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Interviewer: Were you aware that lack of knowledge about colorectal cancer causes a significant percentage of adult deaths from colon cancer every single year? So that means just by listening to this podcast today you are going to reduce your risk of colorectal cancer.

Dr. Priyanka Kanth is from Huntsman Cancer Institute and here are the bullet points that we're going to talk about today to help inform you so you are less likely to get colorectal cancer.

So, first of all, it's one of the most common cancers, and it causes a significant percentage of adult cancer deaths. Colorectal cancer impacts men and women equally. You need to have screening even if you don't have a family history and by the time you have symptoms it can often be too late, that's why screening is so important. So let's start with the first one Dr. Kanth, colorectal cancer I didn't realize this, one of the most common cancers and causes a lot of deaths.

Dr. Kanth: That's correct. So colon cancer is the third most common cancer in the U.S. And so number one being lungs and number two being breast and prostate in the respective gender. And then third is colon cancer, and that's pretty high. And it is also the second most common cancer to cause death in the U.S. So the first is lung cancer, leading the highest deaths from a cancer, and the second is colon cancer. So it is surely that the burden of disease is very high.

Interviewer: Yeah. I think that surprises a lot of people. A lot of people don't realize that and, as a result, maybe don't take screening as seriously. Another misperception is that men . . . It's a man's disease, but it actually impacts men and women equally. Tell me more about that.

Dr. Kanth: Absolutely. So there is no separate recommendation for men and women. Both genders can get this cancer, and both genders should start at the same age. So there is no difference in recommendation. It is a disease for anyone. So anyone should get screened and now at age 45, yes.

Interviewer: And another perception is, well, my family, nobody in my family had colorectal cancer. So I'm probably going to be okay. Maybe I don't need to get screened at 45, which is the new recommendation. Maybe I can wait till I'm 60. But that's false too.

Dr. Kanth: Absolutely, you're very correct about it. A lot of time we don't think that it is a problem for us because we don't have anyone in our family, but that's not correct. It can happen to anyone. In fact, 70% of all colorectal cancer patients don't have a family history. So that's a big number. And that's why it's so important to have this screened because screening is the best prevention.

Interviewer: I also understand that there's a misperception that colorectal cancer just happens to older people, like in their 60s, 70s, and 80s, so I can put off my screening.

Dr. Kanth: Again, a very, very good point. It can happen to anyone. So age is a number. It surely can happen more in older age, but even young people can get it. And we have seen a rise in incidents in less than age 50. So it is not a disease of only old age. It is a disease for anyone to be worried about.

Interviewer: And then the other misperception that I've heard is, oh, I'll go in and get my screening when I start to show symptoms. But that's very dangerous and inaccurate.

Dr. Kanth: It is. It is very dangerous because colon cancer, especially early stages will not have any symptoms. Even sometimes late stages you'll have symptoms, very minimal symptoms. This is a disease where you don't produce symptoms, you don't think about it and it is inside you. So you have to be very, very aware of this. That don't wait for symptoms. Go ahead and get your screening.

Interviewer: And how difficult is it for treatment if a patient comes to you is at the point where they have symptoms?

Dr. Kanth: Absolutely. So if the symptoms are already there, we are worried it is a late-stage disease. And treating a late-stage disease when it has spread beyond colon is much more difficult compared to treating a stage one or two disease, when it is just in the colon. If it's just in the colon, we take your colon out. We all can live without our colon believe it or not. We can have some change in quality of life, but we can have same life expectancy. So treating an early-stage colon cancer is way easier compared to treating a stage four, late-stage colorectal cancer, yes.

Interviewer: And the two options you've got the stool test, or you've got a colonoscopy. Tell me the advantages and disadvantages of each one of those, because, you know, we know that 45 is the number we should be screened at, but some of us don't necessarily want to take, you know, the day off before and after to get a colonoscopy, so talk me through that.

Dr. Kanth: That's correct. So colonoscopy is gold standard. The reason we call it gold standard is this is the only preventive tool where we can go in, we can see a precancerous lesion, which is a polyp, and we can take it out.

Interviewer: And so it's a diagnostic tool.

Dr. Kanth: It's a diagnostic.

Interviewer: In addition too, if there's a problem at the same time, you can take care of it.

Dr. Kanth: You've taken care of it. It will never turn into cancer. Stool test are very, very, very good tests to detect colon cancer. They may not detect polyps, but they will detect colon cancer at a very high sensitivity. So it is a very good option for patients who are worried about colonoscopy. Now, colonoscopies are not without risk. It's an invasive procedure. We give you sedation. You have to go through a prep as well. You have to take time off, like you mentioned, and yes, some risks associated with the procedure itself, like bleeding or perforation. Those risks are very small, very, very small, but can happen. Stool tests on the other hand, are very safe, can detect colon cancer readily, may not be polyps, but it's a very good tool, once we find that you have blood in stool. Now remember this, if your stool test is positive, you have to get a colonoscopy. That is the next step. So just to keep in mind, any screening test result like we said, best screening test is the one that gets done. So we should consider screening whatever option works for you.

Interviewer: And the advantage of a colonoscopy too, is once you have that done, if no polyps are discovered, you're good for another 10 years.

Dr. Kanth: Absolutely. If your prep was good, if you did a good exam and no polyps were found, you have no family history, you don't have to repeat it for 10 years. So even with small polyps now we don't have to repeat it for 7 to 10 years. So the recent recommendation has changed and become more relaxed for even if you had one or two small polyps, you're okay.

Interviewer: And the stool test is yearly.

Dr. Kanth: So stool test, there're a couple of stool tests. One stool test, where you have to do pretty much yearly is called fecal immunochemical testing. The other stool test is called FIT-DNA, which is commercially called Cologuard which you may consider doing it every three years. But it is surely more frequent to do it than getting a colonoscopy done.

Interviewer: And let's talk briefly about barriers that keep people from getting either one of the two screenings. So maybe we can help talk them through and encourage them, you know, if they have average risk to get screened at 45, because that is really the best way of preventing death from colorectal cancer. So what are some of the barriers and how can people overcome those?

Dr. Kanth: Absolutely. So the biggest barrier, I think, is the knowledge. They should know that they have to get screened. So there is a provider and patient education involved either away. So if no one told them, or if they did not hear it on the radio, say they don't know. So that's the biggest barrier. So education is very important from both aspects. The other barriers are, I would say another very big barrier is, of course, insurance coverage, if you don't have insurance. But there are other tools, there are other ways, like I said, stool tests, they are very cheap. So things can still be done even if you don't have insurance. Apart from that, other barriers are just being worried about getting a procedure. A lot of people think colonoscopy is painful. I have to go through this. It's not true. Colonoscopy is a very smooth, painless procedure, honestly. So those kinds of things that this is going to hurt me, that's not correct. So those are the main things. I would say if I have to pick any, I would say education. If you're aware you're going to do it, you will do it.

Interviewer: And sometimes it's just getting it on the calendar, right?

Dr. Kanth: Absolutely.

Interviewer: Whether it's the colonoscopy or whether it's the stool test, just talk to your primary care provider. Have that discussion find out where it works out for you.

Dr. Kanth: Absolutely. Yes. And that's for average risk screening, you can choose anything, colonoscopy or stool test. There are other tests, other modalities too, but these two are the most common. If you've family history, we recommend colonoscopy, that's the usual tool is recommended. So the best way is to contact your primary care provider, talk to them what's best for you.

