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.
Listen to more 'Say More' episodes at
We want to hear how cancer has changed you. Email us at saymore@globe.com.
If you like the show, please follow us and leave us a review.
Kara Mihm of the Globe staff contributed to this report.
Shirley Leung is a Business columnist. She can be reached at

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I was private just to my family and friends Johnson: After graduating from Lehigh University, Brooke worked in tech. She spent most of a decade bopping between coasts. Eby: And then when I turned 29, I was moving back to New York from San Francisco. And when I was in San Francisco, I started feeling tightness in my calf. But I thought it was like– when you're 29, you're so oblivious and naive– 'Oh, I just did too much Pilates. I'm that in-shape that my calf hurts.' Johnson: That symptom became harder to ignore on the streets of Manhattan. Eby: Pretty quickly you're walking slower in New York City because people are just bulldozing you. And I'm like, 'This feels funny.' But again, I just didn't pay attention to it. I ignored it really until some of my colleagues started pointing out that I was limping. Johnson: At first, Brooke talked to her sister, who's a doctor, to see if she had any idea of what was going on. Her sister thought maybe Brooke had a pinched nerve. Doctors outside of the family were just as flummoxed. Eby: We were all sort of delusional that I was perfectly healthy at 29, but that kind of kicked off like the whirlwind of the four year diagnosis process. Johnson: In 2022, Brooke started losing her balance more often, so she went back to the doctor. The weakness that had started in her left leg had moved to her, right. That was enough to confirm a diagnosis: ALS, neurodegenerative disease, commonly known as Lou Gehrig's disease After the Yankee's first baseman who was diagnosed with ALS at the peak of his sports career in 1939. (Lou Gehrig baseball clip): A fatal disease attacked baseball's iron man. 'I might have been given a bad break, but I've got an awful lot to live for.' Johnson: As ALS progresses, you lose the ability to make most voluntary movements like walking, chewing, swallowing, food, and eventually breathing. Patients are usually given a life expectancy of two to five years, although younger patients often live for longer. Sivertson: What was your knowledge of ALS before this, or what was your exposure to it? What did you know about it? Eby: I clearly knew nothing about it because I thought in my mind it was a genetic, mostly genetic, disease that affected older men and was super rare. Like those were the three things that I was pretty sure of going into it. And then I also was told it moved so fast that you know, in a matter of months you're like paralyzed, if not dead. And I'm like, 'Well, I've been dealing with this for four years, so I just don't get it.' I'm like a young woman with no genetic markers, like they even tested my genes and they came back clear. So I just was so wrong about everything. It turns out like 90 percent of cases are not genetic, so it didn't rule anything out there. It's not nearly as rare as I thought it was, and it affects anyone at any age, like it truly does not discriminate. So everything I thought I knew about it, was wrong. I remember the ice bucket challenge, but mostly because I didn't get nominated and I felt really unpopular. Sivertson: Remember the ice bucket challenge of 2014, Ben? Johnson: I remember the viral dump-a-bucket-of-ice-water-on-yourself-after-someone-nominates-you part, but I completely forgot that this was about raising money to cure ALS maybe because nobody tagged me. Sivertson: Well, nobody tagged Brooke either. Eby: I'm like, 'Man, I'm in no one's top three.' Gimme a break. Johnson: The initial few months after the diagnosis were rough. Eby: All I had been doing was like lying in bed and eating M&M's every day. It was a dark time, reading a lot of books. I think I was reading like a book a day to escape. I know my Goodreads was fire that year. It will never be that high again. Johnson: In between tearing through books, Brooke had to tell everyone she knew that she was dying, which made people uncomfortable Eby: Because no one knows what to say. Like I remember we were at the doctor, at the neurologist, and they were like, 'Well, with ALS you really need to focus on gaining weight. So like, eat whatever you want, eat as much as you want.' And my sister goes, 'You're so lucky.' I just remember immediately pulling out my phone and being like, 'We're gonna