in. This Black woman-led breast-cancer advocacy organization, which focuses on education for all women 45 and younger, is especially dedicated to ending disparities of age, stage, and color in diagnosis and treatment. We spoke with CEO Maimah Karmo to hear her messages for young women, whether you’re living with MBC or worried about your risk.
You're Never Too Young to Get Breast Cancer
Karmo’s own story illustrates this point. When she was 32 years old, she noticed a lump on breast and scheduled an appointment with her doctor. “My doctor dismissed me,” she recalls, “telling me I was too young and had no history.” It was only after six months of persistence that she got screened and received a diagnosis—stage two breast cancer. “My doctor told me to come back in six months to a year,” she says. “If I had taken her advice, I may not be here today.”
MBC Typically Develops in Women With Previous Breast Cancer Diagnoses
Here’s the reality—11% of all new breast cancer diagnoses are found in women under 45 years old. Even if that cancer is Stage 1 through 3, you now have an increased likelihood of a metastases that could result in MBC. “As a young woman or a Black woman, the chance of you getting breast cancer recurrence is high,” Karmo says. It is estimated that 75% of women with MBC were initially diagnosed with an earlier stage of cancer and then had a recurrence months or years later.
Late-stage Breast Cancer Does Not Affect All Women Equally
“Black women are more likely to have more aggressive cancers,” Karmo says. They are diagnosed at younger ages and at later stages than white women. According to 2017 CDC data, Black women are more likely to die of breast cancer than any other demographic, likely due to factors like systemic bias and a lack of access to affordable screenings and treatment. Karmo explains that Black women are more likely to get triple negative breast cancer, which tends to be aggressive (sometimes metastatic) with a poorer prognosis than other cancers.
Genetic Testing Can Help You Understand Your Risk and Treatment Options
“It’s really important to know your family health history,” Karmo says. Ten percent of all breast cancer cases occur in someone with a first-degree relative who previously battled the disease. One percent of the female population has the BRCA gene mutation, which puts them at elevated risk for a breast cancer diagnosis (this knowledge can help you catch it early). Even those already living with MBC can benefit from genetic testing—a 2019 JAMA Oncology study found that genetic testing can help determine a treatment approach for MBC.
Be Prepared to Be Your Own Advocate
In Karmo’s case, assertive pursuit of screening may have been the thing that saved her life. It’s essential to stay on top of your screenings, especially if you’ve had breast cancer previously. “If you get breast cancer and are diagnosed earlier, you cannot ever stop being vigilant,” Karmo says. Most recurrences occur within five years of diagnosis, but they can also happen even a decade or more after you are declared cancer-free. If you are already living with MBC, staying on top of your treatment can help you live a longer life.
A Healthy Lifestyle Can Help MBC Patients Thrive
After an MBC diagnosis, it’s understandable if you feel despair about the future. But what if we told you that you can live a wonderful life for years as you battle this disease? “Look at how to change your lifestyle to ensure you’re doing the right things,” Karmo says—like keeping up with regular medical care, reducing stress, limiting alcohol, eating healthy, and staying as active as you can manage. Dedicate yourself to activities that bring joy and distract you (in a good way) from the stress of your treatment.
Finding a Doctor Whom You Trust Can Change Everything
This is especially true for women of color who may have experienced discrimination in the healthcare system. “The Black community is very hurt and very distrustful of scientific communities because of what has happened in the past and is still happening now,” Karmo says. When you’re dealing with a cancer diagnosis, you need a provider you can trust with your life—literally. Apps like Health in Her Hue exist to help Black women connect with healthcare providers who are culturally competent and anti-racist.
Learning About the Condition Can Help You Feel More Empowered
Unfortunately, MBC remains one of the most misunderstood forms of breast cancer. Groups like Tigerlily exist to help educate women about life before, during, and after diagnosis. Karmo says that her mission is to provide women with the resources they need to spread the message of prevention and survival to others. “We have to ensure that women are using their voices and are amplified as empowered advocates in their care,” she notes—especially Black women and women from underserved communities.
The MBC Community Is Incredibly Rich and Supportive
You are not alone, even if you feel that way right now. One way to meet other women with MBC is to join a survivors’ community dedicated to advocacy work. Tigerlily’s Young Women’s MBC Disparities Alliance is a collective of patients, caregivers, and experts focused on ending unfair barriers to treatment. “It’s really about creating these fearless advocates who can be out there learning the facts and being empowered to speak up,” Karmo says. Changing the treatment landscape starts with educating as many women as possible about this disease.
- Breast Cancer Incidence Rates: American Cancer Society. (2019). “Breast Cancer Facts & Figures 2019-2020.” cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/breast-cancer-facts-and-figures/breast-cancer-facts-and-figures-2019-2020.pdf
- Breast Cancer in Young Women: Centers for Disease Control and Prevention. (n.d.). “Breast Cancer in Young Women.” cdc.gov/cancer/breast/young_women/index.htm
- MBC Prevalence: Metastatic Breast Cancer Alliance. (n.d.). “How many women are living today with metastatic breast cancer?” mbcalliance.org/how-many-women
- Breast Cancer Deaths by Race: Centers for Disease Control and Prevention. (2020). “Leading Cancer Cases and Deaths, All Races/Ethnicities, Male and Female, 2017.” gis.cdc.gov/Cancer/USCS/DataViz.html
- Triple Negative Breast Cancer: BreastCancer.org. (n.d.). “Triple-Negative Breast Cancer.” breastcancer.org/symptoms/diagnosis/trip_neg
- MBC Risk Factors: Metastatic Breast Cancer Network. (n.d.). “Lifetime risk of developing invasive breast cancer.” mbcn.org/risk-factors/
- Genetic Testing For MBC Treatment: JAMA Oncology. (2019). Pathogenic Germline Variants in Patients With Metastatic Breast Cancer.” jamanetwork.com/journals/jamaoncology/fullarticle/2749176
- Recurrence Rates: World Journal of Surgical Oncology. (2016). “Factors that predict recurrence later than 5 years after initial treatment in operable breast cancer.” wjso.biomedcentral.com/articles/10.1186/s12957-016-0988-0
- Lifestyle Recommendations for Breast Cancer Patients: Canadian Medical Association Journal. (2017). “Lifestyle modifications for patients with breast cancer to improve prognosis and optimize overall health.” ncbi.nlm.nih.gov/pmc/articles/PMC5318212/