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Brigid Bergin: This is The Brian Lehrer Show on WNYC. Welcome back everybody. I'm Brigid Bergin, WNYC and Gothamist Reporter. This year, the White House designated March as National Colorectal Cancer Awareness Month to call attention to the second leading cause of cancer deaths in America. While screenings usually start around the age of 50, colorectal cancer is actually on track to become the leading cause of cancer death for people under 50 within the next decade. That's according to a recent study in the Journal of the American Medical Association.

The good news is the US Preventive Services Task Force changed the recommendation for those at risk to start screening at the age of 45. The bad news, not a lot of people know that. Joining me now to break down the latest research and what you can do to take care of your health is Matthew Yurgelun, physician and director of the Dana-Farber’s Lynch Syndrome Center. Dr. Yurgelun, welcome to WNYC.

Dr. Matthew Yurgelun: Thank you so much for having me.

Brigid Bergin: Listeners, we want to open the phones to you right away. Anyone have an experience with early detection of colorectal cancer, whether it was you or a loved one, what was the process like, and is there anything you'd like to share that might help someone else? Or we can take your questions for our guest, Matthew Yurgelun, physician and a director of Dana-Farber's Lynch Syndrome Center. You can tweet @BrianLehrer, or give us a call now at 212-433-WNYC. That's, of course, 212-433-9692. Doctor, before we get into prevention, can you break down what colorectal cancer is and who's most susceptible?

Dr. Matthew Yurgelun: Absolutely. Colorectal cancer is a malignancy, a cancer that develops in the large intestine, what we call the colon, which is really the last part of the digestive tract. After your body has done all of the digesting and absorption of the foods and nutrients that we eat, the colon itself is responsible for adjusting the water and salt balance within the body, and ultimately getting the stool, the waste out of the body.

The large intestine runs in the lower abdomen, across the abdomen, and then out the pelvis into the rectum through the anus where people then go to the bathroom. It has historically been one of the more common types of cancer. What we're seeing with some of these new data are really a shift in the demographics of who is getting colorectal cancer, which is calling us to action, to figure out what we need to do to try to stem the tide.

Brigid Bergin: Most colorectal cancers, as I understand, started as a growth called polyps, according to the American Cancer Society. Sometimes these polyps can cause no symptoms, but what are some of the symptoms people should be looking out for?

Dr. Matthew Yurgelun: Exactly. You're correct. Most colorectal cancers start off as a benign type of a growth called a polyp, specifically a type of polyp called an adenoma, which often don't cause symptoms until they get large. The symptoms that often trigger concern for us would be bleeding, blood in the stool, whether it's while wiping or just mixed within the stool. Certainly, any change to the pattern of the bowels, going to the bathroom more frequently, having less warning when you need to go, having pain when you move your bowels. Certainly any change to the size or the shape of the stool.

People who are losing weight, that aren't trying to lose weight, or people who have unexplained pain in the abdomen or the pelvis, those are sometimes some red flag symptoms that really should trigger concern that there could be a colorectal cancer.

Brigid Bergin: As I understand, there are a few different ways to get screened with, of course, colonoscopies being the most popular. Can you talk about the most common ways to get screened and what your recommendation is?

Dr. Matthew Yurgelun: Absolutely. You're correct. Colonoscopies are among the most well-known version of colorectal cancer screening. A colonoscopy is a procedure typically done by a surgeon or a gastroenterologist where people do what's called a bowel prep. Usually the night before you drink a lot of liquid that makes you go to the bathroom until the only thing that's coming out is water. Then people are put under some degree of anesthesia.

The endoscopist, the proceduralist uses a scope, which is a long, thin, flexible tube. After somebody's had anesthesia, the tip of the tube gets inserted into the anus, and then the scope is threaded around the entirety of the bowel to look for any cancers, to look for any polyps or growths.

If there are polyps that are seen, they typically can be removed at the time of the procedure and then sent off to the lab to tell us what type of polyp they are. Certainly, if there were to be something like a tumor or a cancer, that can be biopsied at the time as well to try to confirm the concern that it could be a malignant tumor. That's not the only way in which people can be screened for colorectal cancer.

The nice thing about a colonoscopy is that it does remove polyps, and the act of removing a polyp that's potentially pre-cancerous reduces somebody's chance of going on to develop colorectal cancer. For a number of reasons, some people choose not to pursue colonoscopies. There are now stool-based tests that can be done where you essentially collect a stool sample and you either look for blood or you look for certain DNA markers. Those are non-invasive forms of screening. If they're abnormal, then somebody typically needs to go on to have a colonoscopy. That can be one way to still get screened for colorectal cancer without, for example, needing to undergo a procedure like a colonoscopy, which typically requires taking a day off from work, not to mention doing the prep and everything.

