Reese Garcia, Fight Colorectal Cancer

We are going to move to the last piece here: thinking about how we can do better overall. Tim and Jamie, overall, what do you think? I know you think that we do great, but think about the overall world of cancer we live in. What do you think oncologists and the oncology team can improve in terms of managing patients, in terms of education, and in terms of treatment care? There are also a lot of financial implications, and we have not touched upon those. There is a whole hour that we could spend talking about that effect. Then, of course, how do we make sure that we end up meeting your needs? Any high-level thoughts about this?

It is all those things you just touched on. You worry about it. You always hear the scary stories of people who have exhausted their life savings to live two months longer, so that is something definite that we decided. I could have kept working, but my goal was to retire at age 55, so I stayed true to that. Keeping Jamie’s job and the insurance takes a bit of the burden off me as far as getting to the right providers. I did not have to change. We have gone through three insurance companies, and we have been able to stay with the same providers. That has helped a lot for consistency and everything.

You bring up a great question overall. Yes, we feel fortunate to have fallen into your hands, Dr. Bekaii-Saab, and Kelley’s, and that is great care. Looking more holistically, that is an important question. As great a job as you guys do, sometimes the pieces are not all connected. You guys do a great job, but then I get a bill from an insurance company saying that they are not going to pay for something. Sometimes it feels like the left hand does not talk to the right hand, and I have to fight with an insurance company. I have to get the paperwork that they need because they do not understand that a medication is not indicated for this, but it is still used that way in the oncology world. All those little pieces, sometimes from a holistic perspective, are out there floating around. I do not know what the answer is, but it feels overwhelming to try to keep all the pieces together. I often think about even older patients who might not have the ability to pull all those pieces together. How do they manage with all this? We are fortunate that we are in the field we are and that we have the resources we have. Even with all that, it can be overwhelming to fight with an insurance company or to try to get documentation when you just did that last month. Those are the pieces that, as a society, we could do better at.

Absolutely. Reese, what about financial resources or directing patients to financial resources and navigating that? In addition to having a diagnosis of cancer and having to fight through that, you now have to worry about the finances and financial support as well as fighting insurers and filing for bankruptcy for some patients. There are a lot more tragedies than the eye can see. What tools are you able to use to help with this, or what tools may be needed in your viewpoint—if they are not out there—to educate folks more?

 Fight CRC [colorectal cancer] does not provide financial support directly, and we generally point to our partners at Triage Cancer who are in tune with the legal battles patients and their families may face as well as insurance issues and finances. We have an established relationship with them, and we will do webinars every year or so to update our community on the different things that they might need to know. I would say that, even though we do not provide the financial support or necessarily the legal advice directly, we work with others to do so. From an oncological and a medical perspective, staying abreast of what advocacy organizations do and what types of resources they offer is extremely important to be able to point patients to the resources that exist, because there is a lot out there. Sometimes, it is not necessarily projected as much as it could be, but there are resources out there that are available, and advocacy organizations know about them and are able to point patients and their loved ones to those resources.

Kelley, you help oversee, manage and ensure that the patients are navigated safely through their journey, and it takes a big team. You have the pharmacist and the nurse working with you and others as well. If you have to give guidance or give advice to other health care providers, patients or caregivers about the model that—from your viewpoint—facilitates this level of care the most, what would you say to your peers?

You have to have a conversation with your patients regularly about what they need. A lot of times, patients do not want to bother us with stuff: “I am having this thing, but I did not want to tell you because I know you are busy.” We have to listen to what our patients are telling us, and we have to educate them about letting us know what they need. We at the Mayo Clinic are pretty fortunate in that we have a lot of resources that other facilities may not necessarily have. We have social workers who are fantastic, and we have pharmacists who are brilliant. If a family member, patient or colleague outside oncology recognizes something that is happening, all they have to do is let us know. We may not have the answer for it, but we may be able to do something to make things better.

We are certainly blessed to have that level of support for our patients. There are a lot of folks who work in the background: the finance person, the nurse, the technician, the pharmacist, the nurse practitioner, the physicians, from the chemotherapy nurse to the nurse who is focused on education, the navigator. It is a big team. The complexities of the system around how we care for our patients is immense, and we certainly hope to continue improving things with the support of organizations and advocacy groups with Reese’s work. Of course, we do all this for our patients, for you, Tim, and certainly for their families, Jamie and their son.

With that, I am going to thank all of you for this wonderful exchange. It was very educational, and it is great to be able to have this discussion with all of you. Thank you.

Videos

Improving Colorectal Cancer Management

Tim and Jamie, I am going to go to the two of you, and feel free to take it together. Outside the clinic and besides the two of you, who has played a role in supporting you through this journey? Have you been able to be somewhat more open about communicating about this with friends, family, and loved ones? It is always difficult to talk about an illness at any age but especially when you are younger. Have you felt that some questions or actions were a bit uncomfortable? Share your experience about all this.

I will go first. When this started, I was still working full time. I was a national manager, so I was traveling all over the country, and I kept it pretty tight. I had my immediate supervisor in on what was happening because I felt that, once you let that cat out of the bag, everyone is going to treat you differently. All of a sudden, you would go from reaching out and being a good manager to people, to “He has this this huge burden on his back, so let’s not do that.” For the beginning part, I was pretty close: just family, immediate people at work and maybe one or two friends on that.

As things then progressed and time has gone on, people are starting to wonder why they have not heard from me too much, so I extended who I was sharing the information with. In the beginning, I was more comfortable with not making it a big deal and broadcasting, “I have this issue, so bear with me.” I did not do any of that. As time has gone on, I have been able to have good conversations with people I have not talked to in a while. That could help me a lot. I have a different perspective on it going into a lot of years doing this.

Tim has evolved a lot in his willingness to be open. Initially, understandably, he was used to being tough. His nickname was Nails; he was used to be being tough and not wanting to show weakness, so I understood that. He did not want anybody to know, which sometimes made things difficult at the same time. For me, I was fortunate in the sense that I always worked for oncology companies from the time this happened, so I have had a lot of support at work. People have been understanding. With that said, this year I started with a new company, so that is something I put on myself. I have a fear of wanting to prove myself before they know that I need some support. There is always that battle going on in the background.

