Integrated Program for Young People with Cancer

Podcast Transcript

Dale Shepard, MD, PhD: Cancer Advances, a Cleveland Clinic podcast for medical professionals, exploring the latest innovative research and 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 Directing International Programs for the Cancer Institute and Co-Director of the Cleveland Clinic Sarcoma Program.

Today, I'm happy to be joined by Dr. David Liska, Chair of the Department of Colorectal Surgery and Director of the Weiss Center for Hereditary GI Neoplasia and Center for Young Onset Colorectal Cancer at Cleveland Clinic. He's here today to talk to us about the integrated program for young people with cancer. So welcome.

David Liska, MD: Good morning. Thanks so much for having me.

Dale Shepard, MD, PhD: Absolutely. So give us a little bit of an idea. I described your title, but what do you do here at the Cleveland Clinic?

David Liska, MD: Right, so I'm a colorectal surgeon, so my day is spent in taking care of patients with colorectal problems. Many of them have colorectal cancer or precancerous conditions, but also benign conditions such as inflammatory bowel disease, diverticulitis, and anorectal problems. And then I'm the chair of the department, so we lead a large group. We're the largest department in colorectal surgery in the country, so we have many colorectal surgeons who take care of all aspects that affect the colon or rectum.

Dale Shepard, MD, PhD: Very good. We're going to talk about this integrated program for young people, young onset cancers kind of as our overview. When we think about early onset cancer, young people with cancer, what kind of age range are we talking about?

David Liska, MD: Right, so it expands two groups. One is the AYA group or the adolescent young adult groups, and then it's the young onset group, which is anyone under the age of 50. So we're talking about people anywhere between the age of 15 and 50 is really the type of patients we're thinking of when we're thinking of our integrated program for young people with cancer.

Dale Shepard, MD, PhD: And so certainly as a colorectal surgeon, there's been a lot recently about young onset colon cancer. Where are we with understanding what might be driving that increase?

David Liska, MD: Yeah, that's really the key question. And it's like you said, it's definitely true for colorectal cancer where we've seen an alarming increase in young people with colorectal cancer. But it's also true in many other cancers as well over the last several decades where we are seeing an increase in cancers in young people.

So when we look at cancers overall, we see that the incidence for people that are older has actually in some cancers gone down, the mortality has gone down, but in some cancers, and one study showed 17 different cancers where we look at people who were born after the 1960s, that in those people of those birth cohorts, and when we talk about birth cohorts, we're talking about generations of people who were born in a certain time period. We've seen that those birth cohorts have a higher incidence of colorectal cancer.

And when we're talking about people who were born after the 1960s, it's the Generation X people and millennials now that we are seeing more and more of them affected with different types of cancers. And the key question is why are we seeing, why is this happening? The fact that it's happening in these birth cohorts, so anybody who was born after 1960s, that we're seeing this sort of increase. It makes us think that it must be something that's shared among these people of the same birth cohort and something shared that is usually we think of exposures that the same group of people was exposed to. And it can be early on, as early as in utero even, to early childhood years, that has probably led to them being at higher risk for cancers. So some sort of environmental exposure is what we're thinking. What that environmental exposure is, we don't know is the full answer.

There's different risk factors. We know in different cancers, obesity is a big one that gets a lot of attention. And we see that this rise in cancers parallels also the obesity epidemic. And we know that obesity is a risk factor for different cancers, colorectal being one of them. However, I see many patients with young onset colorectal cancers who are not obese. They're fit, they're healthy. So while obesity definitely plays a role, it's not the only risk factor. So there are other risk factors, environmental risk factors as well that have a bearing on why we are seeing this increase. And we don't know yet what these risk factors are.

Dale Shepard, MD, PhD: Here at the Clinic, we have this program. We'll talk about looking at some of those research questions, how to best manage patients and provide them good care. You've certainly been doing this with colorectal cancer. Maybe we could talk about that first and then maybe what we're going to be doing in terms of expanding into other diseases.

David Liska, MD: Right, absolutely. So for colorectal cancer, again, it's a very alarming increase that we've seen and it's become more and more of a factor that we've seen our daily practice over the last 10 years or so, where we see more and more young people come with colorectal cancer and young people present often with more advanced disease.

And again, we don't exactly know why that is the case. Part of it is probably because they present usually only due to symptoms as opposed to older people who get a screening colonoscopy. Screening now starts at the age of 45. So when people have a cancer that is found due to screening, it is usually found at an earlier stage. Whereas people who present with a cancer due to symptoms, it's often a more advanced stage. So that's one of the reasons why these young people have more advanced cancer.

The other reason though, might be that the actual biology of the cancer might be more aggressive. And there's some evidence pointing to that, that when young people present with cancers, and we see that also in breast cancer, not only in colorectal cancer, a lot of time it presents with a more advanced and more aggressive biology. So us seeing these patients, young patients with more aggressive tumors, more advanced tumors, it made all of us ask on a daily basis, number one, why is this happening? But number two, what can we do to make sure that these patients do better?

