Patient Perspectives: Young Onset Colorectal Cancer

Podcast Transcript

Dr. Scott Steele: Butts & Guts, a Cleveland Clinic podcast, exploring your digestive and surgical health from end to end.

Hi everybody and welcome to another episode of Butts & Guts. I'm your host, Scott Steele, the Chair of Colorectal Surgery here at the Cleveland clinic in beautiful Cleveland, Ohio. I'm very, very pleased to have today's episode because these are the ones that are actually some of the most meaningful that I've ever had. This is where we have our patient perspectives series. And specifically today, we are going to talk to Brittney Ferguson, who was my patient, and I had the wonderful opportunity to care for her and get to know her family.

We're going to talk a little bit about something that is scary and something that shouldn't happen in young people and that's young onset colorectal cancer. So Brittney, welcome to Butts & Guts.

Brittney Ferguson: Thank you so much.

Dr. Scott Steele: Well, first of all, let me just absolutely thank you for having the opportunity to come on and talk to our listeners out there and get a little bit of an overview about that. So, if you would just tell a little bit about yourself, where you're from and what you do, and a little bit about your family and then we'll go into a little bit more later about the specifics about what led you into discovery of rectal cancer.

Brittney Ferguson: Okay. I am 37 and I live around Howard, Ohio and I'm the mother to two beautiful daughters. I'm fortunate enough to be able to stay home with them and we do the whole shebang. We homeschool and spend a lot of time together. So, very family-oriented, wonderful husband and close-knit family. So, very blessed and very fortunate.

Dr. Scott Steele: Yeah, I can attest to the fact that you do have a wonderful family and today just for our listeners, I want to give you a little bit of background, because they're talking about young onset colorectal cancer. So, when we talk about this, we know that colorectal cancer every year is about the second or more commonly lately, the third leading cause of cancer-related death in the United States every year alone. Interestingly throughout the years, and probably more specifically with the rise in having people listening to their bodies and undergo screening colonoscopies, it's been something that has been on the fall in most of the age groups, except for one, and that's the young population, which we consider less than 50. More concerning, we're seeing even younger and younger and for all the listeners out there, it's important to understand that what we're not talking about here is we're not talking about those who have necessarily a genetic or familial trait that would lead to a much more predominant colorectal cancer.

So, this is just run of the mill colorectal cancer being more common in that, and this increase in incidence rates has been something that's been a little bit perplexing because like most things, we don't know exactly the causes of cancer. We know there's some genetic component to it, some environmental component, some exposure component to it, a little bit of a lot of things. So when we talk about what is causing this, for example, we don't have a great, and so we're trying to combat that and that's what's led us to change overall the new screening guidelines. I encourage all of our listeners out there, we have a couple of different episodes talking about these screening guidelines, as we dropped the national screening recommendation for asymptomatic people down to age 45 and please see some of the past Butts & Guts episodes on this.

So Brittney, tell us a little bit about yourself. So, you're in your thirties and life is good. You got a great family, you got two wonderful, beautiful daughters. What were you experiencing? What was it that you had symptoms of that you were like, "What's going on?"

Brittney Ferguson: Well, I truly don't know what specifically was linked to the cancer. So, my first daughter was born a little over nine years before my diagnosis of cancer. But leading up to that, I had bright red blood and mucus in my stools. Sometimes I would only have blood and mucus and I was checked for external hemorrhoids before my diagnosis, several years prior to that, and they didn't find anything. Then later on I experienced frequency and urgency to have bowel movements. I had stomach aches and those bathroom changes just continued to fluctuate with the urgency increasing. I tried to check out my diet, see if maybe there was something triggering those problems. Nothing really was consistent enough to show any dietary factors.

Approximately two years before my diagnosis, I had a prior illness and I had received a referral to go see a gastrologist, but I didn't follow through. Probably not wise on my part, but I do believe everything has happened the way that it has for a reason. The real turning point though, was I began to have chest tightness, that it was associated with pain and discomfort, that would wrap around to my back. I would have dizziness. I had discomfort between my shoulder blades and it was difficult to take in deep breaths. I had an emergency room visit, which spiraled everything and got that started. I met with a cardiologist, I had stress testing done, an EKG, but everything with my heart looked good. So, then when I met with my primary care physician, once she realized we had ruled out heart and diet, she wanted to send me to a gastrologist.

So, I did some research because I wanted to make sure I had a gastrologist that was in good standing, had good reviews, was a good listener, a caring disposition, and they came highly recommended. So, by doing my own research, then I got connected with a good gastrologist.

