Dana-Farber’s Young-Onset Colorectal Cancer Center launched a new series of educational workshops, Gut Instincts: A Series on Young-Onset Colorectal Cancer. The first event took place on Thursday, March 4 and focused on Best Practices for Screening Young People.
with me. I have an esteemed panel uh including Dr Rachel Winter who's a gastroenterologist. Vivian Gonzalez Mitchell an internist and then a patient with young onset colon cancer. Vanessa. Vanessa Sebastian. So um I would like each of them to maybe introduce themselves first and give us a little bit background on their uh their interests and uh their goals for this session as well. So Rachel, did you want to start us off? Thank you very much for the invitation to participate kimmy. So my name is Rachel Winter. I am a gastroenterologist at Brigham and Women's Hospital with a specialty both clinically and from a research perspective and inflammatory bowel disease. We're focusing on disease and all sort of colitis. Great Vivian hi my name is Vivian Mitchell. I'm an internet primary care doctor at one of the economic practices at the Brigham and Women's Hospital. Prior to that I I did seven years as a hospitalist and then transition to primary care. And then Vanessa. My name is Vanessa Sebastian and I am in the medical field as well. I'm an A. P. R. N. And A. C. RNA. And I was diagnosed with colorectal cancer in july of 2020 with very little symptoms. Saw several physicians but you know all my diagnoses were related to the physicians that I saw in their specialty. So it was it was missed by several physicians. Thank you and we're going to hear more about your story a little bit later um in the event. So I wanted to talk about screening today. It is so important because of the rise and young onset colorectal cancer that has been happening across the country in recent decades. So, if we can go to the next slide, so, colorectal cancer is actually a huge problem in the US as well as globally, although it is a cancer that isn't talked about a lot, it is actually the third leading cause of cancer in both men and women. Next slide And it is also the third leading cause of cancer death in both men and women in 2021. And actually, if you combine men and women together, it becomes the second leading cause of cancer death, with an estimated 50,000 deaths expected this year from this disease. Next slide Fortunately, screening is effective and treatments have improved and consequently people who are over the age of 50 who are routinely being screened. The incidence of colon cancer has declined steadily over the last several decades. Unfortunately, this benefit and this improvement has not been seen in people under the age of 50. Where since approximately the mid-1990s, we have seen a steady rise in the incidence of both colon and rectal cancer in both men and women at a rate of about 2% per year. Next side. And this is a trend that that is actually being seen across the country. It is being documented in 40 out of 47 states where we have available data next slide as well as all around the world, predominantly in countries in Western europe as well as Australia and new Zealand interestingly, we are seeing mixed trends in middle europe and stable trends in mediterranean countries as well as in the Far East. And because we know that colorectal cancer is so strongly linked to environmental and diet and lifestyle factors, these trends certainly raise interesting hypotheses about what might be underlying this rise in colon cancer in young people. Next slide. And this is not a phenomenon that's isolated in time either. Unfortunately, it is expected to continue where by the year 2030 colon cancer rates are estimated to rise by 90% compared to currently. And rectal cancer rates are expected to rise by a staggering 124%. Such that almost a quarter of all rectal cancer diagnoses in 2030 are expected in people under the age of 50. Next slide. And possibly the most frightening thing about all these statistics is that we actually do not know what the underlying cause of this steady rise is. Although there is a higher chance of finding a family history or having a hereditary syndrome. If you are young and diagnosed with colon cancer, you can see from this pie chart here that the vast majority of our young patients have no known risk factors for the disease and so their cause is unknown. Next side and as I mentioned, diet and lifestyle factors are linked to a risk of colorectal cancer overall. And so the hypotheses have focused around possibly obesity being an underlying cause because rates of obesity have also been increasing in the US during the same time period. And it seems to have paralleled the rise in young onset colorectal cancer. And we did do a small study that did show that having a B. M. I. of 30 or higher, it does seem to be associated with a higher risk of developing colon cancer at an age under 50. We've also shown in another small study that sedentary behavior also tends to be associated with an increased risk of developing this disease early. But if you click again, um clearly that is not the whole explanation. We lost Chadwick Boseman last year, two young onset colon cancer at a very young age and he was obviously in the very good shape and lead a very healthy lifestyle. So clearly it isn't just these diet and lifestyle factors that are fully accounting for this rise in young onset colon cancer. Next slide, what we actually think might be happening are that there might be further environmental factors. Other things that perhaps date back to even early life exposures when people were Children and adolescents that may be contributing to possibly shaping our microbiome, which is the community of microorganisms that live in all of our guts, which then influences our immune systems, which also have a direct impact on our risk of developing colon cancer next side. So further research must be done. The other scary statistic that I wanted to share with everybody is that unfortunately, death from colon cancer among young people is also rising. You can see that in people above the age of 50, who are getting screened and having their cancers detected at an earlier stage when it's much more curable. Death rates have actually been declining in mortality rates improving. But this is not the trend that we are seeing in young people under the age of 50. We're starting in the 2000s, we are now starting to see a slow uptick in the rates of death from this disease in young people. Next slide. Part of the reason for the increasing mortality rates are that there is a lack of awareness and cancer is just not on the radar of somebody who's otherwise young and healthy who develops symptoms. And so in this survey of about 1000 young patients diagnosed with colon cancer, 41% reported waiting six months or more before they sought medical attention for their symptoms. If you click again, 67% reported having to see two or more physicians prior to their diagnosis um and having significant delays in