Patient Perspectives: Diagnosed with Stage 4 Colorectal Cancer at 26—Now Cancer-Free After a Liver Transplant

Dr. Scott Steele:

Butts & 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 & Guts. I'm your host, Scott Steele, colorectal surgeon and president of main campus here at Cleveland Clinic in beautiful Cleveland, Ohio. And today, I am absolutely thrilled. This is one of my most favorite types of podcasts that we do, and that's when we have an interaction between a patient and their provider. And so today, we're going to be talking about colorectal cancer, a very unusual and unique patient that we'll go into.

And also, the role of extended type of treatment to include a liver transplant. And so, I would like to welcome first of all, Mr. David Lyon, who is a young onset colorectal cancer patient and also liver transplant recipient here at the Cleveland Clinic as well as his surgeon, Dr. Alejandro Pita, a liver transplant surgeon here at the Cleveland Clinic. And so just as a little bit of background, David was 26 years old, I said, when he unfortunately was diagnosed with colorectal cancer and ultimately required a liver transplant due to the advanced stage of his cancer.

Today, thank God, David, while being diagnosed at 26 years old, is considered cancer-free at the age of 31. And so, we are excited to have him on the podcast today to share more about his journey as a patient, advice that he can share to each of our listeners about an experience. And also Dr. Alejandro Pita, the director of our living donor liver transplantation unit here at the Cleveland Clinic's Transplant Center who is a part of David's transplant team.

And I can say one of the nicest men that I know of and also one of the most technically skilled surgeons that I've had an opportunity to be able to observe. And so David, Alejandro, thank you so much and welcome.

Dr. Alejandro Pita:

Thank you so much for the kind introduction, man. Thanks for ...

David Lyon:

Yeah, thank you. Thank you very much.

Dr. Scott Steele:

So David, I'm going to start with you. And so give us a little bit of background about yourself, where you're from, and if you will, before this happened, you're a healthy, athletic 26-year-old ... God, I remember what my life was like back in my 20s. And so what did life look for you back then? What was your work? What was your routines and what were the things that you loved to be doing?

David Lyon:

God, back then seems like forever ago at this point, but I was playing hockey, going to the gym, kayaking with my friends when we could, and just working, working where I could. And I was actually just starting my career in becoming an HVAC apprentice when all this had started.

Dr. Scott Steele:

Well, we are also joined, as I said, by Alejandro Pita. And so Dr. Pita, can you give us a little bit about your background and where did you train, where you're from, and how did it come to the point that you're here at the Cleveland Clinic?

Dr. Alejandro Pita:

Yeah, absolutely. I was born and raised in Havana, Cuba, and I moved to the US right after finishing high school. I did my undergrad and med school at the University of Miami, and then, I did my surgery residency at USC in LA. Then I was fortunate to come to the Cleveland Clinic for my fellowship in abdominal transplantation and hepatobiliary surgery. And then after that, I stayed on as a liver transplant surgeon here and have been here ever since. Again, I'm joining you today since I had the opportunity to perform David's liver transplant as part of his treatment.

Dr. Scott Steele:

And I should also give my disclosure is that even though I've been the host of this podcast for several years and I serve as the president of our main campus submarket, I also am a practicing colorectal surgeon. And I also actually participated in the care of David, and it's so wonderful to have you back. I performed actually the abdominal portion on the colon rectum operation on David back in 2022. And so, super excited that we could all be together on this particular journey.

So David, let's kick it back to you. What were your first symptoms? And I got to ask you initially, were you thinking what the heck or were you thinking, "Ah, it's probably hemorrhoids or I worked out too hard or anything." What was going through your mind then?

David Lyon:

So the very first symptom that I didn't think anything of was the extreme weight loss. I didn't think anything of that because I was playing hockey. At that time, I was playing it two times a week. I was going to the gym regularly. I was eating semi better and I was starting to work in a shop, so it was hot. And so I was like, I didn't think anything of the weight loss. I just thought everything was working.

