Episode 5: The Personal Cost of Cancer Disparity

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Kim Washington: It's such a treatable disease that you can prevent so much pain and struggle when it comes to that cancer journey.

MILLICENT: I'm Millicent Ruffin and you're listening to Vital Voices, a podcast from Corning Incorporated - where we explore ways that companies can be a force for good in their communities.

SISSY: My name is Sissy Siero. I’m Millicent’s co-host. In this season, we've covered a lot of topics around health equity - and this episode will be no different. This time we're going to hone in specifically on something that came up in our last episode about health equity research.

Dr. Sanchez Vega: My group has been working on genomic characterization of colorectal cancer for several years now, and until now we were always focusing on, you know, whether or not we could identify some mutations or some changes in the DNA. And at some point, we found that race seemed to be playing an important role - that when you compare the survival for self-reported Black patients versus self-reported white patients, we were seeing that the Black patients were doing significantly worse.

MILLICENT: That's Dr Francisco Sanchez Vega. He is the first recipient of the inaugural Corning Memorial Sloan Kettering Health Equity Research Fellowship, and he's doing very important research on colorectal cancer disparities. And that's exactly what we'll be digging into in this episode.

SISSY: Yeah, and to learn more about the inequities in colorectal cancer we reached out to Dr. Charles Rogers as well. He has a PhD in Health Education and Behavior from Texas A&M University and is an Associate Professor at the Medical College of Wisconsin. He's also a behavioral scientist and a master certified health education specialist.

Dr. Charles Rogers: I'm not your average behavioral scientist. Some people actually feel that I'm more of like a social justice advocate because you'll find me everywhere.

SISSY: In his work, Dr. Rogers goes out into the community to spread awareness about colorectal cancer - also known as CRC or colon cancer. His interest in this disease started with a personal loss of his own.

Dr. Charles Rogers: So I grew up in rural North Carolina. In my community, you know, in terms of cancer, I only heard about breast cancer for Black women and prostate cancer for Black men. Well, in the summer of 2009, my family was having a family reunion and so what we had noticed that summer is that my aunt had lost a lot of weight.

But we figured that, you know, maybe she's just eating better, et cetera.Well, about three, three months later in the fall of 2009, my aunt gets really, really sick She goes to two major healthcare systems in North Carolina to be misdiagnosed five to six times to find out that she had stage four colorectal cancer. I'm like, colorectal cancer, colon cancer, what is that?

SISSY: That moment put Dr. Rogers on a path to discover just how stark colon cancer outcomes have been for the Black community and for Black men in particular.

Dr. Charles Rogers: At that time if someone was diagnosed with stage four, you had a less than a 10% chance of survival. But if you were to be diagnosed with stage zero or one, you had more than 90%. Colorectal cancer, what we like to say, it's a preventable, beatable and treatable cancer with screening. So it's one of the few cancers where, like, you literally can save your life.

I've been looking at CRC among Black men because until this year, Black men have had the highest chances of being diagnosed with CRC and dying from it compared to everybody, for more than 30 years.

It wasn't until this year that American Indians, Alaska natives are now number one.

I did this intensive health disparities immersion program during the first summer of my PhD program in Michigan.

When I was there, I was working with a chief colorectal surgeon by the name of Arte Moore. She's now in Stanford, but she was trying to figure out why Black people would get surgery, but they wouldn't get chemo for colorectal cancer. And she was hypothesizing that potentially there was something happening.

When Black people heard that they got it all, the doctors say they got it all, that was enough for them to not do any more follow up care. And so when I looked more in the literature, I saw first that if you had a poor white male and a poor Black male that got surgery but were recommended for chemo, the white male would go and get the chemo because he felt that he needed to make sure that indeed got it all to stay around for his family. Versus the poor Black male will stay at home and work because he felt that it was more important to work to support his family that way.

I was really starting to learn the importance of social determinants of health. And those are the things that impact us every day that some people don't think about - in terms of if you have a job, if you have health insurance, if you have, like, green ways to walk on, if there's pollution in your area. These are things that you have to consider and how they impact the health.