diagnosis And this leads to a large proportion of our young onset colorectal cancer patients being diagnosed with much more advanced stages of colon cancer than in a general colon cancer population. With 71% of these young patients in this survey Reporting stage three or 4 disease, which we all know is a lot less curable than if a cancer was caught at stage one or two. And this is really the impetus for this first event. In our gut instinct series, we hope to raise education and awareness around this rising trend of young onset colon cancer and hopefully get some more information and have further discussion about how best to improve prevention and early detection among these young patients. So with that, I'd like to pass the baton over to Rachel to talk about a little bit more about screening. Thanks kimmy. So, I will talk just about the screening guidelines that are currently available and also the methods of screening that are available to patients. Next slide. So just as a reminder, these are recommendations for the average risk individual and somebody is considered average risk if none of the following apply. So if they have no personal history of colorectal cancer or certain types of polyps. So specifically cecil serrated polyps or adenomas, if they have no personal history of inflammatory bowel disease which includes Crohn's disease are all sort of colitis, no personal history of having had abdominal or pelvic radiation for treatment of a prior cancer, no family history of colorectal cancer and also no known or or suspected personal history of a hereditary colorectal cancer syndrome such as familial adenomas, polyp Asus or lynch syndrome. Next slide. So there are two kind of broad categories of colon cancer screening, Their stool based tests and their direct visualization tests. So there are three different types of stool based tests. There are fit tests based or F. O. B. T. Tests or a multi targeted stool DNA test, which is known as the color guard test. And as you can see, these are done more frequently. Either on an annual basis or the color guard is recommended to be done every three years. And then the direct visualization tests include endoscopy or radiology um which includes colonoscopy for endoscopy and then ct Kahlan ah graffiti. The guidelines do list flexible sigmoidoscopy um which is kind of a mini colonoscopy. It looks at just the left side of the colon. This is rarely used in the United States as most people who are referred for an endoscopic evaluation have a colonoscopy. Next slide. So there are advantages and disadvantages of all of these different tests. Um I would say the main advantage of the of all of the stool based tests are that there's no bowel prep required. These are easy to do. Um They can all be done at home so there's no time taken off of work. Um The major disadvantages are that they are not often as accurate as the other tests. So they may miss some polyps or cancer. Um And then also there may be false positives and if um a patient has a positive test regardless of whether it's a true positive or a false positive, they then get referred for a diagnostic colonoscopy usually. Um Then we can talk a little bit later about that in terms of insurance implications. Um Next side and then the visualization based screening. I am going to leave off flexible sigmoidoscopy since we rarely do that in the United States. Um But colonoscopy, the main advantage is that it is less frequent. So for patients who have no personal or family history of colon cancer or who are considered average risk as we discussed before. And if they never have polyps on their colonoscopies, then they would present for a colonoscopy every 10 years we are able to visualize the entire colon. We can identify other diseases such as inflammatory bowel diseases. And it also can be a screening tool as well as a diagnostic or therapeutic intervention. At the same time. If we see polyps or any lesions we can biopsy them and or respect them. The major disadvantage is that a bowel prep is required. Um It's more costly, both in terms of the actual cost of the procedure and the patient has to take a day off from work to present for the procedure. Um And there are small risks of procedural complications though a risk of a of a significant complication. From a colonoscopy is less than one in 1000 ct Kahlan og ra fee is a radiographic method to detect polyps. Um it is done every five years assuming that a patient is average risk and never has a positive study. One of the advantages as compared to colonoscopy is that no sedation is is required. Um And you can see the entire colon, it may miss small polyps like a colonoscopy, a bowel prep is required. Um And in most places if a patient has a positive ct Kahlan ah graffiti, they then need to set separately schedule a colonoscopy. So it may require two bowel preps um and two days of coming into the hospital. In order for us to be evaluated. Next slide, There are four main societies that have put out screening guidelines. The American cancer society recommends screening everybody who is at average risk starting at age 45. The United States preventive Services Task force or U. S. P. S. T. F. Will finalize their guidelines. Also recommending the same the G. I. Society. So the A. C. G. And the A. G. A. Have not yet changed their recommendations. So they currently recommend to screen everybody starting at age 50 to start screening african americans at age 45 next line. So there are at the present time, no societal recommendations to start screening average risk individuals before age 45. Um As kimmy said, you know, some of these symptoms may be non specific and patients may or may not present with them. Some of the things to be aware of our rectal bleeding. A change in bowel habits, gas or bloating or some non specific G. I symptoms that are persistent or just um don't go away or abnormal for a patient. Um I often consider doing a colonoscopy versus a flex flexible sigmoidoscopy if a procedure is warranted so that we can visualize the entire colon, it's important to take into mind either your patients or your own family history um and to ask family members if they have a history of colon cancer or polyps and at what age they started um to have polyps. And then for providers really just use your best clinical judgment and refer them for a screening test or to gastroenterology. Um if you um if you have any suspicion and for patients, just remember not to ignore your symptoms, we want to hear if you're having any abnormal symptoms. So as I mentioned, there are different types of polyps in patients who are under 45 who present for colonoscopy, the majority of them are presenting for a diagnostic colonoscopy. Since there are no guidelines right now to screen individuals in this group, There are two types of polyps. Um There are hyper plastic polyps which have no malignant potential. Um And so we actually do not require or recommend that patients have more frequent screening if they have a