Interviewer: It used to be 50. Now it's 45 and there's a good reason for that. Huntsman Cancer Institute and University of Utah Health says more lives can be saved if men and women who are at average risk of colorectal cancer get screened at 45 instead of 50 years old. Dr. Priyanka Kanth is from Huntsman Cancer Institute. Why the change? What happened?

Dr. Kanth: Over the years since mid-'90s to early 2000, we have noticed an increased risk, increase incidence, and mortality. Actually both. So increased cases and people dying from colorectal cancer. And that was the main reason people started looking into it, researchers started looking into it and came up with this studies, modeling studies. And that's why this recommendation was changed.

Interviewer: Yeah. And the reason that's so important is because unlike other disease that perhaps might show symptoms, and then you would go get treatment. That's not how colorectal cancer presents. It really is screening is the best way to save lives.

Dr. Kanth: Absolutely. You're very right about it. So most of the early onset cancers or any colorectal cancer, early stages do not produce symptoms. Polyp usually starts with a polyp, which is a little bump in the colon and it changes into colon cancer. These polyps do not produce symptoms and they grow slowly, and you will never know you have one. So that's the biggest problem with colorectal cancer. And by the time you have symptoms, it's fairly late. So screening is the best strategy to prevent this cancer.

Interviewer: And this new research has just really shown that people between 45 and 49 because catching it early is the best defense that a lot of good can be done by having it at 45.

Dr. Kanth: Absolutely. Absolutely. There are certain research which has shown that there was a drastic increase even between age 49 and 50. So one study showed that there was an increase of almost 46% between age 49 and 50. So if we decrease it from 50 to 45, we are really hoping to capture that colon cancer patient. And this would be very, very beneficial between that age group.

The other thing I would like to say that this is also an incentive, an added benefit to increase screening from age 50 to 55, 50 to 54. But traditionally, it has been on the lower side if you do it from 50 to 75. There's slightly decreased screening rates in screening uptake between age 50 to 55. So this will help patients who are thinking about it at age 50, but did not get it till age 55. Now they're like, "Oh, you have to get it done at 45, let's get it one at by age 48." Something like that. So this will be very helpful at that point.

Interviewer: Is there a perception that colorectal cancer is an older person's disease?

Dr. Kanth: Yes. I think a lot of us, a lot of our patients in general public we think cancer is an old person's disease, especially colorectal cancer. That's not the case anymore. This is still true. Most colorectal cancer will still be diagnosed when you're older, but there has been a rise in patients who are younger than age 50. Some of it is because of genetic causes, but the rise has been in the average risk. So this perception should be changed. We should consider 45 as new 50 to start screening now.

Interviewer: And really that number, age 45 is the most important number. It's not do I have a family history? It's not do I have symptoms? It's not am I a man or a woman and think I'm less likely to get it. Really as soon as anyone hits that age of average risk of 45, that's the trigger you should go get it checked.

Dr. Kanth: Absolutely. Very correct. So 50 was . . . the same recommendation was for anyone, any gender, male, female. Any person who hits 50, you should get a colonoscopy. Now that has changed to 45. So it doesn't matter if you have symptoms, you should get it checked, especially if you don't have family history. If you have family history, that's a different story. If you don't have family history or average risk, please go get checked at age 45.

Interviewer: How is this going to impact those that do have an increased risk? Not an average risk, an increased risk? Does that also drop their age that they should go in down or do we know?

Dr. Kanth: So, at this point, if you have a family history, we usually start screening early. Most of the time we start screening at age 40. Or if somebody had colon cancer, I'd say whatever age, 10 years before they had colon cancer. So that may not change so much. It's possible we can look at the data and that may change again, but at this point, this recommendation is only for average risk. So family history is a different cohort of patients. That is still a very good point for primary care physician for all of us to ask that history from patients, "Do you have a family history of colon cancer?" Because your risk might be very different from the average risk.

Interviewer: So have that conversation if you're above average risk with your physician, your provider is whether or not you should get it earlier.

Dr. Kanth: Absolutely. Yes.

Interviewer: All right. And for the recommendation, is a colonoscopy okay? The home stool test, is that impacted by this age going down to 45?

Dr. Kanth: The best screening is the one that gets done. So that's another message which has to be delivered by providers. Colonoscopy is not the only screening test. Colonoscopy is gold standard because you can see the polyps you can remove it before it turn into cancer. But there are other very, very good stool tests which can detect colon cancer easily. They are non-invasive, you stay at home, you don't have any logistics around it. And those are good tests to be done. So that's a big message which everyone should know that colonoscopy is not the only way to detect cancer. There are other very good stool tests, which everyone should consider. If you're declining colonoscopy for any reason, do go for a stool test.

Interviewer: So if it's a stool test or if it's the colonoscopy, it doesn't matter. Average risk needs to be 45 now.

Dr. Kanth: Absolutely.

Interviewer: All right. And also, I understand with the new recommendation that Medicare, Medicaid, and also your commercial insurance will cover either one of those screenings starting at 45.

Dr. Kanth: That is correct. And that's what we believe after the new recommendation which has been endorsed by pretty much all the societies that all these should be now covered under preventive care just that how we had it at age 50. Even now, some insurances are already covering at age 45, but that was more sporadic. So now we expect this to be 100% covered.

Interviewer: You may have heard of the news stories about the dramatic rise in colorectal cancer in younger adults. Some perspective and what you need to know next on The Scope.

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Interviewer: Colon cancer used to be something that most people didn't really start worrying about until after they turned 50 or maybe 40 if they had a family history. But doctors are seeing more and more younger people developing the disease earlier in their lives. Dr. Andrew Gawron is a gastroenterologist at University of Utah Health and some perspective on this. First of all, the headlines that I'm seeing about "Dramatic Rise in Colorectal Cancer in Younger Adults," is that accurate?

Dr. Gawron: It is accurate. The data that was published recently this year does show that, especially in younger patients, there has been an increase in the incidence, which is the new cases, of colorectal cancer in young adults. I think it's important to remember that colon cancer is still very rare in this population, and so, therefore, it's hard to know how many new cases we're going to see in the future. But we did see an increase of about 1% to 3% in those younger patients with this new study.

Interviewer: I feel like maybe there are two things going on in this study, and help clarify this for me. I feel like one issue is that Gen-X and millennials are going to be more likely to develop colon cancer than other generations after they turn 50. And then I think the second part felt to me like there are more people under the age of 50 than normal developing signs of colorectal cancer as well.

Dr. Gawron: I think that's accurate, based on the reading of the study, that we are going to see more. I think that the important thing to take home from this study is that colorectal cancer is a preventable, but serious disease. Right now, even though there's this what we call "dramatic increase," even though that dramatic increase is basically an increase from, like 1% to 3%, which translates into about 10,000 cases per year.

So on a population level, meaning that if you look at the entire population of young people, it's not a very common cancer. Now, again, if you're that one person, though, that develops colon cancer, you don't care about statistics.

Interviewer: Right. The statistics don't do you much good. So for those that are going to be more likely to develop it after 50 or you expect to see more people after 50 develop it, they would have a colonoscopy probably, some sort of screening that would protect them. But what about these cases before the screening happens at 50, you know, people that are developing in their 20s or 30s? What can they do?

Dr. Gawron: So right now, I think there are a number of things that we can do as both patients and doctors. First is just to be more acutely aware of symptoms of colorectal cancer.

One, dramatic change in your bowel habits, bleeding from your bowels, unexplained weight loss, loss of appetite as well as any type of change in your bowel habits that is not related to bleeding, such as prolonged constipation or diarrhea. These are all symptoms that may kind of be brushed off as an infection or essentially food intolerance, but if they occur for a period of time, even, you know many, many weeks, it'd be good to see a doctor or get yourself checked out.

