December 16, 2024
When I think about the moment I decided to get genetic testing, I’m reminded of just how much that one decision changed my life. It wasn’t an easy step to take, but it was a necessary one—especially as a Black woman with a family history of cancer. What I learned through that experience has fueled my mission to share what I know, in the hope that others in our community can take steps to protect themselves and their loved ones.
Breast cancer doesn’t discriminate, but the survival rates tell a different story. Black women are 41% more likely to die from breast cancer than White women, even though we’re diagnosed at similar rates (American Cancer Society). And while breast cancer is less common in men, Black men with breast cancer face higher mortality rates than men of other racial groups (Cancer.Net). Those numbers are heartbreaking, but they’re not set in stone. With the right tools, knowledge, and early detection, we can rewrite our narrative. Genetic testing is one of those tools, and it has the power to save lives.
Understanding PMS2 and BRCA2: My Journey, My Fight
When I received my genetic testing results, they revealed mutations in two genes: PMS2 and BRCA2. These mutations mean I carry an elevated risk of developing certain cancers—risks that I will have to monitor and fight against for the rest of my life.
BRCA2, commonly associated with hereditary breast and ovarian cancer, also significantly impacts men. Women with a BRCA2 mutation have up to a 69% lifetime risk of breast cancer and a 17%–25% lifetime risk of ovarian cancer, compared to the average 12% and 1%–2% risks, respectively. For men, BRCA2 increases the risk of breast cancer to 6%, compared to less than 1% for men without the mutation, and a 20%–25% risk of prostate cancer, which is particularly aggressive in Black men (BreastCancer.org).
PMS2, part of the Lynch syndrome gene group, raises the risk of colorectal cancer for both men and women, with men facing a 15%–20% lifetime risk. It also increases the risk of other cancers, including endometrial, pancreatic, and stomach cancers (CDC).
These numbers are staggering, but they come with the opportunity to act. Knowing these risks allowed me to take proactive measures—like undergoing a double mastectomy and hysterectomy—that ultimately saved my life. While this is a battle I will fight forever, I am empowered by the knowledge that I am not walking blindly into it.
Black Men and Breast Cancer: Why This Matters
It’s a common misconception that breast cancer only affects women. While male breast cancer is rare, it is real, and Black men are disproportionately affected. Men account for less than 1% of all breast cancer cases, but Black men with breast cancer have worse outcomes than men of other races (Cancer.Net).
Prostate cancer, another cancer linked to BRCA2 mutations, is also a major concern. Black men are more than twice as likely to die from prostate cancer as White men (CDC). This is why it’s critical for Black men to be aware of their family history and to talk to their doctors about genetic testing if cancer runs in the family. Recognizing these risks can lead to earlier detection and better outcomes—not just for breast cancer, but for all cancers associated with gene mutations like BRCA2 and PMS2.
Protecting My Family, Protecting Our Future
One of the most meaningful outcomes of my genetic testing is the ripple effect it has had on my family. Both of my daughters underwent genetic testing and discovered that they, too, carry these mutations. My journey has also inspired male family members to take action. Some have started conversations with their doctors, while others have scheduled screenings they might have otherwise ignored.
This isn’t just about me—it’s about my entire family, including the men who are often left out of the breast cancer conversation. Black men need to know they are not exempt from these risks, and they must feel empowered to advocate for their health just as much as the women in their lives.
Does Insurance Cover Genetic Testing?
One of the most common concerns about genetic testing is its cost. The good news is that many insurance plans—including Medicare and Medicaid—cover genetic testing if you meet certain criteria. Coverage typically depends on your personal or family history of cancer or other indicators that suggest a higher genetic risk. Be sure to contact your insurance provider to understand your benefits and what steps you need to take to qualify for coverage.
Under the Affordable Care Act, genetic counseling and BRCA testing must be covered at no cost for women who meet U.S. Preventive Services Task Force (USPSTF) guidelines for testing (HealthCare.gov). Men are not always included in these guidelines but should still check with their providers to see if coverage applies to their situation.
Programs Offering Free or Low-Cost Genetic Testing
If you don’t have insurance or your plan doesn’t cover genetic testing, there are programs and organizations that can help:
- Bright Pink: This nonprofit organization offers resources and links to affordable genetic testing services. Visit Bright Pink.
- FORCE (Facing Our Risk of Cancer Empowered): FORCE provides assistance to people at risk of hereditary cancers, including access to low-cost or free genetic testing options. Visit Facing Our Risk or call 866-288-7475.
- Lazarex Cancer Foundation: Lazarex helps cover costs associated with genetic testing and counseling, particularly for individuals in underserved communities. Learn more at Lazarex or call 925-820-4517.
- Myriad Genetics Financial Assistance Program: Myriad Genetics offers financial aid to eligible patients who need genetic testing for cancer. Contact them at 800-469-7423 or visit Myriad Genetics.
Hope for the Future
Black men and women deserve better outcomes, and genetic testing is one of the tools we can use to close the gap. It saved my life, and it can save countless others. Let’s make this a priority in our community. Share this article, talk to your family, and most importantly, take action.
Together, we can change the statistics. Together, we can create more stories of survival, courage, and hope.
Where to Find More Information
Local Resources
The Ohio State University offers comprehensive genetic services through its Division of Human Genetics, part of the Department of Internal Medicine. They provide outpatient and inpatient consultation services, perform clinical and translational research, and participate in community education and outreach. Their team includes physicians and genetic counselors who collaborate with colleagues throughout the medical center and around the world.
Contact Information:
Division of Human Genetics: Contact (614) 293-6694 or (888) 329-1654
Website: Genetics | Ohio State Medical Center
For personalized genetic counseling and testing services, you can request an appointment through the Ohio State Wexner Medical Center:
Request an Appointment: OSU Clinical Genetics Appointment
For concerns such as hereditary cancer, OhioHealth provides genetic counseling services at various locations, including the nearby Dublin Cancer Center.
Ohio Health Genetic Counseling Services: Contact (614) 788-4640 or visit Ohio Health Genetic Services
Mount Carmel Health System offers comprehensive genetic counseling and testing services through certified and licensed genetic counselors, supported by a medical geneticist. Their services include cancer genetics and reproductive (prenatal) genetics, providing risk assessments, education, and support to help individuals understand their family history and make informed decisions about their health.
If you have concerns about your personal or family history of cancer, Mount Carmel’s Cancer Genetics Program can assist in identifying hereditary cancer syndromes and guide you on appropriate screening and management options. Services are available over the phone or in person at the following locations:
477 Cooper Road, Suite 100 Westerville, OH 43081 (Women’s Health Center)
Mount Carmel East, Medical Building #4
5969 East Broad Street, Suite 100, Imaging Center Columbus, OH 43213
Mount Carmel Grove City, Medical Building #2
5300 North Meadows Drive, Suite 1900 Grove City, OH 43123
To schedule a cancer genetic counseling appointment or for additional information, please call (614) 234-6848
National Resources
American Cancer Society: Learn more about genetic testing at cancer.org.
National Society of Genetic Counselors (NSGC): Find a genetic counselor at nsgc.org.
Worldwide Resources
The World Health Organization (WHO): Explore global genetic testing initiatives at who.int.
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