history of hyper plastic polyps. And then even the polyps that have the potential to become cancer. The polyps in and of themselves are often benign. Um Those types of polyps, as I mentioned earlier are either adenomas or cecil serrated polyps. And so depending on the number and the size of these types of polyps that patients have that will dictate the frequency of how um of their colonoscopies and their screening. Next side, I will say that I refer to the Dana Farber Cancer Institute um Center for Cancer Prevention and genetics clinic quite frequently um when individuals under age 45 have either adenomas or cecil ulcerated polyps. And I think this is a wonderful resource both for providers and for patients they are a multidisciplinary group and they can really help with recommendations regarding genetic testing, screening of family members and also timing of colonoscopy as we sometimes shorten the interval between colonoscopies if um if individuals have polyps at a young age and especially large polyps, I've placed the number here um for you for patients to call for a new patient appointment and for those of us in our network, the referral can be placed in epic and I will turn it back to you, kimmy. Thank you so much. That was a great overview of screening guidelines and the different options that clinicians have in terms of talking about screening with their patients and next I really want to have a conversation, especially from the internist point of view because primary care doctors and other clinicians are often the first ones evaluating young patients when they do come in with symptoms. So Vivian was hoping that you could maybe give an overview of your general approach to colorectal cancer screening, both for people above the age of 50, but then also for young people under the age of 50 who may be coming in with symptoms. Yeah, thank you, Kimmy. Um I first want to start with briefcase from one of my patients seven years ago who highlighted this increased incidents from me and I was just starting my practice. And You know, it wasn't quite aware of the problem that we're facing now. Um and this was a 46 year old woman who came in with increasing constipation over a period of six weeks and it's not, you know, constipation is not something we think about, you know, as that problematic. We all get constipated and we try things out and we don't call our doctor about it, but it was increasingly getting worse and not responding to laxatives and she started to feel some pressure. And that's when she came in and did an urgent care visit with me. Um You know, there was, she looked great, she didn't look sick and she felt a little bit, you know, like her belly was a little distended but it wasn't obvious on her exam. Um And you know, I still remember when she said to me, I feel like my anatomy is off that something is not quite right and sexual intercourse course actually felt different to her. Um you know, and I bring this up because as internists, we're not just thinking about, you know, colon cancer all the time. We're thinking about other symptoms and trying to, you know, think broadly. Um But I'll never forget that comment, that there was some, you know, pelvic discomfort and there were that for me was a huge red flag. Um You know, the exam itself was not that revealing, except she did have a cold blood in her stool and you know, I make that kind of a priority during my approach to any symptoms um to make make sure that patients get a rectal exam and check for a cold blood. Um I have to say that some young patients are very hesitant about that and sometimes I can't get them to accept the rectal exam. And then I resort to um stool cards and I have them take them home if that's the case. Um in this situation, my patient, um you know, because it was so clearly that she needed a colonoscopy. You know, she had worsening symptoms and occult blood. She went straight to colonoscopy and I had a significant rectal sigmoid cancer, colon cancer that Um you know, proceeded to surgery, chemotherapy and she's now 53 years old and in remission, so she's a success story, but it still was very scary that um six weeks of symptoms she presented with us. Um So, you know, since then I um try to take a general approach in my practice to start educating patients early on so that when things come up there, they're more likely to bring it up, right? So it's it's creating an awareness And in primary care, the more time you invest in your patients from like day one, it pays up like pays off later on. Um so for new patients that I've never met, I spent a lot of time with family history, um and not just colon cancer, but other cancers that may suggest that there could be a syndrome. So there might be some endometrial cancer and other things that could also be linked to colon cancer risk. And I also refer to the same genetics planet because they'll ask for, you know, other genetic syndromes and that would define um you know, the course of surveillance for my patients. Um very young patients don't often know their family history. So I give them some homework, I say, go home and you know, talk to your parents, ask them if they had an early colonoscopy or more than one colonoscopy, you know, because now we don't see that much colon cancer in these parents and they're getting polyps removed, which is a good thing. So I need to know about their polyps and you know, then I get an email a couple of weeks later and they give me additional family history. Um But studying that conversation and awareness then educational under will bring things up later um For my patients who are in their late 30s, early 40s, I it's become a habit of me to start talking to them during the physical extent as I talking about other things and I do the abdominal exam, I do a little review systems and I always ask about rectal bleeding or about movement changes just to kind of make them, you know, make them aware that I'm interested in knowing about those symptoms. And you know, and I say you know, we don't do colonoscopy right now, but if you happen to have any of these symptoms, let me know because then I would do a diagnostic, you know, referring for a diagnostic colonoscopy. So this is you know, things that you reinforce every year and you know, not every patient comes every year to see me. And so you want to plant little seeds so that they reach out to you when um when they need help. Um Since this case I've always heard about the um that the guidelines at some point will be changing to start growing cancer screening um at an earlier age and I've been telling my patients were you know, 45 to 50 I tell them, oh you know, you may hear something about these guidelines and you know right now I can't do it but you know start, you know thinking about it so that they're aware of what the procedure um Most people um are afraid of the procedure of a colonoscopy but then when I explain it to them that they're not gonna feel anything that what most people dislike is a prep, then they