And then, things started to go a little more sideways when I had noticed red, when I would go to use the restroom. And I wrote that off because I didn't think anything of it for some reason. It wasn't a consistent showing. Didn't know if maybe I had just scratched something or had some other reason. But I can tell you, cancer was the farthest thing from my mind. And then the one that sent me in to get everything looked at was crippling abdominal pain.

That one, I couldn't stand up straight. I talked to my foreman in the shop and was like, "Yeah, I got to go get looked at."

Dr. Scott Steele:

So you're rolling along, you're just working and all of a sudden you're like, "Uh-oh, something might be seriously wrong." So was it that day that you decided to become a doctor? And I have to ask, what made you choose the Cleveland Clinic for your care?

David Lyon:

So I was originally referred to Pittsburgh through my hometown oncologist, but the CEO of the company I was working for is the one that gave me the name of Dr. Quintini because he had operated on his wife and realistically saved his wife's life. And he was like, "This is who you got to go talk to. You got to go to Cleveland." And from the moment on when we went to Cleveland, everybody there was just so ready to get me sorted.

Dr. Scott Steele:

That's fantastic to hear. For our listeners out there, so I'm very proud as the former chair of the Department of Colorectal Surgery here at the Cleveland Clinic that we are actually proud to offer the Edward J. DeBartolo Jr. Family Center for Young Onset Colorectal Cancer, one of the few places in the nation, in the world, if you will, that brings together a specialized multidisciplinary team to deliver comprehensive cancer care specifically for those cancer patients under age 50.

And what we do is try to go out of our way to tailor treatment plans as we know that young patients are different in addressing not only treatment, but school, work, life, fertility planning, relationships. And so David, I've never really talked to you much about this, but can you touch upon your first meeting with our specialized team at our Center for Young Onset of Colorectal Cancer? And what did it mean to you here when we were saying to you, "Hey, we got a plan," during that initial meeting?

David Lyon:

It gave me a sense of relief from the interaction, like I had mentioned, in Pittsburgh was not so, I don't want to say kind, but it didn't go as so well as you would think just a doctor's appointment would go. But the way that everybody had handled everything, the way that it just seemed like everybody was just getting down to my level and just ready to just talk to me. They weren't talking to me as I was just another patient.

I was just a real person, not just another number kind of thing is how it felt to me. And it gave me the sense of relief. It gave me a renewed hope that I was in good hands, I was all right. But having everybody just to be able to talk to everybody right in a row as well. I didn't have to wait around and things like that, it made it so much easier.

Dr. Scott Steele:

So David, you were diagnosed with stage four colorectal cancer, so spread beyond the normal boundaries around the colon and the regional lymph nodes there. And in your particular case, it spread to not only those lymph nodes, but to the liver as well. And so, I think we're also blessed here at the Cleveland Clinic to have a bunch of unbelievable gastrointestinal specific, colorectal cancer specific in some cases, oncologists like the one that you had, Dr. Bassam Estfan.

And you began your aggressive chemotherapy treatments just 10 days after your diagnosis. So can you walk us through that journey and starting that chemotherapy and what your treatment plan included? And I'd be very interested if you'd be willing to share with our listeners, what were the most difficult parts of that, both physically as well as mentally?

David Lyon:

Just having to get on chemo so quick and not knowing what to really expect going into it. I wasn't nervous, but I just was like, "I'm going to just roll with the punches here and see what happens." And right from the start, getting told that I was going to be basically in a chair, connected to chemo for six to eight hours. And then, I would be taking home a bag that consistently pumped chemo into my body for 48 hours. After that, it was a little rough, a little bit annoying ... extent.

And it was every other week that this happened. And it was just right as my body would be getting back to semi-normal, I would be right back in the chair getting chemo pumped back in. And one of the hardest parts to deal with was that bag, trying to find a way to sleep comfortably, just having to lug this thing around while I was at home. And I didn't want to do anything. I didn't want to leave my house while I was connected to this thing.

