Cologuard: A Patient’s Perspective, with Ollie

Episode Transcript

Dr. Dac: Hello folks, and welcome to “The Colon Health Podcast” offered by colonscopy.com. I’m your host, Dr. Dac Teoli, and I want to thank you for sharing this time with us, and taking an interest in learning more about colon health. We have explored a lot of different topics on this show so far. But today we’re going to do things a little bit different. Instead of getting expert opinions or insights from medical professionals or science leaders, today we’re going to be talking with a very special and important person, the patient themselves. As you know, colon cancer screening is no joke, as a matter of fact, colon cancer is the third most common cancer in the United States.

The American Cancer Society predicts over 100,000 cases to be diagnosed every year. Even if you have no symptoms or family history of colorectal cancer, this still puts you at average risk. There is no free tickets here. In fact, physicians now typically suggest that you start screening at age 45, and this is because there’s a disturbing trend, where they’re finding more and more cancer in younger and younger patients. The topic of today’s show is about a particular colon cancer screening test, called Cologuard. Today we aren’t going to do a deep dive into the science underlying this test. I bet in the future, we’re going to have a professional from Exact Sciences, that being the manufacturer, to discuss all the ins and outs of this test, and the statistics and all of that business.

But stepping back, what exactly is this thing? So it can be boiled down to this, Cologuard is a stool DNA screening test for detecting colon cancer. In fact, it’s the only such screening test that’s approved by the FDA. How it does this is rather elegant actually. So the patient typically will provide a stool sample, and then the folks on the science side of things will assess and analyze that sample for particular DNA changes that can indicate to them if there’s a high suspicion for the presence of colon cancer or precancerous polyps in that patient. It’s marketed as being less invasive, more convenient and less uncomfortable than the traditional colonoscopy screening. It tends to be covered by insurance, including Medicare, and if you don’t have insurance, or if your insurance won’t cover it, the cost is typically under $700.

But enough of all that. I want to bring on our special guest today. His name is Ollie, and he’s going to be sharing his experience, his personal experience with this test. Thank you for being here.

Ollie: My pleasure, and nice to meet you.

Dr. Dac: No, the pleasure is all mine, and I just want to give you big kudos for being here, because it’s brave, for one thing, but also you sharing your personal experience with any sort of medical test, you are helping a lot of folks in the audience, because they are going to be having a lot of questions, and I have no doubts that even with you just running us through how you found out about this test, how it went, how long it took you to get the results for example, just the general walkthrough, I think that is going to answer the questions for a lot of folks out there, our listeners, who want these answers. So no, thank you for being here.

Ollie: Yeah, no problem. So just as background, I’m a local business guy in the L.A. area, Orange County, and I’m 46 years old. And I went to my internal medicine doctor. I have a concierge doctor who I have an annual check-up with. And he’s pretty available… a really good doctor, Dr. Strievig, and went to him, and I said, “Doc, I heard there’s a test out there,” and he said, “Hey, that’s…it’s out there and there’s a possibility you can get it reimbursed.” He’s like, “It is not the gold standard yet. Colonoscopy is obviously the gold standard.” But he was like, “It’s one other way of screening.” So he gave me the basics. He really didn’t give me the information I wanted to. It wasn’t like a definitive, hey, just do this test for us and then do the colonoscopy, or…he said, “It’s around the right time for you to get tested.” He gave me some just general information. So it was really my initiative. I had heard through a friend that this test exists, and I was thinking it would be a lot easier to get this test done first, because it’s not that invasive. So I had it ordered, it came in the mail, I got a box in the mail. And I think it took a couple of days to get it, it was really quick. And I opened up the box, and there was a…some…like this plastic zip lock bag. And I opened up the bag, and there were these pretty simple directions, and this white container, and then like a swab. At that point, I looked at the directions, I opened it up, and it was like a little booklet, but it was really simple. It has basically pictures of everything, like a fifth grader could figure it out. So really like easy laid out directions. Then I waited a couple of days, I looked at the thing, and it was kind of intimidating at first. I’m like, well, what am I supposed to do with this thing? And a little bit intimidating and then a couple of days later, in the morning, it gave me directions to basically put the little container in the toilet, and put like not a big sample, so like a medium-sized sample in there. And then you take the container, and then swab it with this little swab, and the swab goes into a separate little vial, and then the container itself which has the feces in it, I screwed it back on, put everything back into that zip lock bag, zips it up, and then the box has this little slip where you could just take the box back shut. I taped the box shut, I took it to UPS that same day, and I basically gave them the box. Jokes aside, I gave them a box of feces, and I guess they shipped it out to Cologuard. This was…I’m not sure, like a couple of weeks ago. Then I did a video in case you guys wanted to see how it all worked.