start relaxing. Um and you know, and then there's the other pieces uh and I don't want to forget it's a cultural piece um that there are a lot um of patients who just cannot go there. They just can they there's a the idea of having a colonoscopy, there's a huge barrier there. Um and we recently a couple of years ago had and mortality and mortality morbidity and mortality conference Eminem and with this patient of you know of our institution who who died of metastatic colon cancer. And when they looked back he had had about a colonoscopy ordered. Um but never follow through. And you know, he was a latino man and and he just could not get over this idea of of getting a colonoscopy. And you know, the take home point is and we say this all the time is that the best test is the one that gets done. And when people look back, you know, they think, well if we had thought of a fit test or a color guard, you know what he had then gone to colonoscopy that was positive. Um so you know, I think for me is the goal is to create a therapeutic relationship treat each patient, you know, not with the one size fits all see where they are in their awareness and what they're willing to go through and then and educate and if someone comes in with symptoms, um, you know, I make sure that I do an extensive review system. So if someone is having, you know, bloating or diarrhea, then I want to make sure that they're not having night sweats and fevers or um, you know, bloody stools, You know, the truth is that 90, 90% of the things that we see in primary care are nothing right. And so you're trying to tease out the red flags and and figure out, you know, which patient has irritable bowel syndrome and which one has inflammatory bowel disease. Um, and so that's, you know, getting to know your patient is key. And so I personally, you know, I'm not rushing to procedures on day one, I want to establish report, get a sense of what's happening in someone's life, keeping a journal. And I usually, you know, make give someone two ways to kind of try a few things and sort things out and, and then have them look back with me. Um, I don't know if you want me to pass for a second. Yeah, no, that was great. And I think, um, you know, it's, I'm so impressed by primary care doctors and internists because they do have such a challenging job going through symptoms that are really common and can be due to a multitude of conditions, most of which are benign and do self resolve. And it's really picking out those red flags? And I think, um, you know, there's so much to unpack from, from what you said. But another very important point that you made was taking that family history. And I think Rachel brought that up to. It is so important because that can mean that somebody should get screening earlier than the recommended guidelines and that could go a huge way for prevention and early detection. And then finally, this trusted relationship between you and the patient is again, so important because there is that stigma around talking about some of the symptoms that can come with the diagnosis of colon cancer, like your bowel habits and like blood in the stool and really having an open and trusting relationship with the patient goes a long way and encouraging them to talk about those symptoms. And then also you're making it a routine to ask about those symptoms without, you know, having without them having to bring it up themselves. I think it's so important. So, we will get back to some more discussion about this. Um, but I did want Vanessa to have a chance to tell her story. So, as, as she previewed for us already, she was diagnosed with Stage three colon cancer recently. And so Vanessa, I wanted to um ask you to maybe talk about some of the symptoms that you were having And that led to your diagnosis and I believe you were 49 when you were diagnosed. Um, and also what was going through your mind at the time? And how did you receive this news that this was colon cancer? Sure. Thank you so much for having me. And again, my name is Vanessa Sebastian. I was diagnosed with stage three colon cancer in July of 2020. And um prior to my story, my story is, my symptoms were very rare. They were very vague and you know, they could have been justified. So it started with a cough that I had after returning from Vegas and staying in a hotel room and I had this cough cough cough and I ended up seeing a pulmonologist and the cough just would not go away lingered. At first I thought it was just, you know, because I was traveling and I was exposed to something on the plane and then it wouldn't go away. Saw the pulmonologist she sent me for chest x ray, cat scan pulmonary function tests. Um, I was diagnosed with asthma, put on inhalers and put on singular And I did that for probably 6-8 months and I still have this cough. The cough would come and the cough would go. So I ended up making an appointment with the ear nose and throat doctor because I had this burning in the back of my throat and I was coughing and I thought some reason it was related to something in my airway or the back of my throat that was causing me to cough. So he diagnosed me with burning mouth syndrome and subsequently put me on medication. Put me on Klonopin. So I guess a sub therapeutic dose of Klonopin is said to cure um burning mouth syndrome. So I did that and that really didn't work. And then of course Covid came and the cough was not improving. And we were just we were on my office I have a medical practice and my office was closed and we were just coming back. So I had the N. 90 five's on and of course that was making me cough more. And so I ended up calling my pulmonologist she did a chest X ray over Covid which was negative. Um And she referred me to a G. I. Doctor and thought perhaps it was reflex. She then recommended that I try a little bit of over the counter PriLOSEC. And I did do that until I could make my virtual appointment with the Gi doctor because it was over Covid. Um I then met with the G. I. Doctor and he prescribed me with PriLOSEC felt some relief but I still had the cough and at times the cough was getting a little bit worse especially when I laid down when I laid down and before bed it would really really get out of control and I made a second appointment with the Gi doctor. They then increased my dose of PriLOSEC and put me on cara fate um which I thought was interesting but that just completely made my symptoms so much worse. So I went back to the ear, nose and throat doctor because again I am in the medical field. So my pulmonologist is my friend, my ear nose and throat doctor. I've given anesthesia for him. So I just made a simple phone call. He was able to get me in the next day and he um scoped me in his office and said you definitely have reflux. He said you definitely have reflux and he put me on deck sealant. So that was on Friday 24 July 2020 Two days later I ended up in the emergency department on July 26 with severe severe excruciating pain. That of course as a nurse I