← Duologue with Leslie Heaney
Duologue with Leslie Heaney
Colorectal Cancer: A Conversation feat. Dr. Andrea Cercek and Kelly Spill Bonito
00:59:25
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- [00:00]
Leslie Heaney
Foreign Hi, this is Leslie, and you're listening to the interview with Leslie Heaney. Colorectal cancer, the disease that claimed the life of Black Panther actor Chadwick Boseman at age 43, was once considered an old person's illness, but unfortunately, it no longer is. The National Cancer Institute says early onset colorectal cancer is now the number one cause of cancer death in people 20 to 49 years old. So why are Gen Xers, Millennials, and Gen Zers developing a disease that they never would have dreamed of getting not so long ago? To help answer this question, I'm so honored to be joined by Dr. Andrea Surcik, a board certified medical oncologist who specializes in the treatment of patients with colorectal cancer at Memorial Sloan Kettering Cancer Center. Dr. Surcik is also the founder and co director of the center for Young Onset Colorectal and Gastrointestinal Cancer. This clinic, which is dedicated to serving the specific needs of young people under 50 who have these cancers, is the first clinic of its kind in the world. In this episode, I talk with Dr. Surcic about the possible causes for this rise in colorectal cancer among young people, what we can do to reduce our risk of developing colorectal cancer, and about the exciting treatment options that are being developed at Sloan Kettering to cure colorectal cancer without the often crippling side effects of radiation, chemo, and surgery. One of the beneficiaries of Dr. Surcik's research and treatment is her former patient, Kelly Bonito, who also joins us in this conversation. Kelly was just 29 with an 8 month old baby when she was diagnosed with colorectal cancer. Thanks to the immunotherapy treatment that Dr. Surcik's team discovered, Kelly is now cancer free, did not have to have chemo, radiation, or surgery, and has gone on to live a full and healthy life. In this episode, you're going to learn everything that you need to know about colorectal cancer and you will also get to hear one woman's inspiring story. So with that, here's Dr. Surcek and Kelly Benito. Dr. Surcik, Kelly, it is so nice to see you both. Thank you so much for joining. This is really exciting to be speaking with both of you about this topic. I thought before we started it might be helpful for listeners, Dr. Surcich, for you to sort of set the table a bit about the rates of colorectal cancer in the US today.
- [02:28]
Dr. Andrea Surcik
So it's estimated that about 150,000 individuals will be diagnosed with colorectal cancer this year, and that about 52,000 will die of the disease. What's even more striking than that is that the rates of young individuals. So individuals under the age of 55 with colorectal cancer are rising. They've been rising steadily since the mid-1990s. So much so that actually the incidents doubled from 1995 of 11% to actually 20% in 2019. And we're seeing this continuous, slow and steady rise in young individuals for unclear reasons.
- [03:09]
Leslie Heaney
And I think, Kelly, that's where I want to turn it over to you, because you are one of those people, right? You're part of that statistic of a young person who was diagnosed with colorectal cancer. Will you tell us a little bit about your story?
- [03:26]
Kelly Bonito
Yes, absolutely. So I was diagnosed at age 28. It was soon after I gave birth to my son. He was eight months old when I had found out. And I was diagnosed with stage three colorectal cancer. @ the time, I was actually living in California, and I came back home to New Jersey to get closer to family, to help with our newborn. And thank God I did, because I was able to see, basically, Dr. Sara Sik @ Memorial Sloan Kettering.
- [03:58]
Leslie Heaney
That's amazing. So you're out in California, you have this young baby, and all of us are mothers on this zoom. So you're exhausted. You don't know which end is up. And what kind of symptoms were you experiencing that led you to go get yourself checked out and diagnosed?
- [04:15]
Kelly Bonito
Yeah, so actually, when I was eight months pregnant, I was seeing blood in my stool, and I was also constipated as well. And I brought up to my doctor, and she had told me, you're about to be a mom. And these are the things that happen right before you're about to be a mom. Things are changing. And of course, I believe that I've had another baby since then, and I would believe it. Again, I am not a doctor, so I don't know what's going on. And soon after I had my son, I was a new mom. So I thought those feelings were still true. And I had saw a couple doctors after that as well in concerns of having blood in my stool, still constipation. And at that point, my symptoms did not progress. So that's exactly what I was dealing with for a few months at that point. And I kept getting dismissed from doctors just telling me that I most likely had internal hemorrhoids. I had one doctor tell me that he was 99.9% sure that I had internal hemorrhoids. And that was not the case. I kept pushing. I kept talking to my friends and family how I wasn't feeling well. And my symptoms got worse. I became not hungry.
- [05:28]
Leslie Heaney
Were you feeling fatigued or what were the other symptoms besides the.
- [05:31]
Kelly Bonito
At that point, it's funny, because feeling fatigued, I mean, as a new mom, you're tired, right?
- [05:36]
Dr. Andrea Surcik
So.
- [05:37]
Kelly Bonito
So it's hard to tell that difference. But I started to lose my appetite. I would be extremely hungry. I would take a bite of something and I would no longer be hungry. This led to me losing about 7 to 8 pounds. And I weigh about 110 pounds, so that was a lot for me. And there was one morning that I woke up, I went to the bathroom, and you would have thought that it was that time of month, and it was not. And that's where it became extremely alarming.
- [06:02]
Leslie Heaney
So then you went, so who were you seeing when you said you were seeing these doctors? You were going to your OB gyn, You're going to a general practitioner? Both.
- [06:11]
Kelly Bonito
I saw OB GYN twice. I went as a postpartum checkup. I went again, as I call it, my second postpartum checkup with these concerns. I then went to a primary doctor. Those were on the West Coast. I came to New Jersey. I tried to see other doctor. I had problems with my health insurance because I had moved, so I wasn't working at the time. It was very hard to see a doctor. So I went to a family clinic. Nothing really happened from there. I went to the hospital. Nothing really happened from there. It was all the same answers of most likely having internal hemorrhoids, lay out the spicy foods. A lot of times I'm walking into those appointments with my newborn as well. So it was a straight look at the baby, look at me. I'm young. Then finally, I had one of my friend's mom say, I think this doctor takes your insurance. Go check her out. And I did. And I was a primary doctor. I went in with pictures of what was going on in the bathroom, and she said, you need a colonoscopy, don't you? I was like, yes, I needed one, like two weeks ago. She was like, no problem. I'll write you that referral. Which is exactly what I need. So I went bent to a GI that next week I was able to get a colonoscopy, actually that next day, because of the time of day I was there. And I already didn't eat much that day. And that was the day that I found out that I had a tumor that was in January 17th of 2019.