In terms of Tim, he has definitely evolved. He has gone from not wanting anybody to know to being willing to talk to people about what is going on. He realizes that talking and reaching out for help is a good thing, and not with everybody but with the certain people you feel comfortable with. Everybody is different. Tim is a private person, so his journey with even expressing things to different people is different from somebody else’s. That is the important thing: understanding that each patient is different and that this is a part of their life, but it is different for each patient. Some want to talk about it, some do not and some evolve over time and may not have wanted to initially but later find value in that.

I totally understand. Reese, I am sure that you are in the midst of that. You know a lot about these challenges—your organization does—and how not just patients but their caregivers also face sharing the treatment journey with their loved ones. What kind of resources do you have to help patients, especially the caregivers, in navigating this treatment journey?

We definitely recognize that caregivers are facing unique challenges in the time of COVID-19 [coronavirus disease 2019]. I would point out that, when we surveyed our community, we also pulled in caregivers, and we found that they were more likely to report having feelings of anxiety and nervousness when facing these things on behalf of their loved ones. Out of COVID-19, we have developed several caregiver resources looking at caregiver burnout. Of course, there are issues of finances, mental health and job stability as I mentioned. There is a whole gamut of challenges that we have heard from the patient and caregiver community that caregivers are facing, so we have channeled some of our energy toward creating resources with webinars, blogs, and 1one-pagers. Those have been helpful in identifying the true challenges that the community is facing and providing some support there. We have also worked with the Caregiver Action Network, which is focused on providing resources for caregivers, to disseminate that information.

That is quite a lot. This is such a complex issue, for not just the patient but also the family and loved ones. The availability of these resources at a time where you feel lost and confused as you go through these roller coasters is certainly a comfort.

Resources for Patients with Colorectal Cancer

We are still living in the world of COVID-19 [coronavirus disease 2019]. Hopefully it will soon be behind us, but it is not too soon, sadly enough. We are seeing the light at the end of the tunnel.

Tim, especially as we started to understand how this can be even more complicating for the lives of our patients with cancer and even worse for those on treatment, how has this pandemic impacted your treatment process? You have been through a lot for the last nine years from diagnosis, early stage disease, then later stage disease, to then going through a lot of trials, and you are navigating through your cancer and have to think about COVID-19. Tell us more about how this affected you. How did this affect your line of thinking about coming to the clinic and about getting treatment?

On the one hand, I am going, “What else is going to go wrong here?” Then it turned into a full-fledged pandemic. You are exactly right because I am now a high-risk patient. Going outside the house in the beginning is scary because, as I said, if you are in that group, then you should be staying home and not doing anything, which was hard on me. Everything else was closing in, and I have never seen the whole country in such a panic like this. You then put on top of it what I am dealing with, and it seemed like a double whammy type thing. I was confident that every precaution was being taken.

I had a procedure this morning, and it was 72 hours before to get tested, so there are a lot of things and a lot of hoops you have to jump through. At the end of the day, I felt confident in going to the clinic and that nothing bad was going to happen there, aside from going to a restaurant or something like that. I have a lot of confidence in my health care provider team and the direction they said I should be going in to put me on a path with the best direction.

Jamie, you are again dealing with a treatment and with the thought of cancer. On top of all this, your mind has to go through, “Oh, God, now there is this COVID-19.” We are not thinking about ourselves; we are thinking about our loved ones and “What if I get exposed to it and bring it home? What if my child gets exposed to it and brings it home?” How did COVID-19 affect your thinking and your feeling about Tim getting treatment or even venturing out of the house, even in full gear?

I tried to discourage him from leaving the house at all.

This puts a lot more on me: I run all his errands, but I just think it is the most prudent thing to do. With our son, it has been a bit of a discussion in terms of how much we keep him home or let him have a bit of a life. We have let him out a bit, but obviously in the safest way possible.

To answer your question about treatment, the definite benefit of treatment outweighs any risk. To Tim’s point, we felt confident that the Mayo Clinic has taken every precaution possible to keep people safe. We have felt safe about him being there. We had to go to the ER [emergency department] once, and I was not excited about it, but Mayo has done everything in their power—and again, the benefits certainly outweigh the potential risk.

Yeah. Mayo and a lot of other places as well have done a great job of protecting patients, especially the most vulnerable, whether that means cutting down on the risk of exposure or keeping things quite clean. It is not that we discovered soap during COVID-19. We had soap before COVID-19, but we certainly took way more elements like limiting visits, which was sometimes painful for not just the patient but also the provider. We always love and enjoy having family members with the patient, but we had to limit exposure, and that was mostly for the safety of our patients.

You are right: In the first stages of the pandemic, I started wearing scrubs because we did not understand a lot about the virus and its transmission. Starting in August, I shut off the scrubs and started wearing my suits, and I am thinking that this is the safest and cleanest place I could be. I am the least worried around the clinic and clinic space, so I got to be comfortable. If I am comfortable to have you in the clinic, I should be comfortable wearing my suit and being able to be there. We still, of course, do all the proper measures—wearing masks, distancing, using glass, cleaning up, and all this—but that certainly adds value.

Reese, I want to get back to you because I am sure, especially during this pandemic, that you have been bombarded about how you get information. “I am anxious about COVID-19. Should I continue with treatment? Should I change my treatment? Are clinical trials more risky?” How have you and your organization handled the situation, which is not ending tomorrow? It will be ending but not tomorrow. How have you been handling this time?

We wish it would end tomorrow, that is for sure. Initially, when COVID-19 came to light in the United States, we started hosting focus groups and putting out surveys to our community. It was no surprise: Our community shared some of the sentiments that Tim was just sharing. One of the things we found is that we can get creative with our communications, and it has strengthened our ability to have that bidirectional conversation with community members. No longer are we putting all our time and effort toward in-person events, even though once COVID-19 is gone, we would like to bring that back and have a hybrid model. We have been able to get creative with how we are delivering webinars and having panels vs. just didactic communication and so forth. We have been able to up our email communications, and we have seen a bit more engagement in that sense. Having the community telling us what they are needing, what they are facing, and the issues that they are seeing that are lived and true is giving us the ability to respond in real time.

It has certainly been an interesting time for all of us, and it has been a learning experience. We are going through it, and thankfully our patients have been quite protected. I am happy to say that, for almost all our patients, if not all of them, we have been able to help them navigate through the pandemic. Have we established certain patterns of changes? Of course. Have we limited certain aspects of how we do it? Yes. Have we increased our utilization of telemedicine? Yes, to a certain degree. We certainly think that telemedicine will become part of the future of how we care for patients, but it will not replace face-to-face interactions. Most of our patients need to be seen face-to-face when they get treated on-site.