So I started to see those unique differences between Black and whites.When I first saw that, and this was 2011, I had a 52% higher chance of dying from colon cancer than a white man. And I was like, cause you know, you earn a PhD, you want to find a gap in the literature. And I saw that no one was doing anything to solve the problem.

MILLICENT: So what's so obvious in Dr. Roger's comments is that the determining factor for choice of treatment is not always driven by the doctor or the oncologist's recommendations. Or even solely by a person thinking, “Hmm, what is best for my personal health?” But these decisions are more broadly influenced by ‘what does my environment afford me right now’? And what I mean by this, is that even with all the data that we've been talking about around colorectal cancer being the number one killer for Black men for almost 30 years. You know, factors like, which option allows me to work a little bit longer or put another way, what keeps me out of work for the least amount of time so I can provide for my family?

Or which facility can I get to that's gonna treat me with respect? Or how can I get screened quickly? Like all of these things factor into the decisions that get made. And so when we think about the importance of raising awareness, yes, that is step one. But we also have to consider the whole ecosystem of decision-making. And so now we're onto step two, and that's all the factors that go into that decision-making that actually get someone to take the test. And that's why Dr. Rogers' research is so vital.

SISSY: Yeah, and, you know, we'll hear later from Dr. Rogers about his mission to spread awareness about colon cancer and the importance of life-saving screenings. But first, we wanted to give some time to the real personal cost behind some of these figures we'll be hearing in this episode.

MILLICENT: In the Corning family, we experienced the loss of friend and colleague Leon Washington back in November of 2021. He worked for Corning for over 20 years. Leon's wife, Kim and his close friend Donnell, were gracious enough to talk with us and share a little bit of what Leon was like and also about his cancer journey.

Kim Washington: My name is Kimberly Washington. Leon was my husband for 21 years. In 1997, I interned in Corning. And we were in the same group. That's when we met.

Donnell Walton: Leon Washington and I were friends since I came to Corning back in 1999, and I met him through his then fiance.

MILLICENT: This is Dr. Donnell Walton. He's the director of the Corning West Technology Center in Sunnyvale, California.

Donnell Walton: I met his fiance, Kim Pete at the time, when she was a graduate student at Howard University, which was my first job teaching in the physics department there. She said, oh yeah, you're gonna love meeting my fiance, he's one of your fraternity brothers. We're in the same fraternity. I went to North Carolina State undergraduate, that's where I joined the fraternity. And he went to Tuskegee University. That's where he joined. We became super close immediately.

While we were in Corning, we all discovered cycling together. Kim, Leon, and I went mountain biking multiple times and Leon and I went road biking a lot.

Kim Washington: There's a bike shop here who used to have Saturday morning rides. Now we were in totally different groups because he could do the long rides and I couldn't do the long rides. And you know, he was always much stronger, much faster than me. So he didn't like riding with me. But we would go and [laughs] join our groups.

Donnell Walton: Leon, another friend of ours, and I went down to the Pennsylvania Grand Canyon to mountain bike on this, uh, trail that was a race trail. It was like 11 mile figure eight. So it's 22 miles in total. But there's one part of it that was a very challenging downhill. It was called The Stinger, and it was basically just a, almost a vertical rock bed. It was just a riverbed.

And so we were, you know, climbing and doing all this stuff and it was a lot of fun. And then we got to The Stinger and Bo and I just kinda like, just launched into it. And of course Bo and we, we, toward the middle of it, we noticed that, uh, there were hay bales that were, uh, tied around tree trunks.

So we kind of had an idea what was going, what was coming up. So we both kind of, you know, went up, endo and landed and fell and everything, and Leon just slowly got to it and clipped his, uh, shoe out and started walking. So he just, he's like, I, I'm not doing that. So, yeah, he was just super level-headed, you know, just not, no, no, no, thanks. He, he saw us go head over heels laughing and he is like, nah, just, uh, I'll, I'll walk down. I don't need that excitement.