was like it's just maybe it's a little constipation. It started at 12 noon and by six o'clock at night my husband said if you don't go to the emergency room I'm calling an ambulance and I don't really remember a lot that day. Um Which you'll understand why because I'll tell you when I got to the emergency department I ended up going my Hematocrit was 23 and my hemoglobin was six. So they knew immediately that something was wrong. And I you know had a transfusion, had a cat scan and that's when they noted abdominal wall thickening And I then stayed in the hospital for 10 days subsequently had was prepped for a body had a bowel prep and did a upper endoscopy and a lower endoscopy. And on the lower endoscopy, that's where they discovered that I actually had colon cancer. And then of course, my first being treated at dana Farber previously, I called immediately and that's when I started seeing kimmy. Um but you know, colon cancer was not on anyone's radar. You know, I had seen several physicians through the course of my very vague symptoms. Um and they all diagnosed me within their specialty. So the pulmonologist diagnosed me with asthma. The E. N. T. Doctor diagnosed me with burning mouth syndrome. You know, and um no one, no one said, you know, hmm, maybe it could be something more. Maybe there's something more here. Michael monologist did ask me um during Covid, when she ordered that sat chest x ray if I had any weight loss. And again, I did have weight loss, but it's justified. I was opening up my practice. We were growing I was working a lot and wasn't eating during the day like we all do. And so I was like, well I'm kind of like unintentionally intermittent fasting. So I am kind of losing weight because I'm not eating that much. And but no one really took any attention to it. And really that was my only symptom was really weight loss which started right before covid. So that was in, You know, March of 2020, that's when I started losing weight. And um, and then the cough, which, you know, it was clearly reflux because I had this huge tumor that was causing everything to back up. And so, you know, it wasn't on my radar because I've always thought that, you know, colorectal cancer was for somebody who was older, it was never supposed to be somebody who was young and healthy. You know, I was thin and I was healthy and I exercise and I ate well and I don't smoke. I don't participate in any, you know, I'm not, I don't do any drugs or, you know, I barely drink. So, you know, it clearly was not on my radar and I don't think it was on anyone else's radar had someone mentioned to me, you know, maybe this is a possibility had you, you know, have you had a colonoscopy or um, you know, but those symptoms are so vague and they're so hard to identify with anything. You know, so that was the, that's the part. And I know my pulmonologist who I'm friendly with Shane's just heartbroken over this because I think she feels like she failed me. And I don't think that she did because she just was, you know, using the symptoms that I had and going going that route, you know, so, um, I do, I'm a huge advocate for, you know, for early screening for colorectal cancer because I do believe firmly that if I had been screened, I wouldn't be in the situation that I'm in. If if I had been screened, you know, I wouldn't have gone through chemotherapy. And so, you know, I share in my practice with all my patients. I'm very open about my journey and what I've been through because I feel like knowledge is power and I have worked all through my chemotherapy and even with my bag and my chemo pump. And they all have asked me, how are you doing? And the first thing I say to them is, you know, when was your last colonoscopy? Have you had a colonoscopy? And I can't tell you how many patients have gone and had colonoscopies. They've either emailed our practice or texted me and said, I want you to know I made my colonoscopy appointment because they know that it's really important for me, but it's important for me because I think it's important for them, You know, and I think early screening is the key. And um, it's just if I had this screening, you know, years ago, I don't think that I would go through it and it's interesting, but I think in in one of your slides, you it had said that you had mentioned that, you know, some patients are don't want to take the time off actually, I think it was Rachel to don't want to take our Vivian. It was one of you? I'm sorry. But I had said, patients don't want to take the time off to go to the colony to do a colonoscopy because they're inconvenient. And I can't tell you how many patients have said that to me. Have said, oh my God. But then I got to take a whole day off of work. So, and my response to them is try taking six months off for chemotherapy. So I've taken six months off because one day compared to six months. Trust me, I would have done a colonoscopy for three months straight. So, you know, it's just it's really important. But again, I don't think it's on anyone's radar. Right. Thank you so much for sharing that story. Again. I think what your experience was is true of so many other young patients who have gotten diagnosed where cancer is not under radar, colon cancer is thought to be a disease of older people. And so they're really, you know, most of the time symptoms are due to something else. But I do think you're you fall in that age range where with the new screening guidelines soon, um, you know, perhaps you would have benefited from a screening that started at age 45 rather than 50. So, um, Vivian and Rachel, I wanted to touch on something that Vanessa said, which is, you know, there are barriers to doing a colonoscopy? Um, what are some of those barriers that you've heard from patients and how do you respond and and work with patients in terms of what they're able to do. You know, we know that lots of patients are fortunate to be able to take off work, but a lot of people cannot afford to take time off work to do something. Like a colonoscopy. Vivian may be a better person to answer just because she refers more um more patients. But I I think the probably the two biggest barriers are that some people don't want to drink the prep. Um and then as you mentioned, some people don't want to take the time off of work. There are some places that do weekend endoscopy. So we do saturday endoscopy once a month, which has been really helpful for some patients. Um I also tell patients that we do colonoscopies and endoscopy ease all day. And so for some patients they're able to, especially now with everybody working from home, um A lot of people will do their prep at home in the morning while still working and then they're able to take just a few hours off of work or take just the afternoon off. And so I think that has been helpful. Um And as Vanessa was saying, I am a very strong advocate for screening also and I think it's really how you approach the topic with people. And if you I mean I agree at having a colonoscopy