Interviewer: And even if you see a doctor, I've read a couple . . . there was a "Times" article, for example. They talked about a 24-year-old woman. She had blood in her stool, and she went in. And the doc couldn't see any hemorrhoids, but that's what he diagnosed her with. And is it true that doctors . . . it's unexpected, so they're not really looking for it, so you might have to get a second or third opinion if you're that concerned.

Dr. Gawron: I think it's very important to be your own advocate, and younger people with symptoms often have delays in diagnosis because cancer is rare and not usually the first thing we look for or treat for. But if you're concerned and worried, be your own advocate. Don't feel afraid to get a second opinion. Don't feel afraid to go to your primary care doctor and say, "I really want to get referred to a specialist to have this evaluated." As a patient, as a young adult, you want to make sure that the most serious diagnoses are not missed if you are really concerned about your symptoms.

Interviewer: Got it. And if you have a family history of it, you should probably be more acutely aware. Screening guidelines say you should start at 40 in that case. But I've read a statistic somewhere, and tell me if this is true, 70% of colorectal cancers aren't related to family history.

Dr. Gawron: That's true. So we don't quite know all of the genetic factors that are playing a role in these cancers that are developing in young people. In fact, it appears that most of the cancers may be what we call "sporadic," meaning that they just are onset. But I think that's because we don't yet understand the genetic risk factors, and that's something that, hopefully, in the future will allow us to personalize screening.

I do want to say one thing, that family history is important, and I think it's important to, along with those warning signs and symptoms, to understand your actual family history. Many patients that I see do not know if somebody had polyps or somebody had cancer in their family, so having an understanding of what people actually had. For example, your parents when they had a colonoscopy, just ask them what was found, and so that you know to tell your doctor. And that will then allow us to have a better risk assessment when you come to see us in the office.

Interviewer: Got it. So I feel like the two takeaways are, one, that you should be aware of the warning signs, and even if you're a younger adult, pay attention to those warning signs in a way that you might not have normally done so because the research is showing people are developing it younger and younger. And then lifestyle choices make a huge different.

Dr. Gawron: Right. Again, the main point is to remember is I don't think you need to be walking around being scared you're going to develop colorectal cancer. It's still very rare in patients that are young, and you should go about your life as you normally would.

But be aware of these very serious symptoms that might need to be evaluated, and healthy lifestyle choices are important, not smoking, avoiding processed meats, having a healthy diet, exercise, maintaining a healthy weight, and again, understanding your family history and asking your older relatives about their colonoscopies and what was found.

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Dr. Jones: If you're having a hysterectomy for problems with your uterus, should you have your ovaries removed the same time? This is Dr. Kirtly Jones from obstetrics and gynecology at the University of Utah Healthcare, and this is The Scope.

Announcer: Covering all aspects of women's health this is the seven domains of women's health with Dr. Kirtley Jones on The Scope.

Dr. Jones: A recent study from Sweden published in the British Journal of Surgery found that women who have their ovaries removed were at higher risk of colon cancer. A more careful look at the numbers found that this was a study looking back through the Swedish Patient Registry, about 200,000 women who had their ovaries removed for one reason or another compared to thousands, hundreds of thousands of women who did not. They found that removing the ovaries increased the chance of developing colon cancer in the future by 30%.

Now, Scope listeners are smart about numbers and they should be asking themselves right now 30% of what? Although 30% increase is a scary figure, the real rate of colon cancer in women who did not have their ovaries removed, was 1.3/100. And in women who had their ovaries removed it was 1.6/100 and that was a 30% increase, but it's not so scary when you look at the real numbers.

Now this was a study looking back at health histories. And maybe women who had their ovaries removed had other health risks for colon cancer, but there is another strong set of scientific evidence that estrogen protects against colon cancer. In general, women get colon cancer later in life than men. In the women's health initiative, a prospective randomized placebo controlled trial - the gold standard of medical evidence - found that taking estrogen slightly decreased the risk of colon cancer compared to women who were taking placebo, about 30%.

Finally, in a lab, adding estrogens to colon cancer cells partly inhibits their growth. There's plausible evidence in the laboratory. There's a prospective randomized trial and there's some big data that says taking out your ovaries puts you at increased risk of colon cancer. However, women don't think of colon cancer as being a woman's problem, even though about 1 in 24 women, about 4% of women will get colon cancer in their lifetime compared to 1 in 21 men. So it isn't that uncommon.

Women think about ovarian cancer as being a woman's problem. The lifetime risk of ovarian cancer is 1 in 75, significantly less common than colon cancer in women. Of course taking the ovaries out just decreases the risk of colon cancer but taking up the ovaries mostly but not completely decreases the risk of ovarian cancer. The famous Nurses Health Study followed thousands of women for many years and looked at their health outcomes if there were other conditions that are more likely in women who have their ovaries removed. Coronary heart disease is more common in women who've had their ovaries removed and osteoporosis bone thinning is more common in women who have had their ovaries removed. Lung cancer, believe it or not, is more common in women who had their ovaries removed. Breast cancer is less common, of course, in women who've had their ovaries removed.

So your surgeon is in your tummy to perform a hysterectomy because you have too much bleeding, and you're under anesthesia and you're about 50 years old. Should you have your ovaries removed? Removing the ovaries adds very little to overall risk of the surgery and your ovaries look normal.

This is a conversation you should have had with your surgeon long before you were in the operating room. What are your risks of ovarian cancer? Do you have ovarian cancer in your immediate family? Do you carry a BRCA mutation that increases your risk of breast and ovarian cancer? Did your best friend die of ovarian cancer and it's your number one fear and you can't stop thinking about it? Then the answer is probably yes. Talk to your surgeon about removing your ovaries.

However, in one study, about 98% of women who had their ovaries removed at the time of the hysterectomy were not at increased risk of ovarian cancer. In the end, weighing the risks and benefits, it's a highly personal decision. Although a Mayo Clinic paper and the Nurses Health Study that looked at all causes of death found out that women who had their ovaries removed in the past for non-cancerous reasons died just a little younger than women who didn't.

This decision is one for you to make with your doctor, but you should come to your appointment prepared. You can just google, "Should I have my ovaries removed" and there lots of choices, but I would suggest the website at the University of Wisconsin as an excellent interactive tool. Google, "Should I have my ovaries removed University of Wisconsin" and it'll get you there. But it's also on our website.

Full disclosure, I am the OB/GYN editor for Healthwise, the non-profit patient education company who created this patient decision document. Get the facts, not just the fears and make the right decision for you, and thanks for joining us on The Scope.

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Interviewer: Stopping cancer before it even starts. We'll talk about that next on The Scope.

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Interviewer: I'm talking with Doctor Deb Neklason, Huntsman Cancer Institute Investigator and Program Director of the Utah Genome Project. Dr. Neklason, congratulations on your recent JAMMA publication. What did the results of your clinical trials show?

Dr. Neklason: This clinical trial showed that we were able to treat individuals that had a hereditary predisposition to gastrointestinal cancers. We were able to reduce the polyps in their small intestine with about a 75% response rate.

Interviewer: 75%. I mean, that's a lot.

Dr. Neklason: It was a huge response and they've never seen anything like that.

Interviewer: And what is a polyp?

Dr. Neklason: So the polyps are precancerous lesions that are their duodenum, which is part of the small intestine just after the stomach. These individuals have about a 10% to 12% risk of developing duodenal cancer. If we can find a way to actually drive these precancerous polyps away with a drug instead of having to go in and cut it out every time, it's just a huge proof of principle, a huge success.

