31-05-2025
Cancer patients are getting younger. Doctors don't know why.
The following is a lightly edited transcript of the May 29 episode of the 'Say More' podcast.
Shirley Leung:
Welcome to 'Say More' from Boston Globe Opinion. I'm Shirley Leung. This is the fifth, and final, episode of our series, 'The C Word: Stories of Cancer.' When we think about being young, we picture a time of exploration, discovering who we are.
What we don't picture? Cancer. Cancer is supposed to be a disease of aging, not the concern of someone in their twenties or thirties.
But there's a worrying trend in the cancer world where young adults are getting cancer at higher rates, and scientists don't know why. Kelly Spill was 28 years old when she was diagnosed with colorectal cancer. She was pregnant when she first noticed symptoms – constipation and blood in her stool. Her doctor told her not to worry – lots of things change in your body when you're pregnant.
But the symptoms didn't go away after giving birth. She saw a series of doctors. No one seemed too concerned, but Kelly, who spoke to me from her home in New Jersey, says she knew something was wrong.
Kelly Spill:
I was waking up every day and I was like, 'I just don't feel good.' But I couldn't really pinpoint why.
I would just say to my husband a lot every day, 'I just don't feel right. I just don't feel right.'
And then one morning we both were getting ready for work and I went to the bathroom and I looked down and there was just so much blood. I called my mom right away and she said, 'I think our best bet is to go to the emergency room.'
And I said, 'Okay.'
So during this time, my health insurance wasn't great. It was very hard for me to see a primary doctor. So that was our choice to go to the emergency room. I had explained to him what was going on and he said it's most likely internal hemorrhoids, 'Lay off the spicy foods.'
That's when I really started to feel defeated because now this is the third time someone is telling me this, it's gotten worse, and there was no extra that he was doing for me.
At that time, he called a family clinic in order for me to get to the top of the list and get me in sooner rather than wait.
At that appointment, I love telling this part because it sticks to me to this day, I had a nurse bring me back to the room. And she had told me, 'If you don't find your answers here, keep searching because you know your body best. Nobody knows your body like you do. You know your body best.'
And I was like, 'Okay.' And that made me feel like I am feeling this.
Leung:
That nurse probably saved your life, right? You had her voice in your ear.
Spill:
Yeah.
Leung:
Trust your gut.
Spill:
Yep. Even to this day, having kids, I think about her.
I wish I remembered her name, what she looked like, but I don't. If I did, I would go back and just say 'thank you' and tell her how much she's made a positive impact in my life.
From there, I just kept talking to my family and friends about how I was feeling instead of not talking about it at all. And I finally had one of my friend's moms say, 'I think I know someone who takes your health insurance. Let me get you their information.' Thankfully that doctor did.
I went to that doctor's office right away. I showed her pictures of what was going on from when I was living in California to when I was living in New Jersey. I was taking pictures in the bathroom the whole entire way. And she said, 'You need a colonoscopy, don't you?' And I was like, 'Yeah, like big time.'
And I was able to go that next week and that's when I found out I had a tumor.
Kelly Spill has had three children since she froze her embryos after being diagnosed with colorectal cancer.
Kelly Spill
Leung:
Wow. So how much time had passed since the first time you saw blood in your stool to the tumor?
Spill:
At that point, my son was eight months old, so it's easy to track. It was about eight months.
Leung:
So how did it feel to finally get an answer of what was wrong with you?
Spill:
It felt scary, but it felt good to finally hear that there's a reason for what I've been feeling.
Now it was, 'Okay, now what's next?' And at that appointment, I wasn't told that it was cancerous. They did a biopsy and I had to wait two weeks to hear if it was cancerous or not.
I knew during that time that it was, you just know. The way I looked in the mirror, I was just very skinny. I didn't look like myself. I didn't feel like myself. I knew the news wasn't going to be good. During that time, I kind of prepped myself for that.
My mom and I were in Walmart. We were baby shopping, and that's when we got the call. My first thought was 'How?' No one in my family has colorectal cancer, and I haven't even heard of it. So that was an extreme surprise.
Leung:
So what happened next? Did you have a treatment plan?
Spill:
Thankfully, I have a very supportive mom, and together we made a plan of going to three different cancer hospitals. We basically had a small checklist.