Dr. Scott Steele: Yeah. So, that had to be, in a way, a relief that you knew your heart was okay, but still a little bit concerning the fact that, "Why have I got bleeding and what is going on with this?" So, you met Dr. Holinga, and tell a little bit about your experience and what you went through and then what'd they find and what were your emotions at the time of when they found?

Brittney Ferguson: Okay. So when I spoke with Dr. Holinga the first time, she really impressed me because she didn't allow us to do a whole lot of exploration in the sense that she didn't make me go through things I had already ruled out, such as diet. She spoke with me, listened to me very intently and through just her experience and expertise, decided that we should go straight for the colonoscopy. I don't know that she expected to find anything. She was very positive and upbeat at the initial consultation. Then even once I had the colonoscopy, very positive, they did go in and wound up finding, was it a three centimeter polyp?

Dr. Scott Steele: Yep.

Brittney Ferguson: So they found the three centimeter polyp and she tried to reassure me not to be too concerned and was very, very encouraging and then called me less than a week later to let me know that it was, in fact, cancer. So, she said she wanted to be as aggressive as possible and that's what led me to further treatment. Of course, my initial reaction to everything was, first of all, I was shocked. I expected something wasn't right, but I didn't expect cancer to come through on the other end of the line. Of course I was scared, but I did know that regardless of what happened, I was determined to meet everything head-on and with as much positivity as I could. I wanted my girls, my husband, really anybody who knew what was happening in this situation to know, and to see me rely on my faith and to have a positive attitude, because I think that so much of how well treatment can go can be dependent upon your persistence, and your outlook, and being positive.

Dr. Scott Steele: Absolutely to that, there's no question. I can point to many studies, that that positive attitude, regardless of what disease process you're going through, will be associated with a better outcome. There's just some mind, body connection that we can't quite explain, but I can't tell that Lord knows the first time I saw you, that resonated very much so, with that. So how was your family through all this? There was no family history of any colon or rectal cancer. What was the thought there?

Brittney Ferguson: We were all shocked. I mean, my mom had always warned me that if there was something wrong, that it could lead to bigger processes. If there was a really serious problem, I could have an ileostomy, which was one of my bigger fears, but basically everybody was just shocked. There's probably some devastation, we do have history of other cancers in our family, so we're not unfamiliar with how it can go well and also how it can go horribly wrong. So, a lot of shock and surprise, for sure.

Dr. Scott Steele: So, I'd like to just interject here to the listeners and make sure a couple of things, is that you don't necessarily have to have a family history of colon or rectal cancer. Obviously, if you do, it can put you at a higher risk and it can also change your screening colonoscopy needs and drop it even further. In this case, obviously what we would classify this is a diagnostic colonoscopy because this is something that you're having symptoms on and we don't want to ignore about it. Even if you're young, we want to make sure, we've heard this time and time again, about how something can come up. Something that can be completely treatable and benign can be treatable and have more devastating consequences. So we want to make sure that we listen to our bodies, we get that explored and to understand your history and understand what's going on with your body. So you get the news, you go through with your family, you're going to fight it head on. How did it come to the point that you decided to come on up here to Cleveland?

Brittney Ferguson: Well, I fully believe that God had led me through this health journey and it started off with getting connected with Dr. Holinga with the Ohio Gastroenterology Group. She just immediately was compassionate and encouraging, but also very straightforward that we needed to do something. It was in the height of COVID but even though that was happening, I knew that of didn't have a choice. My choice was either deal with it, or let the fear of COVID and whatever else may lie ahead, determine what happens. And I didn't want to do that.

So, she was an associate with you in a professional standing, and she wanted to provide me with the most aggressive approach and you came super highly recommended. So, she gave me a personal and direct referral to you, which I will forever be grateful for.

Dr. Scott Steele: Well, we sure were glad to get you up here. And so for all the listeners, so we had went through a lot of the treatment options, I think it's important to understand that there's a lot of different types of cancers out there and when we talk about rectal cancer and we've had other episodes on rectal cancer, but remember certain rectal cancers, depending on the stage and getting MRIs and CT scans and endoscopy to figure out exactly where it is, and different tumors may require chemotherapy and radiation therapy. Other tumors might require surgery upfront, followed by chemotherapy. Other ones might need chemotherapy and then chemoradiation therapy, and other ones might need chemoradiation therapy, and then chemotherapy and then surgery.