- [07:32]
Leslie Heaney
What was that like? Because I've had colonoscopies, and they come. You know, the doctor will come in and say, I found polyps, or I. You know, they'll describe what they saw. Did the doctor come in and say, I saw a mass or I saw a. Did they at that point, just know it was. It was cancer, or did they want to have you have it surgically removed to have it biopsied? What was the.
- [07:52]
Kelly Bonito
He immediately told me that there was a tumor there, but he couldn't tell me if it was cancerous or not because they had to do biopsies. So I went home crying that day, just scared. I knew in my gut that it wasn't good just because of how I've been feeling, how skinny I had looked from all the weight that I'd lost, how much I haven't been feeling well every day. And I had to wait about two weeks to find out that it actually was cancerous.
- [08:20]
Leslie Heaney
And then was your next step, because you were in New Jersey at that time, to go directly to Sloan Kettering or.
- [08:27]
Kelly Bonito
So my next step was I actually had a fiance at the time, so my next step was we need to get married, like, now, basically, for health insurance. He's a teacher, and it was the right move for us. So we were pushing for a marriage at that point. And I have a very, very supportive family, very supportive mom. She's been through it, been with me through this whole entire journey. And she asked a lot of friends, did a lot of research on what to do next. And the plan was to see three hospitals, three cancer hospitals. And really, it was about comfort, what we were going to hear, the response from the doctor, what the plan was going to be, and if we felt it was right, and we ended up going to Memorial Soul and Kettering. That was our first stop shop. And it crossed off all the things that we were looking for. However, my treatment at the time that I was told it was supposed to be chemotherapy, oral chemo, radiation, and then surgery. And that would have left me to having a colostomy back for the rest of my life. And I was also told that I most likely would never be able to carry a baby again.
- [09:31]
Leslie Heaney
Oh, my gosh, I can't imagine. And you're, what, you're 29 at this. @ this point, or. And you have.
- [09:36]
Kelly Bonito
I was 28.
- [09:37]
Dr. Andrea Surcik
So still.
- [09:38]
Leslie Heaney
So then how did you find the incredible Dr. Sircek? How did you two get connected and what. What happened next?
- [09:44]
Kelly Bonito
So after that, it was to be quite Honest with you, a blur. I then went the process of freezing eggs to create embryos, because at that point we thought we would have to go through having a surrogate. And then it was multiple scans from there and just starting, ready to start treatment. And my treatment plan was about to start. Luckily for me, there's a hub of moral Sloan Kettering in Middletown, New Jersey, so I didn't have to go back and forth to New York. Very lucky and grateful for that. And at that point, I was at my appointment just to set the treatment date, and I had a research nurse come in and she said, you know, we might have another opportunity for you. Would you like to hear it? And my mom and I were like, yeah, absolutely. So she laid out everything that they knew at the time for the clinical trial. And she had told me that if I were to go on it, I would be the fourth person in the country to go on it. They don't really know a lot of research besides what they had already seen with the three other people prior. And at that time, I didn't know much about what was going on with those three people. Mom and I looked at each other and we said, what do we have to lose? So we opted for it. And then at that point, I started my first treatment at Memorial Sloan Kettering. And it was a 30 minute treatment. I did have a port and I didn't have any side effects. By my fourth treatment, my tumor had halfway disappeared. And by my ninth treatment, my tumor had completely disappeared. And I met Dr. Saracik soon after that.
- [11:30]
Leslie Heaney
You said the research assistant came in to talk to you about the opportunity was that she was explaining to you that if these other three patients had had such success with this trial that they didn't need the surgery that you were talking about earlier. Is that why it was so compelling to you, or what was it about it that was so that you said, we're definitely going to do this versus the original plan that you had?
- [11:53]
Kelly Bonito
To be quite honest with you, these symptoms, the side effects, sounded a lot less harsh than the original treatment plan. A. That was the only thing that we had going for us at that point that we were hoping for.
- [12:06]
Leslie Heaney
So, Dr. Surcik, I'm assuming these other three patients might have been yours since it was your clinical trial. Tell us about this. You've spoken at an event that I was at about it, and it's just. It's an absolutely miraculous what this course of treatment has been able to do for people. And Kelly, of course, is one of them. Will you speak A little bit about it and what that clinical trial is about and the results that you've seen.
- [12:31]
Dr. Andrea Surcik
Yeah, absolutely. So Kelly was eligible for this study because her tumor had a mutation or a change called mismatch repair deficiency. And basically what that means is that the tumor sort of had a lot of these flags or a lot of proteins that made her immune system already interested in attacking the tumor. That's about 5% of all patients with early stage rectal cancer that have this mutation in the tumor. And it could be either genetic or it can happen randomly, which is what happened in Kelly's case. We knew because of that change in her tumor that we saw in pathology that she was eligible for this study. And at the time, you know, I have to say, I mean, Kelly was incredibly brave because we didn't know these responses. We know now. And, you know, after her and several other patients, when we started seeing these amazing responses over and over, then it was a much easier conversation to have with patients about the trial because we said, look, so far, everybody, you know, is incredibly sensitive to this. The tumors are just disappearing. But for Kelly, as she said, we didn't know that. We didn't even the patients that were before her were just a couple months before her. So we didn't really know, you know, how sensitive these tumors would be. But, you know, she took a chance, and it was incredibly, incredibly brave and amazing, really, that she did that. So thank you for that, Kelly. Obviously, the outcome was incredible. But that's, you know, the process with clinical trials is that we don't always know. And what Kelly mentioned in terms of the standard treatment is what we offer everybody else, the other 95% of our patients, and, you know, even her story, from symptoms to diagnosis, unfortunately, we hear it over and over in our young patients. They're dismissed. They're too busy to bring it to anyone's attention. Maybe they're told to come back and they don't come back, or they're told to follow up with a different physician. You know, just like Kelly did show up to the emergency room. Oh, it's a hemorrhoid. You're okay. You're not bleeding that much. Your hemoglobin is stable, stable for months and months and months until they're finally diagnosed. And so, you know, it's a separate issue. Almost just raising awareness is so incredibly important. But in Kelly's case, with the trial, I mean, I think this was, you know, an opportunity. We wanted to do it because we knew that in advanced disease, these types of tumors that are Nismetropyr deficient, or what's called msi, were very sensitive to immunotherapy, but that was in the metastatic setting. Patients had good responses. But what we wanted to see is how well could we treat the tumor with just immunotherapy to start? Could we get away with using just immunotherapy to replace all the standard treatments that Kelly would have otherwise needed, including chemo, the chemo radiation, and the surgery? And that's what we were able to do for Kelly and many other patients as well. So it's been really amazing, so exciting.
