Cleveland Clinic's Center for Young-Onset Colorectal Cancer
Suneel Kamath, MD, hematologist and medical oncologist at Cleveland Clinic Cancer Center, joins the Cancer Advances podcast for the second time to discuss our new Center for Young-Onset Colorectal Cancer. Listen as Dr. Kamath discusses how the center was established, and how it will allow us to take a comprehensive and multidisciplinary approach to research, diagnosis, and treatment of young-onset colorectal cancer.
Cleveland Clinic's Center for Young-Onset Colorectal Cancer
Dale Shepard, MD, PhD: Cancer Advances, a Cleveland Clinic podcast for medical professionals, exploring the latest innovative research in clinical advances in the field of oncology. Thank you for joining us for another episode of Cancer Advances. I'm your host, Dr. Dale Shepard, a medical oncologist here at Cleveland Clinic overseeing our Taussig Phase I and Sarcoma Programs. I'm happy to be joined again by Dr. Suneel Kamath, a medical oncologist specializing in gastrointestinal cancers. Today, he's here to talk to us about young onset colorectal cancer and the Cleveland Clinic's new Center for Young-Onset Colorectal Cancer. So welcome back, Suneel.
Suneel Kamath, MD: Thanks for having me again, Dale.
Dale Shepard, MD, PhD: Absolutely. So maybe to start, give us another brief reminder of your role here at Cleveland Clinic.
Suneel Kamath, MD: Definitely. Yeah. So as you mentioned, I'm a medical oncologist. I specialize in GI cancers. I also have a significant interest in learning to better treat young onsite colorectal cancer, and also to learn why this is happening and why we're seeing such a massive increase in the number of patients affected.
Dale Shepard, MD, PhD: All right. Well, we may have a fairly diverse group listening. So maybe just to set the stage, tell us a little bit about that, about how colorectal cancer in general, how we're doing and in the youth particularly. What does that look like? What's the magnitude of the problem here?
Suneel Kamath, MD: Yeah, it's really interesting. We've seen a general decline in the number of colorectal cancer cases per year overall. And I think much of that has to do with colonoscopy screening, detecting polyps and removing them early. But unfortunately what we're seeing is all of that is occurring in the older population. Mostly people who are older than 60, and unfortunately for patients under 50, in particular under 40, we're seeing a significant increase, more than 50% increase in the number of cases per year. We're currently at 49 new cases a day and 10 deaths per day in particular for the young onset population. Unfortunately, many of these are patients who are in their twenties and thirties. And for our center, and I'm sure many other places as well, 80% of these actually have very young children too. In addition to being obviously a particularly devastating thing for a young person, we're also talking about affecting so many other people in these patients' lives.
Dale Shepard, MD, PhD: I guess I'll just go with one of the more obvious things up front, twenties and thirties. It's just heartbreaking to see people coming in with metastatic colon cancer in their twenties and thirties. And so one of the problem seems to be who thinks about metastatic colon cancer in a 22 year old? Tell us a little bit about how are we supposed to educate people about the importance of this, even from an awareness standpoint?
Suneel Kamath, MD: Yeah. It's so hard. Because you're absolutely right, nobody expects this in their twenties and thirties. I think it's really two things. One is educating the general public that this is out there, that there are common symptoms I think are important for patients to know about. Certainly blood in the stool at any time is not normal. So definitely seeing your primary care doctor. Or if you don't have a primary care doc, get one, you should have one anyway and see somebody about that. Changes in your stool caliber. If you're finding it's hard to have a bowel movement more so than before. It's tough, all of us can get constipated from time to time, but it's something that's a persistent problem.
You shouldn't be constipated for a month straight. That's something that's unusual. So paying attention to your body and being aware of those symptoms. Secondly, I think we also need to educate ourselves, I think as physicians. A lot of the patients that we talk to, if you really get into their presentation, you find that most of them have actually seen at least one doctor. About 75% have seen at least one physician about their symptoms. I think up to a third even have seen multiple doctors, two or three doctors, about the exact same symptoms that relate to their cancer. So I think some of it is also us realizing that this is out there and instead of minimizing and saying, "Oh, it's probably not nothing. Just take a stool softener, probably hemorrhoids." Really investigating it further, taking that next step to get a colonoscopy, to investigate it fully because it may be something much more serious than we realize.
Dale Shepard, MD, PhD: Are patients who are shown up with young-onset colon cancer, are they showing up primarily with late stage disease? Is it earlier stage? I'm guessing more late stage because they're not getting screening, but is that true?
