Hi, I’m Ben, a young 67 year old Black/ African American cisgendered male. In my years I have traveled over much of the United States and several Euro/Asian cities. Through those travels I have remained steadfast in the belief that speaking truth to power always works best. This should make you aware that I am a community activist. My focus is Black people. In my day-to-day life I am an advocate and voice of all underrepresented communities. I am also a two-time cancer survivor of liver and prostate cancers. Because of this experience I go out into the community to tell my story and talk about some of the glaring disparities I have seen in health care. As a survivor, treatment for prostate cancer is one thing I choose to focus on.

As a trusted community partner, I make every effort to represent my experiences as a prostate cancer survivor in a knowledgeable fashion. While lived experience does not tell a complete story, my personal research and participation in scientific research adds depth to what I share with others. Through my experiences I have noticed that there are common themes shared by other Black men who are prostate cancer survivors. And along the way I have learned certain facts: Black men are 2.5 times more likely to die from prostate cancer than their white counterparts. Yet only 3% of men included in prostate cancer research are Black men. These truths begin to shed some light on the disparities Black men face around prostate cancer.

My personal prostate cancer story entails the knowledge that I had an enlarged prostate since I was 38. Since that time I had follow-up with regular PSA (prostate specific antigen) screening blood tests. That was until I had a liver transplant and then I missed a few years of screening as the follow-up treatment for that had a more urgent need for attention. Once I again resumed my PSA screening, I found out that my numbers were very high. This then put me into another gear.

As someone that has always had medical insurance, I never hesitated to seek out medical advice and treatment. What I did discover in this journey is the need to have folks that understand you and your community. For prostate cancer, we operate in hushed tones. There is that closed door and never to be discussed amongst your peers’ attitudes because of machismo associated with business relating to the prostate. I never felt comfortable talking about this to medical professionals until I started seeing my first Black Urologist. Then the floodgates opened for me. Now I can’t stop talking of the importance of screening and early detection. Through my experience I learned the importance of having providers that truly are caring and not just checking boxes. The Swahili term “Sawabona” comes to mind. The literal meaning is I SEE YOU. Figuratively this means I see you and I hear you in both directions.

I am saying this to point out that this is a shared ownership of responsibility and then once you have the right information, you can be a true advocate for yourself and others. The most successful and meaningful encounters I’ve had in getting medical care are when I have been able to trust the people delivering the care.

Early prevention also must mean follow-up. One of the most effective means of this happening is do more than have the people drawing blood for PSA screenings look like you. It is imperative that the studies and research be led with folks that better understand the disparities we face. This points to the importance of involving people like us in all aspects of both research and education around the early prevention and detection of prostate cancer. One of those means is early screening with PSA. The educational process in our community should be as prevalent as the commercialization of selling athletic apparel. The simplicity of a simple procedure like the PSA should be standard procedure. There is evidence that suggest there is no more prevalence of the disease in the Black community than others. What do see is a higher level of death associated with this disease with Black men.  

Let’s take ownership of health. The knowledge that we can improve our outcomes is one that I always want. For my family (Black and African men of descent from the African Diaspora) I want thriving communities and one of those means is get screened for prostate cancer. Get your PSA. Feedback here is not optional as feedback for me comes in the form of lower mortality rates for my family. Thank you for reading and listening to my story. Let your story be the next chapter.

Ben Young