Interviewer: And do the people that took part in this trial have a certain type of colon cancer?

Dr. Neklason: Yes, so this is a fairly rare genetic condition. It's about 1 in 10,000 individuals and it come about from a genetic change in a gene called the APC or adenomatous polyposis coli gene. These individuals develop hundreds to thousands of polyps in their colon. They have 100% risk of developing colon cancer if it's not managed clinically and by that they usually end up having a colectomy where their colon is removed and then reattached.

That then eliminates most of that risk of colon cancer in those individuals, but then they still have the risk of other cancers, namely this duodenal cancer. That is very much an unmet need for these individuals. They run the risk of still developing cancer and you can't really take your small intestine out because it's essential for nutrition and digestion and you don't do very well without your small intestine.

Interviewer: How did you arrive at this drug therapy? What made you choose this combination?

Dr. Neklason: So the drug combination we used is Sulindac, which is a non-steroidal anti-inflammatory, kind of like aspirin or ibuprofen. It's used for arthritis but it inhibits a really important gene that's overexpressed in the colon tissue and the duodenal tissue, especially as they advance to become polyps and cancer.

This drug, Sulindac, worked really well to drive regression of colon polyps but it didn't do anything to the duodenal polyps. The thought was that this COX-2 protein was expressed at much higher levels and they couldn't use that drug at high levels. Through our work here at Huntsman Cancer Institute and University of Utah we, as well as others throughout the country, started to pick apart the pathway that turns on this gene. We know that APC, the gene that's altered in these individuals, is important in driving up expression of that and we also discovered that there is a feedback from epidermal growth factor receptor, which is eGFR There's a lot of new drugs that have been developed against eGFR because this is overexpressed in a whole bunch of cancers.

We choose to use a small molecule inhibitor of eGFR called erlotinib, and our thought was if we can hit two segments of the pathway with these two drugs, maybe we can have an effect in the duodenum, and indeed, we were successful with that.

Interviewer: Do you have plans to track them further out? What are some of the next steps with this trial?

Dr. Neklason: There are some really important end points that we need to figure out. One of the important questions that you alluded to is what happens when you take them off drug? Do the polyps come right back? Or we talk about the durability of the response. Is it repressed for maybe a year out and would the design need to be where you cycle them, put them on for six months, off for a year, on for six months, or what would it look like in that way?

Probably even more important is to follow these individuals long-term and actually show a different clinical outcome. What I mean by that is do we prevent them from having to undergo surgery? People that are treated with the drug, do they undergo less surgeries than people that are on placebo? Or even do we prevent cancers in these individuals? Those end up being five, ten, fifteen year studies to be able get a good solid result that you understand.

Interviewer: So here you are testing this potentially new drug therapy in clinical trials and these families who are stricken with colon cancer, and this is really where the whole project started. In a way this is kind of bringing work here at the University of Utah full circle.

Dr. Neklason: This goes back to the late 1980s. There is a team of researchers, including my mentors, that discovered the APC gene. They have gone on the . . . Randy Burt, the clinician who managed these patients has just retired, but he is a legacy in and of himself for treating and managing people with familial adenomatous polyposis and other polyposis conditions.

It's very exciting because we've identified the gene. Over the years we've studied how does the gene work. We've studied the patients, how does the disease progress in them? We're finally at a point where we can precisely understand what's going on in those cells and prevent the disease. This whole idea of precision medicine, we like to think of this as precision prevention.

Interviewer: One of the interesting things that you actually mentioned is that the mutation that causes FAP, this inherited cancer, is in the APC gene and that gene is mutated in sporadic cancers as well. Do you think this therapy could have implications for other colon cancers too?

Dr. Neklason: I think that what we call the proof of principle, I think the fact that we know that we can target these pathways with these drugs will enable us to make better design of treatments down the road. The APC gene is altered in a very early step of cancer progression.

There are some really exciting analogies with colon cancer where it's known that aspirin, regular aspirin, can reduce the risk of colon cancer for people that are at pretty high risk, so that's a drug a little bit like Sulindac. It's quite possible that that knowledge can be used in the prevention and potentially even the treatment because the eGFR is known to be overexpressed in a lot of cancers, so just understanding how we can manipulate that pathway and as we understand cancers better, colon cancers, even lung cancers have a lot of eGFR expression, that just understanding that we can actually get the drug into the body where it needs to go, do what it needs to do, can be applied more broadly.

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Interviewer: Figuring out the best colorectal cancer treatment option for you. That's next on The Scope.

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Interviewer: Dr. Courtney Scaife is a surgeon that specializes in gastrointestinal oncology and is also an expert in colorectal cancer treatments at Huntsman Cancer Institute. I was doing a little bit of research on colorectal cancer treatment options and I've got to tell you, Dr. Scaife, it's overwhelming. There are a lot of different options. I can't even imagine somebody's who has just been diagnosed that's trying to parse through all these different options on their own what they're facing. Help me make sense of that.

Dr. Scaife: There's no question that the information available on the Internet, on public institutional venues and so on is overwhelming. Doing research, investigating your diagnosis before you see your doctor is useful, but if you haven't had your diagnosis narrowed down exactly what is your diagnosis and what is your stage, that information can be very, very overwhelming. To some extent, knowledge is power, but when it becomes overwhelming, it's helpful to wait until you meet with your physicians and get your diagnosis and your staging narrowed. But that information can be whittled down into a package that's more tolerable.

Interviewer: Yeah, I think I scrolled through six, seven pages of a bunch of words that made no sense to me. After you get your diagnosis you said the two key things are your stage . . .

Dr. Scaife: Correct.

Interviewer: . . . and what's the other one?

Dr. Scaife: Your stage and your diagnosis. Colorectal cancer is a term that we group together. Colorectal cancer, it is one disease, but the distinction is the anatomy or where the tumor is located in the body. Because of the anatomy of the rectum, which is the farthest down or the lowest part of your colon, the anatomy of that is a little bit different than the colon so we treat rectal cancer, which is a sub-type of colon cancer, just a little bit differently.

The first thing we decide is does someone have rectal cancer or do they have colon cancer. Then, we decide what stage is it or what is the preliminary staging that helps us look at the treatment plan from there.

Interviewer: Help me walk through some of this process when you do have a patient in your office. They would go through some tests. You would determine the stages. You would determine the type of cancer. What do you do at that point to determine the treatment option that's best for them?

Dr. Scaife: Well, the most common scenario is that someone's had a colonoscopy. Either they had symptoms or they're in their routine surveillance, which should be everyone at the age of 50 and then every five to 10 years after that. If something was found, a concerning polyp, a precancerous high-grade dysplastic polyp is what it's called, or a cancer, then the next thing we do is stage that.

We do the staging by getting a CT scan of the chest, the abdomen and the lower abdomen that we call the pelvis. If we are sure that there is no evidence that, that cancer in the colon has tried to spread to other organs, specifically the lungs and the liver, the most common, that would make it a stage IV if it has spread to other organs. If it has not it's a stage I, II, or III.

That stage is determined by are any of the lymph nodes involved, which would be a stage III, or how thick has the tumor tried to go through the wall of the colon, which would distinguish a stage I, II or an advanced stage III. Those things we often don't know until after a surgery.

If you have rectal cancer, we do further studies to try to help to find those stages first. If you have colon cancer, surgery is the first treatment and that stage is determined at surgery. Already, you can see that the distinction between colon cancer and rectal cancer starts making those decision trees very different. Interviewer: What are some common questions that patients ask in that consultation with you after you've determined the type of cancer and the stage?