Suneel Kamath, MD: That is true. Yeah. Unfortunately, the numbers vary. It could be anywhere from 25 to even 50% present with late stage disease. And a lot of it is because they don't have symptoms early or their symptoms are not addressed early enough. And yeah, they're well below the age of screening. So there's really no opportunity to intervene on their cancer at an earlier point. And I'm sure a lot of it too, they're busy. They're parents and they have busy jobs with the early phases of their careers. So it's easy to ignore something and say, "Oh, it's probably no big deal. I am a little more tired than usual, but I'm busy with work and whatnot." So it's easy to put things off. So I'm sure it's several factors.
Dale Shepard, MD, PhD: We'll talk about how the center might impact some of these parameters in terms of who we look for, who we suspect. We'll talk about that in a second. But is there anything obvious, like do most of these patients are showing up with early onset, young onset disease, have a family history compared to older patients? Or is there any clue at all at this point in who might be at risk?
Suneel Kamath, MD: Yeah, that's been challenging. I think we hope that there would be a strong indicator. But unfortunately we found that from a hereditary standpoint, only about probably 20 to 25% have a known hereditary syndrome. Probably another maybe 10% or so have a family history without a known genetic mutation in the family. But the vast majority, probably two thirds or more, is a completely sporadic thing with no strong family history at all. We certainly have seen some trends. These tend to be left sided tumors for the most part. There doesn't seem to be much gender predilection. From a racial standpoint, it seems like the rate of rise is the highest in the white population. But actually if you look at just the proportion of the young onset patients only, it actually seems to be affecting black and Hispanic patients more. So I think that's another important factor for the patients to know and also for us as physicians to realize, to take those symptoms more seriously in those subgroups.
Dale Shepard, MD, PhD: And so you mention left-sided tumor. And again, we have a lot of people that might be listening not familiar. What's the importance of that?
Suneel Kamath, MD: Yeah, the importance of that is, the left-sided tumor, so the left side of the colon is closest to the exit, so to speak. So it tends to be the rectum and then the sigmoid colon. And the significance of that really is the symptoms tend to be fortunately easier to detect. They are more likely to have bleeding as a presentation, more likely to have changes with stool caliber or constipation and things like that. So that's the reason I think the blood in the stool aspect especially is really important for patients to know and physicians to take seriously because those tumors tend to be on the left side are the ones where they tend to bleed more.
Dale Shepard, MD, PhD: So you mentioned before about some differences based on characteristics of patients. Tell us a little bit about some research you've done in this area.
Suneel Kamath, MD: So we fortunately have access to the National Cancer Database, which is a massive database, includes probably 70% of all patients that receive cancer care in the United States. So we looked at their data to see, are there any trends in the young onset population compared to older patients with average onset colorectal cancer. And we found some really interesting things. First thing was we found that both black and Hispanic patients were disproportionately affected in the young onset population compared to older patients. And also interestingly, we found that as far as outcomes are concerned, unfortunately black patients experience worse outcomes compared to the other racial and ethnic subgroups. But what was most interesting was that didn't track solely with socioeconomic status. A lot of other studies have shown that same finding, but it really tracked with poverty and decrease access to care, less education, other markers and metrics that we know affect outcomes.
We didn't really find that. What we found was patients that were in lower socioeconomic communities, they did have worse outcomes. But that was really consistent across all races, racial and ethnic groups. So that didn't uniquely affect black patients. But what we found actually was in some of the higher socioeconomic communities, ones that were better educated, had higher median income, that is actually where the disparity was found, particularly in young patients. And that was definitely a very surprising finding because it was very new compared to pretty much every other study I'd seen looking at this type of question.
Dale Shepard, MD, PhD: Any thoughts as to why that might be? And as I recall, there was some correlation with insurance and their access to insurance. Is that correct?
Suneel Kamath, MD: That's right. Yeah, exactly. This was predominantly seen in privately insured patients really. So those who had government insurance, who were uninsured, again there, the outcomes were very similar across racial and ethnic groups. But this was specific really to those who were privately insured. And I strongly suspect that does have something to do with access. We're so big on that here at Cleveland Clinic, because it matters. If you have good access to care, things happen faster, they happen in a timely manner, and that is so critical for cancer outcomes. And it's something we don't think about too often.
Generally we look at private and we say, "Those are the people who are doing well. That's the group we don't need to worry about. They have good access." But really, if you think about various plans that are out there, depending on the job you have and which insurance your particular employer has access to, the amount of coverage you have could actually vary quite a bit. There are a lot of studies out there showing, depending on which, it's a PPO or an HMO based type of insurance, you may only have access to one oncologist or one gastroenterologist, and they might be 80 miles away from you. And their earliest appointment might be three months from now. So even though you have what looks like a good private insurance, your actual access to the care you need may not be as good as it seems.