And there was very few occasions that I did go out and do something while connected to it. But really the first bit took a little bit of getting used to. I wasn't overly sick until ... geez, it was a couple of cycles in and then, I really started to feel it in my body. I was starting to feel weaker physically. That started to really bother me. And that's one of the things that weighed on me mentally, was I could feel myself getting weaker and I didn't like it.

And to go on the mental part, after a while, it starts to just weigh super heavy. It started to weigh on me in the way that everything I was going through, it just made me question if it was actually worth continuing to go through. It was actually working, like why am I continuing to do this to myself? All those things would just run through your head. At least that's what it did to me. And even sometimes to the ... not to this day, but before the liver transplant, I was still having those kind of thoughts.

Was it all worth it? There was times I just kind of broke down, whether it was around people or by myself. And it was just one of those things. I think I needed to just let it happen. And I just kind of built myself up off of that.

Dr. Scott Steele:

Well, I sure do appreciate your transparency and your vulnerability and sharing that with our audience and commend you on just the strength and grit that you had to be able to overcome that.

Dr. Scott Steele:

Well, I sure do appreciate your transparency and your vulnerability and sharing that with our audience and commend you on just the strength and grit that you had to be able to overcome that. And so, what would you say to a young person who may be listening to this who might be having some symptoms but are nervous to talk to their doctor, which might be, frankly ... and I'm used to it in the world of GI, might be some embarrassing symptoms that they're having.

David Lyon:

I mean, it is. I never thought I'd be on quite the stage I am, talking about having blood coming from my rear end. But if I didn't start talking about it and wouldn't have been able to just continue to talk about it. But the biggest thing I can say is just do it. For the love of God, just go get checked, because had I not, I wouldn't be able to sit here and tell my story or tell anybody anything. It can be embarrassing, but something is not right on the inside and you may know your body super well, but you don't know truly what's going on on the inside.

Dr. Scott Steele:

Well, I feel the need as a colorectal surgeon and a part of David's care team to editorialize it a little bit here, which is not something I typically do on Butts & Guts. But before we jump to Dr. Pita, I would just say that to the listeners out there, what's important to understand is there's a difference between screening and symptoms. And unfortunately, colorectal cancer has been increasing in the young population, the topic that we're talking about here.

And here through our Young-Onset Colorectal Cancer Center, we're exploring that and doing a lot of good research into the reasons why, which is the most common reason going in. It's unfortunately been increasing to the point where not too long ago, our average age of screening from our national guidance recommendations have decreased to 45. And so we don't want to be able to forget that. And that includes a colonoscopy.

And many people are a little worried about a colonoscopy because they're worried about the prep, but the prep is something that's easy. There's different types of them. We can get you through that. And there's nothing like having the gold standard. And while I tell people there's other things that are out there over the counter, stool samples and everything you can send in, do something and talk to your doctor and be able to go there because symptoms are different than screening, which is something that would suggest that you may not have symptoms.

And so no matter what your age is, if you're having horrific abdominal pain, crippling abdominal pain like David, or having weight loss that you don't know, or rectal bleeding, those are all symptoms that they may not be cancer. As a matter of fact, in many cases, they may not be at all, but they warrant evaluation and having that. And further, I would say, and I'm proud of places like the Cleveland Clinic where you have things in situations where patients may have stage four disease and a lesion in their liver, but also a lesion in their colon.

And we do have multidisciplinary conferences where we walk through and make that journey along with the patient, including taking in their recommendations to be able to say how we think about timing and sequencing. Is somebody partially obstructed or nearly obstructed that? Although they may have metastatic disease, we're going to start with surgery upfront and then give chemotherapy or other way around, or can we do a combined operation with that?

And that's our job to be able to walk our patients through with that. In this particular case is obviously a success story of that, but it is multiple other stories that unfortunately we continue to deal with over and over again. So I echo what David just said. And at the end of the day, just do it, just go see your doctor. Don't ignore it and to be able to go in because the earlier we can catch it, it's the most important.

