Patient Perspectives: Young Father Overcomes Colorectal Cancer

Podcast Transcript

Dr. Scott Steele: Butts and Guts. A Cleveland Clinic podcast, exploring your digestive and surgical health from end to end.

Hi again everyone, and welcome to another episode of Butts and Guts. I'm your host, Dr. Scott Steele, the president of Main Campus here at Cleveland Clinic, in beautiful Cleveland, Ohio. And today I am super excited to do one of my favorite type of episodes, and that's where we truly have a Cleveland Clinic patient story and this one, we are absolutely welcoming Mr. John Johnson, who is a recent rectal cancer patient here at the Cleveland Clinic, and it's really about a young father who's had the ability to overcome colorectal cancer. So, for all the listeners out there, it's important to understand the background. So, the American Cancer Society reports that rates of colorectal cancer in people younger than 55 years old have been increasing by one to 2% each year since the mid-1990s. Think about that.

So, to combat this alarming trend, the US Preventative Services Task Force lowered the age at which it recommends colorectal cancer screening from age 50 to 45. Colorectal cancer does come with warning signs and knowing what those are, they're key to catching cancer early and increasing the chances of a successful outcome. So again, today we're joined by Mr. John Johnson, a recent rectal cancer patient here at the Cleveland Clinic, who we are excited to have on the podcast today to share more about those warning signs that he noticed, his treatment and the advice he shared with others about his experience. John, welcome to Butts and Guts.

John Johnson: Hey, it's the best show I've ever been on. Butts and Guts. I love it.

Dr. Scott Steele: Fantastic. And we also have Dr. David Rosen, who's a colorectal surgeon and our section head of the west side within colorectal surgery department at the Cleveland Clinic, who actually helped treat John and works with colorectal cancer patients daily within our Digestive Disease Institute. David, welcome to Butts and Guts.

Dr. David Rosen: Thanks so much for having me. Pleasure to be here.

Dr. Scott Steele: So, John, we'll start with you. We always like to ask all of our guests to tell us a little bit about yourself, so if you can give us a little bit about your background.

John Johnson: Background. Born and raised in Cleveland, Ohio, west side of Cleveland, West 69th and Detroit. Youngest of four, raised by a single mother. Never knew my father. Went to Kent State, got my master's in architecture and my MBA. Left Cleveland, gave my family two weeks notice, moved to Phoenix, where I really found myself as a man. Moved to Seattle with my wife, and then moved back here to Cleveland about three years ago. Got two kids, my daughter Vivian, and my son Theodore, and I run a design agency called A Small Studio, where we help people understand who they are and how to translate that into the marketplace.

Dr. Scott Steele: Well, that's fantastic that we have you back here in Cleveland. And David, why don't you give us a little bit about your background, where you're from, where'd you train, and how'd it come to the point that you're here at the Cleveland Clinic?

Dr. David Rosen: Yeah, I'm from Dartmouth, Massachusetts originally. Kind of went all around for my training, did my general surgery training at University of Southern California in Angeles, followed by my colorectal surgery fellowship, Washington University in St. Louis. And then you hired me as my first job at a fellowship here at the Cleveland Clinic. I've been here now, this is my seventh year of practice. Like you said, I'm the section head of our division of colorectal surgery at Cleveland Clinic Fairview Hospital, where we're the main hub of serving the west region. And it's such a joy and honor to take care of all colorectal patients, and certain ones certainly stick with you and sometimes even become an amazing friend, like I have with John here.

Dr. Scott Steele: Well, David, we're glad that you accepted that offer to join us here and for the both of you, thank you so much for joining us on Butts and Guts. John, I'm going to start with you. Can you share a little bit more about your lifestyle leading up to this unfortunate diagnosis of rectal cancer?

John Johnson: Yeah, I think it was 2019, I went vegetarian completely. My whole life, I've been active. I started running when I was probably eight years old with my sister, who was a track star at Collinwood High School. I've always been active, I've always been fit. Played rugby for 10 years in Arizona, in 105 degree heat. Leading up to the diagnosis, I actually was training for my second marathon, actually training for a three-hour marathon so I could qualify for Boston. I ended up running that marathon in 3:04, so I actually qualified in my age group because I had just turned 35. I was in the best shape of my life.

Dr. Scott Steele: So, what was your first indication that something may be wrong?

John Johnson: I started finding blood in my stools. At first I thought it was beets. Was like, "Did I eat beets? Nope, I didn't eat beets." And then I found it again, and I started seeing it over and over again. Sometimes there were more blood than others. I told my wife, and we were like, "Probably just need to get that checked." But as I said, I was training for the marathon, so thinking that it was cancer and even just with my lifestyle, I didn't have a doctor at the time. So about two weeks before the marathon, I went to the doctor, and they scheduled me to go see a gastrologist.