Dale Shepard, MD, PhD: There's been a tremendous emphasis in the past on getting insured and having people insured. But it sounds like maybe the right thing to do is what's the actual insurance. It's not just check in the box that you're insured. I thought that was an interesting finding from that.
Suneel Kamath, MD: Definitely.
Dale Shepard, MD, PhD: Reshape the discussion perhaps.
Suneel Kamath, MD: Oh yeah. I think we definitely need to drill down into what actually is covered. Is the access to things that people really need actually available? There's a lot of data, both for regular private insurances that you would get, but also for those on the healthcare exchange, through Obamacare. So yeah, definitely I think we need to look into what are these plans actually covering and are they covering the things that need to be.
Dale Shepard, MD, PhD: Well speaking of access, what a great way to introduce the discussion of this new Center for Young Onset Colorectal Cancer. So tell me a little bit about that. What is that?
Suneel Kamath, MD: Yeah, so this really started, I think, because we've collectively seen just how common early onset and young onset colorectal cancer is. It also came, in part, from a really generous donation as well. Really I think what it is, is it's kind of a uniting of our talents here, from GI to the colorectal surgeons, to liver surgeons, to us in medical oncology, radiation oncology. It's really getting all of us together to collectively recognize that this is a huge problem and to dedicate specific resources to it. I think the biggest things I've seen from the center are having dedicated nurses and care coordinators to help patients navigate their journey through this. Because we really need to do three things, I think in this space. One is increase awareness that this is out there, to have patients be aware that once they're affected, once they're diagnosed, there are centers that have very subspecialized care like us that can help them get the best out outcomes.
Number two is to improve as far as our treatment interventions as well. I think younger patients, because they're younger and fitter, they're certainly able to receive more aggressive therapies when a lot of that is surgical or radiation and things like that. So I know that a lot of other community centers, they might be told that "Your disease is too advanced, there's really nothing that we can do except for chemo." We know with chemo, you're going to get probably two to three years of survival and that's about it. I think at a center like ours, I think it really gets us to think about more aggressive interventions, even if it's in the liver and in the lungs, maybe we can do an operation to get out all the tumors that are in the liver, but also maybe do radiation in the lungs to take care of everything that's there as well.
And three, I think is also to have increased efforts as far as our research production as well, because we do know a small subset of patients who have stage IV cancer can actually still achieve a long term remission. And I think if we're not aggressive about pursuing those avenues, we're never going to identify that subset.
Dale Shepard, MD, PhD: So one of the strengths here at Cleveland Clinic, we've talked on a previous podcast about the Weiss Center and hereditary diseases. How is that experience, in terms of registries, being leveraged in this effort?
Suneel Kamath, MD: Yeah, that is a critical part of this. I think we have a very large dedicated team for biobanking specimens, which I think is such a critical piece of this because we really don't understand yet why this is happening. And that has to be question number one, really. And I think the way we're going to figure that out is by collecting blood, collecting tissue, collecting stool, collecting specimens from people who are affected and studying them, and seeing are there differences in the patients who have colorectal cancer versus those who don't. Because that's really going to be the way we're going to figure out why this is happening and how we can best prevent it.
So, yeah, I think that's the biggest thing really. Also, we have a strong backing from our genetic counseling team as well because I think ensuring patients that they get the genetic testing that they should is another piece to make sure we're identifying 100% of the patients who have a hereditary syndrome because that matters as far as their personal screening, it affects their families and everything. I think that's another critical part of this is making sure genetic testing is done, both from a hereditary standpoint, but also from the tumor and from the blood for circulating tumor DNA and things like that too.
Dale Shepard, MD, PhD: We talked before about just the identification of patients. Recent guidelines for screening have shifted to 45. That doesn't help our 20 and 30 year olds, but certainly screening people at 20 doesn't make sense either. So it seems like this is going to be a good way to maybe find some way to identify those who might need screened.
Suneel Kamath, MD: Absolutely. The other thing that I think we often forget about is people really should also start asking their family members about high risk adenomas as well, because they should also recommend people who have a family history of high risk adenomas to start getting colonoscopies at age 40, or even 10 years before the age that that adenoma was found. That's something I don't know if people are necessarily aware of. A lot of times that conversation with the gastroenterologist is, "Oh yeah, you had a poly up and we took it out. You need another colonoscopy in a year," and there's really no discussion about what that means. So I think there's probably a couple of changes that need to happen there. One is I think we need to start informing patients that this was a precursor to cancer and you probably should tell family about this because it could affect their screening. I think that may be a way to expand our reach to some of these younger patients because you're right, we're not going to be able to do colonoscopies on everyone.