We have instituted logical applications of telemedicine. Of course, for now we leave quite a bit as a discussion point between the patients and us, but I will think about that in the future. For example, Tim, I am thinking about regorafenib. At the time you were on the trial, you were coming in every week at least for the first month to see Kelley. After that, we started spacing it out. In the future, I may need to physically see you only once every couple of months, and maybe in the middle we will do a telemedicine visit. In the long run, we will limit it quite a bit and try to minimize the physical communication when it makes sense. We have a lot of patients who travel distances, and for someone who just needs to discuss their scan or their labs every six months, we certainly do not need them to travel. For most of our patients, I do not see telemedicine replacing physical care: It is just a good supplement and complement to what we do.

During COVID-19, which continues on, we started thinking more and more. As capacity gets limited, especially during those surges like in Arizona—we are having a big surge that will hopefully tone down—patients are more reluctant to travel. It sometimes makes it a bit challenging, and we also have to think about the immunosuppressive potential of our agents and the added risk to patients. For example, Tim, you mentioned regorafenib. You are not on it now, but back then you were. When we think about the process for our patients, when I have the option between regorafenib and TAS-102 [trifluridine, tipiracil hydrochloride], I try to pick regorafenib for many reasons. One is that it is less immunosuppressive than TAS-102 [trifluridine, tipiracil hydrochloride], which can essentially lead to drops in blood counts and increase the risk of immunosuppression.

When I am thinking about an oral formulation vs. an IV [intravenous] formulation, depending on the setting, I am not going to take an oral drug and replace FOLFIRI [5-fluorouracil, leucovorin calcium, irinotecan] or FOLFOX [5-fluorouracil, leucovorin calcium, oxaliplatin], which are needed in the first- and second-line settings, but I certainly think about how quickly I want to tone it down to capecitabine maintenance, for instance. I am thinking about de-intensification strategies, which makes sense overall, COVID-19 or not. COVID-19 has certainly accelerated us moving into this world.

Colorectal Cancer Treatment Amidst COVID-19

You have been through another couple of trials, correct?

Was the experience the same or different?

They were about the same. The last clinical trial did not affect the feet or the hands as much. I do not know if my body is just adjusting to what is happening there, but it was pretty much the same. Being able to take it at home was a huge difference. We then did one clinical trial with immunotherapy.

No, unfortunately not in your type of cancer, the microsatellite stable type. Although the study you are mentioning was with an agent that was trying to inflame the cancer and make immunotherapy more effective, it did not pan out. Jamie, you are pretty knowledgeable about clinical trials, drugs and all that. How do you see yourself helping Tim go through the process of thinking about and enrolling in these trials? Of course, whether you are on trial or not, there are side effects to be managed, and there is sometimes a bit more that is unexpected with clinical trials. How did you handle all this?

For me, clinical trials are definitely beneficial and normal. I work for an oncology company. I have been in the oncology industry for over a decade, so I understand the value of clinical trials. Tim is obviously well educated in this space, so I was helping him go through the information to make an intelligent decision, looking at the pros and cons and what would be best for him in his situation. As he mentioned, we both view trials as an opportunity to try something new.

We have always talked with you about those next plans—A, B, and C and what comes next. It is empowering for a patient to know that, even though the standard of care is out there and you may have tried it, there are these new options, and there are better and better options available every day. He is already educated, but I was helping him with that process, understanding the pros and cons and supporting the decision he makes in terms of which trials he feels are appropriate for him.

You guys are a team, and you have certainly navigated this with greatness. Reese, I am going to go back to you and ask you this: How does your platform educate patients for enrollment in clinical trials? Obviously, Tim and Jamie have quite a bit of background, but most patients do not have the same background, and they probably want to reach out to you. How do you educate patients about clinical trial enrollment? What are some educational resources you may have for not just patients but also nurses and other health care professionals, especially when thinking about the side-event management?

From a high level, we have lots of printed materials, webinars and blogs that focus on these issues: clinical trial myths and enrollment questions. We get at the high level of what patients need to know about entering a clinical trial. The myths component is big, so we have a clinical trial minimagazine, which is our holy grail of clinical trials. It outlines everything a patient needs to know from starting to look for a clinical trial all the way through the end of a clinical trial. Those resources support Fight CRC’s [Colorectal Cancer] Clinical Trial Finder, which is a great resource for not only patients but also—as you mentioned, Dr. Bekaii-Saab—nurses and providers.

Our Clinical Trial Finder is not comprehensive, which is important to know. It pulls clinical trials from clinicaltrials.gov. On the back end, we actually have six patient advocates who are research advocates, sifting through the trials, looking for trials that would benefit patients with stage IV disease with microsatellite stable tumors as we talked about. At the time when it was developed in partnership with a scientist named Dr. Tom Marsilje, who was going through his own stage IV battle with colorectal cancer. He saw the need to pull in patients at the back end, to both Jamie’s and Kelley’s points about having educated empowerment among those facing colorectal cancer. This Clinical Trial Finder is directed toward those who have stage IV disease with microsatellite stable tumors looking for the trial that will be their next option, knowing that the algorithm we use is identifying those with the highest potential benefit and the lowest chance of failure in the eyes of our late scientist Dr. Tom Marsilje.

That tool is good for patients to feel empowered and search for trials themselves, but it is also great for a provider to search for trials while their patient is in the office. We have some great anecdotal stories about patients who brought the trial finder to their provider. They were able to sit in the office together and look at trials that were relevant for them at the time. Those are the main ways we do so, and then we also partner with some other organizations that have different nuanced communities that we can point our patients to as well.

That is an amazing enterprise. I know that we have had quite a few patients who have navigated your platform successfully and have been directed to many of the clinical trials. This certainly makes a world of difference, so thank you for what you do.

Timothy's Experience With Clinical Trials for Metastatic Colorectal Cancer

Tim has done great on clinical trials, and we will go through his experience in a bit. He has seen at least three, right Tim?

Three clinical trials, and we will dissect them. Kelley, you have been quite pivotal in helping Tim navigate some of these clinical trials, especially in terms of ensuring that he is well supported and able to get through them. Can you talk a bit, without necessarily too much detail, about how your own experience and knowledge has been able to help Tim navigate the complexities of some of these clinical trials?