- [15:24]
Leslie Heaney
And so when you start out with a patient, it sounds like you do kind of test the tumor, or in this case, you did with her, to see if she would be eligible for the trial even before she was approached by the research assistant.
- [15:37]
Dr. Andrea Surcik
Yes, exactly. So in cancer in general, and especially in colorectal cancer, there are certain tests that we do routinely on tumors because they matter for treatment decisions. So for advanced disease, everybody was getting this testing called mismetroper deficient testing. In early stage disease, we do it as well in colorectal cancer. But that's because many of these tumors that are mismatch deficient are associated with the hereditary syndrome called lymph syndrome. So that's been a standard to test. Irrespective of this trial, we were testing everyone. And so Kelly had that test on autopilot, and when it came back positive, prior to the study, we wouldn't have done anything different except centered in genetics to get tested to see if she had lymph syndrome. But again, not everyone does. Some people, it occurs randomly. But now that we had this trial, we knew that she was eligible for the trial. And so there's several, what we call biomarkers that we can test this way, either in advanced stage 4 disease or also in early stage disease for clinical trials.
- [16:39]
Leslie Heaney
So exciting. And I know, you know, I want to talk a lot about sort of this uptick that you're seeing in younger patients like Kelly, because Kelly, in your experience, you're talking about, you keep going to the doctor, and of course, they're looking at the most obvious reason for your symptoms, right? It's that you're a new mother. It could be hemorrhoids, it could be all these things that would be logical, right? And not thinking about colorectal cancer as being one of the possibilities of what's causing these symptoms. But what are the kind of the other symptoms beside, or are there no other. Did we hit all of them? Dr. Sircik that people should be looking for, younger patients should be looking for. Beyond the fatigue and the rectal bleeding.
- [17:26]
Dr. Andrea Surcik
No, I think most commonly these tumors occur in young individuals, occur on what we call the left side or the descending colon or the rectum, just like Kelly's, for reasons that we don't know, this is actually occurring all over the world. So when the tumor is in that part of the large intestine, sort of towards the end, before it exits through the anus, the stool exits. The stool is very formed already. It's not watery. The water is reabsorbed. So most commonly, patients develop rectal bleeding, bright red blood, just like Kelly mentioned, pain with bowel movements, or really bad constipation and then abdominal pain. But those are not the only symptoms. So. So weight loss can happen. You know, fatigue, that's kind of unexplained, sort of more extreme fatigue, lack of appetite, like anorexia, all of these issues can occur. So what we really say is any persistent symptoms that don't that last more than a few days should be checked out. It's very possible that it's, you know, something else, that maybe it's just a stomach bug, but if it's ongoing like this, it really requires medical attention.
- [18:35]
Leslie Heaney
Well, it sounds like, I mean, you had started getting your symptoms, Kelly, while you were pregnant. So from the time of your first symptom or the first symptom that you really noticed, Right. Whether it was rectal bleeding or the constipation, it was almost a year, Am I right in my math, before you were diagnosed?
- [18:54]
Kelly Bonito
Yeah, pretty much. It was probably a little bit under a year. Yeah.
- [18:58]
Leslie Heaney
So we talked about, you know, just sort of this. This trend of young, younger people developing colorectal cancer. I know this is a big focus of your research, Dr. Surcik, and the research of others in this space. What are you attributing this rise to or what areas are you investigating?
- [19:16]
Dr. Andrea Surcik
So we believe that this is something environmental, but what it is, no one knows. And every area that you can imagine is being investigated, from changes in our lifestyle, being more sedentary, less active, to things that we're exposed to in the environment, from microplastics, hormones in our diet and the animal meat that we eat, to things that we might be ingesting, such as medications, including antibiotics, and how these changes affect our organs, or what's called the microbiome, which is the intestinal flora that we coexist with, because we know that there are these good bacteria and bad bacteria and bacteria that can lead to more inflammation that could potentially lead to cancer formation. So all of these areas are being investigated, you know, throughout the world really at this point.
- [20:10]
Leslie Heaney
The thing about the diet piece, which makes great sense, right, that the Americans, you know, eating a lot of processed food, not having as much of a healthy diet, that that would have an effect on the microbiome. And I know that's where there's a lot of that research looking at the connection between microbiome and developing cancer. But are other parts of the world seeing this rise at the same rate as we are here in the United States? And how are they parsing that out?
- [20:34]
Dr. Andrea Surcik
That's the scariest piece of all, is that they are. And initially the data is really coming from countries with high socioeconomic backgrounds, but now it is really every country that has a registry or has the capability of putting together a registry is noticing this. And it's completely a worldwide phenomenon from Europe, Australia, Asia, Latin America, Mexico, as well as Africa. I mean, it's. It's really happening all over the world. And so it's. That's why we believe that it's some, you know, environmental exposure that. That is throughout and not necessarily associated with a particular diet or a particular, you know, pesticide that's only used in a certain area or something like that, but must be something much more global.
- [21:20]
Leslie Heaney
Global and universal. Which is why the microplastics piece is. Is something that does affect the whole world.
- [21:25]
Dr. Andrea Surcik
Right.
- [21:26]
Leslie Heaney
Can we talk a little bit about risk factors for people for developing colon cancer who should be. And I guess we're just talking about the fact it could be anyone, right? It could be somebody who's a healthy young woman like Kelly. But are there genetic factors, Are there other dietary factors or things that people should avoid to sort of lessen their chance of developing colorectal cancer?