And that's really why we started our Center for Young Onset Colorectal Cancer is really our mission was to, number one, take care of the patients and make sure that these patients have better outcomes. And that requires a multidisciplinary approach where we address not just the surgery for the cancer, which we as colorectal surgeons do, but also everything that goes around the treatment and the psychosocial aspect of it. And we'll talk about that in a minute more.

But besides the patient care, the other big factor is research where we want to make sure that we figure out why this is happening, number one, but also figure out are there any certain treatments that are more specific to young people that can allow us to have better outcomes in these patients. And the third role is education and raising awareness. Raising awareness and educating not only people that need to watch out for symptoms, but also providers and physicians who may be are not used to seeing young people with early onset cancers to make sure that providers, number one, have sort of a level of awareness that this is happening and make sure that a person who presents with symptoms, that they get the necessary workup, but also knows that there are specific considerations when you see a young person of cancer that they're not treated exactly the same way as older people with cancers.

So some of these treatment considerations that are specific to young people with cancer, for example, are in colorectal cancer, but also in other cancers, young people are more likely to have a genetic predisposition to cancer. So we want to make sure that they all get counseled about genetic testing and that they have genetic testing when appropriate because that could have treatment implications, but also can have implications on screening for the future of that patient, but also for their family. So genetic testing is something that's important in young people.

The other very important consideration of treatment in young people is fertility preservation. So a lot of young people when they're diagnosed are still at childbearing age where they're still planning to have families. And a lot of times either the cancer itself or the treatment for the cancer can affect fertility. So we want to make sure from the get-go, from the first time when we discuss treatment, that we also discuss with the patient what is the plan in terms of having a family. And some are so young that they never even thought about it, and then we have to help them think about it and then make sure that if there's a way to preserve fertility, which in most cases there is, that takes important consideration before starting treatment.

So those are two sort of considerations from a treatment standpoint. There's psychological implications and there's tremendous psychological implications of having an early onset diagnosis. Obviously whenever at any age when you get a diagnosis of cancer, it's a huge shock. But in young people, the shock is even greater just because it's so rare. So as a young person getting a diagnosis of cancer is a huge surprise, a shock. And then the implications on their life, somebody who has a cancer diagnosis once they're retired, in terms of how it disrupts the life, it's not the same as somebody who just started school or just started a new job or is in midst of a career.

In terms of the disruption for the day-to-day life, psychologically very different how that impacts the people. In colorectal cancer, about 80% of people diagnosed with young onset colorectal cancer will have children under the age of 18 at home. So besides taking care of yourself, a parent thinks of taking care of their children. Many of these people with young onset colorectal cancer will also have elderly parents that they're taking care of. So you're sort of being thrust in a position where you usually, you see yourself as the person taking care of everyone around you, all of a sudden you are the person who needs care to be given to them. So again, psychologically, it's just a huge impact and we need to make sure that we support people through the diagnosis, through the treatment, and from a psychological standpoint that they can have the strength to continue with treatment and have the strength to beat the disease as well.

The social implications are also different in young people. The financial toxicity of a diagnosis of cancer is huge at any time point. But again, in somebody who doesn't have the savings yet that an older person has with retirement, retirement funds, had savings, when you're just starting your career or just in midst of your career, you don't have that financial stability yet to be able to withstand the demands, the financial demands that a cancer diagnosis brings about besides costs of treatment, time off from work.

So again, having social workers who are familiar with these struggles and can help our patients with solutions to these struggles is huge. So these are some of the things we think about when we have a young person with cancer. And it's not just only for colorectal cancer, but it's really for all cancers. So what we learned from our experience in our Center for Young Onset Colorectal Cancer is that these are factors that affect all young people with cancer, which really wanted us to make sure that we have these same type of resources available for all young people with cancers, and a lot of these resources can be shared.

So instead of having a Center for Young Onset Colon Cancer, a Center for Young Onset Breast Cancer, a Center for Young Onset, Kidney Cancer, right? All these different cancers that we're seeing going up in incidents, we realized that we can help all these people within the same framework as an integrated program for these people. And that's really what this integrated program is all about.

Dale Shepard, MD, PhD: And then when we think about certainly colorectal you've been doing for some time and we're going to be bringing in the others, you mentioned breast, you mentioned kidney, are there some others that stand out as ones that are going to be key?

David Liska, MD: Right. So in terms of just numbers, breast is probably the most common one. So definitely one we want to tackle. Colorectal cancer is probably the second. Endocrine is a common one. The genitourinary cancer, so the kidney cancers. Leukemias, especially when we get to even the younger populations, leukemias, lymphomas, melanomas. So there's many different cancers, unfortunately, where we're seeing this. Pancreatic cancer, the other GI cancers, pancreatic hepatobiliary cancers, esophageal cancers even. We're seeing many different cancers where we really want to make sure that every young person with any cancer diagnosis really has access to the type of resources that can help them get through treatment better, have better outcomes.