The final thing I would say is that we've had some episodes on Butts & Guts that dig deeper into this. And I encourage all of our listeners to browse our subject browser topics and listen to that where we get much more details on that. So with that, I'm going to switch gears now and bring in Dr. Pita.

So Alejandro, David underwent some pretty extensive therapy and then a liver-directed treatment with radioembolization with yttrium-90 that helped make him eligible for the transplant list. So you got to walk listeners through, if you will, just the big picture criteria to this. What has to happen for a patient like David who's got stage four, which let's be honest, not too long ago was considered a death sentence, to be considered for a transplant?

Dr. Alejandro Pita:

Yeah, that's right. For a patient with colorectal cancer that has spread to the liver, transplant is not something that we consider immediately for unresectable metastasis after diagnosis. Actually, it is more of a stepwise selective approach to make sure that liver transplantation would offer the best chance at getting rid of all disease.

So the first and most important principle I would say is the disease confined to the liver. Because the transplant replaces the liver, but it doesn't address cancer that has spread to other regions. I'd say second consideration will be assessing how the disease responds to therapy over time.

As we discussed, initial treatment involves systemic treatment with chemotherapy, as well as surgery to remove the area where cancer originated from. We'd like to see good treatment response over time with decrease in tumor size on repeat imaging like CT scans.

Then in most cases we add liver-directed therapy or what we like to call local regional therapy, which can be things like Y90 radioembolization such as in David's case, tumor ablation, things like external beam radiation, histotripsy, and sometimes liver-directed chemotherapy through hepatic artery infusion pumps. So there are multiple modalities that we can use.

So if there is a durable control with no spread outside the liver and favorable tumor behavior after a few months or up to a year of observation, we can then proceed with transplant. So as you can imagine, there are a lot of different clinicians like oncologists, hepatologists, surgeons, radiologists, and coordinators who take care of these patients in a true multidisciplinary approach.

We have here an excellent transplant oncology team led by Dr. Khalil, Dr. Federico Aucejo, and Dr. Junna that meet regularly in the follow-up of these patients to make sure that we can successfully get them to transplant.

So in David's case, it was remarkable to see how well he responded to the treatment and ultimately, we were able to proceed with liver transplant. I mean, he did really well and he truly, truly is a fighter. So fortunately in his case, a deceased donor became available so we were able to proceed with the transplant. But another important option that can really help some of these patients in the same situation is living donation.

So thanks to many healthy donors who've stepped forward to donate a piece of their liver, sometimes we're able to give patients a second chance.

Dr. Scott Steele:

Alejandro, after liver transplants, patients, they're balancing recovery, surveillance, long-term health, mental health. As we heard, this is going to be a very difficult mental journey. So what does follow-up typically focus on after transplant in a case like this? And what message would you share with your patients and families who hear that transplant and feel overwhelmed or fearful?

Dr. Alejandro Pita:

Yeah, liver transplant is a big operation for sure. Generally, patients recover very well. In the follow-up, we need to make sure that we keep the new liver healthy with anti-rejection medications to make sure that it will function well, without rejection developing. And that means frequent labs, medication adjustments, especially in the first few months.

Then at the same time, we need to do cancer surveillance by obtaining imaging like CT scans and tumor markers at regular intervals. Because even though the liver has been replaced, we need to monitor closely for any signs of recurrence.

And then, there is the broader recovery, making sure there is proper nutrition and physical rehabilitation and helping patients gradually return to a normal life. So for patients and families who hear the word transplant and they feel overwhelmed, I usually try to reframe it in simple terms. This is not the end of treatment or a last resort.

It is more of a structured pathway really designed to give patients the best chance at survival and having a good quality of life. Patients will not be navigating this process alone. They know there's a whole team there to watch every step of the way.

Dr. Scott Steele:

Well, it is a pretty commendable journey and it's unbelievable to hear it be told even though I was a part of that journey. And it's a tough transition, but I would be remiss if I didn't get an opportunity to ask each of you our quick hitters, a chance to get to know you a little bit more personally. And we'll go back and forth a little bit.