Brigid Bergin: Sure. As I mentioned in the intro, colorectal cancer is on track to become the leading cause of cancer deaths in adults under age 50 by 2030. That is so striking. What does the research say about why younger people are more susceptible to colorectal cancer now?

Dr. Matthew Yurgelun: That's the question that I think we're really trying hard to answer. We've absolutely seen over the past 20 years, if you look across the entirety of the US population, colorectal cancer rates are going down, but the rate at which they're going down has slowed down. When you really dive into some of these recent data, the reason these rates are slowing down across the entire US population is because in younger adults, the rates are going up, and they're going up in a not so subtle way.

In people under the age of 50, we're seeing rising rates of colorectal cancer across the board, disproportionately cancers that are found at a later stage where cure is often more difficult or sometimes flat out impossible by the time the cancer is found. There have been some data showing that factors such as obesity, alcohol use, diet is contributing somewhat, but by no means that those factors explain these massive shifts that we've been seeing here. We absolutely are seeing some people who live the healthiest lifestyle imaginable, who are still getting really blindsided with these cancers at a young age.

Brigid Bergin: Doctor, are the risks any different between men and women? Are the cases showing up at higher rates for either of them or showing up differently for them?

Dr. Matthew Yurgelun: I wouldn't say that it's tremendously different across men and women. We're seeing slightly higher rates across the board in males versus females, but this is a phenomenon that by no means is limited to men only or to women only. Certainly, some of the red flag symptoms, the warning symptoms that we look for apply to both men and women.

I think one way in which women sometimes can have their diagnosis further delayed is that some women, it's not unusual for them to have some degree of anemia from iron deficiency if they have blood loss from their periods. Sometimes that can I think since that can be a tip-off sign that somebody might have a colorectal cancer, and we need to be careful to make sure that we're not providing false reassurance when we see somebody with unexplained or more significant iron deficiency.

Brigid Bergin: Let's talk a little bit about the costs. I want to bring in one of our callers, Bill from Greenwich Village, who I know has a question related to this. I want to say on the American Cancer Society website, it says in big, bold letters, before you get a screening colonoscopy, ask your insurance company how much of anything you should expect to pay for it. Bill, I think you have a question related to some of the costs. Welcome to WNYC.

Bill: Hello. Yes. My doctor gave me a prescription for a stool-based Cologuard test, but then the word came back. I'm over 85, and they would only pay for it between 50 and 85. If I wanted to do it on my own, it would be $650.

Brigid Bergin: Wow. Bill, I want to ask the doctor, with private insurance, is that standard that there are age cutoffs, and for folks who maybe fall outside of either of the screening age at the top that are younger or older than what insurance will cover? Is that what we're talking about here, about $650 to get this type of screening?

Dr. Matthew Yurgelun: I think for people who are outside of the ages at which routine screening, asymptomatic screening for people who don't have any red flag symptoms or family histories or other things that might tip them off to say that they need more aggressive screening that it doesn't necessarily surprise me that these can be costly tests when we're potentially doing them outside of the ages at which they're currently recommended.

That said, I think it's become clear that the age guidelines that we use to start screening at age 45 and to consider stopping screening as people get older in life, those age cutoffs only get us so far when it comes to prevention. Unfortunately, there are people being diagnosed well before the age of 45, and there are people who are in their late 70s and into their 80s who are in otherwise excellent health where stopping screening might not make sense for them because they otherwise have a very good life expectancy, and we should be trying to prevent these cancers.

I think there's a lot that we need to figure out to try to refine who we screen, when we screen. The age cutoffs are part of it, but I don't think they get us as far as we need to go. That's where insurers make their decisions is based on national guidelines of who gets screening. Therefore, when people fall outside those guidelines, the way our health system is set up, there's oftentimes a cost with that, so we need to do better.

Brigid Bergin: Is this kind of screening covered for folks who are on Medicare?

Dr. Matthew Yurgelun: This is typically covered for folks who are on Medicare, yes, that is my understanding.

Brigid Bergin: We have a call from Jim in Morris Township, with a question for you, doctor. Jim, welcome to WNYC.

Jim: Hi. Is there a difference between pre-cancerous polyps and benign polyps?

