How do we know what we don’t know?
By Marya Shegog, PhD, MPH, CHES: Health Equity and Diversity Coordinator, Lazarex Cancer Foundation
The first time I came to know cancer was when my grandfather was diagnosed with prostate cancer while I was in elementary school. I did not completely understand what it was or how it would eventually dismantle the brilliant man I called Papa, but I did know it was not good. I was a witness to the downward spiral with no assent in his lifetime and now I can’t help but wonder what would have happened if he would have been given the option to participate in a clinical trial. The concept, however foreign, even though he had two sons who were physicians, was never explored. That was the 80’s however, since then I have experienced many of my family members having multiple cancers; from breast cancer to lung cancer to colon cancer and more. Yet still, not one of them has ever participated in a cancer trial. I recall exploring the options of trials for only one of my family members and by that time it was too late.
This is a picture of a Black family. Resilience does not capture who and what we are…. We keep going. We have won the battle against one cancer only to have another come along on the road of life where the outcome was not so successful. We did the best we could with what we knew, and I wonder if, in just one of these cases, what we didn’t know killed us.
My family is unique in many ways. We have survived. We are an enterprising clan. We often speak about health and wellness. What steps we each can take to achieve and maintain health. Not to mention what we can do to prevent cancer and making sure each of us know our risk factors. We know what cancer looks like in other family members and rely on our network to support us. And now we have the tools to find out what we didn’t know before. When cancer creeps into our family we will address it. And guess what? Now we know. We know to explore options including cancer trials. It has rarely been about resources; it has been more about access. The clinical teams that provided care for my family members simply did not know or chose not to explore trials as an option for treatment. I can’t say for sure it was because of skin color but convention, wisdom and experiences tell me that in some cases that is precisely why they never explored the option of cancer clinical trials, and that is simply not acceptable.
The hours lost with my Papa (grandfather), and the moments that we collectively never had the chance to witness, are enough to make me cry. My grandfather was born in 1898, had a collection of Master’s degrees but never a doctorate because that is not what a black man with a family had the opportunity and resources to achieve; he never had the opportunity to see me enter or complete one of my graduate degrees. But we did the best we could with what we knew and now we know more. So, this is one Black family that will explore all options, including clinical trials, when cancer comes knocking again. Because now we know.
Dr. Marya Shegog’s bio can be found here.