Dr. Scott Steele: So, John, a lot of times, especially in patients your age, when you get these type of symptoms, one of the first things that comes to mind is, hey, I just got hemorrhoids. Or like you said, I was training for a marathon, I'm working too hard. Something's kind of going on, I ate something, go from there. Was it really your wife or was there something inside you that prompted to say, hey, listen, this is a good idea that I get this checked out even if I'm on the brink of what an unbelievable accomplishment to run that 3:04 and to be able to be ready, set to go to do something like the Boston Marathon that's been a lifelong accomplishment?

John Johnson: That's a good question. If I reflect on that question specifically, growing up, even as a young man, I didn't have health insurance. When I was in college, I didn't have health insurance. My first couple years out of college, I didn't have health insurance. And I think that that's a common thing unfortunately, especially when you grow up poor and your parents don't have a job, or they don't have health insurance to give to you.

So, as me and my wife has grown and we've had the luxury of having great benefits, she works for Amazon, so we have some of the best benefits you can get, I don't give it a second thought anymore to go to the doctor and to get checked. It's like I have that privilege, why would I give it a second thought? So, I think because of my upbringing, that's why we were like, "Just go to the doctor. Just go get checked." And I even took pictures of it just because I am like, "I don't know if they're going to believe me. They probably need proof." But I think my upbringing helped me be more willing to go get checked, even if it's just a slight hemorrhoid or anything like that.

Dr. Scott Steele: So, John, walk us through if you can, about that process of being diagnosed. What was that like? And if you can think back at that time when you underwent a scope and they kind of told you that indeed they found something there, what was that like?

John Johnson: Well, I scheduled my colonoscopy for I think, 6:00 AM. I didn't even have my wife take me, I had a friend take me to the procedure, just routine I guess, get in the gown, all right, we're going to do this thing. Once again, nothing in my mind, thinking that I was going to come out of it with cancer. Dr. Naeem was incredible, just great energy. Even the staff was great, and I remember that very well. They created a place of peace for me going into that procedure. And going into procedure, I told Dr. Naeem my time because we had talked before that about the marathon, so it was very relaxed for me. Then I went under, came out and within five minutes, Dr. Naeem came in. He didn't beat around the bush. He's like, "Hey, I've been doing this for a long time." He said, "We found a mass and I'm pretty sure it's cancer."

I've reflected on this moment a lot over the last year or so, even with Dr. Naeem and Dr. Rosen, and the first thing that came out of my mouth was, "Should I tell my wife?" And the second thing was, "How do I tell my wife?" And that was it for me. All that came to my head when I found out, was my wife at home with our one-year-old daughter, and how am I going to navigate this with them and how are they going to take it? I really wasn't thinking about me at all in that moment. For me, I wasn't afraid. I was more concerned at how we were going to go through this together. Honestly, I was shocked. I came home, I told my wife, and she did not believe me, and immediately she starts crying. It was at that moment that it became real.

And I think in hindsight, and especially having Dr. Rosen on this recording with us, Dr. Naeem and Dr. Rosen were texting or communicating almost immediately once he found the mass, and Dr. Naeem was able to get me in touch with Dr. Rosen, and I was in Dr. Rosen's office within 24 hours the next day. And there's something about knowing that you're taken care of that helped, and that was all within 24 hours of finding out that I had cancer. And that I think, alleviated a lot of worry in my wife, especially meeting somebody like Dr. Rosen that quickly and being close to the Cleveland Clinic, in our hometown, there was a reason why we moved back here.

So, all of those things, it was a balance of shock, but also, I want to say empathy and just thinking that my kid's going to grow up without a father like I did. But then also, just having these two incredible doctors around me, that I could tell weren't going to be looking at me as a victim or just as a patient, but they were going to help me really work through this as a warrior, and that was really special to have.

Dr. Scott Steele: Well, John, that's incredibly powerful and we thank you so much for just sharing that with us. So can you walk us through the treatment and recovery process then? How that process went, your journey through that, and then kind of recovery along the way, to get to the point where you are now?

John Johnson: Yeah. So, after the meeting with Dr. Rosen the day after I found out about the cancer, we had to do the CT scan, and we had to also do the MRI, to really get the diagnosis. So, it was actually on my wife's birthday that Dr. Rosen called us and told us that it was stage two. And it was at that point, once we found out the stage, that we were actually able to put together a treatment plan, which was going to be five weeks of radiation, five days a week. So, 25 treatments of radiation and with I think a small dose of chemo or low dose chemo, and then four months of chemo, eight treatments. Honestly, it was a shock for me that that was how long the treatment was going to be, but I was like, "All right, let's do this thing."

