Mathew Knowles' Story
In October 2019, I let the world know that I had a BRCA2 variant and been treated for chest cancer, or male breast cancer. My goal was to let others like me know about cancer risk to improve prevention. Men do not often think about their cancer risk, and Black men have historically had worse cancer outcomes. I feel like it is important for me to help educate, enlighten, and inspire others to understand their health risks and ways to live longer, healthier lives.
My efforts started with my family. Of course, everyone wants to know about my daughters, Beyoncé and Solange, who have tested negative for the BRCA2 variant. I started working with ConnectMyVariant in October 2021 to map my family history and find other relatives who might benefit from genetic testing. My variant is called BRCA2:c.6591_6592del. ConnectMyVariant does not yet know of anyone else who is interested in connecting with others who have this variant, so we started looking at my family tree.
At first, I thought that my variant might come from my dad’s side of the family. He has several brothers who had prostate cancer. Since BRCA2 increases prostate cancer risk, this made sense as a first place to look. Through a lot of family history work, we extended the family tree on my dad’s side of the family. I discovered a new great-great grandparent. However, besides prostate cancer in my uncles, there was not a lot of cancer on that side of the family. We then started looking at my mom’s side of the family tree. My mom did not have cancer and died at 75, but I had heard stories of cancer in other relatives on her side. I asked my cousin, Dr. Oscar Underwood, if he could give more information about his grandmother, who had died of breast cancer. It turned out she likely died of lung cancer.
Next, we started talking about my aunt and her two daughters. I had heard that they each had breast cancer diagnoses, so I started asking for more information to find out if they had genetic testing for BRCA2. No one was able to get the medical records for my cousins. If they had the same BRCA2 variant, we would know for sure which of my parents it came from and I would know which of my relatives I should talk to about genetic testing. To help figure this out, I just told my aunt’s living son to get genetic testing. He was reluctant to get testing, but I told him how important it is for me and for his family. It seems to help people if they know that the testing may benefit their kids and siblings more than it will benefit them.
Let’s face it: Knowledge is power. Most people find out they have an inherited mutation only after they are diagnosed with cancer. Understanding my family tree has helped me find out which other relatives are at risk, so I can help them get genetic testing. So, can yours.