We had it on comfort level, what the response was with treatment. We had it on how far it was going to be from our house and their reputation. However, our first stop was Memorial Sloan Kettering Cancer Center, and it ended up being our first, and our last stop.
My appointment was in New York City, and at that appointment, that's when I learned that it was stage three. That means chemotherapy, oral chemotherapy radiation, and then surgery.
Leung:
How did you take in all of that? You were 28, you had your whole life ahead of you.
Spill:
My fiancé and I had just gotten engaged. We had a baby very quickly. We just moved back to the East Coast. He doesn't have his immediate family here. I dragged him to New Jersey with me and my first thought was, 'How am I going to tell him this?'
I was thinking about him most of the time. We had plans to elope in Switzerland and I asked the doctor, 'Can I at least elope in Switzerland this summer?'
He was like, 'Oh, absolutely not.'
I think that's when reality hit for me. This was changing my whole entire life at this point, and that's when I lost it.
Leung:
In doing this cancer series, I'm always struck by the young people getting cancer because a lot of times you're not just thinking about, 'How do I live? How do I survive this cancer?'
You're thinking about the life after cancer, which is actually very hopeful. You're thinking about planning for your future still, and I know one of the things that was very important to you was you wanted to have more children, right? Can you talk about how you talk to your doctor about that?
You have stage three cancer, and yet, you also want to plan on having more children.
Spill:
Yeah, so at that appointment he had told me that I had time to either freeze eggs or embryos, whatever one I chose. I was very thankful because I know some people don't have the time for that.
We chose to freeze embryos, and I will say that was one of the hardest processes during this journey. It was the most painful for me. I had a tumor that was sitting a centimeter away from my anal canal, and then I was growing these eggs.
Any woman that goes through IVF once, twice, three times, four times, I cannot imagine doing it more than once because it's just so painful. So going through that experience was very humbling.
After that, I got the call that we had four embryos. I said, 'Okay, that's great, right?'
She's like, 'Yeah, do you want to know the gender?' So I was like, 'Oh, that's cool.'
So actually hearing the genders of those embryos, it made me feel good again. It made me feel like I was able to do something for myself and my husband.
It was like a little bit of a rainbow in the sky that I was able to see. After that, it was game on. It's time to think about chemotherapy. It's time to make that appointment, and it's time to get through the first part of my treatment journey.
Leung:
How long did it take you to get to being cancer free?
Spill:
I started treatment in March and I was done in August.
In March, I was setting an appointment for chemotherapy with my doctor and I had a research nurse come in. She said to me, 'We had some tests comes back about your tumor. It came back with some positive tests that may allow you to go on a clinical trial. Are you open to hearing a different option?'
And I said, 'Absolutely.'
There was only three other people that had went on this trial, so the information was extremely limited. However, what I was hearing from her was that this treatment journey with this clinical trial would be a lot less harsh on my body than chemotherapy, radiation, and surgery.
So, I chose to go on this clinical trial. I was the fourth one in the country to go on it, and I had no idea what my future was with this drug. I had no clue what it could do for me besides the fact of, 'Let's see.'
Leung:
What year was this and what was the drug? Was it a matter of taking of pills or injections or did you have to go to the hospital? What did it entail?
Spill:
It was in 2020. I had a port inserted, so it was through the port. It took 30 minutes for the medicine to get to me.
I know chemotherapy is around two hours, so that's a big one in itself. By second treatment, I was already starting to feel a little bit better.
By my fourth treatment, after my checkup, I was told that my tumor was halfway gone, and by my ninth treatment, the tumor had completely disappeared.
Leung:
Was that during the period from March to August? Wait, in 2020, meaning during the pandemic?
Spill:
Yes.
Leung:
Wow, you had a lot going on.
I wanna just go back for one moment. Early on in your story, when you and your mom just learned that you have a tumor and it's cancerous, what was it like telling your fiancé and how did he react?
Kelly:
He's a very calm guy, thankfully. When I found out that I had the tumor, it was actually on his birthday, so I will always remember that date.
He took the news very, very good. I remember going up the stairs. He opened the door. He had a big smile on his face, not knowing what the news was going to be, and I just hugged him and started crying and my mom looked at him and she was like, 'not good.'