Dr. Dac: Yeah, that would be fantastic, and we’ll make sure that we have that up on the website as well. So I’m curious, you make a lot of good points. One thing that I definitely took away from that, is it sounds like it’s not too complex, or at least there is some different steps that could be complex, but it sounds like they were pretty clearly explained in the instruction packet, so there was no I guess, for lack of a better word, question on what you need to do next. Is that right?

Ollie: Yeah, it was really laid out clearly. It took…maybe the whole thing maybe took, like, six minutes?

Dr. Dac: Perfect. So you don’t need to be a medical professional yourself, whether it’s a nurse, or a PA or MD in order to figure out how to do this yourself, is that right?

Ollie: Yeah. So I had no issues with doing the tests. And they even sent up like some follow-up letters to me. They sent like, hey, a letter saying we received your package. And so they were really good at…the only thing like I wanted more was…I just wanted to know more about how this test works with the colonoscopy. That’s what I want to know right now too is like how does this work alongside a colonoscopy? And my doctor really didn’t have that much information. So my question is more like how does this work in conjunction or what am I missing? Am I…if I get this done and it shows up negative, does this mean I still should get a colonoscopy? So these are the questions I have that my internal medicine doctor, he pointed to getting the colonoscopy. But then when I read up online, it said no, Cologuard is the way to go. That’s where I am confused. But the procedure itself, the process itself is super easy. It couldn’t have been easier.

Dr. Dac: Excellent. I am glad to hear that they made it straightforward for you. And it sounds like there’s still some unanswered questions, and those are tremendous questions actually to have. So a few of them, I’m no expert in the Cologuard test itself, and like I said in the future, I’m going to be willing to bet some money that we will have someone from Exact Sciences at some point sharing some of the ins and outs of this test, but you make a good point, because what they mention is that this test is not for individuals that have a high risk of colon cancers. So for example, if you have a long family history of colon cancer, or if you have certain hereditary conditions such as ulcerative colitis, that renders you to have a very high risk of getting these polyps, pre-cancerous or otherwise.

Ollie: So Doctor, my grandma, she had polyps when she was…I believe I remember when she got them removed, I believe she was around 80 years old when she had multiple polyps removed in a colonoscopy that she did.

Dr. Dac: Gotcha.

Ollie: And she lived with us, so she talks about everything. But is that a family history? My grandma is 80 years old…was 80 years old at the time, and she had polyps removed during the colonoscopy. I guess they snip it out when they do it.

Dr. Dac: Yeah, and you make a good point there as well, because every polyp isn’t necessarily always cancerous. If those polyps ended up being cancerous, then I guess there would technically be some degree of family history, it wouldn’t necessarily be a high risk for example, say your grandmother or your mother developed colon cancer when they were say in their early 40s. That’s a little bit different of a risk paradigm than say your grandma who developed this in her ’80s. So not necessarily the highest risk of categories I would say, and if your main doctor that you mentioned felt comfortable with prescribing this as a first step, then that is the right step that they want.

Ollie: Actually I…I think that’s the issue, is he didn’t prescribe this. I learned about it through a friend, and reached out and just did this on my own.