And honestly, I look back, I didn't have any concerns if treatment. That route was going to be right, I just had so much trust and faith in Dr. Rosen. I don't know, I was like, "We're good" that we're going to do it that way. And here I am, the tumor was gone and I'm in recovery in a watch and wait program. So, in hindsight, I think that was a beautiful thing. Radiation. The beginning of radiation, the first couple of weeks was easy. I'm an entrepreneur, I run my own business, so I was able to carve out that time, put in my calendar. That's what I'm doing every day. All right, cool. After about, I want to say week three, it got hard. I describe it as the worst pain in my life. Bowel movements were intolerable. I dreaded going to the bathroom during that time. At a certain point, it was very hard to sit, and at a certain point, honestly, it was just hard to even be awake because the pain was so bad.

At one point, my wife had to drive me to the treatment because I just couldn't and actually I remember, I curled up in a ball in the trunk just so I didn't have to sit during that trip. And it was tough. The painkillers did not help. Yeah, radiation sucked. After that, me and my wife planned a vacation in between radiation and chemo, and I actually had to take a wheelchair to the airplane. It subsided maybe a couple days or half a week in, it finally subsided, and I was able to get back to normal. And then when I got back, they put a port in, and then the next day I started chemo.

So, chemo. Yeah, chemo was different. And I describe chemo, especially with my background and my story, chemo was the first time that I was physically handicapped from being able to do what I wanted to do. After a treatment of chemo, they would send me home with a bag, and that first treatment was the first time that my wife saw me throw up. In our entire relationship, 15 years, she's never seen me vomit, and she saw that that next day after my first treatment. However, it was five minutes away from my house. The nurses were spectacular. Olivia was my nurse, and she made it better. Every time I walked in there, those ladies and all the ladies in there were spectacular. I smiled just thinking about them, even though I'd never want to go back there again. And so it became a cycle, I went back every two weeks. The first weekend sucked. I couldn't get out of bed, it was hard to keep anything down. After that weekend, I went back to work and I worked through treatment. I worked every day through treatment pretty much, to try to keep my business alive.

And by a week later after treatment, I was usually back, but I still had a lot of sensitivity in my hands and my mouth and my feet, and that was all through winter, so that sucked. However, I was usually about 100% after the week. So I would have a week of 100%, and then I'd go back into treatment and the cycle would start over again. So as time went on, it definitely wore on me, however I look back on it, I was in the best shape of my life, not to run a marathon, but to get through that treatment. Because I couldn't imagine going through that treatment and not being in I guess, good physical condition, if that's what you can call it. Because it was a marathon in itself, and it was definitely the hardest marathon I've ever run.

So, after my last treatment, did my MRI, they found that the cancer was gone and there was no signs of it. And I had to wait a couple of weeks for Dr. Rosen to do a sigmoidoscopy just to really make sure. And yeah, the news came back, the cancer was gone completely, and now I'm on a watch and wait program where I have to get a CT scan every three months or six months.

Dr. Scott Steele: John, as an editorial note, we're so proud and so happy if you had to go through this journey, that you were able to get a complete response. And upwards of 30 to 40% of patients nowadays may get a complete clinical response like you, and then undergo a very pretty intensive surveillance program just to make sure that it comes back, but you get to avoid surgery, in that case. What would you say to a young person who may be on the fence about talking with their doctor or their family, or nervous about the colonoscopy screening procedure?

John Johnson: I'd say, just do it. I hate saying that phrase, but in this case, that's what needs to be said. Just do it. It's a very easy procedure, and it's not intrusive at all. It saved my life. And I had a call with somebody recently who's my age, who caught it at stage three, and he didn't have the same response, and he had to have surgery and had his whole rectum removed. And having the conversation with him, if I didn't go that year, I could not have a rectum right now, or it could have went even further. And I think that that's what I would say to any young person... This is actually why I'm doing this interview with you. I think it's time to start advocating for young people, because of what's happening and what we're seeing. Because 35-year-olds don't talk about colonoscopies. 35-year-olds don't talk about your colon, period.

And I think that that's a stigma, and I think it needs to be broken, and I'm on a mission to break that just by speaking and sharing this story. Because now I could talk about colonoscopies with my neighbor who's 65, and I just did that yesterday. And it's just common, it's okay, and it's actually a good thing, and it's not bad for you. Destigmatize this thing that it's a major thing, it's actually not that major, and it saved my life, and I've actually gained some really great friends because of it. So, I would just say that, go get it. The worst thing that happens is you catch it early, and that's what happened to me.