- [21:47]
Dr. Andrea Surcik
Yeah, so absolutely. You know, traditionally, the risk factors that sort of were studied and applied to what we call average onset patients or patients in their 60s, 70s and 80s, or things like diets high in red meat, smoking, alcohol consumption, obesity. But that doesn't really apply when someone is 27 and fit or, you know, and they're see teenagers now. And it's rare, but it. But it's happening. And so we. You really can't explain that with any kind of lifestyle choice, you know, that the individual makes. And when we look at sort of the. Obesity has been rising in the United States, that's well documented, but kind of the. The slopes of the curve sort of run in parallel. And so it's not that we can clearly say obesity came first and then colorectal cancer in our young patients. And then, moreover, when we look at our young patients and we ask them, we have these extensive risk factor questionnaires at our center as well as others, they were never obese, they were active. It just. They don't quite fit any of those risk factors. But an important point is this hereditary risk factor and family history, because we do see, see a higher rate of a family history, but that's not necessarily associated with a hereditary predisposition. So when we look at their testing, their genetic testing, they're not, you know, it's not like we found a new genetic mutation or that we're seeing more of these young patients having a genetic predisposition. What's rising are really the random cases or what we call the sporadic cases.
- [23:16]
Leslie Heaney
Is there a gene, though, that you've been able to identify like there is with breast cancer, with the BRCA gene, or there. It. It's more just based on family history. When you're talking the genetic risk factor.
- [23:26]
Dr. Andrea Surcik
In general in colorectal cancer, there definitely are genes that predispose that have been known. And so younger patients, you know, there's a, There's a larger proportion of younger patients with colorectal cancer that have lynch syndrome or familial apollyposis, what's called fap. So there are certain, definitely certain genetic mutations, just like the breast cancer BRCA you associated with breast cancer, that are associated with colorectal cancer for sure. So all young patients need to be tested. But the issue really is that the chunk of that pie where we don't find any genetic mutation is the part that's rising, if that makes sense.
- [24:04]
Leslie Heaney
Yes.
- [24:04]
Dr. Andrea Surcik
The patients where we don't find any genes, nothing that they've inherited or potentially passed down, it seems completely random. It seems just like they were 70 years old, but they're 30, 35 or 28, and we don't know why.
- [24:19]
Leslie Heaney
Kelly, you're part of that group too, right? You're the part of that piece of the pie that didn't have any, any risk factor that you could identify. I mean, you're healthy, you're very trim. I mean, describing it, you know, I don't think I've seen 120 pounds since, or whatever you said you were since. You know, I mean, you're very trim, you're very fit. You're just a very healthy young woman who would not, you know, you would, would not think would be at risk of developing colorectal cancer. So that is to your point, Dr. Sircik. So incredibly alarming. So, Kelly, you talked about, you know, you. You getting. They talked to you about your treatment. And the surgery was because Kelly's tumor was reacting so well and shrinking in response to her clinical trial protocol that she ended up not having to have the surgery. Or did you also have surgery as well?
- [25:09]
Kelly Bonito
I did not have surgery. I also did not have radiation.
- [25:12]
Leslie Heaney
That's amazing.
- [25:13]
Kelly Bonito
It is.
- [25:15]
Leslie Heaney
That is so amazing. I mean, so what? So, Dr. Sircik, is what Kelly was describing sort of surgery and then chemotherapy or radiation? Is that a common treatment protocol? I know there are a lot of side effects. Kelly talked about one, the doctor telling her she probably wouldn't be able to carry children. What does that look like?
- [25:33]
Dr. Andrea Surcik
Yeah. So the typical treatment for rectal cancer, because the rectum is located in the pelvis, it's the end of the large intestine. The treatment is to do chemotherapy and chemo, Radiation first, and then surgery. So that's different than colon cancer, which is outside of the pelvis in the belly, where we do surgery, and then we look under the microscope to see if patients need chemo or don't need chemo, depending on how advanced, you know, what stage the tumor is pathologically under the microscope. For rectal cancer, we stage it with an mri and we say, okay, this is stage two or three. Everybody gets the chemo, radiation, the chemo, and then the surgery. And that's the standard protocol. It was for all patients. Now, patients that are mismatch repair deficient because of the trial can get immunotherapy. But prior to this, exactly as Kelly was described, that was appropriate care with curative intent, meaning this is how we get rid of it. But because of the tumor being in the pelvis, you do need the radiation, and you do need the surgery. And so for tumors that are low down, where they're not able to resect the tumor and reattach the colon, about 30% of people with rectal cancer need a permanent colostomy or a permanent bag, so are not able to be reattached. And then this is true for men and women when the tumor is. Is in the rectum. Radiation is part of the treatment. And radiation targets the tumor, but it also affects the surrounding structure. So the vagina is in the way, the uterus is in the way. In case of young women, of course, the ovaries are in the way. And so radiation, if everything is left in the pelvis, leads to im immediate menopause, and then it scars the uterus and so women can't carry a baby to term because the uterus is not able to do its normal function, which is essentially swell with blood and grow, you know, with. With the fetus. And so those are the issues, as is early menopause and infertility, particularly in women, but also in men with radiation and surgery can lead to infertility as well.
- [27:37]
Leslie Heaney
And there's so many other lifestyle effects. Right. In terms of incontinence, I think was one and sexual dysfunction. I remember you mentioning that when you were speaking.
- [27:47]
Dr. Andrea Surcik
Absolutely. Because of all the, you know, vital sexual organs that are in the way for both men and women. And for women, the vaginal canal is affected with the radiation. It leads to dryness and scarring potentially. And so the tumors are eradicated. We can cure patients, but there are a lot of toxicities from our treatment and survivorship.
- [28:12]
Leslie Heaney
So, Kelly, with your immunotherapy treatment, were your side effects mild besides sort of, you know, fatigue and things like that? Or did you.
- [28:22]
Kelly Bonito
It's so funny, again, as a new mom going through treatments, I couldn't tell a difference if I was receiving fatigue from being a new mom or from immunotherapy. But besides that, I did not have any other side effects.
- [28:36]
Leslie Heaney
That's just so incredible. And I know, Dr. Surcic, that Sloan Kettering, you do so much, you know, to try to mitigate and advise patients on how best to navigate those side effects.
