Willie Lightfoot Jr. is closing in on 50.
His father died from cancer in April 2001 at age 60, about four months after being diagnosed.
“If I go by what happened to him, I got 10 more years,” Lightfoot said. “You understand? So that gets very scary.”
After working with community health advocates to raise awareness of colon cancer, Lightfoot underwent a colonoscopy in September. He had three non-cancerous polyps removed and told he didn’t have to be screened again for 10 years.
“What if I wouldn’t have done this and one of those benign polyps turned into cancer and I didn’t ever get one and 10 years from now, at 60, I have colorectal cancer and I was given the opportunity not to?” said the father and grandfather.
Dr. Danielle Marino of the University of Rochester Medical Center, who is board certified in gastroenterology, performed Lightfoot’s colonoscopy. She acknowledged historic and systemic barriers to care that make it harder for some Black people to receive health care, including screening tests such as a colonoscopy. She worked with Lightfoot on educational sessions at his barbershop and at his church. She also is working with other shops and salons to educate the proprietors so they can inform their clients.
“I think the first step is making sure they know that colon cancer is preventable,” she said. “We’re reaching out to barbers and beauticians in the city to train them to be able to talk to their clients so that will overcome some of the mistrust. These trusted people will be able to give them that health information.”
Marino said that transportation and having to take a day or two away from work or family to prepare and spend the rest of procedure day resting can be barriers. The Cancer Services Program of the Finger Lakes Region can connect individuals with resources for screening.
Colonoscopy when recommended by a doctor and when appropriate by age is covered as a preventive screening at no cost to the patient.
Some people have reported receiving a bill if polyps are removed during what initially was a screening colonoscopy. If a patient has a health plan that is required to cover preventive services in full under the Affordable Care Act, there’s likely no cost-share applied for the actual screening colonoscopy if a polyp is found and removed, according to a spokeswoman for Excellus BlueCross BlueShield. Patients with questions should contact their insurer and their doctor. For patients who believe they have been inappropriately billed, there is an appeal form at www.getscreenedrochester.org/appealing-colonoscopy-charges/
Black men are 20% more likely to develop colon cancer and 40% more likely to die from the disease than members of most other groups, according to the American Cancer Society.
Lightfoot, City Council vice president, said he wanted to use his platform as a visible member of the community but also as someone who could be at risk of the disease. His conversation was edited for space and clarity.
What do you see as barriers to colon cancer screening?
I’ll speak to my father because my dad, I believe his cancer could have been diagnosed much sooner and could have potentially been treated and he may have even been a cancer survivor. There are a lot of fears around the medical system when it comes to Black and brown people, as a result of historically things that have been done to Black and brown people. … I believe that there is this stigma and or fear of getting bad news. No one wants to hear that, oh, you have two months to live or a year to live, or you have cancer. I think people’s avoidance is their way of not dealing with the reality of that. This is something that plagues the African-American community more than any other population. … I believe there is lack of education, a lack of knowing how significant of a disparity it is between people of color and others when it comes to, uh, prevention around cancer.
Is there something specific to this procedure because it involves an internal examination of the rectum that may make men hesitate?
I would say that could possibly be true. I’m speaking from a perspective of the barbershop, thinking about sitting around a barbershop and having a conversation about this, that I would hear the phrase of exit only. … That’s probably true that there’s definitely some stigma and/or fear around people feeling like they’re being violated in some way because they are being sedated and something’s being protruded into the space that they may view as exit only.
Were those your thoughts?
I am one that probably would have said that myself, that no way that’s exit only. … But I had to consider the risk versus the reward. And for me, especially after this pandemic and all of the things that we’ve learned around the disparities that have been exacerbated because of the pandemic … I felt like I wanted to be in a position where I’m doing all that I can to help anyone, but especially people of color to be as healthy as they possibly can be.
Did you have any particular concerns about undergoing a colonoscopy?
I had a lot of fears. I’ve never been in a hospital. I’ve never had stitches. I’ve never had a broken bone. I had never been in a hospital like that and had any type of procedure done to me. So my biggest fear was being that … I’ve never been put asleep. My fear was more in the sedation than it was in the colorectal procedure.
What do you remember?
The nurse talking. I had an IV put in my arm. I remember being told to like lay on my side and they asked me a couple of questions. The next thing I remember was I felt a hand on my arm and I looked up and I could see the machine. And the doctor said you’re going to feel some pressure. And I believe at that time he was removing the device. I didn’t feel any pain, but I did feel pressure. And they said. ‘You’re done.’ And I said, ‘That’s it?’ I didn’t feel any pain. I didn’t even remember falling asleep.
How are you talking about colonoscopy to educate others?
I’m a pastor too, so not only in the shop, but also in my church. I had Dr. Marino come in and do a PowerPoint session during one of our Bible studies on Wednesday night. Several of my members of my church had already had the procedures. Some of them went and got it. And some of my barbers got it too, before I did. Everybody that went came back with the same story – everything went good. That built up my confidence.
What is people’s reaction when you talked about colonoscopy?
They listened. Some said, ‘Nah, I ain’t going to do that.’ And then there were others, like, ‘You know what, give me the information Willie. I’m gonna look into that. I need to do that.’