One of the things that is hardest for patients and me to deal with is that clinical trials sometimes have a lot of rules that make them more difficult to manage. Some of our clinical trials have what is called randomization, where the patient may have the opportunity to go on one, two, or three lines of therapy, and sometimes that line of therapy is standard of care. It is randomly chosen what arm they go into, and patients sometimes have a hard time being randomized to the standard of care. They are disappointed and upset that they did not get put in the fancy clinical trial arm, so there is that.

Sometimes people are on medications that work well for them, and they have to go off those medications and have to substitute for something else, something they may have been on for a long time. And because of the way the trial is set up or the medication is processed, they have to go off a drug that has worked for them to control their blood pressure, nausea, or anxiety. They have to stop those medicines and go on another one so that they can go in the clinical trial, which means some of their other symptoms may not be well managed.

There is also the schedule. The study lays out the schedule. For someone on standard therapy, we may see them only once a month. But if they are on a clinical trial, they have to be seen more frequently, which means they are at the clinic longer and more often if they travel. They are a lot more restricted in what they can and cannot do, and that sometimes makes it more difficult for patients to manage the process.

Tim, I am going to take it back to you. You are certainly pretty knowledgeable about all the trials that you have been on. Why did you consider getting involved with clinical trials? What exactly is it? In that sense, what is the advice you would give others when they are thinking about their own treatment and the potential to consider clinical trials?

I definitely did not look at it as if I was at the end of the road and had nowhere else to go, because I was still having a pretty good response to previous treatments. When they started to wane, I was basically ready to start clinical trials. I have exhausted the standard of care at most institutions, so that is how I got involved in it. Additionally, after I had surgery and they could not resect it, they mentioned getting radiation and then clinical trials as the next step. I got a lot of encouragement from my health care team, and that gave me a lot of confidence going into a clinical trial. As Kelley mentioned, you do not know if you are going to get the Cadillac or if you are going to get the standard of care, so there is always that in the back of your mind. There is usually a crossover down the road on it, so you do get the study drug.

I looked at it as the next step, not as a failure of anything. Particularly in my area, this is something that is all over the world of clinical trials around colon cancer, so I thought I was in a pretty good spot because there are a lot of studies, and a lot of them are complex where you have to have all these biological markers and things like that. I just had the garden variety tumor that might be harder to treat than the others.

It definitely helped having someone to help see the ins and outs of the clinical trial and how it works. That is probably the best thing that patients could get to make sure that they understand how the clinical trial protocol works, and that if they do not get on a study drug, that would happen down the road a bit. That is where the team approach comes in, and Kelley has done an awesome job making me understand what the outcome of the trial will be and how to take care of those bumps in the road.

You have been through different types of trials. You have been through three of them. Briefly describe what those trials were focused on and what your experience was with them, potentially including some of the side effects that you experienced and how long you were on them. For a couple of them, you went for a while.

Yeah. They did not call it the ReDOS trial when I started, but they changed it after they were done with that. I was on the highest dose of the nonstudy drug.

You started with the dose. There were two arms to the study: a dose-escalation arm and the arm that just started on the highest dose, and you were on the highest dose.

Yeah, it was for a good three or four months at least, but I accepted it and said, “Let’s do it.” We were having good results. I had some really positive scans, the blood work was good and I was tolerating it to my expectations. Then there were some of the side effects around the second or third month on the drug: I got the hands and the feet. That was the only thing I noticed, but the feet were the worst because I could not exercise. I had to buy new skates with a big toe in the front because of the pressure, and I had to have special tennis shoes made up. The hands and the feet were the biggest challenge on that. For someone who is active, all of a sudden, you cannot close your hands and your feet; it is painful to walk.

You did relatively well after that. Did they adjust the dose of the treatment?

Yes, absolutely. They went from the highest dose to a medium dose. Then the trial completed, and I stayed on it for some extra time.

You were on it for a bit more than a year, maybe a month more than a year.

This trial is one example of a trial that changed practice. You ended up on what we call the standard-of-care arm, and the other arm, where you escalate the dose of the drug, was essentially meant to start low and go high vs. the standard, which was just high. It essentially ends up that, if you start low and go high with the same drug, you end up doing better with the toxicities and doing better with the capability of the patient to tolerate the treatment, and you are perhaps doing better on other fronts. Your participation helped complete the trial, and the study helped change the NCCN [National Comprehensive Cancer Network] Guidelines. There was even a suggestion that may change the label. That is an example of you participating in a trial that changed the standard of how we use this drug. Kelley, do you want to say something?

Yeah, sorry. I did not mean to interrupt you.

No, you are good. I did not know if Kelley wanted to speak. I saw that she was ready to say something.

Tim never slowed down at all. He continued to do all the things he wanted to do. He is downplaying his activity level. He made me exhausted when I heard him come in and tell me what he was doing. He is a great study patient because he does everything you tell him to do and then some, but he was also good at telling us what was happening so that we could make adjustments, so that he could continue to do the things he wanted to do.

These adjustments were done in rea -time to help him go through the trial. Is that right, Kelley?

Right. He did great. He was on that drug for a lot longer than most people.

The other point I was going to make before we move on is that I had so many things in the cancer center and everything with the infusion, and this was the first oral drug I was exposed to. That has challenges, but it also takes a lot of the burden off you from going in and with the whole routine of getting an infusion. That was new to me, and I know more drugs are going to be small molecules with an oral use for them. You feel as if you are a bit more in control of things, but you have to remember to take your medicine every day. It opened up a new front for me.

Being on the oral drug was a perceived advantage, but it is importantto emphasize that these do not come without side effects. They are manageable as long as there is an open line of communication with the clinical team, with Kelley and me, and that certainly helps you navigate through some of the toxicities. Once things get adjusted around the drug, you could certainly continue with it as you did for a year plus, with a bit more of a normal life than carrying a pump around or going to the infusion center. That is what I heard from you, right?

Absolutely. I would even say that that was about embarrassment, even with just walking around. I used to drive my son to school every day and try to hide that box. It has gotten a lot smaller, so you can; it is not as big. You are exactly right: You’ve got that, and that is why the chemotherapy is so different from the emerging clinical trials.

Taking Regorafenib for Metastatic Colorectal Cancer

In terms of clinical trials, we consider clinical trials as part of our standard as the NCI [National Cancer Institute] and NCCN [National Comprehensive Cancer Network] define it. When we think about the standard options, if a clinical trial is available in that space, then that would be the preferred option, and there is a good reason for it. That is our best shot at continuing to improve care. Over 50 years in colon cancer, for example, we have improved survival from 10 months on average to four to five years, and that is the median. That is just a cut in the middle, but when we think about what percentage of patients are able to survive beyond five years, it was less than 5% even 20 years ago. Now almost half the patients are able to cross that line, and I suspect half those patients will cross the 10-year line in the next few years. Ultimately, we will cure colon cancer as long as we continue on this track, and there is no reason to think we will not. We are doing much better.