- [28:48]
Dr. Andrea Surcik
We do. I mean, we try very hard, you know, with early intervention. And that's one of the goals of our Young Onset center as well, is. Is the, you know, physical support with fertility, sexual health, integrative medicine, nutrition, but then also the social support, psychological support to kind of help empower people and prepare patients for the entire treatment, you know, process, as well as then life and survivorship, with some of the potential toxicities that they may have.
- [29:19]
Leslie Heaney
Yeah. Will you talk about that? I don't want to get the title right. Is it the Early Onset Center?
- [29:23]
Dr. Andrea Surcik
It's long. Yes. So it's the. It's the Young Onset center for Colorectal and Gastrointestinal Cancers. And we added the gastrointestinal piece actually a few years after it opened. We opened initially in March of 2018 for colorectal cancer patients only because of the statistics that we discussed early, where it was clearly described that we were seeing more and more young patients with colorectal cancer. We wanted to help them navigate treatment. We wanted to help them in survivorship. We realized that their needs were very unique and different than the patients we were used to treating, that had established careers, had finished supporting their families or had more support, were just in a very different place, places in their life than our 20, 30, and 40 year olds that were starting their careers or, you know, raising a young family, helping sometimes their elderly parents financially. So all of those toxicities were much more significant for young patients, as well as fertility, family planning, et cetera. So one of the main goals of the center was to focus on that and really help our patients navigate and have access to all of these services that were available at MSK under one center. And then the other focus was, of course, research. And we have a prospective registry. We collect stool, we collect risk factor questionnaires, tissue for analyses, blood, to kind of try to figure out why this is happening. You know, ask questions like, what do the tumors look like? Are they different? What is the biology of this disease and what can. What can we learn from it, both from the initial diagnosis and then all the way through treatment, and then also in survivorship in patients that are getting subsequent colonoscopies. And then, as I mentioned, we. You know, now more and more reports are coming out that this is not unique. The young onset rise is not unique just to colorectal cancer. We're seeing throughout the entire intestinal tract. And so we actually expanded the center in 2020 to include all of gastrointestinal tumors. So appendix, cancer and stomach cancer and esophagus, et cetera, can also receive the support that we provide and are also included in our research protocols.
- [31:31]
Leslie Heaney
That's a unique center, right? A unique service that Sloan Kettering provides.
- [31:36]
Dr. Andrea Surcik
Yeah, so we were actually the first in the world to open a dedicated center like this. And then since then, actually, several centers have followed suit throughout the US and actually internationally as well, where we've helped to advise how to structure it and then also partnered with them for research questions. So that's been really amazing and, you know, very rewarding, sort of as a researcher, but then also for patients to be able to have that support and that access at places outside of msk.
- [32:06]
Leslie Heaney
Yeah, I would think, you know, one of the great things about having this center or having that resource is that you're able to, for those that are interested, like, our daughter had a chronic kidney condition and had some surgeries when she was a baby. And I remember all I wanted to do was speak to another family that was going through the same thing to kind of get some understanding what was to come and to get some support. So having that must be a really strong component of the services that you offer or just a real safe haven for your patients, Dr. Surcik, to know that if they want to talk to someone else who's going through it, or teenagers or young adults in their 20s and 30s to talk about their shared experience of all the things you mentioned, kind of balancing young careers, young families, all these things that people in their 20s and 30s navigate, and then to pile colorectal cancer or rectal cancer, colon cancer on top of it is a lot. So that's terrific. That resource is available to them.
- [33:05]
Dr. Andrea Surcik
Thank you. Yeah. And we've learned everyone's different. Obviously, not everyone benefits from a group discussion or some people like to find connections through social media. Other people are much more private, like Kelly said, and prefer one on one. And so we try to be mindful of that and kind of offer, you know, all those potential opportunities. And then we also have a social worker that does reach out to each patient. Not everyone, you know, continues the relationship, but she's available for them if needed. And I think that's one of the. It's one of the things patients have found most, most beneficial, actually, because then she could also make connections, you know, as they go through therapy. Because I know everyone kind of processes what they're going through and what they're dealing with at different times in different ways. And so we just kind of remain available, you know, throughout the journey.
- [33:51]
Leslie Heaney
Right. Which is so terrific. And to know that the resource is there. We all, I think as humans, we want to have a. We want to connect something with something else. We want to say, well, okay, I didn't eat well, or I know I smoked too much and then I got lung cancer. It's so terrifying that we're in this space here that we really can't figure out or attribute, you know, the cause. Right. Of why these younger people are getting colorectal cancer. But are there things, practices or lifestyle choices that we can make to help reduce our risk of developing it or being diagnosed with a late, later stage colon cancer?
- [34:27]
Dr. Andrea Surcik
I think, you know, the best we can do at this point is obviously a healthy lifestyle, healthy diet, exercise, that we should all kind of be adhering to for. For multiple health reasons, not just colorectal cancer, especially at this young age, I think, because there's not clearly anything, you know, that we should or shouldn't be doing. But absolutely, if any symptoms develop, just be your own advocate and seek medical attention. I mean, that's really the most important thing to do. Because the thing about colorectal cancer, at least, is that it is preventable if Caught early. And so if, you know, if it just develops into a polyp or catch that polyp and could remove the polyp. So definitely people of screening age, which is 45 now, you have not gotten your colonoscopies, absolutely need to go. And that's, you know, sort of the, the optimal screening that we can do for now, we will have better screening in the future, less invasive screening. And obviously our goal from a research perspective is to figure out in this young population, like, who is at risk and why, and then screen those patients much, much younger. But until we can do that, you know, those are really the main things that, that we can focus on.
- [35:37]
Leslie Heaney
You know, that's so interesting. You know, you mentioned the, you know, the 45 age recommendation. I don't think a lot of people know that that that has been dropped from 50 to 45. There should be more public service announcements around it. Are all insurance companies, to your knowledge, that has become the standard that they will cover at 45?
- [35:58]
Dr. Andrea Surcik
Yeah.
- [35:59]
Leslie Heaney
This is just anecdotal of speaking with friends about. I said, oh, I was told 45. And, oh, no, I thought it's 50. And I don't think there's some great. There's great public awareness of 45 being the new. The new date and that as you talk about the trend of younger people developing the disease, that might continue to go down even further than 45.