The main thing I would describe Leon is, he rarely spoke a lot. But he made, he definitely moved conversations forward when he did, and he was a tremendous listener. But he was, uh, you know, great sense of humor. Lots of thoughts brewing beneath the surface,

And he didn't volunteer things, but he was so engaging when you got him talking, it was great. So, deep thinker, cared deeply about things. Loved his family, loved his friends. Just a really, just a really good guy to know.

Kim Washington: We started this in 2017. That's when Leon was diagnosed with cancer and he was 47.

He was having pain in his stomach and I would notice that he was always walking around and just kind of rubbing his stomach and so I asked him about it and he just told me it was a pain. You know, one of the other things that I had noticed, we were at the table one night and I was watching him eat. And his, his eating habits didn't change. He was eating, you know, about the same amount of food that he always ate. But I noticed that he seemed to be getting slimmer. And then on top of noticing him always rubbing his stomach, I was like, you know, I, I think you really need to go and see a doctor.

And so he went to see a doctor and of course he came back and the doctor told him to increase his fiber in his diet. And so we did that for a few months, but nothing seemed to change. And so he went back to the doctor to see him again and I asked him, you know, when you go this time, ask him if you can do a colonoscopy.

And so they go, went on and scheduled his colonoscopy. And when we had the colonoscopy, they found that he did have cancer. I noticed that he was losing weight probably around Easter time, so probably about April and he went and he had the colonoscopy probably in August of 2017. So it was about six months difference.

We thought it was stage three. We were kind of hopeful that it was stage three. And we thought that because it seemed to have been localized around his colon, and it did metastasize to some of the lymph nodes, but, it didn't seem to be anywhere else. And so at that time, we thought it was stage three.

So we did the surgery. And then you go onto the chemotherapy, which is the FOLFOX. And after that we thought we were done.

MILLICENT: FOLFOX is a chemotherapy regimen for treatment of colorectal cancer. And it’s made-up of a combination of chemotherapy drugs. Often FOLFOX chemotherapy takes place after a primary treatment, such as surgery.

Kim Washington: After we finished that round he had his next set of scans. That's when we found out that the cancer had metastasized. So we found out it had metastasized to his lungs as well as his liver.

It was every six weeks that you get your scans. And so you do that last chemo session and you're thinking that everything's great. Okay - I'm done with chemo. It's kind of knocked it out. I'm not gonna have to deal with this anymore. I'm not gonna have to have anymore chemotherapy. But then, you know, every time you have a scan, then you, you worry about what, what's gonna come out of that scan. It's nerve-wracking.

It's a scary journey. But, you know, hope is a beautiful thing as you go through this journey. And so that kind of branched us out into seeing a few other doctors to talk to them about options also.

We did start to do trials. There's a number of trials out there, but I don't know, the trials, you have to be very selective and, they're limited spots available for a number of trials. The trials are in different states in some cases.

We actually switched over to MD Anderson, though, for the trials. I think we started getting a lot better results.

MILLICENT: MD Anderson, otherwise known as the University of Texas MD Anderson Cancer Center in Houston - is the largest cancer center in the United States.

Kim Washington: So we also had three young kids, we don't have family around. So making that decision, it took us a while to make that decision, to make that leap to MD Anderson. A lot of it had to do with, you know, just our family situation.

This was a four year journey for us, and so this was probably into year three, because I would say was probably the last year that we started going to MD Anderson.

They wanted him there for like four days in a row because he would have treatment like three to four days in a row. And then they wanted to do some type of testing on the final day. So we would stay there for a good portion of the week and then come home.

We've been working for Corning for so long that they were extremely supportive of what we were doing with Leon and his cancer journey.

Whenever he was on the treatments, yes, they would be difficult. The thing about, you know, each one of these treatments, there was some side effect that we was always dealing with. But you know when you get to the end of those weeks before he goes into the next treatment, he was always feeling a little bit better.

They would always recommend in between treatments or at some period after he's been doing treatment for some period of time that he takes a break. And so those breaks were wonderful and that's when we would plan our vacations and we'd be able to go somewhere and get out and just kind of get away from it all. So we would always go to the beach, you know, to the Caribbean somewhere.