even with the time and the prep? it's it's a lot easier than not having a colonoscopy and being diagnosed with even a large polyp that or a polyp that isn't amenable to endoscopic resection. And that requires surgery. Um and so you know, detecting these lesions early when we can intervene at the time of the procedure is you know, saves people I think time um and also can save lives. Yeah. And then can I ask you a quick question about is the prep requirement different for a flexible sigmoidoscopy versus a colonoscopy. And you know, does that help at all in terms of the convenience of a screening method? So a flexible sigmoidoscopy just requires an enema for prep. Um and many patients also do flexible sigmoidoscopy is with no sedation at all because it's a pretty quick exam. Um and it's not as painful or it's a little bit more tolerable. So there are people who just leave work and present for the flexible sigmoidoscopy and then have no sedation and go right back to work the same day and then Vivian any thoughts? Yeah, I mean the other thing that has come up as you know, a bad personal experience or having a family member, you know had a perforation or you know, there's some bad experience and I just can't go past that um you know, I I tell them that in my, you know, all these years, I haven't had a single patient have a perforation And and and so it is extremely rare and I think less now than in years past because some of these cases, who knows, we're from, you know, 15, 20 years ago. Um But you know, that has been that has come up a few times. Um And then the the time of work has not been um that common has been more like the prep, they just scared about the prep. And I keep telling them that now I've had some family members that have gone through, you know, several colonoscopies. And I've seen the prep get better over time. And it's it's not it's not as bad. I mean it is, you know, it's when you spend the night, you know, going to the bathroom and it's kind of tiring. But then you get to rest during the you get a nice sleep with sedation during the colonoscopy. So I shared, you know, some personal experiences from, you know, friends or families. Um I have to say that when You're starting the first, the discussion of that first screening colonoscopy, whether it's at 45 or 50, it's a little bit of a shock to patients. Um There's like a rite of passage, you know, like, you know, now, instead of turning 50 it's like, oh, I'm turning 45 it's there there's something not quite ready to do it that first year. So I'm actually glad we're starting at 45 because if they delayed by a year, it gives me a little bit more time, but I do play a bargaining game and you know, when I see that I were not having dorks colonoscopy, then I bring up the Colin art and the, and I have to say, even with the color guard, I get expired orders back back to me a few months later. And it's like, so you know, then I used to fit because it's like right there, it's so quick, I have a way to track it. Um, and again, it's all about getting something done that first, you know, first year and then I have a, you know, the next year to push for the colonoscopy. So is your initial approach to offer the colonoscopy versus presenting patients with a range of options because all the societies do give you a range of options. And there is that flexibility there. I try to present the colonoscopy first as a gold standard just because you can, You know, you can get it all done and be done with it and it's all clean, it's 10 years. And then if it's not, you get, you know, in every field we have a way to risk stratify patients, right? You know, the cardiologist does a stress test and, you know, everybody has their way of thinking about risk factors. And then here we have a colonoscopy, see something, you take it out and you're done and if you do see something, you get one year, three years, five years, you know you just you have a plan. Um So I I try to go for a colonoscopy and then if I get some pushback then I go, well will you consider this color guard or fit? And then I, you know, I kind of continue, you know, downgrading kimmy. Can I just add, I think one other barrier is that patients need a ride home. Um and so that sometimes can be a little bit difficult um depending on whether they have friends or family nearby, whether people are comfortable telling somebody that they know that they're having a colonoscopy and will need to a ride home. Um And I found that also has sometimes been a little bit trickier in covid because for people who don't have cars or use public transportation. Um some people are not as comfortable even you know having somebody meet them and take an Uber home. Um And so that's been a little bit more of a challenge. Um And then the only other thing I wanted to add was that all of us have mentioned family history and I think it's just important to know. Um The age at which your family members have had polyps and also and also colon cancer. Um because we typically will recommend that people be screened based on the age of one of their family members first developed any polyps or cancer. And also the type of polyp I think that the family member had, which often a lot of patients don't know um about their family members or even about themselves what kind of polyp they had. So I think that's another important piece of information to make sure patients, you know, as Vivian said, give them some homework and have them ask about the the type of polyp. I think the other interesting point is that for a stool card or a color guard to really work and be effective at prevention and early detection. You need that follow up colonoscopy if it's positive. So how many people, you know, don't go ahead and get that follow up colonoscopy after a positive stool card. Yeah, so um we actually have a pretty good tracking system. Um and my experience has been that I've had a couple of patients late, I mean they're in there Like maybe late 60s wouldn't have never had a colonoscopy and I just couldn't convince them either. And two of them accepted the color guard. Those two had positive color guard. And it just all of a sudden something clicked in the in the rain and the fear of the colonoscopy. Fear of the procedure. You know, it became real and both had some pretty advanced polyps that require endoscopic resection by by an advanced endoscopy piste. And. And ever since then they're getting their surveillance colonoscopies without any fear there, you know, all of a sudden the the G. I doc is their best friend. And so I do um they're they're easy to track their, you know, they do work with like the epic system now so that you can get reports online and see who is not follow up. Um So it's not it's not that hard to track, that's great. And then Vanessa, you know, we've heard so much about this prep. Um Do you and you said you encounter that as the fear when you're trying to convince your your patients and your clients to get colonoscopies. Do you have any advice or