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.

The Nature of Colorectal Cancer

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

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

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, 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

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.

Metastatic Colorectal Cancer: Timothy’s Story | Cure Connnections

The Nature of Colorectal Cancer

The Role of Fight Colorectal Cancer

Timothy’s Experience Receiving His Colorectal Cancer Diagnosis

Typical Colorectal Cancer Diagnosis and Journey

Timothy’s Experience With Chemotherapy for Metastatic Colorectal Cancer

Increasing Awareness of Colorectal Cancer

The Impact of Clinical Trials on Metastatic Colorectal Cancer

Taking Regorafenib for Metastatic Colorectal Cancer

Timothy's Experience With Clinical Trials for Metastatic Colorectal Cancer

Colorectal Cancer Treatment Amidst COVID-19

Resources for Patients with Colorectal Cancer

Improving Colorectal Cancer Management

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