We kind of sheltered the kids from it. We did most of those treatments here close to home, but mostly they would be in school. And we would do all of these things during the day, and so I, I think the biggest difference for them was that, they recognized they didn't see him as much.

Donnell Walton: I heard Leon's voice a lot more toward the end of his life than probably the rest of it combined for me.

MILLICENT: Leon's friend Donnell Walton again.

Donnell Walton: We talked a lot about some of the experimental treatments he was taking and looking those up toward the end, he was using a low frequency electromagnetic, magnetic treatment that was showing that it was actually shrinking the tumors. So, so we were kind of going through that together, and that's going to different trials and we were talking about those.

So, yeah, that, that's what the conversations were. They were, we'd talk about books, we'd talk about work, we’d talk about maybe movies, and we talk about these treatments. And I just kind of follow his lead, toward the end. What did he, what did he want to talk about?

You just wanna be with, and you just wanna be there how they need you. Um, and it's, it's, it's a pleasure to have that time.

When you lose someone that close, you're, it's always going to hurt. Just maybe the frequency of the hurt isn't as much, but the intensity can be overwhelming. There have been so many times, you know, since Leon's passing that I've just started writing texts like, oh man, and then I just stopped, right. Because I'm gonna, he's like one of the only people that I could share something, whether, you know, absurd in an existential way. Something that's, you know, and, you would have no time to give anyone the context, right, that he already had for these things.

So it, yeah, definitely comes in waves. Grieving is one side of a coin, and the other side of the coin is, is gratitude.

Kim Washington: It just takes time. It just takes time. So some days it still feels fresh and others it's a little bit easier to deal with.

MILLICENT: Today, even while navigating her grief, Kim recognizes that there’s still so much more to do when it comes to colon cancer.

Kim Washington: People need to know more about it. People need to understand it and understand that if they are able to go ahead and get treated. It's such a treatable disease that you can prevent so much pain and struggle when it comes to that cancer journey.

SISSY: I was so, you know, gobsmacked honestly, hearing their, the way they talked. You know, and hearing how, how frank and honest and vulnerable they were with us, because I didn't expect that. I didn't know actually what to expect. You know, when you talk to people who've had such a terrible loss.

MILLICENT: Mm-hmm.

SISSY: You know, none of this is easy to hear, nor ask, nor share. But I think these experiences are truly what opens people's ears up and their hearts up and will make the difference, you know. I think there are gonna be people who actually have their lives changed, their health outcomes changed because of listening to this, especially I think, this episode.

MILLICENT: You know, Black Americans have one of the highest chances of getting and dying from colon cancer. 20% more likely to get colorectal cancer, 40% more likely to die from it. And so the importance of spreading awareness, it just, we can't overemphasize it. But even with all of that, in 2021, only 58% of Americans overall were screened. And so screening rates, in general, are very low.

SISSY: So it's no wonder that spreading awareness for colorectal cancer is something Dr. Charles Rogers is passionate about.

Dr. Charles Rogers: You can see me in the community doing community engaged work, reaching men where they are, whether it be at a barbershop or at a church, or at a basketball game or even a bar on Super Bowl Sunday,a house party, wherever guys are, you can find me there. A lot of my work has looked at how masculinity and masculine role norms keep guys from going to the doctor. If you can't get a guy to get the doctor, you're definitely not gonna get 'em screened.

SISSY: A colonoscopy is a procedure where a doctor or a health professional uses a long, flexible tube or colonoscope, and it goes up into the colon and it enables them to see and navigate through to see if you have polyps or if there's any ulcers or cancer.

Dr. Charles Rogers: And even with the screening piece itself, you think about that people think the colonoscopy is the only option. A lot of men may have a, you know, be opposed to that substantially in terms of it may make them feel like it's violating their sexuality.

Or even going on the other side of I'm so tough, I don't need to go to the doctor. Or I'm so tough, I'm not going to the doctor until my eyeballs fall out. Those are all complex things that, that work together to contribute to a big problem or even bigger problem to make the problem even worse.