Dr. Matthew Yurgelun: It's a good question. We often will refer to polyps that we call adenomas as being pre-cancerous. I always find that a little bit misleading or a little bit alarmist on my end. Most adenomas will never turn into a cancer. They are benign. They are not cancers, but they can be potentially pre-cancerous. Most colorectal cancers start off as adenomas, but most adenomas even if left in place will never turn into cancers. The problem is we're not so good at identifying which ones are the ones that are bound and determined to turn into cancer if left in place and which ones are not. Not all polyps are pre-cancerous, but pre-cancerous polyps by definition, I would say are benign in that they're not currently cancer, but they could be on their way to becoming cancer if left in place.

Brigid Bergin: Jim, thanks so much for calling WNYC. Doctor, I want to get back to the screening recommendation age which we were talking about, which I mentioned in the intro. This guidance from the US Preventive Service Task Force which says those at risk should start screening at the age of 45. Is this for higher risk patients or is this for everyone?

Dr. Matthew Yurgelun: This would be for everyone. This would be at a minimum for people who are at average risk. For higher risk individuals, they may need to start screening well before age 45. This would be for people who have no risk factors, no family history, no worrisome symptoms, no genetic predisposition to colorectal cancer. The current recommendations are to start screening at age 45.

Brigid Bergin: You mentioned genetic testing. Can you talk about how available genetic testing is for people who are concerned that they might be higher risk?

Dr. Matthew Yurgelun: Genetic testing has become much more available and accessible, and simply affordable in recent years. Nowadays there are a number of ways in which people can pursue genetic testing. Sometimes through their primary care doctors, through their gastroenterologists or through cancer genetics centers. There are some direct-to-consumer type approaches that are out there. Those sometimes have some limitations as far as the degree of counseling that people get along with that. I do encourage some caution there and usually recommend that people pursue testing with the guidance of a certified genetic counselor.

These are tests that oftentimes, even if it's not covered by insurance, the out-of-pocket for people is on the order of $250. If it is covered by insurance because somebody meets guidelines, there often is no out-of-pocket or minimal out-of-pocket for people. This is something that's become quite a bit more accessible for people to understand if they might have an inherited predisposition, especially if they have a concerning history of their own and/or a family history that that's suggestive of potential inherited risk.

Brigid Bergin: Doctor, I'm just wondering, after three years of a pandemic, some people are still catching up on screenings and doctor visits. How much has the pandemic and pandemic-related drops in screenings contributed to these numbers in any meaningful way?

Dr. Matthew Yurgelun: The pandemic hasn't helped. I think that the trends that we're seeing in some of these new data really were all occurring before the pandemic in the first place. What we're seeing in some of these new statistics is that screening rates across the board are suboptimal. Screening rates in the younger segment of the population who are recommended to get colorectal cancer screening in that 45 to 49-year-old range are particularly suboptimal. We fell further behind with the pandemic. I think if in the initial days of the pandemic, at least our institution here flat out stopped doing any screening procedures for at least a couple of months because of risks of transmission. They were really only doing colonoscopies for people where it was particularly urgent and emergent.

That has long since passed us by. We're now up and doing routine surveillance and have been now for a couple of years. I think even that a couple of month pause that we had, we're still catching up, and I think our patients in the population is still catching up, which is not helping things.

Brigid Bergin: Briefly joining us now is actually one of your patients, Dr. Yurgelun. Hi, Justin. Welcome to WNYC.

Justin: Thank you for having me.

Brigid Bergin: Justin, you followed these new guidelines when in for your screening before the age of 50. Can you talk about why you did that? Were you having symptoms?

Justin: In hindsight, I was having some symptoms, although nothing that really triggered me to go to the doctor. It was really to just that point you were talking about towards the end of the pandemic, beginning of last year at least when we were getting back to somewhat normal. I made a physical appointment with my PCP, which was the first time I had gone in a couple of years because I went right before the pandemic was my last physical.

Brigid Bergin: You've said that your doctor told you that you wouldn't have made it to 50 if you didn't get screened when you did, how advanced was your diagnosis?

Justin: Well, after my colonoscopy, which I had started with a Cologuard, and that came back positive, and then I had a colonoscopy. The doctor came in after, as I was getting ready for my husband to pick me up, and basically said, "This is cancer. You need to get a treatment team right away." She wasn't going to sugarcoat it, she said because of how far advanced it was. She was surprised I didn't have more symptoms and basically said that I wouldn't have made it to 50 without coming in to see her.

Brigid Bergin: Wow. Justin, you, as I understand, are also hoping to spread awareness about Lynch syndrome, which you have. What is Lynch syndrome, and how many people does it impact in the US?

Justin: Well, it's actually one of the most common inherited cancer conditions as I've learned. Although, to be fully honest, we didn't know that this was something in our family. It was discovered after I was diagnosed. Now my brothers and my parents are getting screened so that we can ensure that whichever family members may be impacted by this can also begin screening for this as well.