Dr. Dac: Oh, gotcha, and that brings up a good point.

Ollie: I think awareness is the issue, but that’s a huge issue, right? That the doctor didn’t prescribe this. Doctors don’t know what’s going on.

Dr. Dac: Gotcha.

Ollie: And they’re used to the traditional way of doing things. I am not blaming any doctors for not knowing, but I just think the awareness for this procedure still isn’t there. I’ve talked to a few of my friends who were like, well, what are you talking about? What is this? So I think there is a lack of information online. There’s a lack of information about this procedure in the doctor’s offices, and that’s…I think the awareness tends to go up if this is a replacement or something that people can rely on, I think there’s just…more people should be doing this, because the alternative procedure is quite uncomfortable I hear. I’ve never done a colonoscopy, but I hear it’s completely uncomfortable.

Dr. Dac: Right, and that’s another tremendous point. So as you mentioned, this can be obtainable to patients at home without having to necessarily go through your insurance, without necessarily always having to go through your physician as well. And that raises the question and maybe even the problem, well, okay, I’ve got the data back, I’ve got the answer, the test results, now what do I do with that information? And that can be a problem for a lot of different folks. One, it’s important to have kind of that medical input on how to interpret it, so I would hope that for all of our listeners, that their physicians are comfortable with interpreting this, that Cologuard is a qualitative test. So what that means for some of our listeners is that it essentially answers in one of two ways, that would be yes or no. There shouldn’t be any particular interpretation such as you have X, Y, Z level of this DNA marker, and X, Y, Z nano milliliters of this marker. It’s supposed to be framed in a qualitative, yes, the result is positive or, no, the result is negative. We have these qualitative tests. It’s important for us to consider something called pretest probability, and that is essentially whittling it down a bit is that it helps us have confidence in whatever results we get from these qualitative tests. So whether we get a yes or a no, for us to have confidence in that result, we have to look at the individual and say, okay, before they even took this test, were they high risk, or were they normal risk? It’s hard to be low risk. Everyone, at best, when it comes to colon cancer, can pretty much, it seems like, be average risk. So that’s why…and you might notice if you ever see commercials for Cologuard, that they say, in little, fine print, or maybe they say it at the end, that this test is not meant for people that have a high risk of colon cancer because this essentially messes with that pretest probability that we said before, where their results aren’t necessarily able to be extrapolated in the same way that they would for someone who’s average risk. So from that short, little bit I have heard of your family history, it doesn’t sound like you are the classic high risk individual, and you did get this test done, and I hope that you got reassuring results on it. But what about for our listeners that…whether they go through a physician or not, they get the opposite, they get concerning answers from this test?

Ollie: I did get something in the mail. I haven’t opened it yet, but I don’t know if the results come on email or…oh, I just haven’t opened it. It was from Cologuard.

Dr. Dac: Gotcha.

Ollie: It is sitting on my table. So maybe those results are back. I am not sure how long it takes.

Dr. Dac: Gotcha.

Ollie: So maybe when I go home I’ll remember.

Dr. Dac: Yeah, it’s good to check out on because you’re going to want to take those results to your physician or medical provider. Typically, to my understanding, the results come back within a couple of weeks. They might send you some contact information and touchpoints along the way. That’s my understanding on average, those results are about two weeks out from when they receive the sample. Now…

Ollie: I probably need to open up my mail.

Dr. Dac: Now, that brings up a good point, because what happens for the folks that have a positive result? Does that mean guaranteed 100% that, oh, no, I have colon cancer. Not necessarily. Again, remember this is just a qualitative test, and no test is perfect. So what that means is that that patient, their best next decision is to talk, again, to their clinician, their physician, whomever it is they’re currently seeing for their main health care needs, in order to be coordinated for further testing. And in that case, it would probably be, as you alluded to earlier, the gold standard, the colonoscopy at that point. One of the really nice things about this test is the ease, the convenience of it. You can do it in the privacy of your own home, and ship it away, like you mentioned, through UPS or whatever shipping company they request in order to get your results. But once that test comes back positive, you would not want to see, meaning that they found concerning biomarkers, meaning that there’s a chance that, yes, indeed, maybe there might be cancerous or pre-cancerous lesions, then it’s time to go to that gold standard test where the gastroenterologist can go and look with a scope, maybe take a biopsy, and proceed to that next step.