- [36:22]
Dr. Andrea Surcik
Yes, potentially. Yes, absolutely. The numbers, the incidence rises. Yeah.
- [36:26]
Leslie Heaney
What are the percentage rates of those that are diagnosed with colorectal cancer? In the 45 and above group?
- [36:33]
Dr. Andrea Surcik
Most are still older. Right. The host is still much older. So about 20% of the whole. The entire group are under 55. And of those, the majority would be between 40 to 55. And then a much smaller number are under 40. The concern really is, though, that it's rising. And what's happening is that by 2030, 25%, or 1 in 4 of all patients with rectal cancer are going to be under 50. And then 1 in 10 of all patients with colon cancer are going to be under 50. The numbers are going to increase while they're still low. And that's the issue with screening and expanding screening to everybody is that we just can't do it economically. It doesn't make sense because there's way too many number of individuals that would need to be screened. But the rates are rising. Eventually we'll find ourselves in this predicament where the age will continue to decrease. There's already been a shift towards younger from. From the median age from 68 to 66 in the U.S. and that's, you know, predicted to continue to decline as we're seeing more and more young people.
- [37:39]
Leslie Heaney
Let's talk a little bit about screenings because all screenings are not created equal. And there are a lot of these kits, these sort of take home kits. And I have a young woman that works with me whose mother's around my age and which is horrifying. And I just said that, that I work with someone who actually his mom's around my age, but she was saying that her mom did the kit and that you don't need to, because I was talking about scheduling that colonoscopy. But the kit doesn't give you the full picture. Right? Am I right about that? And can you talk a little bit about that? In what instances is that a good step?
- [38:16]
Dr. Andrea Surcik
You're absolutely right. So colonoscopy is the gold standard because colonoscopy enables us to visualize everything, right. And catch that polyp and remove the polyp early, diagnose the cancer if it's present. So that's why it's the most important, because you can diagnose, but you can also intervene with the colonoscopy. The issue with the kids is they're good, but sometimes they can be falsely reassuring. So they're good in the sense that they're fairly accurate in detecting blood. But once there's blood, there's very likely to be a cancer. Polyps can bleed, but more likely there's something more, you know, invasive that's going on. Of course, unless it's, you know, hemorrhoids or something like that. But if, but if the bleeding's from the cancer, then you see the blood and then the next step from one of those tests and the kids is to go and get the colonoscopy. If it's negative, that doesn't mean that there's no polyp there that in a few years, however long, may develop into a cancer. And so that's the problem is that that opportunity might be missed and that the individual, you know, it seems like your, your coworker's mom might potentially be falsely reassured that everything is great because the result was negative.
- [39:30]
Leslie Heaney
So what you want to do is you want to catch your. Basically it's like catch the polyp before the polyp turns into something. And when you have your colonoscopy, if they do find a polyp, they just remove it right there. Right. So it's sort of like a one stop shop, I guess.
- [39:46]
Dr. Andrea Surcik
And you know, you know, they look at it under the microscope and they know how advanced it is and if it needs to. Any more interventions or if you're good.
- [39:53]
Leslie Heaney
To go, and then they tell you.
- [39:54]
Dr. Andrea Surcik
To come back in five years or, you know, or later even sometimes.
- [39:59]
Leslie Heaney
So, so the, so your recommendation or that is that if you're 45 and over, you're getting your colonoscopy, how often are you. Are you getting it or should you be?
- [40:11]
Dr. Andrea Surcik
So with the family history, it should be at 45. And then depending on the results of that colonoscopy, people are advised, you know, if it's completely clean, could be 10 years. If there are some concerns. It just depends on what they find. And then they. And then there's a recommendation for the, you know, intervals to come back. Sometimes it depends on how good the visualization of the colon was, the prep. Et cetera. And so those are, those are some, you know, potential kind of details that, that are discussed with the gastroenterologist after the colonoscopy. But definitely the first one should be at 45 or. Unless there's a family history. Sorry, I should say, unless, of course, there's a genetic predisposition or, or a family history, in which case, then it may be younger, depending on the. The case.
- [40:55]
Leslie Heaney
Is there any scenario where you. The, the kits. You see the kits playing a role?
- [41:01]
Dr. Andrea Surcik
I, I mean, I think they're helpful. If someone, you know, for whatever reason, is reluctant to go get a colonoscopy for a number of reasons, then okay, that's better than doing nothing. And I think eventually the detection is going to be much better to where we'll be able to rely on a blood test or a kit of some sort to detect even very, very early changes. But we're just not there yet with the technology.
- [41:28]
Leslie Heaney
I was just, I asked that question because I was thinking, you know, is there a. Would there ever be a, you know, for younger patients, would that be a first step? But it sounds like you're saying if you're experiencing bleeding from your rectum and it's persistent and all the other things we've talked about, you really want to go get the colonoscopy at that point, because that could be an indicator that you don't just have a polyp, that you have cancer.
- [41:54]
Dr. Andrea Surcik
Exactly.
- [41:55]
Leslie Heaney
Okay, so you have your colonoscopy, they discover cancer. And Kelly, I don't know if it was your mom or your family friend or you were saying really kind of sounds just was so incredible and diligent about setting out a plan for you to go meet with three different centers. And you went to Sloan Kettering and it's like trying on that wedding dress. The first one is, you know, just fits, right? And you, it had everything that you were looking for and you felt so comfortable with them and their protocol and their expertise. So. But in your experience, what should someone do? What is their first step? You get this diagnosis back from your biopsy. Kelly kind of sort of has in my mind like the best plan, right, to get the second opinions. But what would you tell a family friend or someone who came to you and said, I just got this diagnosis besides obviously the obvious, if you're living in New York, which would be to go, to go right to you. But for listeners that are all, you know, we have listeners all over the country, what should their first step be?