By me just taking the time to try to explain to them in a way that they understand, it always makes a difference. So many people are so busy that are not willing to take the time to make that connection that's necessary to have those relationships to impact change.

SISSY: We were curious about what these interactions looked like. So Dr. Rogers broke it down for us.

Dr. Charles Rogers: Say I want to work with a barbershop here in Milwaukee.When I go to the barbershop, I'm going to the barbershop as Charles, I'm not going to Dr. Rogers who has all these degrees. I'm going as Charles, who is a Black male from rural North Carolina.

And so when I sit in the chair, they may learn really quickly, my “status”. But they don't take that from the conversation. They take from the conversation real quickly that he's talking to me just like he's like me. There's people that have done research on something that's called Brotherhood. And the brotherhood is that like, regardless of your background, when you see another Black guy, you automatically are connected because you know you have some similar lived experience.

And so for me, with my work, when I go to a barbershop for the first time, trying to go as informal as possible, where it may be some jeans, a t-shirt, and some Jordans or some other fancy tennis shoes. People automatically connect with me because I come to them as a person. A lot of people unfortunately see people as human doers instead of human beings.

But when you slow down and take the time to approach people as human beings, it's a game changer because you can literally just have an organic conversation where before you know it, you're potentially saving someone's lives or someone connected to that person.

SISSY: These life saving interactions will become even more critical in the coming years, given predictions of CRC becoming an increasing health challenge.

Dr. Charles Rogers: Today colorectal cancer is projected to be the leading cancer killer among people ages 20 to 49 by 2030.

SISSY: According to Dr. Rogers, the reason behind these figures is unknown.

Dr. Charles Rogers: It's like this black box that people are trying to figure out. You can be living your best life and be very healthy and still wake up and have stage three or four colorectal cancer.

And I know this cause I know these people, that have just did a marathon in their best shape. And then they get sick and they found out they have colorectal cancer. And so there's things that we are potentially thinking can contribute: the obesity epidemic, smoking, not being physically active, being obese. Some people think it may have to relate to like what people are actually eating, and there's some interaction that's happening with the gut. But again, ultimately people don't, we don't know.

So that's why I've been trying to advocate for screening for younger people and make sure that more people are aware because it's a huge problem.

SISSY: Colon cancer has long been thought of as an “old person’s disease” - but that’s far from the reality. In 2021, the U.S. Preventive Services Task Force issued new recommendations for colorectal cancer, lowering the recommended screening age by 5 years.

Dr. Charles Rogers: 45 is a new 50, 45 is now the recommended screening age for colorectal cancer. But if you have a family history, you should get screened 10 years before the person in your family was diagnosed. So for instance, if you're my aunt and you're, say you're 27, I should in theory, get screened for colorectal cancer at 17.

So that's the thing is like cancer, it doesn't discriminate. And unfortunately, like I always say too, that that cancer can be a word, not a death sentence. But for that to be the case, you have to be very intentional.

SISSY: You might be asking, what should I be looking out for? The thing is, you may not even experience any symptoms when it comes to colorectal cancer. But if you do, it could present in a variety of ways...

Dr. Charles Rogers: If you have blood in your stool or you haven't been able to have a bowel movement in like three days and you're usually pretty regular or your poop is a, is the size of a ink pen or a pencil or you're having lots of cramps and you know, you're not on your cycle or you're not a person who has a lot of stomach cramps.

Those are your, that's your body trying to say like, “Hey, something's wrong”. And if that's the case, you should go see a doctor. And if the doctor isn't trying to give you the results that you want, like you want to get screened, then go see another doctor. I know people who were younger than the previously screening age of 50, like, you know, potentially in their twenties, who've had to see 20 doctors before they got a doctor who was able to see them - to ultimately diagnose them with stage three colorectal cancer. The providers or you know, people in the hospitals, et cetera, they work for you. You don't have to just go to one person. You can go to another person anytime.