Of course, it gets more tricky as we go through multiple lines of therapy. Tim, you know that more than anyone else because you have been through so many lines of therapy. Every time you come out, it is almost as if you are coming out of a boxing match or UFC match. Rather than get some rest, you are going to the next match. You are a little bruised, and you are tired, but you are still in the fight. It gets more tricky.

When I finished my fellowship in 2002, for colon cancer we had 5-FU [5-fluorouracil], and we had irinotecan just coming out. Then there was this drug, oxaliplatin, that folks were talking about. In fact, I had a patient come into my clinic and ask me about oxaliplatin, and I thought, “I do not want to look like I am stupid, but I do not know what this patient is talking about.” I said, “Let me get back to you.” I go out to talk to my attending physician. I say, “What is this drug oxaliplatin?” He says, “It is undergoing a clinical trial, and it sounds promising, but we do not have access to it.” Lo and behold, it becomes one of the drugs that is a standard and elevates the standard in the postoperative setting.

This came after a clinical trial, and they kept pushing the agenda. We then started talking about biologics: bevacizumab, cetuximab, panitumumab. These all came between 2004 and 2006. After that, we started understanding more about how to refine our selection of some of these treatments and understand the value of the genetics of the cancer, such as 

 [human epidermal growth factor receptor 2] amplification, 

 fusions, MSI [microsatellite instability]–high and a number of targets that we can go after, and they keep on expanding. That has moved us quite significantly forward. Of course, we all know the whole world of immunotherapy that came to us in cancer, but in colon cancer it has been limited to a small percentage of patients, and we continue to try to expand it to the rest of the patients.

A lot of options on clinical trials have been coming about. These clinical trials serve quite a bit of purpose. If we think about our standard options, we are limited to two major chemotherapeutic regimens, a couple of biologics that are approved and then two oral agents after the other options stop working, yet we have tons of options that are being explored in different settings on clinical trials. Tim was a perfect candidate. He was a great candidate for enrollment on clinical trials, No. 1, because of his inquisitive mind. As Kelley mentioned, you’d better go into that room prepared because you know something smart is going to come at you, and you’d better know the answer. Tim continues to be motivated about thinking about clinical trials and thinking, “What is next? What makes sense? Even if I am doing well today, I want plan B, plan C and plan D ahead of time,” which is great. You have to have good stamina but also a support system, which Tim obviously has with his family. You must certainly be able to have a clear understanding that this continues to be a partnership among the treating oncologist, the APP [advanced practice provider], the patient and the family. This will help us look at this as a partnership.

The Impact of Clinical Trials on Metastatic Colorectal Cancer

Kelley, we see quite a few patients going through quite a few lines of therapy, sometimes with breaks here and there. We see different biologics, and we continue to build an armamentarium of different types of therapies, whether they are on clinical trials or not. In our practice, at the Mayo Clinic, it is not unusual to see patients going through multiple lines of therapy and continue to do well.

Yeah, that is encouraging. That is what keeps you going.

You talked about how a lot of times our patients will hear from nononcologists that you have cancer, and you have six months to live, so you should go on vacation. I do not think people who do not work in oncology understand that we have a lot of things to offer people: Especially for colon cancer, there are standard therapies and clinical trials. It is common for patients to have made it through multiple lines of therapy and then enter into the clinical trial arena, which to me is such a brave thing for people to do because a lot of times, we do not necessarily know if something is going to be effective, and people are willing to try it. I have had more than one patient say to me, “If this does not help me, then maybe it will help somebody else.” It seems so brave for people to do it. I have had a lot of patients who have been told, “You have about two years.” Then they are 18 months in, and they think, “I have only six months left.” I say to them, “You are doing great. Why are you limiting yourself? You have all kinds of time to do what you need to do.” A lot of times, people are surprised when they get to us, and we tell them that we have things for them.

Reese, I know we will talk a bit about clinical trials later, but I want to touch on this because I find that this, as Kelley mentioned, is not uncommon, unfortunately. When folks reach out to your group, how do you direct them? How do you make sure they understand that a patient is not a statistic and that most patients are doing great and are living beyond expectations? We want many to cross the five-year and 10-year line. Tim is an example of someone who is hopefully going to cross the 10-year line. If he initially went and googled survival, he would have thought that he had less than two years to live.

One of the main ways we address this—because I agree, it can be a dangerous road looking up statistics and going off that—is primarily through education. We ensure that not only are our patients being educated by our medical advisory board with the most up-to-date information, but that we are empowering them to have conversations with their providers if they have these types of concerns by saying, “I found this on Google. What does this mean for my care?” It is the education empowerment.

I would also point out, Kelley, one thing that you said earlier stuck out: These patients are extremely brave. Clinical trials are oftentimes seen as a last resort, which you might also find on Google or from discussion boards. In reality, these trials are paving the way for future research, but they are also something that is incredibly important to have on hand early on in the treatment plan. Just because you go in a clinical trial does not mean this is the end of the road. If anything, it is opening up new outlets and avenues for one’s treatment care. A lot of what we do is balancing what people are finding on the internet with the education that we can provide them by putting it into context and ensuring that it is realistic information that will ultimately empower them to make those treatment decisions alongside their doctor.

Yeah, you are bringing up a great point about the importance of clinical trials and how we advance care. Patients are volunteers on these trials, so they volunteer their time and their health. They volunteer a lot of things to try to move the field forward, and many times, as Kelley mentioned, they are not even thinking about themselves as much as they are thinking about the next generation and how it can help others. It is incredibly altruistic.

I get asked, “Why did you go into oncology? Why do you take care of patients with cancer?” It is one of the most rewarding jobs on the planet. I get asked multiple times, “Would you do anything else? If you had to go back, would you do anything else? This oncology business sounds somewhat depressing.” I say, “You know what? I would do it 20 times over.” Being able to be around some of the bravest and most heroic patients and be alongside them in their fight is one of the most inspiring and rewarding jobs in medicine and in jobs period.