Some people may not need surgery alone. So, it really is that process of individualizing the therapy for that particular patient, for that particular tumor, including how high the tumor is in the rectum to make sure that we can get great margins around if their surgery ... or does it respond to chemoradiation therapy, if it's one that qualifies for it. So, it's imperative to understand if you're listening to this and you've been recently diagnosed, or if you have a family member that has, or you're even wondering exactly how do we deal with rectal cancer, that the principles are all there, but there is some variation depending on the degree of which the tumor has either spread or not spread, the degree of which it is still there and baited locally or a spread to the lymph nodes and to how we access them.

So, in this particular instance, the upfront radiation therapy was in a process and we had a big process to go to. Would this be something that on some of the imaging or many of the imaging, you can tell if the tumor has spread to the lymph nodes or not, and in other ones you can't really see because there's a certain percentage of patients that may have microscopic disease only in the lymph nodes, that may not be to the point where the lymph nodes have quite yet changed. So, in Brittney's case, we were able to get the staging and couldn't really see much of a residual tumor and couldn't really see any particular lymph nodes that were there.

So, we came up with a long, thought out process to say, how do we want to proceed from here? Do we want to be aggressive and take that rectum out, which can be a major surgery and like you said, have some complications that could come up with it? Or do we want to follow you and do this? Or do we want to maybe go outside the box and talk about chemotherapy? So, walk us through your decision-making process about how you and your family decided to ultimately proceed with treatment.

Brittney Ferguson: You were very upfront, direct and informative of what our choices were. You talked about how we could monitor things, but take no immediate action. Do a small resection of the area where the cancer was found, or the larger surgery, the low anterior resection, with a placement of the temporary ileostomy, where you could get more lymph nodes. And depending upon that, whether or not we did radiation or chemo. So, I know you were on board for option three because you like to be more proactive and cautious in terms of cancer. So, I appreciated that because I've never had a surgery prior to this. So any surgery, big or small was scary for me.

Honestly, option three was my last choice at the time, because it seemed very dramatic and drastic to take out a large section, get lymph nodes, like I said earlier the ileostomy was the last thing I wanted to have, but we ended up speaking with a family friend, who's an oncologist and he actually helped us to realize that the larger, more aggressive surgery, based on my understanding, was actually the standard method of treating colorectal cancer. It's also been around the longest, so knowing that gave me comfort because obviously I would imagine the success rates are better and it's a less risky surgery, even though it's the more aggressive surgery. So, in the end, we wound up going with the low anterior resection with the temporary ileostomy, in hopes of having the best chance of finding any lingering cancer and praise the Lord you did, and you found it and that led us onto chemo and everything that happened afterwards.

Dr. Scott Steele: Yeah. So that's, again, going back to a very difficult decision-making and I'm sure on the ... I can still remember on the morning of surgery when you're hopeful and positive, but there's still that, "Oh my God, I'm going in for surgery," type feeling. "This surgery and I can't believe I'm here. And are we doing the right decision? And are we doing all that?" And it's just that trust and fear and angst and get it over with and all those different emotions. And then you woke up from surgery and then, yeah, sense of relief or just the first day of the battle of getting through? And can you talk a little bit about here you are and you're in your mid 30s and you got two kids at home and all of a sudden now you have to deal with, regardless of not, if it is a temporary ileostomy or not.

For those that ... listeners out there, an ileostomy is again, when we bring the loop of small intestine called the ileum up to the skin and you have to wear a bag. Most people know it as a bag or a stoma and colostomy is when we bring up the colon and her case, we were able to reconnect her colon to her residual rectum, and then just temporarily divert the stool away with an ileostomy, while that other one heals in. But what was that like? What were your emotions in going through there and how did you cope with that?

Brittney Ferguson: I wasn't sure. So for me, I honestly was totally freaked out because I'm a very private person. And now this is very private part of my body, and this normal function that typically happens in a private way, was very much public. I mean, this system itself has come a long way as far as the devices that you use. So that was better, but still not super discreet, so that was tough. And I wasn't sure how my girls would handle it, but they wound up being rock stars. They named it and asked questions. I think that just having an open dialogue with them helped. It helped me, they normalized it for me, and I didn't feel so self-conscious then, but it was a definite mental battle in terms of that, because it's always present.

I mean, whether you have your shirt down, you can still see it, whether you're changing it or whatever you have to do to maintain it, it's always a little bit of a reminder of what you're going through, what you've gone through and what lies ahead. But I wouldn't change it. I'm grateful for the process that I went through and where it's led me to today.

Dr. Scott Steele: And as she alluded to, fortunately or unfortunately, however you want to describe in these particular cases, which is always the trick with cancer, found residual cancer there, and then ultimately took you to your next steps. Can you walk people through the next steps of your treatment phase?