- [42:59]
Dr. Andrea Surcik
No, I do think it's an important question, you know, because often people with good intentions want to go to multiple places that think about it and see, and sometimes that can delay care and lead to worse symptoms, et cetera, if it takes a long time to get in for appointments. So I think the first step should be, and it's, what Kelly did is really, you know, you get the diagnosis. You see, sometimes it's the gastroenterologist that will say, okay, this is the, this is the place that I refer to. Go see such and such a doctor and just get plugged in. And then from there you get a sense of really what you're up against, what the stage might be, what the treatment offered might be, and then kind of say, okay, I want to get that second opinion and I want to see if there's something else out there oftentimes in discussion with the doctor, because I think most physicians, most oncologists at smaller community centers are aware that there's trials going on and that there's an interest in general for, you know, improvements in treatment, et cetera, and would refer patients. But I think it is important to, to get plugged in as soon as possible and then see if, you know, depending on the situation to get that second or third opinion.
- [44:12]
Leslie Heaney
I think that just makes great sense. You know, I had a very close, I have a very close friend who was diagnosed with colon cancer in her 30s and was thinking about going to a hospital kind of closer to them. And they ended up coming to Sloan Kettering and she's cancer free and she had a great outcome. But what the doctor had told her at this other hospital is similar, Kelly, to what you'd been sort of told about sort of catastrophic kind of life changing side effects and Sloan Kettering was able to treat her cancer without having her to have some of the more dramatic side effects that we talked about of having a colostomy. And obviously that might be the only course for someone that is in a certain circumstance and goes to whatever hospital it may be. But it's good to get that second opinion so you sort of have a better understanding of what your options are. And Kelly, you, in your case, what was so great is that you were able to go to the Sloan Kettering's outpost in New Jersey. But even if someone is living anywhere in the country and they're near a cancer center that perhaps specializes in colorectal cancer or wants to come to Sloan Kettering or any other world renowned cancer center, they can do that and then have their protocol administered, I think, with their doctor or their hospital locally. Is that right, Dr. Surcik? And do you have patients that live outside and come to you and.
- [45:43]
Dr. Andrea Surcik
Absolutely, yeah. You know, there's, there's various versions of that. Right. Of the collaboration, whether, even if they're not able to receive care with us. We do have several regional, you know, centers where we can offer care through msk that's, that's much closer to, to people's homes, such as the one in New Jersey where Kelly received her care. But even if not, then we often kind of can work with the local team and sort of help guide the treatment or help guide at the time of the decision making and see patients only at that time. So there's various ways that we can work with someone. And I always tell patients, like, once you come to us, you're considered our patient. You can always come back to me for any questions, any decision points or things like that. And we often work together with their medical oncologist, texting or through email and check ins to make sure that we're kind of all on the same page and help guide their care.
- [46:41]
Leslie Heaney
So, Kelly, you went through your treatment. Tell me about that moment. Was there a final scan that you had or. Dr. Sircik, you were her doctor at that point, I think. Did you sort of said, the tumor, it's gone, or what was that like? And when did that happen?
- [46:57]
Kelly Bonito
So after I had my last sigmoidoscopy with my treatments, because I still get them now. That was really when it was. The teller of your tumor is not there. It had completely disappeared. I then got the call a couple of days later that the biopsies came back with nothing of, nothing of sign of cancer. And really that was the teller for me. And Then once I was told that I didn't have to go through radiation, that was the huge celebration, because in my eyes, I was able to then have another baby.
- [47:34]
Leslie Heaney
That's so. That's so incredible. I mean, what does that celebration even look like? I mean, you must have just. I mean, relief doesn't even come to describe it, right. How you must have felt.
- [47:45]
Kelly Bonito
It was very surreal. It still doesn't feel real.
- [47:49]
Leslie Heaney
And so how. How soon after that did you then decide that you were going to try to have another baby?
- [47:57]
Kelly Bonito
Yeah, so I decided right there and then that I wanted to have another baby. However, my doctors had advised me to wait at least two years, because if anything were to happen, it likely would come back within those two years. It was a higher chance of that happening. So hearing that news really broke me, because that was a question that I was having almost every time I went and saw my doctor in Middletown. And I'm sure she was sick of me asking, when can I have another baby? When can I have another baby? And to be quite honest with you, those tear. Those two years were vital for me because that is really when it hit me on what I really had just went through. Yeah, I had a lot of panic attacks, a lot of anxiety attacks. I really didn't know who I was at that point. I became a new mom and a cancer survivor all around the same time. So it was a very hard couple years for me. It was time that I really needed for myself. And then after those two years, I was able to get pregnant, and I did. So I now have baby girl, and she's one now, and I'm actually pregnant with my third right now.
- [49:05]
Dr. Andrea Surcik
Oh, stop it.
- [49:06]
Leslie Heaney
Oh, my gosh. Kelly, congratulations.
- [49:09]
Kelly Bonito
Thank you.
- [49:10]
Leslie Heaney
That is so awesome. And without getting too personal, did you use your iv Your embryos from the ivf, or was it a natural with your.
- [49:19]
Kelly Bonito
So for my second, I did. We did use our embryos, and we chose to have a girl. And this third one, we. We went all natural, so we felt more confident this time around being able to do that.
- [49:32]
Leslie Heaney
That is so incredible, though, that you're able to do that after having this experience.
- [49:37]
Kelly Bonito
It's absolutely unreal.
- [49:40]
Leslie Heaney
Oh, my gosh. That is just. And how. I mean, just how satisfying to Dr. Surcik and just, you know, I just. You know, to be in your shoes, to see just how your research and your work has made just making such incredible, incredible difference in people's lives and saving people's lives and creating new lives, and it's just really, really amazing that research that original research that led to the clinical trial that Kelly was a part of, I think was part of the societies. Did the Society of MSK help fund that research, that initial clinical trial research?
- [50:22]
Dr. Andrea Surcik
It did, in part, yes. I was received very generous support from the Society a few years back, sort of at the start of this research, as well as the Young Onset Center.
- [50:34]
Leslie Heaney
And now you're working on some new research. Do you want to talk about your new research initiative or both? The one you've got one, I know with the Society and with our, the Society's campaign this year, but I'm sure you've got multiple pots on your stove there at the, you know, in different projects.