And the other big aspect that we haven't talked about yet is survivorship, right? Survivorship talks about taking care of patients who've been through a cancer diagnosis, been through cancer treatment, and then have special considerations after they're done with treatment and after they're in that survivorship phase. And again, this is something that's important for all cancer survivors, but young people with a history of cancer who are now in the survivor phase, they have 60 years or so of living in that survivorship phase where we have these considerations that we want to make sure, and those considerations are taken care of. Implications of the treatment side effects, for example, but also a risk of secondary cancers that are increased in certain people that are treated for cancer. So those are things we want to focus on.

And what I've seen, which is true for people with a diagnosis of cancer, especially in the survivorship phase, is these people are very interested in living a healthier life and making sure that they don't have another diagnosis of cancer or really any other illness. And so focusing on wellness, nutrition is something that these patients are very much interested in and something that is a big part of our integrated program as well.

Dale Shepard, MD, PhD: And so here at the clinic, we have a number of specialties that have sort of a, it's like cardio-oncology and the kidney medicine group specializing in those. Are you working sort of directly with those individual subspecialties to make sure people get the right specialty care?

David Liska, MD: Right, exactly. So that's a thing we noticed early on when we set out to create this integrated program is that we have all these specialists, we have the foremost experts in the world, like you said, in a cardio-oncology or endocrine manifestations after treatment, and making sure that we integrate all that so that every patient with a young onset diagnosis has access to them, but also coordinated and comprehensive care. So making sure that we really connect those specialists with the right person at the right time.

Dale Shepard, MD, PhD: And so I guess the very practical question is how do we get the right patients to the program? We have a lot of ways that people get referred in. How do we ensure that people get to you?

David Liska, MD: Yeah, exactly. That's sort of the first question we had. And technology is a big factor here nowadays with technology where it is, we can really pick up very easily any person under the age of 50 with a new diagnosis. That's something we have an electronic dashboard for now that tells us as soon as a patient enters the system, and like you said, patients can enter the system in so many different ways. They can refer to a specific provider, they can just refer, we have the special cancer answer line, which helps connect our patients with the providers.

So we have many different avenues of how patients can enter the system, and we want to make sure that we detect all these patients no matter how they first got referred in, and make sure that we then have a coordinator or navigator reach out to that patient, tell them, "Hey, we have this program available, are you interested?" And then starts making these connections and coordinating the care so that everything happens seamlessly and that the communication between patients, providers is there all the time. And education, again, education not only of the patient and their family about what the cancer diagnosis entails, what the treatment entails, but also that providers here within such a large system as ours are aware of these resources that are available to the patients.

Dale Shepard, MD, PhD: And I guess in terms of the size of the organization, so how much of this is able to be translated out into the region and becomes sort of an enterprise initiative?

David Liska, MD: And like you said, it's a big size of the program, and we want to make sure that patients have access to our services no matter where they are, because for some patients, it's difficult to travel here to main campus. So our Young Onset Colorectal Center, for example, we started here at main campus, but now people, no matter where they come from, we have a way of, again, through the electronic medical record, figuring out when a patient has a diagnosis, and just by communicating and raising awareness to all our partners throughout the Cleveland Clinic System, they know that these services are available and know how to refer the patients to our centers. And our coordinators are then able, no matter where the patient is able to connect them with services that are close to them ideally, or that can be accessed virtually. So much can be done now through virtual visits where they have access no matter where the patients are.

Dale Shepard, MD, PhD: Just jumping back really quickly, back to colorectals, specifically early onset, early, you mentioned about patients that are sort of 45 and above getting screening. The change from 50 to 45 was good, but of course it misses a lot of those people that we unfortunately see that are 28 or 32. Do you think that this is going to ever come to the point where there's going to be screening at earlier ages?

David Liska, MD: Yeah, no, that's a great question. And something that patients, especially right when somebody was diagnosed in their early thirties, they'll ask, "Why aren't we doing screening at age 20?" Right? So whenever there's recommendations made for screening, a lot of it depends on the incidence number, the percentage in that population, because there's a risk benefit to any procedure we do.

So obviously colonoscopy is a very low risk and very safe, but there's a cost, there's a discomfort from the bowel prep. So you don't want to do it if the risk is extremely low, because then if the risk for cancer is extremely low, then the cost and the risk of the procedure wouldn't make sense. So the reason why it changed from 50 to 45 was because we saw an increase in the incidence of colorectal cancer in that population between the age of 45 to 50.

