Our Health History Is in the Stories We Tell Within Black and Brown Families

With National Black Family Cancer Awareness Week (June 15-21, 2023) on the horizon, it is paramount to acknowledge the pivotal role that nurse navigators play in educating and empowering patients and their loved ones—to include fostering candid and transparent conversations about family health history, knowing our bodies, risk reduction, and proactive cancer screenings. As a breast cancer survivor and founder of the Tigerlily Foundation, I am a testament to the profound, lifesaving impact of these conversations. My mother was a nurse, and I often say that she gave me life and saved my life. Here’s how.

An Important Life Lesson

Breast cancer is a path that I never anticipated on my life’s journey; yet, it is one that I faced head-on, and I am still alive, thanks in large part to the guidance of my mother, who taught me from a young age about the importance of breast health, self-examinations, knowing my body, speaking up for my health, and having a strong and healthy provider relationship. Her teachings proved invaluable when I discovered a lump in my breast at the age of 31 years. Because she taught me about the importance of knowing my body at 13 years old, I knew that the lump I felt in my breast was not normal, and I immediately sought medical attention.

However, despite my concerns, my initial doctor dismissed my worries and assured me that I was too young to have breast cancer. But I knew my body and felt intuitively that something wasn’t right. I continued to advocate for myself and pushed for a mammogram, which came back as negative. I still wasn’t comfortable with the results and asked for a biopsy. I was ignored by the doctor. I continued to push until I finally got one, and I was then diagnosed with triple-negative breast cancer at the age of 32.

I shudder to think what would have happened if I hadn’t known my body or had the courage to speak up for myself. The stark reality is that cancer kills, and without early detection and timely treatment, I would not be here today. My journey with breast cancer has been a humbling experience that has ignited a passion in me to help others through the Tigerlily Foundation. I am eternally grateful for my mother’s wisdom and guidance, which not only allowed me to be here today, but also inspired me to pay it forward and empower others to take control of their breast health before, during, and after their diagnosis. This is a message that I hope resonates with nurse navigators everywhere, as they play a vital role in educating patients about the importance of breast health and supporting them through their cancer journey.

Now let’s talk about what we know.

Maimah Karmo and colleague at the AONN+ Annual Conference.

Barriers to Care

Black patients face systemic barriers to advocating for their health due to a lack of trust and many socioeconomic and cultural factors, to include limited access to healthcare, and barriers to adherence due to structural racism in healthcare. Lack of trust, and a true understanding of the risk factors and more, all contribute to delayed diagnoses and poorer health outcomes. It is essential for healthcare providers to recognize these barriers and take steps to address them.

• First, it is crucial for nurse navigators to create a safe and nonjudgmental environment for patients to share their concerns about their health. Many Black patients are skeptical of the healthcare system, and they may be hesitant to share sensitive information about their family history or genetic predispositions. Therefore, it is essential for nurse navigators to build trust and rapport with their patients and make them feel comfortable sharing their health information. Some of the closest and longest-standing relationships I have are with my healthcare team. The relationship you develop with your patient can change the trajectory of their lives, so take the time to show compassion, to lean in, listen, learn, and leverage the moments you have with your patient to build a bridge of deep connection and trust.
• Second, don’t wait for the patient to ask—share information and ask questions. Many Black patients have shared with me that they were never prompted by a healthcare practitioner to talk with their family about health history, they were never offered biomarker testing or a clinical trial. And often, they don’t know that their population faces higher mortality rates and comorbidities with accompanying risk factors. We can’t assume that people know; and beyond that—even when they know, we can’t assume that it may be easy for them to adhere for socioeconomic and other reasons. It’s important to share information and ask if there may be any barriers that you can help the patient overcome.
• Third, it is crucial to acknowledge that the odds are not in our favor when it comes to cancer disparities in the Black community. Black women are more likely to be diagnosed with aggressive breast cancers at a younger age, and they have higher mortality rates than their White counterparts. Therefore, it is essential for nurse navigators to take a proactive approach to cancer prevention and early detection and encourage their patients to do the same. We should not be waiting until girls and boys are older to educate them on how to be their own best advocates. We need to be teaching health hygiene as early as we teach children to brush their teeth, take their baths, and groom themselves. We also need to integrate health and discussions about health much like parents do when it comes to life coaching. By prioritizing family history and genetic testing, we can identify those who may be at increased risk for cancer and provide them with the support and resources they need to prevent or detect cancer early.
• Fourth, provide them with practical, useful, and relevant resources.
• Tigerlily offers educational materials like the Genomics & You Guidebook, and our Clinical Trials Guidebook for nurse navigators to share with patients. Our guidebooks are cocreated with patients and provide practical advice for patients on how to have important conversations with family members about their health history.
• Our Barrier Toolkits provide 13 toolkits on everything from empowering healthy provider communications, to managing mental health when dealing with a medical condition, to navigating access, and clinical trials…and more.
• One of our most impactful programs is our ANGEL Advocacy Training, through which we educate women on how to understand their bodies and be proactive with their health. We have found that once educated about being proactive in one way, people translate that into whole body advocacy and share this information with their families. It always amazes me to see how women shift in their lives once they have been educated and equipped with tools of empowerment; it can make a hugely positive shift in their emotional, mental, and home relationships, in communication, and more.
• Our MY LIFE Magazine and BREATHE Tv are digital programs where patients can see how other patients are navigating their diagnosis, treatment, and journey.
• We also have trained more than 200 patients as lay navigators who can serve as trusted partners to building a bridge and community with your patients.
• Our Clinical Trials program provides patients with resources to overcoming barriers to adherence.
• We also provide patients with referrals to partner resources. We have found that patients trust other patients, and when they come to us, our goal is to provide them with a safe space where they can exhale; and we can help you help the patients you love.

Empowering Patients

I am deeply passionate about advocating for the health and well-being of communities, particularly Black patients who are disproportionately affected by breast cancer. Throughout my journey, I have come to understand the critical role that nurse navigators play in promoting early detection and cancer prevention among their patients. Therefore, I implore navigators to recognize the power of their role as advocates and to prioritize promoting health history talks with their patients. At the Tigerlily Foundation, we remain committed to empowering patients to take control of their breast health. By working together, we can help eliminate the disparities in breast cancer outcomes in Black communities and promote health equity for all. And, I thank you for all that you do—you are a lifeline to patients and your communities.

National Black Family Cancer Awareness Week

More on National Black Family Cancer Awareness Week