Dr. Scott Steele: Well, we're so glad that you did it. And so, David, we're going to turn to you now. And so, is there a clear cut reason why we're seeing an increase in these young patients?

Dr. David Rosen: I wish there was an easy clear-cut answer, because it's terrifying. The incidence of colon and rectal cancer, although it's decreasing somewhat, and we think because of screening in older patients, in younger patients, it's increasing and doing so dramatically. That's the reason the screening age has been lowered, as you mentioned in the introduction to this podcast, from age 50 to 45. But in some patients, we see it even younger, as obviously in John's case, at age 35. And it's terrifying because we don't know exactly why. There are a lot of things that we think contribute. We know there's a genetic component to colon and rectal cancers. We know that there are certain things that can help you lower your risk of colon cancer. I should say that we know that there are certain things that are associated with the risk of colon cancer, things such as a low-fiber diet, excessive consumption of red meat is thought to have a role, consumption of alcohol and smoking. All things that contribute to an increased risk of colorectal cancer.

We know however though, there must be more because we see more and more patients like John, that don't have any of those risk factors, yet is developing an early aggressive colorectal cancer. So, we think there are some environmental issues at play as well. Some of the bad foods that we all eat, the high fructose corn syrup and the highly processed foods, those all contribute. And we're looking at that here at the Cleveland Clinic and trying to investigate why, because it's a terrifying trend that we need to stop.

Dr. Scott Steele: So, John mentioned some of them, but what are other symptoms that young adults should be talking with their doctors about, specifically with regards to colorectal cancer?

Dr. David Rosen: Yeah, so bleeding is one, as John mentioned. Any changes in your bowel habits are definitely something that you want to pay attention to. It might be something as simple as increasing the amount that you go, the caliber of your stool might change, things might start becoming more narrow. You could be having constipation or diarrhea, things that just change. Those are all things to look out for. So, any change in your bowel habits, rectal bleeding, crampy abdominal pain. A lot of times the symptoms of colorectal cancer are very nonspecific and you can just write it off or attribute to something else, but it's really important not to ignore it, especially with this increase that we've seen in colorectal cancer in young people.

Dr. Scott Steele: So, you talked a little bit about some of the risk factors and then kind of the converse of that, some of the things that maybe they can do to lower the risk of colorectal cancer. But can you talk a bit about how family history may impact a person's risk of being diagnosed with colorectal cancer?

Dr. David Rosen: Yeah, so genetics, no doubt play a big role in colorectal cancer. And depending on what studies you look, it could be anywhere from five to 15 or even 20% of colorectal cancers could have a genetic component to them. So it's something that you don't talk about. So both my parents are physicians, and I was thinking as I got into this business, I have no idea what my parents' colonoscopy history is. I have no idea if they had polyps, I had no idea if they had any cancers. I really just didn't know because it's something that, like John said, is somewhat taboo to talk about. It's not the cleanest area of the body, not something that people enjoy talking about. And so even me as someone in the field, had no idea about my family history of potential colorectal cancer. And so it's really important to be open with your family in these conversations and really know what's going on.

Dr. Scott Steele: David, as we wind things down, I'll ask you the same question I asked John. And so for a young person who may be nervous about colonoscopy screening or reluctant to have that, what may be an uncomfortable conversation for them with their doctor, what advice could you share from a surgeon's end?

Dr. David Rosen: I think, and John touched on this a little bit, but the risk is so high of something bad that could be so devastating and completely alter and change your life. When you're young, you're flying high, nothing can bother you, nothing can hurt you. And a diagnosis like this that John got, completely restructures your life and changes things. So, it's important not to ignore any symptoms. It's important to be seeing a primary care doctor, which a lot of young people do not do regularly. And the thing is, although a colonoscopy, when you first hear about it, it sounds gross, but this is something that those of us that do it, we do them all the time every day, and we're really able to talk to you and make it a comfortable conversation, to really explain the purposes for it, and I think that makes it a lot easier of a conversation. And yes, you might be a little uncomfortable going into it, but the benefits far outweigh the risk when you're having any of these symptoms.

Dr. Scott Steele: And then finally, we mentioned a little bit about just like in John's case, that he had a complete response and didn't have to go surgery at all, that watch and wait, if you will, which is something that's relatively new over the last decade or so on this. But are there any other advancements on the horizon when it comes to colorectal cancer treatment?