Dr. Scaife: The most common question is, "When can we get this taken care of?" Obviously, as soon as possible. We'll do everything we can to do that as soon as possible. The next most common question is, "Will I need chemotherapy?" We don't know the answer to that until after we've decided if it's rectal cancer, most commonly. We often do use chemotherapy. If it's advanced stage II or stage III colon cancer, then it will get chemotherapy after surgery, but surgery would be first.

The third most common question is, "Will I need a colostomy? Will I need a bag to poop in?" Unless it's a low rectal cancer or a really worrisome, very, very large left-sided or more distal in the colon, colon cancer, it's really uncommon to need to have a colostomy bag.

Interviewer: Are there often, after that point, different ways that you can approach the treatment that the patient might have to make the decision, "I would rather do treatment A or treatment B?"

Dr. Scaife: Yes and no. Most commonly, that comes if we have a clinical trial. An important point is that a clinical trial is only ever available if we think that the investigative arm is most likely to be a better option than the standard of care.

Some patients are very scared of trials, but we can't write a trial and IRB wouldn't approve a trial if we didn't that the trial arm is probably actually better than what is the standard of care. If a clinical trial is available, then we give patients the option do they want to be involved in the trial or not.

Otherwise, for colon cancer, really surgery is the first option. Then decisions of do they want chemotherapy after the surgery if they're a stage II or a stage III. In rectal cancer, decisions about do you want only chemotherapy before surgery. We do chemotherapy and radiation often before surgery in rectal cancer. Do they want chemotherapy only? Do they want chemotherapy and radiation before surgery? Do they want a short course of radiation or a longer course of radiation? All of those decisions are decisions that patients participate in but based on the advice of the medical oncologist, radiation oncologist, and surgical oncologist.

Interviewer: What tends to be done most often, it sounds like, is surgery.

Dr. Scaife: Correct. Again, for rectal cancer, it's very common to get chemotherapy and radiation before surgery, but the treatment for either colon or rectal cancer is surgery.

Interviewer: What are some of the other considerations that a patient should keep in mind as they're going through this conversation, as they're sorting through what options they might have? What would you want them to keep in mind?

Dr. Scaife: Definitely the most important thing to do in getting ready for a treatment for colon cancer surgery and possibly chemotherapy is really to just be healthy. There's a big push across the country. The University of Utah and Huntsman Cancer Institute have a huge push right now to really emphasize pretreatment health.

Minimize or stop, ideally, your smoking. Control your diabetes really well. Control your other medical problems, your high blood pressure. Try to exercise three or four times a week at least 30 minutes those three or four days a week. Try to eat a well-rounded, healthy diet. There's no special diet that can prevent or cure rectal or colon cancer, but just a well-rounded, healthy diet really strengthens a patient to get through surgery and other treatments that are necessary.

Interviewer: That's kind of nice. Somebody could take control of those things right away before they know anything else about their cancer.

Dr. Scaife: That's exactly right. There's actually data now that shows that people that exercise before and after colon cancer surgery decrease their risk of recurrence.

Interviewer: Do people that tend to have colorectal cancer have time to get in shape before the surgery? Are we talking about they would have three or four weeks that they could stop their smoking? Is it a slow-moving cancer that they're allowed that luxury?

Dr. Scaife: Yes and no. The answer is yes, there usually are two to three weeks. It is a very slow moving cancer. Two to three weeks, five to six weeks won't make a difference in the outcome of the cancer. Sometimes even longer.

But the other side to the answer of your question is that even just two days is beneficial. For a smoker, just not smoking for two days before an operation makes a really, really big difference. For a person who's relatively sedentary to just go out for a 30-minute walk three days a week for just the two days before your operation can already make a difference.

Interviewer: It sounds like wait until you find out the type of cancer and the stage before you start freaking yourself out with all the options. Let your physician or your cancer team help narrow those down for you. It sounds like surgery is going to be kind of the first thing and then some other decisions will have to be made after that point and get out and exercise right now in preparation for any treatment that you might get. Is there anything else that you would tell a patient at this point as they're leaving your office because I imagine it's an emotional scary time for them?

Dr. Scaife: After the diagnosis has been made and you're leaving your doctor's office, as you said, this information is overwhelming from the beginning. But now that you know is it colon or rectal cancer and you know what stage it is, I, II, III or IV, now you can start to find out specific information.

Asking your doctor what questions to ask, where to get the information. One of the most valuable resources is the Cancer Learning Center at Huntsman Cancer Institute. It's one of the biggest, I think it is the biggest, patient cancer centered library in the country. They have librarians trained to teach people how to get the resources in their diagnosis, in their family situation and in their social network and their questions that they have. The librarians can help them get educational materials appropriate for their diagnosis.

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Interviewer: Carri is a marathon runner, a long-distance cyclist, a wife, a mother, an author of "Along Came Hope," it's a book about the death of her baby, clashing twice with cancer, and adopting her daughter. Carri, today we want you to share your story as a way of learning more about colorectal cancer and to give somebody that's in a similar situation a better idea of the journey ahead, from diagnosis to treatment and how you got through it. First of all, my first question is you're under 50. You're pretty young.

Carri: Yes, I'm only 41.

Interviewer: When people start getting their first colonoscopy, they're 50.

Carri: Yes.

Interviewer: So how did you even find out? Take me to that moment when you found out that you had a colorectal cancer diagnosis.

Carri: In 2009, I was diagnosed with endometrial cancer, cancer of the uterus. And through genetic testing and genetic counselors where I was treated, they said, "With your cancer right now, endometrial cancer, there are similarities between that and someone that might be diagnosed with colon cancer. From here on out, we want you to be tested, have a colonoscopy yearly because we just want to be cautious." I was like, "That's not going to happen to me. I'm 34, but whatever, I'll do the colonoscopies.

So I recovered from my endometrial cancer and then, a year later, they said, "Just to be careful, we're going to do mammograms as well." So I'm 34. A year later, I'm going to do the mammogram, I'm going to do the colonoscopy. There were a lot of things that were going on our lives. So by the time the third one was going to come up, I was like, "No. I'm not doing it." And so I just kept putting it off and putting it off.

So I put it off 2 1/2 years later. So in that 2 1/2 year mark, that's when I went in and I was like, "I better get it done. Fine. Okay." So I go in and I do it and, Okay. We found a polyp." Okay. That's fine. And I've had the same line of doctors and they knew my previous history and so I was at home with my two-year-old and she had the constant cough and we were getting ready to go the doctor. And she's running around and I'm like, "Let's go see [Dr. I]. Let's go see. He wants to hear your cough. Blah, blah, let's go." My phone rings and it's my doctor. My doctor and it's the surgeon. And surgeons never call you.

Interviewer: Yeah, I've heard when the nurse calls, probably okay. When the doctor calls, there's probably a problem.

Carri: Right. And then you answer the phone and he's like, "Hi, this is Dr. so and so." And I'm like, "Ugh." So in the meantime, I'm trying to get my two-year-old dressed, who's like wrestling an alligator and trying to get out the door to go see her doctor for a cough. And he's like, "The test results came from the polyp we removed and there are cancer cells, blah, blah, blah."

I say, "Blah, blah, blah," like I don't want to talk about it, but what really happens is when you hear those words, "These cancer cells turned into cancer. It's positive," it's like tunnel vision. Everything just kind of goes silent. But when you have a two-year-old, you don't have time to kind of let it sink in. I'm like, "We've got to go."

