Investigating your family health history is an act of love

By Stephanie Cochran

I’ve spent my career reviewing data, following evidence and investigating root causes to help ensure compliance and protect public health. But the most important investigation I conducted was my own.

As a Black woman, I was taught early to be proactive about my health. I know how our symptoms get minimized and our concerns dismissed. And I learned from my elders that we must show up prepared, ask questions and build a trusted care team. That’s why I sought out a gynecologist who looked like me. I couldn’t have known how well that would serve me.

After having two beautiful daughters and deciding my family was complete, I scheduled a tubal ligation. Because I was already being evaluated for irregular menstrual cycles, my gynecologist took the opportunity to test the surrounding tissue during the procedure. The call came the next morning: at 41 years old, I had stage one endometrial cancer.

My gynecologist referred me to an oncologist, also a Black woman, who said, “You’re too young for this. It has to be genetic.” She was right. I carry a genetic mutation causing Lynch syndrome, a hereditary condition significantly raising the risk of colorectal, endometrial and several other cancers, particularly at a young age. One in 279 people is estimated to carry a Lynch-related mutation, but I had never heard of it.

When I started looking around for others who shared my diagnosis, the faces I saw rarely looked like me. I have come across very few Black or Brown Lynch syndrome carriers, not because there aren’t any, but because we don’t know to look for it.

Black and Brown people have higher colorectal cancer death rates; we are 20 percent more likely to develop the disease and 40 percent more likely to die from it than White Americans. But we are not being reached or screened. And, too often, we aren’t being heard when we report abnormal symptoms.

Because my family medical history was largely unknown, after my diagnosis, I started doing research, pulling death records and reaching back into the branches of my family. A grandmother and aunt on my father’s side were both treated for colon cancer, but no one ever connected the dots. I wrote a Facebook post saying, “If you’re related to me, you need to read this.” 

Some people responded. Some didn’t want to know. The history of medicine’s abuse of Black patients—Tuskegee experiment, Henrietta Lacks, higher preventable maternal and fetal mortality rates, disparities in pain management—is real. The system has not always treated us well.

The decision to pursue genetic testing is deeply personal. But we can’t heal what we refuse to acknowledge. For me, knowing changed everything. I had a full hysterectomy one month after my diagnosis. Since then, there has been no evidence of disease. Two physicians that looked like me saved my life. They saw my health issues holistically and were willing to dig deeper.

Survivorship for me includes a team of specialists in oncology, gastroenterology, dermatology, gynecology, psychology and primary care. I assembled this team the same way I built trust with my gynecologist, deliberately and without apologizing for being thorough.

FORCE (Facing Our Risk of Cancer Empowered) has also become a trusted part of my team. It provides valuable resources and a supportive community. Each member of this community has a different and unique story. Many have navigated multiple diagnoses and are figuring out how to manage living with a hereditary mutation. I have learned so much from all of them.

Now, I volunteer, co-leading FORCE community group meetings. But, when I look around, there are very few Black and Brown people. I want to help change that. If sharing my journey allows me to reach one person who looks like me, then I’ve done something worth doing. If I can encourage just one person to investigate their family health history for a hereditary cancer link, the ripple effect could help save many lives across generations. Be willing to be vulnerable, transparent, and ask uncomfortable questions. If there is cancer in your family, don’t ignore it. Ask what type, what caused it, and how old they were when they were diagnosed and when they died. Write it down and keep a history of it.

Talk to a doctor about whether genetic testing makes sense. It’s a simple blood or saliva test. And, if you do test positive for a hereditary cancer mutation, assemble your team, develop and execute a plan and monitor your status.

Health is one of the most important parts of your family history. Share that history with people you love.

The opinions expressed in this commentary are those of the writer and not necessarily those of the AFRO.

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