Brigid Bergin: Thank you so much for joining us, Justin, and for sharing your experience. Dr. Yurgelun, let's talk some more about the link between cancer and Lynch syndrome. If you find out that you do have Lynch syndrome, are there things you can do to better mitigate the risk of cancer?

Dr. Matthew Yurgelun: Absolutely, and that's, that's the message I try to drive home to my patients as to why it's important to make this diagnosis, to spread awareness through somebody's family. Genetics are not destiny. Genetics tip us off that there are risks, and there's a list of risks of different cancer types that people have if they have Lynch syndrome, but there really is so much we can do to mitigate those risks. The colorectal cancer risk is the one that we think of the most with the Lynch syndrome, and depending on the gene involved, people with Lynch syndrome can have a lifetime likelihood of colorectal cancer anywhere from 20%, maybe as high as 80%.

These are often colorectal cancers that begin particularly early in life, sometimes when people are in their 20s or in their 30s. We have very high-quality data that early onset colonoscopies, frequent colonoscopies, often every one to two years, and even things like aspirin actually can be dramatically effective at not just finding cancer early, but flat-out preventing colorectal cancer for people with Lynch syndrome. Similar principles apply to the other cancers for which people have risk if they have Lynch syndrome.

Brigid Bergin: We have an absolutely full board of callers. I want to go to Steve in Brooklyn. Steve, do you have a question for Dr. Yurgelun?

Steve: I sure do. Thanks for taking my call. I went in for, similar to the last caller, a routine appointment after the pandemic, got a colonoscopy, and found out, although I was pretty much symptoms free, that I'd had colorectal cancer for maybe five or six years. It was stage four metastatic and inoperable. It was a huge shock. What started to happen was I received a series of drugs and very unexpectedly to everybody, experienced a big turnaround. I've now been through all the modalities. I've had chemo for nine months. I had a big surgery, and I'm now on radiation.

My question is, as a young person, I wonder if maybe the story of cancer needs to change a little bit, the way we think about it, because maybe hope is a little disempowering. Is there another way of considering it that needs to evolve? If you've heard any conversations or if you think about that with your patients as they get younger and younger, do you communicate about it differently?

Brigid Bergin: Really interesting question, Steve. Dr. Yurgelun, what are your thoughts?

Dr. Matthew Yurgelun: I think when we communicate to our patients about cancer risk, or even an actual cancer that they might be dealing with, I think, absolutely, we should take into account just where they are in life, their own preferences, their own values. I think as it relates to hope specifically, I tell my patients, I tend to be an optimist if I'm treating them for a cancer.

I've seen some phenomenal outcomes in people who really looked like they were behind the eight ball. At the same time, I always try to be honest, and open, and realistic with my patients too. I think there is a fine line between providing hope to our patients who are going through a devastating diagnosis, giving them honest information. That's part of the job of an oncologist. It's not always an easy job. It's not always an easy job to be a patient going through this obviously, too.

I think, as far as just reframing how we think about cancer as a whole, or colorectal cancer specifically, one way I think in which the medical community, and I would argue that the general public, too, needs to reframe our thought process about colorectal cancer, is that we have historically thought of this as a cancer of people who are middle-aged or older. These new data show that no, this is also a cancer of young people now, too. That's part of how we get the message out to hopefully facilitate better early prevention.

Brigid Bergin: Steve, I'm wondering if someone who had to be in the receiving end of this information, this diagnosis and the story that you heard, do you have thoughts about how you would like to hear this story change? Besides hope, what would you like people receiving this diagnosis to hear?

Steve: I really appreciate the follow-up. I think, for me, I am really interested in surfacing the positive side of this journey as a young person, because it affords wisdom that is really hard one. There are lessons that you don't get to learn as a young person that you're forced to learn, thoughts you're forced to have. I would've loved to help focusing on that and having conversations around what do you get out of this? Especially as somebody who has been in a very dire situation with being told a prognosis of less than a year, and now being told something very different. My biggest hope and challenge is not to let go of this because I'm a better person because of this. I don't know that I wouldn't want to do this again with a positive outcome. I want that conversation to be a part of it.

Brigid Bergin: Steve, thank you so much for sharing. I really appreciate your willingness to talk about what was challenging. It sounds like an experience that you learned a lot from. Thank you so much. I want to go to Mike in Brooklyn, who has another question for you, Dr. Yurgelun. Mike, welcome to WNYC.

Mike: Hello.