Ollie: One way to look at this is almost like a first step for people that are of average risk. Like you mentioned, it’s not uncomfortable. There’s not a lot of risks, it is hard to get hurt by it, other than the risk of maybe getting inaccurate results of being scared. If you do get positive results and if those happen to be inaccurate, then you’re getting a colonoscopy. But there’s obviously no risk of bowel perforation or that kind of distended feeling that some folks get after colonoscopies. And that brings me to another point. Can you tell us, was there any preparation that had to be done special for this test? So for example, for colonoscopies, oftentimes patients have to drink multiple liters of special concoctions that make them use the bathroom pretty dang heavily. Was there any prep that had to be taken? Any special dietary precautions, prior to doing the Cologuard test?

Ollie: Doctor, I don’t recall reading anything, I may be wrong, and yeah, I didn’t read anything but it didn’t say anything. It just said, take…as they say, I don’t need to use profanity, but “Shit in a box.” And that was it. I went into the…with the container, white container…but one thing that’s interesting is, I don’t have regular bowel movements often, and that it’s not every morning or every evening. Mine is random, so since I use the Bulletproof, I have been doing a lot of keto diet which is basically the Bulletproof Diet by David Asprey. I take his MCT oil in the morning with coffee, I noticed that because I was doing that, I started becoming more regular. And I don’t know what it does better, but this MCT oil and doing this diet, this keto diet, just made it easier. So I like anticipated and I knew when I was going to go to the bathroom because with the David Asprey…this Bulletproof thing, it’s like…it’s almost like it makes bowel movements easier, and they become regular. So I anticipated that, because you have got to plan for that, and that sounds weird, but it’s hard to make sure you’re home…

Dr. Dac: Right.

Ollie: Make sure you have equipment, make sure you’re in the mind frame of doing it. So it helps. It actually helped me, because I was on this Bulletproof diet, that hey, I became regular. Like, I know at this time, I need to go to the bathroom. That was the only preparation I took, was to really know when I was going to go to the bathroom, and have all the equipment there, because you have to use a toilet and you have to have a counter. So I couldn’t just do it, bring it to my office, that would have been very strange.

Dr. Dac: Yeah, no doubt about that. I’m sure that would break some rules probably.

Ollie: Yeah, a little bit too much information there, but I mean…I do think that the MCT oil thing works.

Dr. Dac: And I think we’re on the same page too, because to my understanding with the Cologuard test, there is no comparable preparation, drinking those liters of laxatives essentially prior to, comparatively, to a colonoscopy. So it sounds like you did everything right. To my understanding, there’s no big dietary changes, and it sounds like that’s exactly how you went about it as well. Certainly being regular is a good thing for everyone.

Ollie: As advice to people doing this, I would say, just have it available, like ready to go in your bathroom. And it will remind you that you got to take the test.

Dr. Dac: Smart.

Ollie: Because I think mine sat in my bathroom for a couple of days, and I was like oh, I got to do this thing.

Dr. Dac: Gotcha.

Ollie: And it was as simple as that, I’m like, okay, I have got to do it. So when I had to go to the bathroom, like oh, just do it this time. That was the only thing that I prepared for is to actually do the bowel movement.

Dr. Dac: What else do you think our listeners should know about this test, or your experience with this test?