Between my mom, my husband, my dad, the people that are immediate around me, everyone kind of just jumped into action of, 'Okay, what are we going to do? What's next?'
Leung:
So once you have cancer, and I know this from firsthand having breast cancer eight years ago, other people with cancer, they find you. And so I was just wondering, did you run across other people your age getting cancer, and what are the stories that have stuck with you?
Spill:
I actually did. At that time, I had a really good friend who I grew up with. She went to graduate school with somebody who had just become a survivor of colorectal cancer, and she was diagnosed at, I believe around, 27 or 28 years old.
Thankfully, in my case, I had her to bounce off of. So she gave me her phone number and she got me through my journey single handedly.
I had a great support system, but when you have someone that you can chat about that has the same exact cancer as you, and you can text them saying, 'Oh my goodness, I have to get a sigmoidoscopy. What do I do?'
There's just things during that journey that are very vulnerable that you talk about. It's very hard for anyone else to truly, truly get what you're going through physically, mentally, emotionally, and financially. Having her during that whole journey, for me, it was a blessing.
Leung:
I had two cancer buddies, too. I had two women. They were other women I know in my circle, and we had breast cancer the same year, within months of each other.
It was the same treatment and same prognosis. So, I get it.
When I had breast cancer I was 45, and I think the average age is someone in their early sixties. And I think with colorectal cancer, it's the same way. You're not supposed to find patients in their twenties and thirties and forties with colorectal cancer.
They're supposed to be in their fifties and sixties and older.
Spill:
Yeah, I have thought about this a lot, not even just thinking about just colorectal cancer, but cancers in general. In your twenties, it's so hard because everything is the beginning of what you've been looking forward to from when you were a kid.
When you throw colorectal cancer or colon cancer in the mix, now we're also talking about losing your fertility, whether you're a man or a woman, which is also scary at that age where you're starting to think about, 'Do I want to have kids? How many kids do I want to have? I can't wait to have them. Maybe I don't want to have kids, but I can't wait to travel to all these places.'
It's just so hard because when I came out of cancer, and when I went to survivorship, I thought it was gonna be rainbows and butterflies, but it was so far from that. I didn't know who I was. I didn't know what I wanted to do.
I was still a new mom. When you're a mom, new mom or not, you lose yourself anyway at that point. You're trying to figure yourself out again. So, it was very difficult for me to really figure out my future. Sometimes it still is.
Leung:
Kelly, so you're five years past your initial cancer diagnosis?
Spill:
Almost.
Leung:
Almost, yeah. That's a big graduation moment in the world of cancer.
One of the things I've unearthed in my podcast series is this idea that a lot of times when we think of cancer, we equate it with death. But now through modern medicine, there are a lot of us who are living and surviving.
But, that idea of being cured, it's also complicated. For me at least, it's almost like a ticking time bomb. I worry the cancer will come back or it'll pop up somewhere else because my body knows how to make cancer.
How are you processing being 'cancer free?'
Spill:
So, before I started treatment, it did go through my head, 'How long do I have to live?'
And looking at my son, it really broke me thinking that. But being a survivor at this point, I try not to think about it.
I think about how my doctors did an amazing job with this trial. I'm on a great path, so when I go through that in my head, I don't think about this cancer coming back.
Leung:
Kelly Spill is a cancer survivor and patient advocate living in Tinton Falls, New Jersey.
When we spoke to Kelly, she was pregnant with her third child. She has since given birth to a healthy baby boy named Nash. They're both doing well. Congratulations, Kelly.
After this short break, we talked with oncologist, Andrea Cercek of Memorial Sloan Kettering Cancer Center in New York, the same hospital where Kelly got her treatment.
Kelly's thriving now, but her cancer story is a troubling reminder of a broader trend.
Of all the people diagnosed with colorectal cancer in 2019, 20 percent were under 55 years old. That rate has doubled in the last two decades. This increase in younger patients is pushing doctors to think differently.
Andrea Cercek is an oncologist at Memorial Sloan Kettering in New York. She leads the first clinic in the world to specialize in young people with colorectal cancers. She told me she started the clinic after she realized that younger patients required her to take a more holistic approach to treatment.