SISSY: Of course, if you’re under the recommended age and you're able to jump through all the hurdles of going through many doctors just to get approval, the screening itself may actually be difficult to get these days.

Dr. Charles Rogers: What I'm seeing right now is a lot of people are backed up because of COVID and it's taken a lot of work to get scheduled, even for screening for one. And then two, because of the pandemic, a lot of places are understaffed. And so you combine that, people are like, forget it, I'll just continue to wait to get screened.

SISSY: Dr. Rogers is 40 years old and because of his family’s medical history, will be getting a screening this year.

Dr. Charles Rogers: For my case, I'm not sure what's gonna happen, but what I do know is gonna happen is I'm gonna get screened. If that means that I have to pay or if that means that my insurance covers a portion, I don't care. I just know I'm gonna do what I need to do to get it done. Because at the end of the day, the best screening is the one that gets done.

I’ll also note that colonoscopy is definitely the gold standard, but there's other options too. You know, there's stool-based exams that are less invasive. You can do it in the privacy of your own home. You don't have to take off work, they're cheaper if insurance is a concern. They look for blood in your stool. The thing is like those are, are not one and done. If you were to indeed have a positive stool-based exam for colorectal cancer, you would indeed, after that have to go and get a colonoscopy. Something is better than nothing.

MILLICENT: Dr. Rogers makes so many good points, and I think that it's so important to be aware of all of the, the points where we could lose people in the screening process. And so because, you know, there's already a somewhat negative view of screening, any obstacle, like having a long wait time or having to go multiple times to try to get an appointment. Any, any bit of resistance could be just enough for someone to say, no problem. I'll, you know, I'll just do it later.

SISSY: Right. Or paying out of pocket too.

MILLICENT: Or, or paying out of pocket.

SISSY: For how expensive it is. Right. Right.

MILLICENT: Exactly. For, for something that is very, very expensive. I'm really glad that the medical community has brought cheaper, more convenient options like stool-based samples that can be done at home. And provide, you know, easier access, but also the privacy. And so that helps to get over some of those initial hurdles that Dr. Rogers just shared.

The thing that gives me hope is that there are researchers out there like Dr. Sanchez Vega, like Dr. Rogers, who are committed to studying the causes, both genetic and socioeconomic as well as behavior, and focused on closing the gap and focused on making a difference in our communities.

SISSY: Absolutely. And you know, this is our final episode of Vital Voices, Millicent, season 2.

MILLICENT: I know, I know.

SISSY: Can you believe it? It just goes by so quickly.

MILLICENT: It does.

SISSY: You know, and for me, when I look back on this season, I’m reminded of how everyone we spoke to, how courageously they shared. They’re so generous, you know, in their spirit and their stories. It was just beyond touching to me.

MILLICENT: Yeah, you’re right, Sissy. And the thing I really enjoy about us doing this together and being on this journey together is that we get to meet these incredible people and hear their stories, and for a moment in time, we get invited into the most impactful and even pivotal point in their lives.

SISSY: Right. It’s a privilege.

MILLICENT: And so when we open up ourselves and when we allow ourselves to be vulnerable to actually hear and understand and empathize with someone else's story, to value their voice. That is the beginning of change happening.

SISSY: That’s so true, so well put. That really hits me in the heart.

MILLICENT: You know, when I think about our office, in the office of ORESU, and, and our ‘why’, you know, why do we do the work? Why do we do the podcast? Why do we tell these stories? The whole goal is to give everyone every possible opportunity they have to live a better life. And whether that is through getting access to care, whether that is helping doctors understand how to treat people with respect and dignity when they're administering care. Everything we do every day matters. Even listening to this podcast makes a difference.

And so to our listeners, I want to say thank you. Thank you for going on this journey with us in season 2 and please consider sharing these stories with your friends, with your professional network. And if you want more information about what we’re doing here in the Office of Racial Equality and Social Unity at Corning Incorporated, click on the links in the show notes.

SISSY: And of course, remember, you can find and listen to the entire season of Vital Voices wherever you get your podcasts.