Dale Shepard, MD, PhD: What do we know at this point, as we start to this, about the disease we do see in younger people? They're younger, they're more fit to get therapies in many cases, but does it seem like the same disease? Do they respond similarly to the therapies we have? Does it seem like it's really essentially the same type of colon cancer older patients have or are we needing to figure that out as well?
Suneel Kamath, MD: From a treatment standpoint, yes, it seems like the response rates for chemotherapy and things like that certainly seem to be similar. Interestingly, from a genomic standpoint, they also seem to be very similar to older patients with colorectal cancer. I think many of us thought we would find some signal that some genetic mutation would be significantly more prevalent in the young population. We've seen some series, our data is showing a couple of rare mutations that may be more prevalent in the young population. But probably a lot of that just comes down to the small size of these series, or single institution series. So yeah, it seems like from a disease standpoint, they're very similar as far as responses and everything. And I do think obviously there's something different about what's causing them to occur, to occur decades before they normally would. There's some early signals. We're doing quite a bit of work, looking at the microbiome, to see if there's a particular bacterial signature that we can see in the microbiome that's unique to the young onset population and does seem to be there is some unique variation there.
Dale Shepard, MD, PhD: The center has been open for a few months now. Maybe can you tell us a little bit about how you've seen a patient that was involved with the center, benefit from that interaction?
Suneel Kamath, MD: Definitely, yeah. There's a young lady that comes immediately to mind that just makes me feel good, just remembering her case. She's in her thirties, from Michigan. She came here for a second opinion. She had originally an early stage colorectal cancer, had surgery and chemotherapy afterwards. Unfortunately, recurred very quickly in a really difficult location, in the pelvic side wall, deep in the pelvis. So it's a really tough area to operate on from the get go. So she was told by her surgeons and everything that this is not operable, probably never will, go on chemotherapy and you probably have a few years. She said, "Yeah, I'm in my thirties. I have two kids under five. That's not good enough."
I said, "Yeah, I totally agree with you. It's not good enough." I recommended a really aggressive three drug regimen of chemotherapy. She did great with that. We sandwiched in a little bit of radiation to this particular area. And then things seemed to have responded really well. So we said, "We got to take our shot." So we went head with surgery and it was probably the craziest operation that I've ever seen. I think there are at least five or six different surgeons in on this case from colorectal surgery, from vascular surgery, from urology, from GYN/ONC as well. They really did a lot in this case. And fortunately at the end of this, probably five, six hour operation, they really got everything out, there was no tumor left behind. And she's several months out now, no tumor anywhere, not needing any treatment at this point. Obviously it's early still, so I'm always reluctant to use the word cure, but I'm really hopeful that she's going to stay in a long term remission. And I know that we made a big difference for her.
Dale Shepard, MD, PhD: Excellent. Well given the breadth of specialties involved in the center, and like you say, from genetics and med onc and all of the different groups, who should come to be seen here to be evaluated by the center? Are there particular patients, clearly younger, but are there particular cases that you think really should make the trip to come here and be seen?
Suneel Kamath, MD: Yeah. Honestly, I think everyone really. I think because we're fortunate to have medical genetics for genetic counseling to have great backup for fertility preservation, for helping with sexual dysfunction due to chemo and surgery and psychosocial support from our social workers from psycho-oncology here. We have so much subspecialization in addition to having more novel and aggressive treatment approaches that I think every patient would benefit. I think in particular, those who have stage IV disease that are potentially candidates for resections or things that other centers might not pursue. Again, because those could be curative for a subset of patients. So I think that group, especially, if there's only tumors in the liver, only a couple spots in the lungs or a couple spots in the liver, something like that, those are patients that we would certainly pursue a more aggressive approach of surgery or mixing surgery with radiation to try to get them off of lifelong chemo and maybe get them into a long term remission.
Dale Shepard, MD, PhD: Well, it's outstanding the work that's being done for this center here. And so I appreciate your insights today.
Suneel Kamath, MD: Of course. Yeah, happy to talk about it.
Dale Shepard, MD, PhD: This concludes this episode of Cancer Advances. You will find additional podcast episodes on our website, clevelandclinic.org/canceradvancespodcast. Subscribe to the podcast on iTunes, Google Play, Spotify, SoundCloud, or wherever you listen to podcasts. And don't forget you can access real time updates from Cleveland Clinic's Cancer Center experts on our Consult QD website, at consultqd.clevelandclinic.org/cancer. Thank you for listening. Please join us again soon.