Increasing Awareness of Colorectal Cancer

Tim, we have talked about your treatment. We will go back to talk a bit more about clinical trials because, as Reese mentioned, we all know clinical trials are—when available—the backbone of how we advance care, because we are not where we want to be yet. We are doing much better. Certainly, a lot of it came at the heels of a lot of research over the years, but we want to continue doing better.

We talked a bit about the radiation and the cetuximab. What was your experience on chemotherapy and some of the adverse effects? You say you did well, and I know you are pretty tough. I sometimeshave to sit with you, and I have to drill you for you to tell me about the issues that are happening, and I can understand why. Sometimes feeling disabled by a treatment or limited at a time of your life when you did not expect this to be the way you would live is understood. Perhaps it is important, in this forum at least, to describe what happened during those treatments and what it felt like to disrupt your life. Jamie, I will get back to you after this. How did it feel with these effects—a couple of days, three days a week? How did life go for Tim?

I went into it with a little trepidation because the word 

 frightens most people, including me. I went into it, and I went to a seminar that the Mayo [Clinic] had put on about first-time people with chemotherapy, which was good and answered some questions that I had. It changes your daily routine a lot, and you have to be prepared. Jamie helped me a lot with this. After you get home, you are not going to go out and cut trees down in the back yard. You may have to rest for a day or two and recover. We got into a good groove where I would get the chemotherapy, and I would feel bad and run down the next day, particularly with the FOLFOX-6 [5-fluorouracil, leucovorin calcium, oxaliplatin] regimen. Initially I could not touch anything that was cold, and your hands feel like they are going to fall off.

The first chemotherapy was a learning experience, and I had the support from my doctor, who said to keep exercising and keep trying to do my normal routine as I could when I felt the energy to do it. I kept working out every day. I switched from running to walking briskly on the treadmill. I tried to keep things as normal as I could, but it was definitely a life-changing event. I thought, “Wow, where did that come from?” You felt like you got hit by a 300-pound person out on the ice. You have to change your daily routine, especially after the treatments. With all the pre- and post-treatments, it is something I got through with not a lot of problems. I continue to be active, and that may have helped as I look back.

To remind people, you have been at this for a while. How many years have you been on treatment?

That is about eight years, or it is actually a bit more now.

We’re in 2021. I keep on forgetting that.

Yeah, and you are still going strong. It has certainly taken a toll, I understand. Jamie, share your experience. It is important from the caregiver standpoint, and you have been at this for many years. How are you able to support Tim? You have your own thing going as well, so you are managing quite a bit. What would you recommend for other patients and caregivers going through the same process?

It is a lot. I want to be there for Tim and take care of him. We have a young son that I also need to take care of, and I have to work so that we have insurance and everything else that we need. It is a lot to manage. Trying to take it one day at a time is the best advice I have. It can be overwhelming when you think of all the different pieces and things there are to manage, so take it one day at a time and try to understand what the patient needs. Tim has needed different things and different levels of support at different stages of his journey and the treatment process. Understanding what he needs at that point in time shifts and changes along his process and his journey. That is probably the most important thing. Trying not to get overwhelmed with everything is probably the best advice I have.

Of course, having relatively young children when you are dealing with this—they have grown up with this, right? This is ongoing for eight to nine years. How have your children gone through this process, with the support and acceptance, and the ups and downs? How have you been able to handle this roller coaster of treatments through the last nine years?

Yeah, that was always exactly what you said. When I was first diagnosed, he was 3 years old, so he did not understand what was going on, and we tried to shield him from a lot of the things that were going on. I tried not to show if I was in pain, why I was sleeping in the middle of the day, and those kinds of things. As he has gotten older, we brought him into the loop more and explained to him—and Jamie did a good job with that—what was going on. He has a pretty good surface-level knowledge of what is happening. We live in the moment, and that seems to help a lot. We do not look too far ahead and do not look back.

He was 3 years old when you were diagnosed?

I am thinking about not just when you were initially diagnosed but when you were diagnosed with metastatic cancer. You are now thinking about this. I am assuming that he was about 4 or 4½ years old at the time. What was going on in your mind, thinking about that idea of, “Wow, I never thought this would happen”?

That is the game changer. It is more serious, and that is why we tried to bring him into the picture more, so he could understand things. It was not too heavy that it would affect him in school and that he would worry about me. I want him to focus on what he is doing because he is an unbelievable kid and a great student. Everything is going great for him, so we try to balance that out with what is happening and keeping things as normal as possible.

I know quite a bit, and I hear this from a lot of patients about how the first thing they hear from physicians, nononcologists, is that, “Well, you may have six months to a year to live” and a lot of the nihilism that goes around cancer. I always try to discourage even my oncology colleagues, within reason, to mention numbers, because as you know from your experience, those averages mean little for the individual. It is not that what you are going through is not real; it is very real with the anxieties of understanding that, at some point, this may not continue, but at the same time, there are many more years, we are hoping, that we will continue to see your child grow.

Yeah, that has helped more than anything. That is one of the reasons I do not look at the internet and all the statistics and things like that, because it is an individual response to different medications or whatever. Keep focused on what is next, and that is where Kelley has helped a lot with bouncing things off her: “What about this one, and what about this trial?” It definitely keeps you focused on what we can do to be positive. Let’s not think about how I should have been in worse shape than I am now, going on almost nine years. That is an important way to go.

There is more to come. We are not close to anything, but we are doing better.

Timothy’s Experience With Chemotherapy for Metastatic Colorectal Cancer

Your presentation is certainly not what we consider a standard presentation. Most folks present a bit later in their lives, and they usually have blood in the stools or changes in bowel movements. But occasionally this is the presentation. For you, it did not come with a warning sign. Oftentimes, it comes with a little warning sign, mostly a change in the color of the stools, blood in the stools, or some chronic pains.

Everything was done the way it usually is when we have someone presenting with an early stage colon cancer. We have to stage them with scans to ensure there is no cancer spread beyond that point. At the time you were diagnosed, there did not appear to be any cancer outside the confines of where the tumor was. The follow-up for a while will continue being with scanning and blood as was done in your case to make sure we do not miss emerging lesions. We know that the first two to three years of cancer, when it is diagnosed early enough for surgery, are critical. The first year is incredibly critical. The second is a bit less critical, but it is still there because the first two years are when you have the highest chance of the cancer coming back, and then it starts toning down after three years. Unfortunately, in your situation, the cancer decided it wanted to show back up. The phrase 

 is a bit misleading. That means it went away and came back. But it never left. It was just hiding as little cells in other areas, and it was not eradicated. We end up capturing it as we go through the scans as we did.