Interviewer: Yeah. It was just such a clash of two different things.

Carri: Yeah. And our daughter was very new to us as well. She was adopted and she had not even been home with us for a year. It was just a lot of different things going on within that moment. And I'm at her doctor's and I'm just sitting there like, "Ugh, I've got to through this again." It was stage one, which is very good. That means it didn't spread but they test lymph nodes and that is very common with all cancers and the lymph nodes were like glands. And I'm not a doctor at all so I'm like, "What are lymph nodes again? What did they do?"

Interviewer: That health class in grade school is a long time ago. Remind me.

Carri: So I'm giggling. I'm like, "What do lymph nodes do again?" Basically, that if the cancer cells or the cancer goes into those lymph nodes, that's bad. We don't want that to go in there, but they can't test the lymph nodes until they do surgery, until they remove the cancer in the area that it surrounds. And that's very typical of cancers. Basically, I wasn't like, "Well, let's just do another biopsy." It was kind of like, "Let's be preventative and let's talk about your options."

So the options are, "Let's remove your whole colon, let's look at your quality of life, or let's remove the part of the colon that we found the cancer so your quality of life can somewhat remain the same. But we won't know until we do the surgery and then when we do the surgery, we'll test the lymph nodes and that's we'll find out if it's spread."

Interviewer: So the decision of just trying to get the part where they believe the cancer is, the risk of that is that they might not get all cancer, is that right?

Carri: Right. So that's the . . .

Interviewer: That's the downside, but the upside is if they do get all the cancer, much better quality of life. They remove the whole colon, then you like to do a lot of endurance stuff, cycling, running, long hikes you wouldn't be able to do that because you have to go to the bathroom a lot.

Carri: Exactly and so . . .

Interviewer: Or the bag?

Carri: Sometimes what they do is when you go in for that surgery to remove the whole colon, they'll go ahead and they'll remove it and then they attach it to . . . this is very wrong, probably, but they kind of attach it to the rectum area. But they can't do it in one surgery so they do the surgery where they remove all of it and they gave you a bag and then they like you heal and then, once everything is good and it looks like it's going to repair, then they're going to go ahead and do another surgery where they're going to basically tie up where that colon was left off to basically your rectum and put it together.

So I would have a bag, but only temporarily. Some people, there could be an issue with the surgery and sometimes people end up with a bag for life because the surgery didn't go well. And it's really hard to determine what's going to happen.

Interviewer: How did you make that decision? How did you decide, "Let's just do part of it"?

Carri: Because I'm young and my quality of life my husband and I are very active and it's like, "What do you want to do?" But it's funny because right now, here today, I had my colonoscopy done last week and they found another polyp.

Interviewer: They did?

Carri: So basically, that's what they said what's going to happen. It's common for you to get polyps. And I'm still waiting for that polyp result to come back. Is it cancer, is it not? And I don't know.

Interviewer: How do you get through it?

Carri: I wrote a book. The book is called, "Along Came Hope," and in that dedication I put, "All it takes is just getting up and putting one foot in front of the other." And you can mean the smallest sense or you can put that in the largest sense. And sometimes, putting one foot in front of the other is just getting out of bed and putting your foot down on the floor and just saying, "Game on. Let's start the day." Your day could be like, "It's so hard and all I need to do is go to work today," and that could be your game on. I mean, sometimes, yeah, you want to go to sleep. When we lost our baby halfway into our pregnancy, it was either . . . I wanted to hibernate. I understood suicide. I really understood it, but that was my thing. Go to work.

Interviewer: That was your "do something" at least.

Carri: Yeah. Do something or just show up and game on because the opposite of that is go to sleep. And either go to sleep forever or go to sleep for three weeks or whatever. And I just couldn't do that. I had a husband and I couldn't let my family down. I couldn't let my mom down, my siblings down and my dad down. I couldn't do it and that just kind of kept me going.

Interviewer: In terms of support, you have done a lot of this on your own, but you've also had some great support. What did you need in terms of support and did you have to ask for that or were people pretty intuitive to give that to you?

Carri: Well, because I've been through my own challenges through various things, obviously, but losing the baby and then endometrial cancer and then having colon cancer, so my support system has always been my family, my husband, my dear friends, everyone has. But at first, when I was first diagnosed with this in 2009, I was like, "Facebook." I'm just reaching out because I can't hold things in. I know a lot of people just want to isolate themselves and not do that, but that's not me

But now, here I am today, waiting for a possible third cancer diagnosis. I just don't want to . . . here I am on the radio and I'm saying I don't want to to tell anybody about it, but I just want to keep it in and I think that people have to understand what it is, how they need help and own it. And just say, "I'm owning it and I need to isolate myself and I'll be fine. If you give me that, I'll show up in a week." Or, "I need to remove myself from social media," and just saying, "I'm not checking social media. I just need to be by myself." Or just saying, "I do need to talk about this and let me talk. I don't want to hear you talk. I'm going to talk about this."

Interviewer: So that would be a big piece for somebody else that's struggling, "Oh, what do I say?? Maybe just don't say, "How are you?"

Carri: Just ask them in a curious way. Not like in a judgmental way, but in a curious way. So how does that feel? What are your next steps? So tell me about lymph nodes. I don't even know what they are." So people that are listening and have a friend, a family member that are going through it, ask them in a curious sense and let them talk about it and just say, "How are you dealing with it? Are you okay with it? What can I do?" Meaning that in a very honest, genuine sense and acknowledging their grief, whatever it is.

Interviewer: Did you find any tools or resources that were useful that you would recommend to somebody else who's going through the same journey?

Carri: Like I said before when I said to stay off of social media and the Internet and don't self-diagnose yourself, that was me. For me, what was helpful was feeling it emotionally. Some people are logical and they want that information.

Interviewer: I think I would want to learn as much as I could about it.

Carri: They want to do that. And so if you're a technical person, you're a logical person and you want that, go online. Read all about it, but read scientific things. Don't read the, "This is what happened to me," because it may not happen to you. You might come through with flying colors and someone's story might be so dramatic that . . . for me now, being on this cancer journey for the past number of years, I can't read anymore because I feel like I heard so many stories, read so many different things that it drains me. And I can't allow myself to be drained because I know how negative I'll feel and I just can't afford that because that means I'll just fall into a cave.

Interviewer: How has this experience changed the way you view things, life?

Carri: It's allowed me to challenge my limits. It's allowed me to say, "I'm going to do this," and it allows me to when I say something and I'm going to tell someone, I'm going to do something, that means I'm going to do it because I don't want to not follow through with something. And that's challenged my belief system. It's challenged me to understand that I'm not in control of my life. I don't know what is in control of my life. It's challenged me to look inward and develop my own faith. And when I say, "my own faith," I don't mean religion, but it means for me to find my own God.

Interviewer: Any final thoughts?

Carri: Don't get colon cancer.

Interviewer: If there's anything you can do to prevent it. And get that colonoscopy right? You put it off for two and a half years.

Carri: I know.

Interviewer: And it's probably fortunate that it didn't get any longer than that.

Carri: So get the colonoscopy because I know the prep sucks and it's awful, but get the colonoscopy because no one wants that. Believe me, no one wants it.

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Interviewer: Genetic discovery is allowing a family to outlive their family history. Up next on The Scope.

Announcer: Examining the latest research and telling you about the latest breakthroughs. The Science and Research Show is on The Scope.

Interviewer: I'm talking with Deb Neklason. She's Program Director of the Utah Genome Project. Dr. Neklason, tell me about this family. What sets them apart from others?