Andrea Cercek:
It was really in response to these young adults that we were starting to take care of where we realized that. The treatment process was the same, but everything else surrounding it was very different in terms of their needs, their ability to kind of handle treatment, whether that was from a financial perspective or from support.
Many of them were single and so we really wanted to focus on all the support that we could provide at the time of diagnosis through treatment and then also in survivorship. When, as an oncologist, you meet an individual, and particularly in the colorectal cancer world, many of them had advanced diseases, so you wanted to start treatment right away.
So a lot of these support services or these ancillary services kind of fell by the wayside and we realized that really that was not okay for our patients or for our caregivers.
Leung:
What do you mean by those ancillary needs? What do these kinds of patients need?
Cercek:
That's a great question.
I think the most important thing is when you are diagnosed with cancer, obviously there's a lot that goes into that from just wanting to fight, but then needing support, your caregiver support, providing caregivers with support.
And especially young adults, many of them were just starting families, so fertility was incredibly important.
I think the most important intervention actually has been social work. So, what we established was a meeting with our social worker who's dedicated to just seeing our young adults. After that first conversation, some find her incredibly helpful, so they continue the conversation on a personal level. She's done couples counseling, caregiver alone counseling, and then most of our patients just really wanna know, 'How do I talk to my kids?'
Leung:
I want to go back to this question of fertility, but before we go on, you're the doctor. I think a lot of our listeners might be thinking, 'What is colorectal cancer? What are some of the symptoms and how common is it?'
Cercek:
So colorectal cancer involves the large bowel, and then it goes all the way to the end of the gastrointestinal tract and the pelvis. The signs and symptoms are really associated with where the tumor is in the gastrointestinal tract. Oftentimes, if the tumor is at the end of the gastrointestinal tract in the rectum, the stool is already formed so the person can have blood in the stool, constipation, or a really hard time evacuating.
If the tumor's on the other side, oftentimes they can present with just anemia. They don't really know. They're just feeling more and more tired. Then they are found to be anemic or unexplained weight loss.
And then all of it can really cause a change in bowel habits, so looser stool or constipation and then unexplained abdominal pain.
So I think the most important thing is if any of these symptoms come up and they last more than just a few days, it's important to seek medical attention.
Leung:
And I guess when you're younger, you don't immediately think, 'Oh, I've got colorectal cancer.' Right? Is that why it might take a little longer to diagnose these kinds of cancers?
Cercek:
Yeah, that's absolutely right. We initially thought when we first started to look at this, that this disease was just very different and much more aggressive.
But what we actually later learned through very nice, large surveys is that most of these young adults actually have symptoms for more than six months. They are either too busy, they kind of dismiss the symptoms, or they actually have to see multiple doctors before they're diagnosed because nobody really thinks, 'oh, colorectal cancer' in a 35-year-old.
Leung:
What other cancers are we seeing more of in young people besides colorectal?
Cercek:
It's actually very scary. We're seeing a rise in a number of cancers. It's throughout the entire intestinal tract, so esophageal cancer, stomach, gastric, pancreas, appendix, and then as we talked about GI cancer.
But then there's also an increase in breast cancer as well as certain gynecologic cancers, certain liquid tumors as well. There does seem to be this kind of general trend of an increase in young adults with cancer.
Leung:
What's your best guess? Why is this happening?
Cercek:
The honest short answer is we don't know. We assume that it is an exposure, so an environmental factor or most likely something multifactorial that's occurring. I think the reason that we think this is because it truly is occurring all over the world.
It's not just in countries of high socioeconomic status where you might think, 'Okay, there's something that is different in behavior or in exposure,' but even countries of lower socioeconomic status that are starting to have registries, they're seeing this exact same trend.
But what is it, we just don't know.
Thankfully, now everything is under investigation.
This includes lifestyle changes being more sedentary, like watching tv, things that we're ingesting from foods to just exposures in the environment. Medications, as well as things like microplastics that are just kind of everywhere in the environment that might be changing our bodies.
Leung:
That's just as scary, if it's everything.
Cercek
: No, that's absolutely right. It is.
We may not be able to identify exactly what it is, but I think the goal of research is to see not necessarily what it is, but what are the changes that are occurring and who are those individuals in which these changes occur, and then lead to cancer.