what kind of advice do you give them to allay their fears about the prep? You know, so the prep is difficult but you know, I always tell my patients that you know, it's just a small thing that you have to to do to get through the procedure which you know could it could save your life, you know, and and like I said, you know, it's a little bit of an inconvenience and you know, if you can mix it. I know when I did my prep we mix it I think with some gatorade and ginger ale and then it was just okay, I'm just gonna put it in some ice and I just need to chug it and you know, because it's just lingering, having it linger on for hours and hours wasn't working and it's actually delayed my surgery one day because I was struggling with that prep um and you know, I need to practice my own advice, you know, and I can look at it now and say when I was in the hospital, I should have, you know, but I was also really, you know, I was really sick and I just wasn't feeling well. Um but yeah, ultimately I ended up just putting it on some ice and just drinking it really fast and you know, kind of plugging your nose and closing your eyes and just saying okay, I've got to get this down. Um but I also tell the patients, I always say to them it's a little bit of an inconvenience and it's not the greatest, it's not, you know, a nice glass of wine that you're drinking for sure. Um but it's definitely it's something that you have to do and it's better than sitting through chemo because what's the alternative? The alternative is you don't do the bowel prep, so you don't get diagnosed or you don't have the colonoscopy and then you don't know where you stand and then it's diagnosed when you're stage three or stage four and like you said, the prognosis is much worse then. Um so it's better to be kind of pre emptive and just take it such an important perspective, thank you, thank you to all of our panelists. I think that there have been a lot of questions that have come in. So mary Brent brown is our young onset cancer center coordinator who will be helping to field some questions to all of us. Everyone. We have quite a good number of questions both from registration and from just today. So we'll try to get through as many as we can. So the first one is talking about, there are a couple of questions about this, just about the barriers to colonoscopies. And one thing that is one more barrier is the cost of a colonoscopy. So for people who are underinsured and uninsured, which is unfortunately a significant portion of the population, um the colossal we can have a significant cost. So if someone wants to comment on that and then also in regards to how we can increase the capacity for colonoscopies, especially for people who don't have as much access maybe Rachel, do you want to take this on? And in terms of how insurance coverage for screening, colonoscopy is determined, so I don't actually Vivian may be better to answer that um because I am not as involved in the cost um and and obtaining coverage. I know that. Um for So for I've not really had an issue but most of the colonoscopies that I order either are patients who are over 45 or 50 for screening um or there for diagnostic purposes. Um So I don't know if Vivian has more experience in terms of patients not being able to afford our insurance, not covering colonoscopies. Yeah. For for a screening screening colonoscopy shouldn't be an issue with the Affordable Care Care Act. I I believe that has to be covered. Um I know that there were some um concerned about if the polyp was found. Um You know whether colonoscopy would turn into a diagnostic colonoscopy and there was some concerns in the past about this. Um But I thought that that was resolved and that um insurance has had to treat that steel as a screening colonoscopy. Um But again every insurance is different. So I and I haven't had patients had trouble Getting a screening colonoscopy for 50 an hour Now. I'm just starting to do the 45 and over and I think most of them are um starting to cover it and they should you know once the guidelines are finalize they should cover it. Um and I do know that colour guard also in their website says that over 80% of insurances cover it for 45 and over. Um so for the 45-50, I do ask them to check in with their insurance to see if there's any deductible. But since every insurance is different, I don't have a good way to you know, figure it out on my own. Thank you. And I think this is where it's so important that the United States preventive services task force is probably going to be lowering the recommended age to 45 because coverage of screening is directly tied to that bodies um guidelines and recommendations. So hopefully when that becomes final There will be universal coverage of a screening colonoscopy for people 45. And over the next question is for Vanessa. So someone um acknowledged that you mentioned having prior treatment at Dana Farber. So if you feel comfortable elaborating on that and also if you were in correspondence with your PCP during the time that you had symptoms and how that went. Sure. So you know I was treated previously with breast cancer um in my late 30s early 40s and I was treated at Dana Farber. Um So yes I did have prior cancer and no I do not have a P. C. P. Because I've always been you know in retrospect I probably should have but I know there are so many of us out there that don't have P. C. P. S. Um But I was treated you know being in the medical field if you know if I needed anything like so I had a cough. So I went to my pulmonologist and you know if there was a problem I would just go to a doctor in that specialty. Um But I I honestly so there's a native american. So I'm actually under the guidance of um indian services. So basically there is a there's a PCP at indian services on the reservation so I see them but I hadn't seen I hadn't seen him. I want to say it was two or three years the last time I had an exam, I think it was probably two years prior to my diagnosis. So um but but even then, I mean it was definitely in my early thirties and you know, no one even, you know, back and obviously then they're not going to pre empt you and say, okay, have you had a colonoscopy? I had no symptoms, you know, So um so no. So yes, I was treated at Dana Farber and um no, I did not see my PCP because I was seen by other physicians and all these other specialties. Thank you. The next question is about prep for colonoscopies. So about why different places have different colonoscopy preps. So me relax and gatorade and Duke a lax is easy and this person's experience, but other patients have to drink my museum site trade or other preps that are more tough to swallow. Um And then also if there are different times of preps to be considered. So I'm assuming that in terms of times of preps you're asking in terms of whether you do it all at once or do a split dose prep. Um So the more recent studies have shown that splitting the prep to do often the night, you know the night before and