Dr. Neklason: This family is a family that had a lot of colon cancer going on and a lot of people dying at young ages, in their 40s and 30s and 50s, and the family was very impacted by this. So the family was engaged in research to be able to try to piece together the genetics and the history and try to determine what was causing colon cancer in the family.

Interviewer: How did scientists go about discovering what was causing that disease?

Dr. Neklason: The clinicians and the researchers, geneticists at University of Utah worked very closely together on identifying individuals that seemed to have a clinical . . . they had a relative who had had colon cancer or they themselves had had multiple polyps. And they engaged these individuals in research, obtained a blood sample that they were able to look at the DNA, and tried to piece together some part of their genome that they are inheriting that is shared by all the people who are affected by either multiple polyps or have had colon cancer or a parent with colon cancer, and try to piece that together and rebuild that puzzle.

Very early on they identified a gene that's involved in a similar condition called familial adenomatous polyposis. These individuals have hundreds and thousands of precancerous polyps. And so they were able to associate it with this gene and then eventually over time to be able to sequence through and actually find the specific genetic change. And in fact, everybody who had had colon cancer or had multiple polyps did have this genetic variation.

Interviewer: Right. So as part of your journey in helping this family, you went back to patient zero. You did kind of investigative work to figure out where this variation came from. Why was that important?

Dr. Neklason: Well, that's really important because it demonstrates the breadth of the impact of this genetic variation. It's not just a little two or three generation family. We actually traced this back 14 generations to a Pilgrim couple that came to America in the 1640s, and it tells us there's a lot of families and a lot of individuals in this country that potentially have this genetic variation, and we're trying to still continue to piece together these families.

Interviewer: How many of those descendants do you know of have this genetic variation?

Dr. Neklason: We went through and very rigorously investigated three branches of the family that looked like they had more colon cancer than usual. Two of those three branches have the genetic variation, the mutation that leads to high colon cancer risk. And in those two branches we have identified, let me think, 186 individuals with the mutation, and 819 individuals who do not have that mutation, and we've been able to go back and provide that information along with genetic counseling and education to these individuals. A hundred and forty or so of them chose to pursue genetic testing and education and so they know the mutation. The remaining individuals, some of them are deceased.

Interviewer: That's the important part here is that there actually are preventative screening and preventative measures that these people can undergo to slow or stop the disease, right?

Dr. Neklason: There are, and that's definitely the amazing thing about it. We've been able to look at the family and the cancer rates in the family over the years and see what sort of impact did genetic testing have on this family. What sort of impact did it have on cancer prevention? And so we are able to look at cancer rates using the Utah population database that has the genealogies, and overlay the Utah cancer registry, cancer records on top of that. So all cancers diagnosed in the state are reported. When we went and looked at the numbers of cancers in the two affected branches, we found that when we initially engaged them in research, which was about from the mid-80s to the mid-90s, we saw that cancer rates dropped in half in the family.

Interviewer: Wow.

Dr. Neklason: Their incidence was about five times higher than the general population, and they dropped down to about two times higher than the general population by just knowing. That is in the absence of genetic testing, but knowing that they have something going on in their family. So that's the impact of communication and knowledge and education on these individuals. And then we see again after we started to do genetic testing and return results to the family, we see another drop, about 30%, in this family for cancer rates.

Interviewer: How are they made aware of this inherited condition and what the risk is to them?

Dr. Neklason: All of these individuals that I had mentioned we've done genetic testing on, about 180 of them that were mutation positive, we've enrolled them in research and their successive generations. So whenever the children turn 18 we give them the opportunity to enroll in research, and through that we're able to extend this knowledge and the information.

We also encourage the families to communicate with their family members and work with the parents to say, "Okay. You need to talk to your children about that. When they're at the age where they can make their own decisions, you need to look at pursuing genetic testing." And then if they don't carry the mutation then they don't need to undergo colonoscopy like past generations did until they're age 50, the average population risk. If they do carry the mutation then they need to start having colonoscopies in their early 20s and prevent and remove these precancerous polyps before they can become cancer.

Interviewer: So you have this long-term relationship with this family. What do you hope to do going forward?

Dr. Neklason: We would really like to try to piece together some of these other families that are across the country and figure out how they relate to each other, and a lot of that's just engagement of the existing research participants. Do you know your family history? Do you know the names of your great, great grandparents, and then all of a sudden you can start to piece together these families. And that's important because some of these other 15 families, odds are you can expand that family, just like we did the Utah family, to include hundreds of individuals who are at risk and don't know that they're at risk. It flies under the radar and sometimes it's very hard to pick out in the general population that colon cancer is not just bad luck in your family, you actually do have this genetic mutation that's leading to your risk.

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Host: It's been generally thought that a colonoscopy was 100% effective at preventing colorectal cancer, but new research has shown that's not necessarily the case. N. Jewel Samadder is the lead author of a recent study. He's at Huntsman Cancer Institute. What did you learn in this study?

Dr. Samadder: Yes, for a long time physicians were under the impression that colonoscopy was 100% or nearly 100% protective from colorectal cancer, however, our data clearly shows that though colonoscopy is excellent, it can capture 94% of all colorectal cancer.

Host: That's still pretty good.

Dr. Samadder: Exactly, it's pretty good, but it's not perfect. We just need to be aware that it's not perfect. We need to figure out why this small number, 6% of all colon cancers, are being missed at colonoscopy, and what can we do to capture them.

Host: So what did you discover as far as why?

Dr. Samadder: We found a number of predictors that were associated with the missed colon cancers at colonoscopy. This included patients being of an older age, over age 65, having a family history of colorectal cancer in a close relative, or having a polyp, which is a precursor of colon cancer, found at the prior colonoscopy. These are some features that physicians can use to decide the risk that their patient may have for missed or interval colon cancer at colonoscopy. Hopefully that will allow them to spend more time examining the colon in these high risk patients and reduce the risk of missed cancers.

Host: So if you don't have those risk factors you're probably still going to be really good. If you do have those risk factors the physician actually can spend more time and overcome them?

Dr. Samadder: We think so. We think that, obviously, every physician should spend as much time as he or she needs to examine the colon and do a good job of reducing the risk of colon cancer in their patients, however, with patients who have these risk factors the physician can spend additional time in the colon. Some studies have suggested that the amount of time required to examine the colon should be at least six minutes, and some have suggested nine minutes or more. Physicians could elect to use a longer time on the withdrawal to examine the colon. They could also make sure that the bowel preparation is adequate so that they can look behind folds throughout the colon without stool impairing their vision.

Host: For patients it's really important that they communicate any of these risk factors to their physician so that they can have the information to do a more thorough job.

Dr. Samadder: They need to have an open discussion talking about their family history of colorectal cancer as well as the results of polyps, these precursors to colon cancer, that were found at a prior colonoscopy.

Host: This was a really significant study of a wide base of population if I understand correctly as well, so these results are very accurate.

Dr. Samadder: Yes, the data here which is derived in Utah is broadly applicable to the rest of the United States since the data was generated from both a very large academic medical center and a large managed care organization that together account for over 85% of all patient care in the State of Utah. It's broadly applicable throughout the United States. We hope that it will inform patients and physicians of the strength of colonoscopy in preventing colon cancer, but also the challenges that lie with colon cancer screening that not all cancers are detected at colonoscopy. Hopefully it will drive further research as to understanding the causes of these missed cancers, what we can do to better understand the limitations of colonoscopy and improve polyp detection and polyp removal to make colonoscopy maximally useful.