Kelley, I am going to go back to you on this. I know the role of nurse practitioners and advanced practitioners is better understood, but perhaps this is important: I can tell you, I cannot run a practice without Kelley. That goes without saying. Perhaps remind folks about what exactly your role is in guiding patients through diagnosis and treatment and talk about your first encounter with Tim.

My main role, at least the role I have now, is symptom management. If people are on therapy, chemotherapy or immunotherapy, I manage the side effects with the patients. I educate them about different medications they may need to use to manage symptoms or adverse effects of their therapy. I talk to them and educate them about what kind of things are going to happen when they start chemotherapy. I encourage people and help them through the process, whether it’s for adjuvant therapy, the post-chemotherapy following their surgery, or after they develop metastatic disease. I help them through the process because chemotherapy is hard. A lot of times, people need a lot of assistance and education as they go along. I was trying to think about the first time I met Tim. Correct me if I am wrong, but it was on the ReDOS trial, correct?

Tim is not your usual patient on chemotherapy. Not much slows him down. He would usually know more about things than I did. A lot of times, he was educating me about things, which was quite nice. I was always chastising Tim. He would come in and complain about a side effect, and I would say to him, “It is because you are playing hockey four or five times a week. I cannot fix your problem because you insist on playing hockey.” I am pretty sure Jamie got mad at him because he spent a lot of money on some fancy ice skates to help his feet not hurt so bad from the treatment. My goal is to make people’s treatments better.

Kelley is humble. She does more than just symptom management. She is a full partner in this journey for every patient of ours, and I certainly rely and our patients rely quite a bit on her.

Typical Colorectal Cancer Diagnosis and Journey

Tim, you are the focus of why we are here: you and Jamie, but mostly you. Share a bit about your diagnosis. What signs and symptoms led you to seek medical attention? This snuck up on you because it came just short of when you were supposed to get your colonoscopy as recommended. You did not know that this was there, but I wonder if, retrospectively, there were any signs and symptoms you can think of that perhaps others need to be looking for. How did you end up under medical care, and what tests were initially performed?

My diagnosis was a little different to say the least. I was on my way to the airport to go to play in a hockey tournament in Florida, and I had had a pain in the middle of my stomach for the last month, but it was not bad. I tried taking some antacids, proton pump inhibitors, and that helped a bit, but it got increasingly worse—the pain and tightness. I did not know if it was a muscle or if there was something else going on, so I was worried about that. I turned the car around, and I went to the ER [emergency room]. It turned out that I had appendicitis, and they took my appendix out the next day. I went home—and this was maybe two days later—but something was still not right there. They did a CT scan, and I had a blockage. Then they did a biopsy and found out what it was, but that was pretty much it. I was relieved for a day and a half because I thought, “It was just appendicitis.” In the back of my mind, I was thinking it could be something worse.

That is how I had a downstream issue with the appendix. They took it out, then they went back and did a biopsy. They came in the following day and said that it was cancer. It was shocking to me, to say the least, because I was young, and they were telling me that. The gastroenterologist at that time said, “It does not look like cancer, but we are going to do a biopsy.” They came the next day and gave me the news on that. It is something you do not forget. I can still hear the surgeon’s voice today saying, “You have cancer.” That is how it turned out. On the one hand, I was lucky that it did not linger longer and that the appendicitis brought me into the hospital. It was a little different.

Were you having any symptoms before then? Anything that you can think about?

It was a tightness in the middle of my stomach, and it got worse after I ate, but no other real symptoms. I had no family history, and it was just something that I was aware of. But that was the only symptom I had. I did not have any bleeding.

For folks who are listening, you were quite active and athletic.

Yeah, I exercised three or four times a week, vigorous exercise: running, weights, the whole thing. It just snuck up on me, and I was fortunate that it was stage III when they initially caught it. For symptoms, I did not have a lot of them. As Kelley said, I was relatively young, and they were downplaying it. I was asking what else could it be, and they said, “You look healthy. You do not have any really big symptoms other than the pain in your stomach.”

Jamie, you were there when they came in and said, “You have cancer.” What goes through your mind?

Shock, disbelief. As Tim mentioned, it was so unusual in terms of coming in for an appendectomy and then the next day finding out it was cancer, and to wrap your head around that because, as he mentioned, he was so active. Not only did he work out quite a bit, but he was still playing adult hockey. He was incredibly active and young for his age. It was difficult to understand what was going on, how this happened, and how we got there. It was all a lot to take in at that point in time with it being so new.

Have you had anyone with cancer in the family? Have you dealt with cancer before that in the family?

Unfortunately, I have dealt with quite a bit. I had a sister who passed away at 32 from malignant melanoma, and my father passed away a couple of years later from lung cancer. For me, that was the other thing: Cancer meant something terrible in my experience. When I found out, it was devastating because everybody in my life who had cancer did not do well in a very short period of time.

Going back to you, Tim, when you were initially diagnosed, your cancer was in an earlier stage. It was not the earliest, but it was an earlier stage. It was stage III.

You had your surgery then, so tell us about that. You then had some chemotherapy.

Yes, I probably had the standard of care. They took out about 11 inches of my colon, 29 lymph nodes, and everything looked OK from that perspective. From there, I waited about a month, and we then started FOLFOX-6 [5-fluorouracil, leucovorin calcium, oxaliplatin]. That runs about six months. I did fine after that for a good 18 months, and then I moved to the Mayo Clinic for my care. Everything was good for another couple of months. Then on a routine six-month CT scan, they noticed a little growth or something in the mesenteric area of my stomach. I started on cetuximab and 5-FU [5-fluorouracil]–leucovorin for six treatments, and that lasted for quite a while. That was a good year, year and a half; before that, it was more proactive.

I would not say I started to relapse, but there was still some cancer in there, and that is when they decided to do some radiation on it. I went through six courses of radiation at a lower dose, and that sufficed me for another six to eight months. I had surgery after that. I had a scar from the whole front of me, and they looked at taking it out, but it was too risky. The damage to the arteries that feed the small intestine was just too dangerous, so they did not hurt me, which was good. They put some clips around the lesions, the tumors, and I then had another course of radiation. They bumped up the radiation because they could see it better with the clips on.

Timothy’s Experience Receiving His Colorectal Cancer Diagnosis

Reese, how does your advocacy group differ from others that support gastrointestinal cancers?