Below the age of 45, in an average risk individual. Again, this is important. It's a person that does not have a family history of colorectal cancer, that does not have a history of inflammatory bowel disease, no hereditary syndrome in the family, and in those average risk individuals, because the risk under the age of 45 is at this point still relatively low when looking at it sort of in the overall population sense. It does not make sense to lower the screening age at this point.

Now, if we see this trend continue and we see the incidence of cancers in people under the age of 45 go up further, then yeah, the screening age might change again. It's also important to realize that this is talking about screening. Screening means in somebody who is asymptomatic. Somebody who has symptoms, that has nothing to do with screening and has nothing to do with age. So if somebody has a new symptom such as blood in the stool, change in bowel habits, then no matter what age you are, you're supposed to bring that to the attention of your physician and discuss if a colonoscopy would be the next appropriate step.

Dale Shepard, MD, PhD: And I guess that was the next question I was going to ask is that it seems like it's really unfortunate when you see these people in clinic that are in their twenties and thirties, and they may have been trying to do the right things, and they've seen their primary care, they've been in the ER a couple of times and no one got the CT scan, no one did a colonoscopy, no one. So how do we best educate that group? Because unlike screening, that's probably the best way to pick up some of these people.

David Liska, MD: For sure. And there was a survey by the Colon Cancer Alliance, it was called the Never Too Young Initiative, where they found that young people with colorectal cancer often will have seen 3, 4, 5, 6 providers even before the diagnosis is made. The length of time with symptoms in young people has been shown to be a lot higher than in older people.

Some of that is, again, because people don't expect a diagnosis of colorectal cancer. Both the patient and the physician don't expect a diagnosis in people under the age of 50. So I think that with us raising awareness with the media, also talking more about how colorectal cancer is becoming a bigger problem in younger people and other cancers as well, breast cancer, when you notice a lump in your breast, that's something that we are hoping, again, will be brought to the attention of providers, and that providers also are paying attention to changing trends, changing epidemiologies so that it's not brushed off as a hemorrhoid, which still often happens when somebody has blood in their stool. And it's true in most cases it will be hemorrhoidal related, but because we know now that colorectal cancer is more common in younger people, even if you're young and you have a new symptom, you can't just attribute it to a benign cause without having a workup.

Dale Shepard, MD, PhD: So really comprehensive program you're putting together. A wide range of people might be listening in. What kind of guidance might you be able to offer somebody that might be listening go, "Hey, we need to do this kind of thing." What do you think is the biggest barrier to overcome? Any words of wisdom to try to make this work?

David Liska, MD: Right? Yeah, no, it takes a lot. It takes a lot of effort by people, especially the bigger the system it is, the more effort it takes. The first step is getting enough interested people together, and I think that's the easy step because there's a lot of very passionate physicians in their areas who are leading in their fields for young onset cancers, no matter what the specific diagnosis. But getting all these people together is kind of the first step and coming to the consensus that we need something that addresses this comprehensively and in a coordinated fashion.

So once you have these people together wanting to do it, I think one of the next steps is then investing in coordinators who can sort of do the legwork of picking up when a patient gets referred into the system and then reach out to that patient and make sure that we make these connections between the different patients and the different specialists that are necessary, be it oncologists, surgeons, radiation people, social workers, psychologists, genetic counselors, fertility experts, right? There's so many different specialists. So having a point person that can help guide the patient, but also coordinate between the different physicians is a critical component to it.

So those are, I think the first two early steps, but then also working on the research aspect of it, because that is so important, again, us to figure out why this is happening, in whom is this happening? Because maybe we can identify a subpopulation that is at higher risk where we should be starting to do screening earlier than 45 for colorectal cancer, earlier than 40 for breast cancer. If we can find a certain subpopulation where the risk is higher, then it would flip that sort of risk benefit analysis to saying maybe we should be doing colonoscopies earlier in certain people who have been exposed to a certain risk factor, if we can identify these risk factors.

But then also figuring out other specific treatments. So the research is an important part, and having sort of the infrastructure to enroll patients in trials, especially in the very young and the under-eighteen, that's a underserved population for research, where a lot of times it's hard to do clinical trials in people under the age of 18, and that's where the AYA population really is sort of an area of special needs is making sure that we enroll these patients in clinical trials, that these patients have access to clinical trials, because often there will be the cutting-edge treatment that's available.

So the research aspect is also huge and making sure that you do it at the same time, both the patient care aspect and the research aspect so that we get these patients enrolled in trials that we get. In order for us to learn what these environmental factors are, if we can collect environmental exposure data from these patients early on. Again, it requires an infrastructure. It requires people to help coordinate both the patient care but also the research aspect.

Dale Shepard, MD, PhD: Well, certainly this is an increasingly serious problem, and you have a good program that you're putting together and expanding and appreciate you sharing the information with us today.

David Liska, MD: Thanks so much for having me.

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