Brittney Ferguson: So, I was given two different types of options for chemo. I could do a more aggressive, shorter term treatment phase with chemotherapy, where it was it over a period of three months but with four cycles, or I could do a longer session, a little less harsh on the body, but over a six month period of time. While I wasn't in denial of what was happening, I didn't want it to last any longer than it had to. So, we decided that the more aggressive, shorter timeframe would be best for our family.

So I began chemotherapy in January, and my first two sessions were pretty rough, the side effects from it. I was pretty nauseated. I had cold sensations where my fingertips would tingle and hurt if I touched cold objects and it was in winter, so the air itself actually sent me to the emergency room because I had a reaction where I felt like I couldn't breathe and they weren't sure if it was due to the cold air or an allergic reaction to the chemo. But my team was amazing, I went through the Cleveland Clinic for my oncology as well. They listened to me very well, they heard what I was saying, made adjustments to my treatments. And my last two treatments went really, really well.

I do still have lingering effects from it. I still have neuropathy and my mental clarity and sharpness is still building. I wouldn't volunteer to go through it, of course, but it went so much better than I anticipated that it would.

Dr. Scott Steele: Well, you got through and you're a trooper and your family was there alongside of the way. And then it ultimately came time that you got to get rid of ... and I don't remember what name did you name your ileostomy? You got a chance to get rid of it.

Brittney Ferguson: The name of my ileostomy, which is very appropriate, I think is Tooty Fruity.

Dr. Scott Steele: Well, that's fantastic. So, what was it like to then finally go through that next surgery? Was it ... it go okay? Were you finding, "I'm through it," and how are you doing now?

Brittney Ferguson: Honestly, I'm doing really well. I'm still processing that we even went through what we did, a little bit of it felt like an out-of-body experience. I remember that initial call with Dr. Holinga, I felt like I was watching somebody else's life through the process. Same thing, now that we're through it, it really doesn't feel like it happened. I think it's because things have gone so well post-treatment, post-surgery, so much better than I ever anticipated. So, getting back to the normal way of life has come so much quicker, that it just almost seems like it didn't happen.

I do still have some restrictions in terms of I can't lift my kids yet. That's been one of the harder parts for me and the girls. We're a very close-knit family. It's just me and the girls, in terms of we have no boys or anything like that, so we're very, very close. So, not being able to pick them up has been tough. I do still have some healing internally where the ileostomy was, but I really think that's probably just things working itself out re-healing from the surgery, but all in all, it was way better than I anticipated.

I had read, which is a dangerous thing, but I had read leading up to it a little bit of what to expect post-reversal. I can honestly say that it was just so much better than even what the most positive stories shared on the websites. I haven't had any control issues. I've been able to be able to maintain some normalcy, go out and about and do things. It hasn't limited me, beyond anything I wasn't already experiencing.

Dr. Scott Steele: That's fantastic. So what tips do you have for others who are either just getting diagnosed, or who are getting treated for colorectal cancer, for all of our listeners out there?

Brittney Ferguson: Well, I have several. First of all, I think that no matter where you are in the process, you should be proactive in doing your own research. Obviously, the medical team with Cleveland Clinic was amazing. Dr. Holinga, she was amazing, but don't be afraid to do your own research, but also don't focus on the worst or the best case scenarios. Prepare for the worst, but hope for the best.

Also, I think it's important that you would allow yourself to feel your true emotions, but to choose that positivity over any fear, or anger, or sadness that you may have. Watching my husband and my mom go through this journey with me, my mom took time off to help take care of me and my family during this time, and just watching what the two of them went through, it's important you give yourself and also the people around you, grace, because everybody handles it differently, but it definitely affects everybody. I think it's important too, to find a positive outlet. Mine was my faith, my family, and especially my girls. Find good caregivers, that's super important. Somebody who can be positive and encouraging, but yet also allow you to feel the rawness that you feel at the time with your emotions. Some days you'll be positive, other days, you just want to talk about how terrible things might be at the time, but just find good support people. And with COVID, we were really limited to too much outside interaction, but my family, my dad, my sister, different friends, and a lot of different churches were amazing at seeing us through.

Also, I would say, ask questions and be clear about how you're feeling with your healthcare team. I don't think there's anything too big or too small to share with your team to make sure that they can give you the best tailored care to your situation. Then finally, I just want to share the title of a book that I held to because it's so true, but the title of it is from Christian author, Joyce Meyer, and it's Do It Afraid: Embracing Courage In The Face Of Fear. So, even though I was afraid, I knew that I didn't have a choice but to move forward. And even though you're scared, you just got to keep moving.