Brigid Bergin: Hi, Mike. Do you have a question for Dr. Yurgelun?

Mike: I do. Following that very profound and heartfelt call, how to get more people to have that outcome that Steve had. It really frustrates me to hear early on in this segment, the rates are clearly-- It's getting younger and yet the recommendations are 45. Insurance won't cover it until it's 50. What's the pipeline there from the emerging science and data to forcing these companies to cover these early screenings that can make the difference between life and death? It's a class question. Steve was talking about empowerment, and I think that this system and the way that the healthcare system is set up is to be entirely disempowering. It's a tough one for the doctor. I appreciate him coming on and having this conversation. Thanks.

Brigid Bergin: Mike, thank you so much for calling and stealing the line from the great Brian Lehrer. We appreciate allowing your babies to make their radio debut right now. Dr. Yurgelun, a lot to unpack there, a lot of emotion. Obviously, we are talking about these diseases that have existential outcomes. What are some of your reaction to both Steve and Mike?

Dr. Matthew Yurgelun: They're all great points. I wish I had all the answers. It's absolutely true. From some of these new data, what we're seeing is that when we talk about younger onset colorectal cancer, the burden is being borne disproportionately by those who are already behind the eight ball in the first place. We're seeing that these rates are higher among non-White individuals. We're seeing that these rates are higher among underinsured individuals, individuals with less of an education. That the screening rates are particularly poor amongst these groups as well.

We need to get the word out there better about screening the people who currently meet guidelines, but we also need to understand what's happening with the people who are currently falling outside of guidelines and being diagnosed with colorectal cancer in the first place. How do we refine our identification of people who are at risk? Our current tools work well, but they're very imperfect. There's a real question about, how do we implement this so that people are actually pursuing the screening that's being recommended? Not to mention just access to screening and then access to follow-up care should they have symptoms or should they have an abnormal screen.

Brigid Bergin: Dr. Yurgelun, you are the director of the Lynch Syndrome Center. We started to talk about it and then we brought in some of our really amazing callers to the conversation. I want to circle back just to get some key information on this because it's really pretty striking. This is the first that I'm learning about Lynch syndrome. It's estimated that every 1 in 300 adults has it. How can people go about getting tested for it? Are there any indicators that someone might have Lynch syndrome, say, if a doctor doesn't think they need to test a patient for it?

Dr. Matthew Yurgelun: Absolutely. This is a syndrome we've been trying to get the word out about for some time now. I think as it relates to inherited cancer risk, a lot of people are familiar with the so-called BRCA genes, BRCA1 one and BRCA2. The actress Angelina Jolie made a lot of headway at spreading awareness about this with her own journey. Lynch syndrome is just as common, but unfortunately, has not had quite the same name recognition. We think there are more than a million people in the US who have Lynch syndrome who are not aware of it. Most of whom are not aware of it.

It's an inherited predisposition to cancer. It's caused by a specific genetic abnormality in 1 out of 5 different genes. People who have Lynch syndrome have an increased risk, not just for colorectal cancer, but also for uterine cancer, ovarian cancer, stomach cancer, pancreatic cancer, urinary cancers. The list goes on. Often at young ages. Certainly, individuals who are diagnosed with any of these cancers before the age of 50, people who have a family history of some of these cancers, especially if they're younger onset, those are the types of things that really should tip us off that somebody needs genetic testing.

As I mentioned before, if we know that somebody has Lynch syndrome, there really is so much that we can do that's highly effective at preventing these cancers from developing in the first place. For people who have a concerning family history or maybe even themselves have a history of one or more of these cancers, they absolutely should be thinking about genetic testing. Genetic testing can be done as a simple blood test or a saliva test. If people are found to have Lynch syndrome, there are guidelines in place that really support the use of colonoscopies. Oftentimes, starting when people are in their 20s, not to mention other forms of preventative care.

Brigid Bergin: Finally, doctor, do you know if this testing is covered by health insurance?

Dr. Matthew Yurgelun: For people who meet criteria, in that, they have themselves had a cancer of concern, especially if it's at a younger age, or if their cancer has certain molecular features that are typically a tip off, and/or if somebody has a family history that meets certain criteria as far as the types of cancers, the ages at diagnosis, this is considered standard of care to be tested for Lynch syndrome. Then, if positive, to get appropriate screening.

Brigid Bergin: We're going to leave it there for now. My guest has been Matthew Yurgelun, physician and director of Dana-Farber's Lynch Syndrome Center. Dr. Yurgelun, thanks so much for coming on.

Dr. Matthew Yurgelun: Thank you so much for having me and for helping to raise awareness.

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