Host: What's the takeaway message that you would want to have our audience leave this discussion with?

Dr. Samadder: I think the take home message is that colonoscopy is extremely effective at reducing colorectal cancer, however, like any test it is not perfect. Up to 6% of colon cancers can be missed at colonoscopy, and it's important for patients and physicians to discuss some of the risk factors that we've found that can increase your chance of having a missed cancer including older age, having a family history of colorectal cancer and a prior colonoscopy with polyps or advanced polyps found.

Announcer: We're your daily dose of science, conversation and medicine. This is The Scope University of Utah Health Sciences Radio.

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Host: Colon cancer screening guidelines might fail to catch 10% of colon cancers according to some recent research, but that's only part of this story. What makes this story so unique is how a wide array of very unique data was combined in a way that has not been done before in a study of this magnitude. We're here with Dr. N. Jewel Samadder, gastroenterologist at Huntsman Cancer Institute. Tell us a little bit about this study and what made it so unique.

Dr. Samadder: Our study looked at 127,000 patients who underwent colonoscopy at the University of Utah Health Sciences system and Intermountain Healthcare. These two health systems account for roughly 85% of all health care in the state of Utah. We were able to look at the colonoscopy records and identify those patients who had polyps found at colonoscopy as well as patients who did not have polyps found at colonoscopy, and by using the unique genealogical records that exist in the state of Utah and the linkage with the Utah Cancer Registry, the statewide cancer registry, look at what is the risk of polyps and colorectal cancer in the relatives of patients who are found to have polyps at colonoscopy.
In most states where data like this exists it exists in separate silos that you can not easily or ever combine together. However, in Utah we're very unique. One, we have two major health systems that account for the majority of health care in the state. Also, we have a statewide cancer registry, the Utah Cancer Registry, which has been part of the SEER network of registries since 1973. State law requires that all cancer diagnoses, including colorectal cancer, from any hospital or health system in this state is reported to the Utah Cancer Registry.
Third, we have genealogical records that are also linked into the Utah Population Database. Finally, we have a unique ability to link all electronic medical records from the University of Utah Health Sciences system and Intermountain Healthcare into the Utah Population Database and thereby into these genealogical records and the cancer registry records.

Interviewer: Truly, if I'm getting this right, there's no other place that this could've happened other than here in Utah at this moment in time.

Dr. Samadder: Exactly. There is no other U.S. state or province in Canada that could do this type of research. The closest thing that comes to this is there are a few Scandinavian countries that have genealogical records, but they're much more limited and really only in first degree relatives and can not go out to more distant relatives.

Interviewer: This type of data, how does it change your trust in the results that you get from it?

Dr. Samadder: That's a great question. One of the important things when we look at such large population base studies is to look at does it represent all of the patients or the majority of patients we would see. Well, our patient population we used here is cared for by the two health systems that account for a majority of the state. We have 127,000 patients nearly in our colonoscopy file that we were able to look at. Again, that is a broad cross-section of the state of Utah, versus limiting it to a single hospital or a single region, a single urban center for example.
A second thing is many studies that have tried to examine this in the past have been limited by patient recall of family history data. By using the genealogical records we take those biases all out of the picture.

Interviewer: So, if I was to ask how confident are you in these results?

Dr. Samadder: We are extremely confident in the results.

Interviewer: That's got to feel good to be able to say that when it comes to doing a study like this.

Dr. Samadder: Yes, yes. I think it has the potential to really inform screening guidelines and colon cancer prevention with the use of colonoscopy and appropriately targeting populations that are at higher risk, those with a family history of polyps or colon cancer.

Interviewer: You take a look at currently what the screening guidelines are. You put that up next to your research. How does that change things?

Dr. Samadder: We still recommend the current screening guidelines, that people with no risk factor everyone should undergo some type of colon cancer screening at age 50. The current preferred screening option is a colonoscopy, and that should be repeated every ten years.
People who have a risk factor such as a family history of colon cancer or polyps at a younger age in their close relative, below age 60, start colonoscopy at age 40 or 10 years before the earliest advanced polyp or colon cancer in that family, and repeat more frequently - every 5 years instead of every 10 years.
However, the guidelines currently say that if your relative developed colon cancer or advanced polyps over age 60 you can start at age 50 which is the standard guidelines. Our evidence and study would support maybe considering starting those people at an earlier age as well such as age 40.

Interviewer: How do you even go about changing the guidelines, then? If this is something you truly believe in, you truly believe your research is solid, what's the next step for you in this process?

Dr. Samadder: I think the next step in this process is generating more data. We have now also looked at colorectal cancer in this colonoscopy population, and the risk of adenomas or polyps and colorectal cancer in their relatives and showing that the risk, again, is increased regardless of the age in which the initial colon cancer is diagnosed.
I think when that study is also published that'll provide more fuel for us to then approach the different screening guideline organizations and say we have evidence from multiple studies in our population that support this increased risk of polyps and colon cancer in relatives regardless of what age the initial patient developed advanced polyps or colon cancer at.

Interviewer: What kind of man hours work went into bringing all this data together? Paint the picture for me. How many computers did you need? How many people did you need looking at it? How Herculean of a task was it?

Dr. Samadder: This was really a collaborative venture between the Huntsman Cancer Institute, the Utah Population Database, and Intermountain Healthcare. It was having staff at all three sites that allowed us to do this project.
For example, we had programmers at Intermountain Healthcare who identified all of the colonoscopies done over this time frame of 1995 to 2009 generating an electronic list from that. That was securely transmitted to the Utah Population Database with the identified medical record information and then merged with data from the University of Utah Health Sciences system, where a programmer also similarly in parallel extracted all colonoscopy records and securely transmitted it to the Utah population database. Finally, that data was then linked with the genealogical records and the Utah Cancer Registry records.
In terms of manpower or person power of effort, this is 10 to 15 people working at all 3 sites putting in hundreds of hours of work in programming time just to get all of these databases linked. Then, thinking of the question and analyzing the data is also hundreds of hours of programming time to do the statistical analysis.

Interviewer: It's not just as easy as taking some data from here, taking some data from there, putting it together, and seeing what you get.

Dr. Samadder: No, unfortunately not.

Interviewer: How much computing time did it take? Do you have any idea? Is that something that you're even aware of? Once they get all this stuff in and then they...

Dr. Samadder: It's not that long, actually. It's not like the old days where you have these supercomputers.

Interviewer: So that part's the easy part.

Dr. Samadder: That's the easy part.

Interviewer: The hard part was extracting what you need and then figuring out how do we get this database to talk to this database.

Dr. Samadder: Yeah, yeah. It's probably, like, 10 minutes, 20 minutes of actually the computer thinking it and doing it. That's not the limitation.

Interviewer: Yeah, yeah. For this type of research, what are the biggest challenges that need to be overcome to make it easier in the future so we can do more of this great research more easily?

Dr. Samadder: Probably the most important thing is what we have in Utah, these unique linkages that occur between our health system, our cancer registry, and the Utah Population Database to allow these data pieces to come together.
Why that's important is we want to look at the entire population. We want the data we generate to represent not just the care at a university hospital, not just the care at a managed care organization, not just the care at an urban center like Salt Lake City, but it can be expanded to generalize or summarize the type of care that's provided throughout the entire state of Utah in multiple different health care settings in multiple different urban and rural settings.

Interviewer: Your next study, how long do you think before that's going to be out?

Dr. Samadder: Our next study, looking at the risk of polyps and colorectal cancer in relatives of patients with colorectal cancer, is currently at a journal and hopefully will get published soon and will be the next one.

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