Some of the biggest ways that Fight Colorectal Cancer differs from other GI [gastrointestinal] advocacy organizations are through our specific focuses, which include patient education, policy, and research. We were founded about 15 years ago when it was apparent that there were no squeaky wheels in research or policy that were representing the patient voice, especially at either of these tables. Not only do we now create engaging and medically accurate patient education materials with the help of our patient education community, but we also fund research, and we convene the scientists around specific topics like you mentioned: early onset colorectal cancer [CRC] and immunotherapy. We also move policy forward at the state, local, and federal level.

What resources does your website provide to patients and caregivers if we want to direct them to your advocacy group?

We have anything from blogs on patient stories to webinars on specific research topics, as well as podcasts on caregiving. We have a podcast that we call 

, which covers taboo topics about the booty; that was a fun name that we gave our podcast. We have a whole wealth of resources that range from those modes I mentioned, and they cover all the topics of interest to the patient community and the caregiver community. I would like to note that we recently translated a bunch of our patient education materials into Spanish, knowing that our patient community is much more diverse than the English materials that we had them in originally. We also work with other organizations, knowing that we cannot do everything all at once. Our help line, for example, is a partnership with Cancer Support Community, and we leverage strengths in the community to bolster our patient education resources as well.

How do you advocate for patients with CRC at every level? I know your group is active at every level, but perhaps it would be good for folks to hear how far and wide you all go for patients with colorectal cancer.

Our reach is national. We advocate, as I mentioned, at the policy level and at the research level. One policy example is our annual Call-on Congress, where we go to Washington, we storm Capitol Hill with over 150 advocates, and we advocate for policies that affect survivors of colorectal cancer and their loved ones. For example, we have advocated tirelessly to close the Medicare loophole bill, which charges seniors unexpected fees if they undergo a colonoscopy and have subsequent polyps removed: It changes from screening to diagnostic. We also, as you mentioned, advocate tirelessly for the under-45 patient population. Just the other week, USPSTF [United States Preventive Services Task Force] came out with its grade B recommendations, and Fight CRC played a part in that. We are convening stories and pushing out the need to provide recommendations and comments in this comment period. There are a lot of ways that we address advocacy from policy and research.

The other thing I would mention is that we have a group of research advocates who are patients, caregivers, and a few medical professionals who educate themselves on the science from bench to bedside and everything in between. The goal of that program is to train patient advocates to become the most educated voice at the research table, to advocate for the entire patient community, and to represent a different patient voice at the research table to advocate for the best possible care and treatment available.

Great, thank you. You all do such a fantastic job at helping patients and caregivers through their difficult journeys, and you are certainly a great resource for them, but you are also a great resource for a lot of us. We can direct patients to you, to your website, and to your help lines, and we always hear great things from our patients who seek that out. Thank you for all you do.

The Role of Fight Colorectal Cancer

Kelley, you have been doing this for a while, taking care of a lot of patients. Talk about the nature of colon cancer. You treat various gastrointestinal cancers. What is particularly different or differentiating about care for colorectal cancer in the clinic?

Patients with colorectal cancer tend to have a lot of body changes. When they have surgery, they may have a permanent colostomy or a temporary colostomy, but it is something that they have to learn how to manage, and it can often be quite disturbing for people that they have this new process to deal with. Starting treatment, there tends to be a lot of information thrown at people at the beginning, so it is a lot for people to absorb, especially when they are starting.

You are absolutely right. This is a cancer that involves the intestines, so all functions of the intestines can be disrupted. It can certainly be quite disruptive for life and quality of life. As we know, colon cancer in the United States and the world is one of the most common cancers. Over 150,000 patients every year get diagnosed with this cancer, so it is a pretty large practice with quite a few patients. This cancer can have, for some, a genetic etiology, meaning that they inherited it or were at risk for it because someone in their family may have had it. The majority of the patients have no genetic link. In fact, for most of the patients we treat, we are unable to identify a clear risk factor. There are a number of risk factors that have been postulated that may link to it from eating too much meat, but that gets debunked in other studies and gets validated in some to certain lifestyle issues. For genetically driven cancers or for inherited cancers, Lynch syndrome is most prominent, but there are others as well. As I said, it is mostly unknown why folks get colon cancer, and we are still trying to learn.

One thing is that we are seeing more and more of these cancers coming early. We are seeing patients—and Kelley can vouch for this—in their 20s, 30s, and 40s presenting with this cancer, oftentimes with metastatic disease, more and more of them. That is a trend that we are seeing across the nation and now across the world as well. A lot of thought is going into this. Is this a lifestyle change? Over the last two or three decades, we have changed our diets, and we have changed our activity levels: We sit more, we play more video games, we watch more TV, and we eat stuff that does not make much sense in some ways and have affected our microbiome adversely. The microbiome is this microbial component of the colon that essentially keeps it healthy, and it has been postulated that eating meat that is injected with antibiotics or drinking milk with hormones could affect and change the microbiome, and that could be part of the equation. There are a lot of reasons why this could be. Kelley, we are seeing quite a few patients who are younger and younger.

The youngest patient I have is 27, and the oldest is 90, so it does not seem to discriminate. It seems that the younger patients are often diagnosed with metastatic disease because nobody is looking at a 27-year-old to have colon cancer, so their diagnosis tends to be delayed.

Yeah, like for hemorrhoid, people think this may be just a flare of hemorrhoids or what have you, so they tend to pay less attention. Screening for colon cancer is now advocated for starting at age 45 by certain agencies. For African Americans, definitely. For the overall population, I say for folks to remind their friends to start getting screened at 40. I would not be surprised if this age continues to get younger. Tim, did you know anything about colon cancer? Did you even think about this being something that would happen to you prior to being diagnosed?

I did not. In my mind, I was more thinking that, traditionally, it was for older patients, so I did not need to worry about it yet. I had just turned 50, and I had not had a colonoscopy yet.

The people at the hospital where I was being treated said that it does not look like that, that it looked like some kind of blockage. I did not think it was colon cancer. Even when I was at the hospital, I did not think of it. As you mentioned, I thought it was for people who eat a lot of red meat or maybe drink too much, that type of thing. But I knew it was a lethal cancer, and it was second after lung cancer. It was always in the back of my mind: age 50. It was so well publicized that you have to get a colonoscopy when you are 50. I do not know if it would make a difference. I was six months over 50, but I had it on my calendar to do it that year. I knew it was the second leading cause of deaths with cancer, and it was something that, as you hit 50, you need to think of all the things that you need to do, and that was definitely one of them.