then a few hours before your colonoscopy have resulted in better bowel preps. Um I think it's really just facility dependent and preference in terms of colonoscopy prep we do the mirror relax um Prep I personally think that it's the most tolerable. Um But I think there are on individual basis, you know different reasons for doing different perhaps not necessarily on an institution level but um there are some patients who are unable to fully clean their colon with me relax or who have more constipation. And so um sometimes you know go lightly, it's more effective for that. There are patients who have slower motility and need a two or three day prep. Um So I think if you don't think you can tolerate mag citrate and that is the prep that the endoscopy center uses where you're gonna be going. I don't think it's unreasonable to ask. Um And our prep is available on the internet if you just google. So um anybody could follow it if that's the prep that they want to follow. Thank you. We've also had a couple of questions about ct Kahlan ah graffiti and whether that is an option for earlier screening. Um If someone could just talk about that in general, there's no about, sorry, there is about prep required but there's no sedation. So it could be easier for people in terms of time out work et cetera. I haven't found any insurance that will cover this. Well that's been my experience and I've managed to successfully do one after someone failed a colonoscopy by two different providers because the column was so torturous that you know that was like our last resort to make sure there was nothing big but it's still you can miss um smaller polyps. And so I would never even discuss uh that this screening it's more of like a last resort. I agree. I almost never recommend a. C. T. Kahlan ah graffiti. Um Then the primary reason is that patients still have to prep for this procedure. And then if they have a positive result they have to they have to prep again for another procedure. And so most patients if they're going to prep once they want to prep for a procedure in which if there are polyps we can remove them at the same time, definitely. I know that we're running out of time. Here. We have a question about what age you suggest. Children of colorectal cancer patients, especially young. Colorectal cancer patients get screened if it's 10 years prior to their parents diagnosis. Yes. So our typical guidance for patients who are diagnosed young is that their first degree family members should start their screening at an age 10 years younger than at the age that the patient was was diagnosed certainly earlier. If there are any concerning symptoms at all. All right, thank you. I know we're at seven p.m. So if we wanted to wrap up and then perhaps we can answer a few more questions but just want to make sure we get in those closing remarks if you could just put up that last slide. Uh So thank you everyone for joining us. I hope this was informative. I'm sure there are still many other questions and hopefully we can start to address them in some future events from our gut instinct series. But in the meantime, you know because there are not a lot of recommendations for colon cancer prevention or screening, especially in people under the age of 45. I just wanted to put up some general recommendations from the American Institute of Cancer Research about some healthy behaviors and habits that that may help in terms of decreasing a person's risk of developing colon cancer. And these are things that providers can talk to their patients about and counsel people about um at any rate routine primary care visit. So they include maintain a healthy weight, being physically active, eating a healthy diet which is typically rich in whole grains, vegetables, fruits and beans and limiting consumption of things that are considered less healthy, such as fast foods and processed foods and red and processed meat, sugar, sweetened beverages also are not recommended and limiting alcohol consumption and not smoking. And finally, no real supplements have been shown to be effective for chemo prevention and so none are routinely recommended to prevent cancer. And finally, please get screened according to guidelines. Thank you all again for joining. Thank you everyone if we want to just get through a couple more questions. If everyone feels comfortable staying, this will be recorded later. So if people cannot stay, we'll have it available. So our next question is asking from a patient perspective, how can someone approach their doctor to request a screening if it hasn't yet been recommended? Vivian? Do you want to take that on? Oh, if well if there's any kind of patient portal um where you can email a non urgent question to your doctor, that's one way I do get those all the time because you know, we're not perfect and we may, You know, I may see someone three months before they do and then they hear something like this and then two months later they, you know, they turn 45 or um and then they email me and I say, Hey, thank you, thank you for reaching out and I completely agree with you. Um So there's no one's going to take offense at like the patient reaching out and say, hey, I want to have my colonoscopy. I get those messages all the time by phone. They leave a message with my front desk or um and you know, the key is to make sure that there's no symptoms. Um and that doesn't have to be evaluated further. Um, but definitely reach out. Your doctor will be happy. Do any of you think that there's any value to aspirin in any type of patient for preventing colon cancer. So I can take that one. Um there have been randomized trials that have shown that in people who have specific genetic syndromes that predispose to getting colon cancer or have a history of polyps the tubular adenomas that can eventually develop into colorectal cancer. That there is a role of protective benefit of doing aspirin. The doses studied and those trials were really high doses of aspirin. And as you know, there are potential side effects of taking aspirin. So definitely something to discuss with um with the patient's doctor first in terms of whether aspirin would be recommended to to decrease risk. I believe currently the United States preventive services task force is recommending aspirin for people over the age of 50 who also have cardiovascular risk factors. All right thank you. And then I think this will be our last one. Um So most patients have sedation for a colonoscopy. Some have have sedation and some have no sedation from the standpoint of the colonoscopy. For how significant is the need for full sedation? I would say not at all really, it's patient comfort. And so as long as somebody is comfortable then um it really makes no difference to me. So there are patients who have colonoscopies with no sedation. Um And they do just fine. Alright. Sounds good. Thank you everyone for staying just a couple of minutes extra. So we can get through most of the questions. Thank you. Thanks for having me