remember that one.' My poor sister, I use it all the time. She's the kindest one of our family, and I'm always throwing her under the bus with that story. Sivertson: Brooke started keeping a little note on her phone with some of the funny moments related to her diagnosis. Johnson: But she wasn't sure anyone else would see the humor in a situation that was also pretty bleak. So she kept the note private until a wedding where she was supposed to be a bridesmaid. Eby: I was like, 'You've got to be kidding me.' The bridesmaid dress barely fit me, because, again, the M&M's. Then I showed up with a walker. And as soon as I walked in, the bride's grandma showed up with the exact same walker. I looked down and I was like, 'Oh, she has tennis balls, too.' So we were kind of like, 'Heyyyy.' I turned to my friend and I was like, 'We're out of here. There's no way I'm going to walk down the aisle with this walker as a bridesmaid, no chance.' My friend, not the bride, I told her that in secret and she was like, 'It could be really embarrassing or we could just try to make it really fun, like you're gonna get a good story out of it. Just go for it.' We made it through the ceremony and then by the reception, I don't know if my embarrassment had worn off or if I just kind of forgot about it, but we had the best time on the dance floor. The bride was doing the limbo under my walker. People were hopping on for walker rides and I was like, 'Okay, everyone's laughing.' I'm way more comfortable because the prior two months I had just been having like tearful conversations telling people about my diagnosis and being like, 'All right, go. I ruined your day. Like, go enjoy.' And so this was the first time I'm like, 'All right, people aren't even asking me what's going on. They're just trying to have fun.' Johnson: When Brooke got home, she started going through the note on her phone, detailing all the funny moments since her diagnosis. The next day she had brunch with the same friend who cheered her up at the wedding, Jackie. Brooke showed Jackie the note on her phone. Eby: She was like, 'Brooke, you need to do something with this. This can't just live here.' I forced her to be in my first video because I'm like, 'If we are gonna be embarrassed, you're going down with me.' Johnson: The very first video is of Brooke and Jackie on a couch, pantomiming the conversation where Brooke discloses that she has a rare terminal illness. Brooke's head is in her hands. She's pretending to cry, but Jackie is smiling wide with deep dimples. The videos that follow are very vintage 2022 TikToks. Heavy on popular sounds like this one with the footage from the wedding that started it all. (TikTok clip from Eby's account): Don't be suspicious. Don't be suspicious. Don't be suspicious. Don't be suspicious. Johnson: That's played after a caption of Brooke saying she 'doesn't want to draw attention to her diagnosis,' while you see Brooke and her walker absolutely being the main characters on the dance floor. Sivertson: Brooke's terminal illness and her willingness to laugh about it were immediately the cornerstone of her shtick. She uploaded the videos under the handle @limpbroozkit. Johnson: Fred Durst, anyone? Limp Bizkit? No. Amory? No? Sivertson: I get it. Brooke had no idea if anyone would find her videos funny. Maybe they would just find them sad. Eby: That's why in my first couple of videos, I was always kind of nervous because I'm like, 'Should I be joking at a time like this? I don't know.' Johnson: That all makes total sense to me. And I also think humor has always been this way of dealing with darkness. Right? Eby: I agree. I think especially with COVID. During and post COVID life, the whole concept of meme culture, like we can make a joke out of absolutely anything. Like we're quick now. People just need humor, I think to process things. Johnson: Can you talk a little bit about when you started to realize that you were really gaining traction with the stuff that you were putting on the internet? Eby: When I first started seeing my follower count go up and all of that. It was probably my dating videos, early days when I was using a cane. Johnson: These videos feature screenshots of the texts she got from potential suitors. Sivertson: Things like, 'Can I borrow your cane? I feel myself falling.' Johnson: Or 'Okay, I see you Abraham Limping.' Sivertson: Next, Brooke started making videos about this medicine she was taking as part of a trial Johnson: Medicine that tasted really bad. Eby: So I did a taste testing series so people could suggest how to chase it or how to deal