Ollie: It was just really simple for me, so maybe I would love to know like from you, Doctor, when you get a chance, I’ll listen to your podcast and try to figure out what the reimbursement is. And maybe if you interview an insurance person down the line, I’d love to hear what they have to say about how this gets reimbursed, how they’re seeing this on their point of view. That would be interesting to me. Another thing that’d be interesting to me would be how accurate it is. And I’m sure if you get someone from Exact Sciences they will probably tell you. I’m curious, because I’m wondering if I should go and get the colonoscopy after this. And if I come out negative, should I wait three years, should I wait four years? Should I wait until I am 50? Or should I do it next year, or should I do this test over next year? So I am very unclear on what the protocol should be with this procedure. And unsure about the whole reimbursement issue for insurance. I paid cash for it, and my doctor told me that I can get it reimbursed once every two years. So I’m still unclear about that, so those are the kind of the areas that as a listener, maybe there’s other data online that can tell us these answers, but these are the two things that I would want to know.

Dr. Dac: Absolutely, and as always on “The Colon Health Podcast,” we love requests from our listeners. So insurance folks, Exact Science professionals, if you’re out there listening, you heard it. Our listeners want to have some talks, not just about reimbursement for this test, but also more on a deep dive into the science underlying the Cologuard test, as well as how to interpret those results at a deep kind of statistical level, beyond just a yes or no.

Ollie: And last but not least, I think one other thing I am curious about, and I’ve done a little bit of research is, there’s a blood test that’s supposed to come out, and I think it’s by Freenome, or some other company, I am not sure what the company is, but there’s…or maybe it’s Cologuard itself, there’s a blood colon test is what I heard, that tests the markers. And when is that coming out? Is that something that is going to supplement this, replace this? How does that work? And so that’s interesting to me too. Maybe I do that next time or maybe that’s going to come out in a few years. So I’m really interested in the blood test, and these tests, and how they work together. Because I’m dreading going in for a colonoscopy, and that’s really why I’m doing this early on.

Dr. Dac: You’re in good company. You’re in good company from, I think, the most recent statistics I’ve seen is out of all of the individuals that are eligible and should be getting a gold standard test, such as a colonoscopy, say if this test, the Cologuard didn’t exist, I think it is less than 20% of people who are eligible actually go through with having a colonoscopy performed, and that is for a wide range of different reasons. One of them, just as you alluded to, folks don’t look forward to that particular test. So I’m glad that the Cologuard exists to fill that gap. And I’m also glad that you were here, because we were able to talk and you were able to share your story with us, all of us, even our listeners at home. And I think, Ollie, it sounds like the next step that you’re going to be doing is when you go home, you’re going to crack open that envelope, and review those results, and it sounds like folks are always going to…take those results and he’s going to take those results to his doctor, and they’re going to sit down or at least maybe talk over the phone, because I believe you said you had a concierge doc. So you’re going to be contacting them and letting them know, hey, it says negative, “Okay, internist, when do I need to be screened again?” or maybe not the answer that we would want to see, but a positive result, in which case it sounds like you’re going to be getting that colonoscopy sooner rather than later.

Ollie: Yeah, I am going to text him the results as soon as I open up the envelope. I’m just going to send it to him. And the good thing about my internist and doctor is he’s really into figuring out results and making it easier. So I think that will save me a trip over to his office. I can send a text message, save some money on gas.

Dr. Dac: Smart, especially in today’s day and age. I want to thank you for being here tonight, Ollie, and sharing your experience with our listeners. Before we go, I just wanted to see, is there anything else you think that we need to know about this test?

Ollie: No, I am excited to hear your podcast with the Exact Sciences and the folks at the insurance companies, I’d love to hear…so it will help me do my research.

Dr. Dac: Absolutely. We’re going to have a lot of great content to come. And just as Ollie did tonight folks, make sure that you send in your request with what you want to hear about. And I just want to thank everyone for tuning in, and listening to this episode, whether at home, on your commute, or even at work. Please be sure to like or share this episode on social media, or your favorite podcast app. Remember, it helps to ensure we keep bringing the content that you want when you want it. As always, we’re going to have a summary of today’s episode, including the key points and a list of resources, all up on colonoscopy.com. So please, everyone, take good care, good night, and good health.