Beyoncé’s father, Matthew Knowles, recently went public with the announcement that he has breast cancer and carries a mutation in a gene called BRCA2. He joins Angelina Jolie as a celebrity who has shared his private medical and genetic history in order to raise awareness and potentially help millions of patients and health care providers.
Knowles’s story has several unusual twists. First, he is a man with breast cancer. Many people still don’t realize that men can develop the disease, which affects approximately 1 in every 1,000 men every year. Because men, and their health care providers, are not as aware of the prevalence of the disease in men, male breast cancer is often diagnosed at later stages and is associated with a worse prognosis. Any male who has bloody nipple discharge, changes in the breast or nipple, or a lump in his breast, armpit, or chest wall should bring these findings to the attention of his health care provider, and breast cancer should be considered in the differential diagnosis. Too often, both men and their health care providers ignore the signs that would immediately be explored and treated in a woman presenting with the same findings.
The second twist: Knowles had genetic testing and was found to carry a mutation in the gene called BRCA2. We all have two BRCA2 genes, but people born with a mutation in one of those genes are at increased risk for several cancers, including breast, ovarian, pancreatic, and prostate cancer. Male breast cancer is seen at higher rates in men who carry a BRCA2 mutation, with a lifetime risk of seven percent as opposed to less than one percent in the general population. BRCA2 carriers also have a higher risk of developing multiple breast cancers. Consequently, Knowles, who currently has breast cancer in only one breast, plans to have both breasts removed to reduce his risk of developing a new breast cancer in the future.
Knowles also acknowledged that his children each have a 50 percent risk to carry the same BRCA2 mutation. The same is true for his siblings. When someone is found to carry a BRCA2 mutation, their family members should each be offered genetic counseling and testing by a trained professional.
The third twist: Knowles is of African American ancestry. Many patients and providers wrongly believe that BRCA mutations are only found in white Jewish women. While it is true that there are three BRCA mutations that are common in men and women of Jewish ancestry, there are thousands of other mutations in the BRCA genes that can be found in people of all ethnic backgrounds. We must begin to offer genetic counseling and testing consistently to all women and men with significant personal or family histories of cancer.
So, who should be offered genetic counseling and testing? ALL men with breast cancer, period. Since Matthew Knowles’s story broke, I’ve read multiple false accounts stating that men with breast cancer should be offered genetic testing only if they have a strong family history of cancer or are of Jewish ancestry. Wrong. ALL men with breast cancer are strong candidates for genetic counseling and testing. And importantly, most BRCA and other cancer gene mutations would be missed by the popular at-home direct-to-consumer genetic testing kits. If you need genetic testing for medical reasons, speak to a certified genetic counselor who can help you order a medical-grade test.
When Angelina Jolie came out with her story in 2013, referrals to my clinic increased by 40 percent overnight and awareness of genetic testing and BRCA mutations changed forever. Matthew Knowles has just done the same for male breast cancer, BRCA2, and genetic testing of non-white women and men. His courageous decision to share something so personal will save lives.
Written by Ellen Matloff. Originally published on Forbes.com.