Understanding our genetic predispositions to cancer isn’t about fear and anxiety; it’s about empowerment. Organizations like Facing Our Risk of Cancer Empowered (FORCE) help individuals and families take this proactive approach to their healthcare by offering resources and support through awareness. For this story, leadership team members amplified the organization’s broader mission by sharing their personal stories of genetic testing and the importance of understanding one’s genetic inheritance.
Wenora Johnson, President, Board of Directors
Wenora’s journey into advocacy started with a life-altering diagnosis. “My goal at that time was just to survive,” she recalls, reflecting on her stage 3b colorectal cancer diagnosis at age 44. It wasn’t until a genetic test revealed Lynch syndrome that the full scope of her situation became clear.
Lynch syndrome, also known as hereditary non-polyposis colorectal cancer (HNPCC), is the most common cause of hereditary colorectal (colon) cancer. “It had actually been sitting there for 15 years,” she realized, stressing the importance of knowing your family history and getting early screenings.
The genetic testing experience became a defining moment, leading Wenora to FORCE. “Testing positive for being a Lynch syndrome carrier highlighted the importance of understanding one’s genetic risks”, she explains. Wenora started as a peer navigator, supporting others facing similar diagnoses.
Her involvement with FORCE expanded, leading to her serving on the board and eventually becoming board president. “These people are genuine scientists and geneticists behind the scenes, providing information to help individuals make choices,” she emphasizes, highlighting FORCE’s commitment to reliable information.
Much of her advocacy work centers on dispelling misconceptions about clinical trials and encouraging greater participation from people of color. “If we don’t, then we lose,” she states. Representation in research is vital. Her experience participating in a Lynch syndrome vaccine trial reemphasizes her commitment to ‘walk the walk.’
“FORCE is that beacon of light when we’re looking for information,” she concludes, again stressing the organization’s role in breaking down barriers, providing accurate information, and empowering individuals to take control of their health. She wants to ensure that future generations, including her grandchildren, can access reliable resources and support.
Verinda Hobbs, Partnerships Strategy Manager
Her connective story began with her sister’s breast cancer diagnosis in 1993, at just 28 years old, and at a time when it was common for the medical community to overlook the possibility of a cancer diagnosis because of her age. This wasn’t just a family tragedy; it was a wake-up call. Her family realized they didn’t talk about health history enough, and doctors weren’t asking the right questions. “We don’t know if she hadn’t been so young, or if she hadn’t been Black, if there would have been different treatment options offered to her,” she says, highlighting how crucial it is to be your own advocate. Unfortunately, Verinda’s sister lost her battle with breast cancer a few years later, at age 32.
Then, the discovery of a BRCA1 gene mutation in a cousin prompted a deeper dive into their family’s health history, revealing a pattern of aggressive cancers.
This led Verinda and another sister to undergo genetic testing, confirming their own BRCA1 carrier status. “In a way, having a gene mutation almost gives you…the ability to chart my own destiny,” she explains, highlighting her proactive approach to managing her genetic risks. This included preventative surgeries and vigilant screenings.
Verinda initially found unwavering support with FORCE. The organization guided her journey and helped her navigate a path forward. Now, she’s passionate about helping others. Verinda became a patient advocate to “get information out there and help people become more aware” of hereditary cancers, stressing the importance of self-advocacy and understanding family history. She wants everyone to know that knowing your risks is empowering and that you don’t have to do this alone.
Juanita Rogers, Vice President, Health Education & Communication
While her background is rooted in public health rather than personal cancer experience, Juanita’s commitment to FORCE stems from a deep concern for health disparities. Coming from a large family, Juanita understood that her family failed to have essential conversations around health, propelling her career in public health and education.
“Being empowered and feeling as though it’s not negative to have these conversations is what I would like to see for my family and for the Black community, as well,” She explained.
In her role, Juanita translates complex scientific information into accessible language, ensuring diverse audiences understand hereditary cancer risks. She emphasizes the importance of open communication about family health history, particularly within communities that have historically faced barriers to healthcare access. “It’s important to be able to feel empowered to ask questions and to achieve the most optimal health that you can,” she notes, advocating for proactive engagement with healthcare providers.
FORCE is crucial in disseminating accurate information and addressing misconceptions surrounding genetic testing and hereditary cancers.
“We do share information. I harp on X-RAY (Behind The Headlines) because it’s a great way to share real information and research in a plain language,” she states. FORCE also combats misinformation through its How to spot the BOAST feature and provides comprehensive resources on genetic counseling.
“Knowing that we are here for the community in various ways…is most important,” Juanita emphasizes, underscoring FORCE’s dedication to accessibility and support. She encourages individuals to view themselves as active participants in their healthcare, utilizing FORCE’s resources to make informed decisions about their genetic health.
What We Should Know
FORCE is an invaluable resource on the types of hereditary cancers and what we need to know about them. While 10-20% of all cancers are believed to be caused by an inherited mutation (hereditary cancer), it is crucial to be well-informed on the types, signs, and the specifics on how inherited cancers are passed on from generation to generation.
FacingOurRisk.org shares a wealth of information on the types of cancers and their associated genes. Understanding how genes are passed down from generation to generation, mother or father, and sometimes skipping generations, only amplifies the importance of families having the necessary health conversations to make proactive health decisions for everyone. They offer resources, support, and a sense of community but also empower individuals through awareness and encouragement.
Center for Disease Control: Lynch Syndrome
JAMA Oncology, March 2021, BRACA-1 Gene Research supported the need for more Black women to be tested.
The post Understanding Hereditary Cancer: When Genes Tell the Story appeared first on Black Health Matters.