- [50:51]
Dr. Andrea Surcik
Obviously the, you know, the results of this study and you know, Kelly's journey has been incredible and we want to do that for all of our patients. Right. So that's the ultimate goal. So with rectal cancer in particular, we have several studies that are ongoing trying to kind of optimize this biomarker directed approach. Right. So what other treatments could we use for early stage disease to really get those tumors to go away without needing to do radiation and without needing to do surgery? So that's something that we're working on from, from biomarkers. We have our, what's called a HER2, which is more commonly heard of in breast cancer or in stomach cancer. But it also, that mutation exists in colon cancer and rectal cancer as well. So we're targeting that on a trial and then we have another study that will be coming out with a immunotherapy, but for patients that don't have this mismatch deficient mutation that Kelly's tumor has. So it's for the other 95% of patients, but with a combination of immunotherapy that we hope would be able to kind of really stimulate the immune system and hopefully get similar responses to what we saw on this thymus matal cancer study as well. So that will be opening soon. And then we've expanded the trial that Kelly was on to all tumors that are mismatched deficient, so including like stomach gu, like urothelial GYN cancers as well as hepatobiliary cancers that have that genetic mutation to see if we're able to do the same thing where we just give the immunotherapy and then potentially patients don't need surgery, which is huge because a lot of those surgeries are very morbid. If you can imagine, someone needs to have their stomach removed. They're never eating the same, they're never the same, or some of these liver surgeries aren't even doable because of the location of the tumor. And we're actually putting those data together now. The study's been ongoing. We have over 100 patients now in both groups, the rectal, and then everybody. All the other solid tumors. So we're going to have that data out soon. And then what's very exciting is that the study that Kelly was on there was a global study, what's called the registration study for the FDA that was actually opened throughout the world. It was led by gsk, who owns the drug called Astarlumab. But we're very heavily involved, and it's been now actually open throughout the world, and they've actually enrolled enough patients. And so now the data are maturing, and we'll hopefully be able to get not only FDA approval in the United States, but also in Europe and elsewhere to be able to offer this treatment to all rectal cancer patients with mismatch deficiency, which will be amazing. That's the rectal cancer research program. And then we're doing other studies and other smaller studies focused on early onset colorectal cancer, trying to see, you know, why this is happening on a. On a smaller sort of intestinal level. Not a larger, like, epidemiologic question, because that's obviously beyond what we can do as a single center, but sort of looking at our patients, looking at their tumors, looking at their polyps. Once they're cured from their cancer, they still form polyps. And so all of these things are now being actively analyzed to see if we might find some commonality or some, you know, signature that could give us a clue as to why these people developed cancer so young.
- [54:20]
Leslie Heaney
How many researchers do you have, Dr. Surcik, on your team? Is there any? I guess it's a tough question to answer because each of the different projects you're working on is different. But do you have any visibility into how long you think some of this work will take to get some of these answers?
- [54:39]
Dr. Andrea Surcik
I think the big picture one, I think will take a long time, and most importantly, it's going to take really just, you know, high numbers of patients. Right. So that's like the kind of epidemiologic question where it shouldn't be just New York City or even just the US but kind of a global question. And that's. We're actively participating in that, and hopefully that will get us some answers. The. The projects that we're doing are much more sort of focused where we say, okay, let's look at the mutations in the tumor, let's look at any changes in the intestine, do we find anything? And then that will lead us, you know, to the next step. So I think some of these projects that are named, that I named are.
- [55:16]
Leslie Heaney
Going to be, you know, a few.
- [55:17]
Dr. Andrea Surcik
Year, a couple years and we should have the answers. We have a number of research assistants that obviously help us with the samples, help us with the data collection. It's a, it's a huge, it's really a huge team because we, we have analysts that help then, you know, look at the genetic mutations and analyze those. We work with a lot of translational scientists, some basic scientists for some of the questions. And so it's definitely kind of a, you know, far reaching projects really across multiple areas at MSK to help working together, right.
- [55:49]
Leslie Heaney
You bring in all those experts and reinforcement that are there too at the hospital. So the Society campaign that you're involved with and the Society board is helping to raise money to fund. How is that research initiative different from other trials that you've done?
- [56:04]
Dr. Andrea Surcik
That's huge because it's funding specifically the Young Onset center and then a number of initiatives that we have and a number of studies that we're doing through the center for trials. For example, oftentimes we have money from the pharmaceutical company to support the trial, but then we need funding support for some of the science behind it, some of the correlative analyses, which are now also ongoing from the trial that Kelly was on as well as our other trials. And so we get some funding for that from grants. But really that's where the philanthropic support is so key in order to generate these data. And you know, some of the projects that I named, where we're looking at the samples, you know, we have to look at the pathology, we have to do certain stains, we have to do certain analyses. All of that is actually quite expensive to do. And we can't really generate any data without the philanthropic support. The Society funding that we're incredibly grateful and excited about will extend to all of that. It's going to cover the science, but then also the infrastructure of our center, which we're also looking to expand, both from a research support perspective, but then also for our patient support. Because just to give you an idea of numbers, since we've expanded now to colorectal and then all other gastrointestinal tumors, we see about a thousand new patients under the age of 50 a year. And so these are all patients that we want to help support, that we want to offer these services to. And then we're also interested in doing more educational series, more webinars, and then outreach into communities where there may not be as much awareness. As you mentioned, you know, the screening hours is 45 and to kind of spread the word as well. So all of that requires funding in order to be able to run.
- [57:51]
Leslie Heaney
How lucky we all are, Dr. Surcik, to have you leading that charge and on the front lines. And, Kelly, how fortunate we are to hear your story. I mean, it's just such a beautiful, beautiful ending and just a great testament to the medical care you received at Sloan Kettering, but also just a really uplifting, incredible story. Just hope. And I'm just thrilled for you. It's just a really. It's a really wonderful, wonderful thing. The miracle of medicine. And to see you, like, you know, I've actually heard about you. I've heard about you from, you know, as a patient, you know, being described. But it's just such an honor to get to meet you, and I'm so thrilled about your new news and your wonderful family. But it's Such incredible work, Dr. Sircic, that you're doing. We have living proof of that here. And just very grateful to you both for. For sharing the work that you're doing, Dr. Surcik and Kelly, for sharing your story. So thank you both. That brings us to the end of this episode of the interview. A huge thank you to Dr. Surcik and Kelly Bonito for joining, and as always, thank you all so much for listening. If you enjoyed this episode, please rate and review us on Apple Podcasts or Spotify or wherever you get your podcasts. We release a new episode every Wednesday, and until then. This is Leslie Heaney, and thank you for joining the interview.