David, for each one of these, I'll start with you. Then Alejandro, you can go second. So first of all, David, salt or sweet?

David Lyon:

More the salty type.

Dr. Scott Steele:

Alejandro?

Dr. Alejandro Pita:

Definitely both for me.

Dr. Scott Steele:

David, favorite sport to play or to watch?

David Lyon:

Hockey, ice hockey, hands down.

Dr. Scott Steele:

Alejandro?

Dr. Alejandro Pita:

I'd say, to watch, baseball. I used to play when I was younger, but now I would say to play, it's racquetball for me.

Dr. Scott Steele:

Fantastic. David, what was your first car?

David Lyon:

My first car was a 2009 Pontiac G6, I think is what it was.

Dr. Scott Steele:

Nice. Alejandro?

Dr. Alejandro Pita:

Mine was a 2003 Subaru Baja.

Dr. Scott Steele:

And finally, David, we'll start with you again. If you could have a superpower, it sounds like you already do, but if you could have a superpower, what would it be?

David Lyon:

I hate this question because my favorite superhero doesn't have any superpowers.

Dr. Scott Steele:

Well, now you have to tell us who that is.

David Lyon:

I love The Punisher. The Punisher has always been my favorite because he doesn't have superpowers. He's just the badass, for lack of a better term.

Dr. Scott Steele:

Well, I think you've shown that you have a superpower in and of itself. That's right. Alejandro?

Dr. Alejandro Pita:

I think I recently said teleporting in a previous episode, so maybe this time I'll say time traveling. I enjoy reading history and stuff, so it'd be nice to see it in real time.

Dr. Scott Steele:

Okay. So Alejandro, I'll keep it here with you. So final take-home message to share with our listeners regarding not only young-onset colorectal cancer, but just the role of liver transplant in these patients with stage four disease.

Dr. Alejandro Pita:

Yeah, I would say even if you're young, definitely don't ignore potential symptoms. We're seeing more and more patients who are in their 20s or 30s or 40s, and oftentimes the diagnosis gets delayed because symptoms are dismissed.

But overall, I would say there's a reason for optimism. Treatments are improving. We're able to offer therapies that were not an option even in the recent past. And there are very promising results for patients who need to undergo transplant for cases like this.

And lastly, again, for any healthy listeners out there, if at all possible, please consider living donation as you can help give patients like David a good chance at life.

Dr. Scott Steele:

And David, any final takeaways to our listeners regarding either your experience as a patient at the Clinic or particularly those young adults who may be experiencing, if you will, some unusual symptoms or feel they're too young to get cancer?

David Lyon:

I mean, like I've already said, if you think something is not right, for the love of God, just go get checked.

Dr. Scott Steele:

I think that's all there is to say.

David Lyon:

Cancer was the farthest thing from my mind when I had everything going on. And yeah, I'll just reiterate it. I wouldn't be sitting here if I just didn't buck up and go get checked out.

And I have told several people now that if they have any concerns ... And people have come to me and asked who I saw at the Clinic, who I've talked to at the Clinic, and I will sing the Clinic's praises for as long as I can. If I had to go through it all again, it would still be Cleveland Clinic, first choice.

Dr. Scott Steele:

Well, while we appreciate that, we certainly appreciate all that you've been through. And again, just congratulations on being a fighter and overcoming it again.

So to learn more about Cleveland Clinic's accredited colorectal 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.

You can also learn more about transplant care here at the Cleveland Clinic by visiting our website at clevelandclinic.org/transplant. Again, that's clevelandclinic.org/transplant. And you can also call our transplant center at 216.444.2394. That's 216.444.2394.

David, Alejandro, thanks for joining Butts & Guts.

Dr. Alejandro Pita:

Thanks so much again.

David Lyon:

Thank you.

Dr. Scott Steele:

That wraps things up here at Cleveland Clinic. Until next time, thanks for listening to Butts & Guts.