Maybe there's some other unifying factor that we could find. And then the goal, of course, would be to find these individuals and then screen them early to prevent this from happening.
Leung:
So is it kind of like breast cancer where if there's early detection through a mammogram, and I guess in the case of colorectal cancer, a colonoscopy, you might have a better chance of detecting the cancer?
But I think in the United States, doctors recommend colonoscopy only starting at 50, right?
Cercek:
It's actually been lowered to 45. This was in response actually to this early onset colorectal cancer rise.
However, the steepest rise in young adults is actually in 20 to 30-year-olds, and we still see a lot of individuals in that 40 to 45-year-old age group that are not recommended for screening.
It's complicated because screening is expensive and it's still relatively rare in terms of incidents in young adults, despite the fact that it's rising. So, 45 was kind of the best that we could do.
I think the goal is, though, exactly as you said, this cancer is preventable. If you do a colonoscopy early enough, you could remove that polyp and prevent the cancer from occurring.
So what's going to happen, and where there's a lot of great research ongoing now in progress, is other ways of detecting colorectal cancer. That would be through early detection, either through blood tests or stool tests.
I think that is going to be the future that will hopefully change outcomes drastically for colorectal cancer.
Leung:
I want to get back to patient care here. Can you share some anecdotes about some interactions you've had with younger patients that have changed the way you think about how you treat cancer for young people?
Cercek:
One patient who really struck me and really kind of inspired this clinic and this early introduction of support services, in particular social work, was a young woman with rectal cancer.
So again, rectal cancer is located in the pelvis and so treatment is quite toxic with chemotherapy, radiation, and surgery. She went into early menopause and then needed the very morbid surgery, which in her case was a permanent colostomy and a very extensive surgery that left her with significant sexual dysfunction and early menopause and infertility. But the cancer was gone and there were no signs of cancer and she was cured.
I remember I went in to tell her, 'Your scans look great and you're cancer free. This is amazing.'
I had this huge grin on my face and she just looked at me and she said, 'You know, this is not living. That's great, but it doesn't matter because if I knew that this is what my life would be like in survivorship, I wouldn't have chosen it.'
I was just completely floored because we live for that cure. That's what we want. We work for the goal of all of our interventions and obviously it's a hugely important goal, but then you realize there's so much more to curing the cancer. There's that whole part of survivorship and leaving our patients as equipped as possible to deal with life after cancer.
They're never gonna forget that they have cancer. They're always going to be a cancer patient and we can't get rid of that. We can't minimize that. But if we could have supported her better from the beginning, prepared her better, maybe it wouldn't have been as difficult for her as it was.
So this was the idea. Do we have these support services: social work, psychology, psychiatry early on? It's not for everybody, but I do think that for certain people that would make a big difference. And, that's kind of what really inspired me and I think about her all the time.
Leung:
While reporting the series, I was struck by how much progress has been made in the world of cancer treatment. Survivorship is higher, deaths are lower, but the main exception is this trend of young people. How scary is it for you to work in this somewhat dire, little understood corner of oncology?
Cercek:
I think it's scary in that the trend is alarming and when you keep seeing that you're aging and your patients keep getting younger, that's very, very difficult. As I mentioned, I'm an optimist, I am a researcher. I believe in progress and I think we're already making progress.
So to me, it just inspires me to try to do better by my current patients and my future patients, not only in supporting them through this, but in actually doing the research to make treatments better for them. Then also in the preventative space, try to figure out why this is happening and how we can prevent and stop this trend.
Leung:
So with that said, is there one thing that gives you hope in this space?
Cercek:
I think we've seen a lot of progress. Even though it's challenging to see more young patients in the clinic, I would say each year, I think we've definitely made a lot of progress in terms of treatment of early stage disease with less toxicity.
I think there's going to be a lot of progress in treatment of colorectal cancer, not just early stage, but also metastatic in the next few years.
Leung:
Dr. Andrea Cercek is a cancer doctor at Memorial Sloan Kettering in New York. She's the founder and director of the Center for Young Onset Colorectal and Gastrointestinal Cancer.
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Kara Mihm of the Globe staff contributed to this report.
Shirley Leung is a Business columnist. She can be reached at