Dr. Scott Steele: Well, those are fantastic words of wisdom. I guess my take home message is if you go through anything, for our listeners out there, I would say that number one, the importance of listening to your body and not ignoring symptoms. So many people out there, they experienced rectal bleeding or something changes in their stool and they fear, "It might be bad so I'm just going to ignore it and just see it as is," but you can get to this, get it early, get it taken care of and get it cured and be able to go from there.

So, never be afraid of bringing something up to your primary care doc or to a gastrologist, or if you're not getting the answers, I would echo just what she said, to make sure you get the answers that you would need. So, critically important because you got to understand that as you go through this, there may be some unexpected findings and there may be some unexpected results and by staying on top of that and going along a treatment pathway, you can come out the other side, even in places where you are scared and you don't think you'd have the strength to it.

Again, the other thing that I don't think our listeners can see this, it's only a audio podcast, but we're humans in addition to doctors, and there's also patients that touch in different ways and Brittney and her whole family were fantastic, making us and our team bracelets, just all the special touches. So, I'm so glad that I had the opportunity to take part in a very small way in your care. I'm so glad that you're doing better. I think the other aspect is, is that when you go through things like this, understand that it is ... another thing that we talked about is making sure you don't have a familial type of a genetic predisposition and get tested for that to make sure, because in this case with the two girls, and not only if you don't have it, they still want to get screened early. So, understand that it can affect more than just you.

We always, Brittney, like to wind up with a couple of quick hitters, with all our guests, get to know you a little bit better. So number one, what's your favorite food?

Brittney Ferguson: Oh man, I love steak.

Dr. Scott Steele: Fantastic.

Brittney Ferguson: It's one of my favorites.

Dr. Scott Steele: So steak eaters, I have to ask this, are you a plain, A1 sauce, Heinz 57, just salt and pepper, vinegar? What's the topping of choice there on a steak?

Brittney Ferguson: Oh, it's definitely all about the seasoning. I would say grilled with salt and pepper is probably the best, but ...

Dr. Scott Steele: Very, very good. Very good. If we were to turn on your iPhone and go to your iTunes, or if you're a Android user, what's on the playlist there?

Brittney Ferguson: Oh, I'm a country girl. I'm always into The Judds. They're a bit of, probably, classic country, but they're definitely on the top of my list.

Dr. Scott Steele: And what is your favorite sport to either watch and/or play?

Brittney Ferguson: Volleyball. Definitely volleyball. Still love it to this day.

Dr. Scott Steele: That's fantastic. What's your Netflix or any one of these other type of recommendations for people that are out there during these times?

Brittney Ferguson: Well, I'm currently on a series called Heartland. It's about a family, that's very based around horses. Horses are another big passion of mine, though I unfortunately don't own any, and also a series called McLeod's Daughters. It was fantastic, definitely helped me in those times where you couldn't really do too much to go out and about, but it took your mind off of where you were.

Dr. Scott Steele: Fantastic, I'll have to look for both of those. Then finally, I normally ask people what they like about Cleveland, but I will ask you, tell us a little bit about what you like about your hometown?

Brittney Ferguson: In major contrast to Cleveland, I'm out in the country, so we have a lot of tractor traffic, Amish traffic, familiar passers-by, so I like the close-knit community and knowing who's coming and going, and just the familiar faces you can see. We have a wraparound porch on our house. So, it lends itself really well to being able to enjoy it, despite whatever the weather might be.

Dr. Scott Steele: Well, that's fantastic. So great to have you on. So, to learn more about colorectal cancer or to schedule a colonoscopy, please visit clevelandclinic.org/colonoscopy. That's clevelandclinic.org/colonoscopy. And to speak with a specialist in the Cleveland Clinic's Digestive Disease & Surgery Institute, please call 216.444.7000. That's 216.444.7000.

And finally, please remember it's important for you and your family to continue to receive medical care and to stay up-to-date on your health screenings. Rest assured, here at the Cleveland Clinic, we're taking all necessary precautions to sterilize our facilities and protect our patients and caregivers.

Brittney, thank you so much for joining us and more importantly, thank you so much for just being the person that you are, the support system that you have and that you give to others. I hope that everyone out there listening to this will be encouraged by your message. So, thank you. Thank you very much.

Brittney Ferguson: Thank you so much. I just really appreciate the opportunity to even give back in the slightest way. Even if it helps one person, I'm thrilled and honored to have been able to be a part of that.

Dr. Scott Steele: That wraps things up here at Cleveland Clinic. Until next time, thanks for listening to Butts & Guts.