When I walked into a woman’s breast clinic, they assumed I was there for my wife. Men shouldn’t be embarrassed for seeking the care they need.
By Mathew Knowles
Imagine boarding a flight and hearing your pilot come over the PA system: “Good morning, ladies and gentlemen. It’s my pleasure to welcome you aboard our flight — to which destination? I’m not sure.” I think — and hope — you’d get off the plane. So why are so many of us blindly and idly navigating our health, with no outcome or destination in mind?
This week is the one-year anniversary of sharing my cancer diagnosis with the world. As I look back, I’m not afraid to admit I would have made drastically different choices about my health if I knew then what I know now about how we (and especially Black men) approach our health.
Last year, my wife noticed a couple dots of blood staining our bed sheets. Having a background in health care technology, I was aware cancer was within the realm of possibility. I quickly made an appointment to get a mammogram, then a sonogram and finally a biopsy that confirmed that I did in fact have Stage 1A breast cancer, or as I believe it should be called, male chest cancer. But we’ll get into that later.
From there, I scheduled my mastectomy. With male chest cancer and breast cancer, professionals sometimes elect to remove both sides to avoid a return of the disease, since it can be genetic.
Going under the knife
While my surgery was only to remove one side, they reassured me that if it was necessary to remove both, they’d be able to make that decision during my procedure. My surgery went as planned, and they removed my right breast. It was only afterward in thinking about my family’s long history of cancer that I decided to take a medical genetic test. And that’s when I learned I had the BRCA2 gene mutation, putting me at a higher risk of breast, prostate and pancreatic cancers and melanoma. If I’d known this going into surgery, I would have had the other breast removed too.
I’m grateful to say I’m cancer-free today and have the knowledge to make important lifestyle choices that hopefully keep me in remission, such as getting a mammogram every six months. I’m perhaps even more grateful this discovery spurred my kids to take their own medical genetic tests to learn their own risks and better inform the decisions they make — my newfound knowledge also became theirs.
Despite having a background in health care tech, an understanding of my family history of cancer and relatives who work in health care, none of us considered it would be worthwhile to undergo something as simple and noninvasive as medical genetic testing, which would have shed light on my risk of cancer long before I got it.
Here’s someone who put so much of his career into understanding these technologies — yet I didn’t have the info to save my own life. Humbled by that realization, I’ve turned my attention to helping others who may not be aware of their options to realize it too.
Genetic screening isn’t a toy
Genetic screening can give us a snapshot of our health that includes risks for things we want to avoid, like cancer or heart disease, and allow us to make informed, tailored health decisions. Maybe you’re at a higher risk of cardiovascular disease and this information helps guide your dietary choices. Or maybe you have a higher risk of cancer that motivates you to make screenings a part of your routine care.
It’s foolish that so few of us take advantage of this information that’s more affordable and accessible than ever. Who doesn’t want to be able to get ahead of potentially life-changing diseases or health conditions? Knowledge is power. And once we know our risks, we can make informed choices tailored to our individual health. So what holds us back from widespread adoption of medical genetic testing and preventive care?
First, there’s a lack of awareness around what medical genetic testing is. When you hear the term “genetic testing,” many people only think of ancestral testing that traces family roots. Those tests don’t provide the same actionable health insights that medical genetic tests can. This distinction is so important.
Then there are people who know about medical genetic testing but feel averse to the idea of uncovering potential health risks. This is completely at odds with the proven, often life-saving benefits of early detection. A gene mutation is not a death sentence — if anything, it’s a detailed map to guide your health journey. We achieve better health outcomes when we know what we’re working with.
Men need encouragement
Lastly, there’s blatant mislabeling at play that I believe puts many people’s health in jeopardy — especially Black Americans, who are at a higher risk of mortality if diagnosed with most cancer.
I’m adamantly against using the term “breast cancer” when talking about the disease in men. Not only do I think it’s insensitive to women who go through such a different experience with one of the most personal parts of their bodies, I also know firsthand that using the terminology makes men extremely uncomfortable and even averse to getting the treatment they need.
It wasn’t comforting to walk into my first oncology appointment through doors that read “Women’s Breast Clinic” and to be greeted with the question, am I here for my wife? Since I’ve shared my diagnosis, countless men have secretly shared their male chest cancer diagnosis with me, as they were too ashamed to talk openly about having “breast cancer.” It’s time to use inclusive terminology that doesn’t embarrass men or prevent them from seeking the care they need.
We’ve collectively learned countless lessons this year that I hope we never forget. It’s never been more prudent to think about our health destination so all of us can successfully navigate our journeys.
We can’t wait any longer. We have tools to live a healthier life readily at our disposal, and it’s time to use them.
Last year, live on Good Morning America, I challenged Michael Strahan to take a medical genetic test. Now I’m challenging you to get screened, if not for you today, for your family and for your future.
Mathew Knowles is the founder of Music World Entertainment Corporation and Artist Management. He has produced and promoted artists including Beyoncé, Solange and Destiny’s Child, among others. He is a partner with medical genetics company, Invitae.