Dr. David Rosen: Yeah, so we're investigating a lot of these things and trying to get to the bottom of the reasons for this early onset increase in colorectal cancer here at Cleveland Clinic. We're looking on a molecular basis, we're looking at various tissues. We're really trying to get to the bottom as to saying, all right, what's the next latest and greatest thing? How do we figure this out? There's advances in a different type of a medication called immunotherapy where certain types of colorectal cancers, if they have certain genetic mutations, can be treated very effectively with that. And there's also something called ctDNA, that has been coming out and is getting investigated to see if that's an early marker for recurrence in someone who's had colorectal cancer? And we could potentially use that to monitor someone, and even in the future, who knows if that would even become some kind of a screening mechanism as well?

Dr. Scott Steele: Yeah. And I would just mention also, there's everything about the microbiome too as well, right? The type of bacteria that's within our colon and see what role that plays. And so-

Dr. David Rosen: Absolutely.

Dr. Scott Steele: I'll make a difficult transition now, but we're at time for our quick hitters, where we get a chance to know each of our guests just a little bit better with some quick shots. David, I'll lead with you, but each question to you both. So what's your favorite food?

Dr. David Rosen: Pizza.

Dr. Scott Steele: John?

John Johnson: This is a tough one, being on this show. It was french fries until I got cancer. And now it is... What is my favorite food? I don't know. That's a tough one.

Dr. Scott Steele: We'll give you this one. John, what was your first car?

John Johnson: First car? Toyota Corolla.

Dr. Scott Steele: David?

Dr. David Rosen: Pretty similar, 1998 Toyota Camry.

Dr. Scott Steele: Fantastic. And so John, what was your favorite toy as a kid?

John Johnson: GI Joe's.

Dr. Scott Steele: David?

Dr. David Rosen: A Teenage Mutant Ninja Turtle pizza shooter, which my brother found on eBay last holiday season and got me the same edition, same version I had as a kid. And so now I've come full circle, and I still have it with me.

Dr. Scott Steele: That's fantastic. And finally, so name a place for our listeners out there, John, we'll start with you about a trip that you've been to, that is a must see, that the audience is like, "I should go there one day," or a place that you maybe want to go in the future.

John Johnson: That's the reason why I moved from Cleveland to Phoenix. Sedona. Sedona, Arizona is a spectacular, beautiful place. The Red Rocks, you can't beat it.

Dr. Scott Steele: David?

Dr. David Rosen: My wife and I have made two trips to Kauai in Hawaii, which is absolutely beautiful, and always have a special place to us. We did an open air helicopter ride there, that was both terrifying and exhilarating. So that was great.

Dr. Scott Steele: Fantastic. And so John, any final takeaways to our listeners regarding your experience as a patient here at the Cleveland Clinic?

John Johnson: Cleveland Clinic is one of the best hospitals in the world for a reason. But I think having somebody like Dr. Rosen, who's younger and I can relate to better, especially as a young, early-onset colorectal cancer patient, that changed my whole experience. And I think the Cleveland Clinic is recruiting some incredible talent to come to Cleveland to help people, and Dr. Rosen is one of them. So, I'm forever grateful and thankful to call Cleveland home, but also have Cleveland Clinic in my backyard.

Dr. Scott Steele: Well, that's fantastic. And I would be amiss if I didn't ask you if the marathon gave you a deferment so you can get back on it and run that marathon, get that sub three marathon? Are you able to do that? Is that in the future for you?

John Johnson: Well, Dr. Naeem is actually sponsoring me to run the Boston Marathon next year. So, I am running it, and I'm running it specifically to raise awareness for early onset colorectal cancer. So, I would love for the Cleveland Clinic to get on board with that, I think it could be an incredible campaign to change the face of colorectal cancer and start to address some of these things we've been talking about. So, sub three is on the horizon for sure.

Dr. Scott Steele: Fantastic. Fantastic. And David, any other final take home messages from you?

Dr. David Rosen: I think the important thing here to really hammer home is do not ignore symptoms. If there's something that you're even the smallest bit afraid, unsure, don't know what it is, get checked out and don't ignore it.

Dr. Scott Steele: That's fantastic advice. And so to learn more about Cleveland Clinic's accredited rectal cancer program, or to schedule an appointment for treatment, please call 866.223.8100. That's 866.223.8100. You can also visit clevelandclinic.org/digestive for more information. That's clevelandclinic.org/digestive. To the both of you, thank you so much for sharing a powerful and impactful, and what an incredible story, sharing it with all of us here and all of our listeners on Butts and Guts.

John Johnson: Thank you for having me.

Dr. David Rosen: Thanks so much.

Dr. Scott Steele: That wraps things up here at Cleveland Clinic. Until next time, thanks for listening to Butts and Guts.