with it. Eby (clip from TikTok video): Pickle juice, shot glass. Oh, stench. Let's just do it. Let's just do it. It's no big deal. Eby: I think after those two, that was when I started seeing, 'Okay, people are remembering that they've seen me before and they were saying like, Brooke, blah, blah blah.' They remembered who I was, as opposed to it just being another swipe away video. But it is hard, I think, to still understand any sort of impact you make if it's just on the internet, because, I don't know, sometimes it feels like I'm playing The Sims. I see the number of people watching and I see all the comments, but it's strange because ultimately I'm talking to my phone and then I'm clicking a button and then I'm seeing little internet sims pop up as comments. I'm like, 'How is any of this real?' It's strange because everyone's like, 'You're so brave.' I'm actually just talking to myself in my room. Sivertson: Do you identify as an influencer? Do you think of yourself as an influencer? What's your relationship to that term? Eby: No. I don't really have one. The stuff that I influence on is much more niche. If you need adaptive clothing, I've got a recommendation, but it's not like everyone's going to go out and sell that out because it's not a need for most people. Johnson: That's what I was gonna ask, what are the products that you would influence on? Eby: Yeah, you should see the partnerships that reach out to me. I always crack up picturing my manager versus a normal person's manager, because she gets calls from the National Funeral Directors Association and I'm like, 'Sure, sure, sure. That's a perfect fit.' It's a very weird space to be in. Sivertson: So Brooke is definitely not a full-time influencer. She still works a nine to five job in tech with only the occasional funeral sponsored content. Eby (clip from TikTok video): Funeral directors help with every step of the end of life plan. They can document your wishes and understand the logistics. So if I wanna play Kesha's 'Die Young,' noted. Johnson: Unlike other viral creators, Brooke doesn't get a lot of hate online, but she does get comments that are pretty weird. Eby: Someone wrote me a message. This poor person because I don't even know who it was. It was some stranger, but she was like, 'Sometimes I feel like I have a death sentence because I've been single for so long.' Sivertson: Oh. Johnson: Wow. Eby: It's just like, in her heart, she's not trying to be mean to me. Johnson: Mm-hmm, right. There's also this layer of pity or sort of people being like, 'Oh, you make me feel thankful for every day because your life is so terrible, right?' Eby: Yeah. Johnson: What does that feel like for you to receive? Because you seem very open and non-judgmental in some ways, but also you can see the humor and ridiculousness of the way people act towards you. That's what I was trying to ask about, if that makes sense. Eby: Yeah, I actually had not even thought about that. Then someone messaged me once and they're like, 'Do you ever get sick of being the reason people want to be a better person?' And I'd never really thought about it, but once she said it, now I'm like, I do. It kind of is in the back of my head sometimes when I get comments like that, but they have to be phrased in a very specific way for it to be a little obnoxious. Most of the time, if someone's like, 'I wanna appreciate every day.' To me, that's a great comment. I'm like, good. If someone were to say, 'I should feel lucky because my life isn't as shitty as yours,' I don't think I would like that phrasing. But I don't know that people phrase it like that. I don't remember seeing that. At least I would say feedback is a gift. The feedback that I got, especially at the beginning was, 'You're making light of this' or 'You seem too happy.' And I think honestly, most of the people who are making those comments are probably ones who had a first row seat to someone living with this and are still feeling angry at the disease. At least that's the backstory I've given them because otherwise, what do they care? I think in my mind, I'm not reframing it. I just wasn't that progressed. It wasn't that hard at that point. And now that it's gotten worse, there's not going to be as many videos of me being like, 'Hey, this is no big deal.' It's just the nature of progression. So I'm just like 'Stay along for the ride and if you wanna see things get worse, you will with this disease. So stick around.' Johnson: Watching all of Brooke's videos in one day is kind of like reading a flip book of how ALS progresses. In the early videos, Brooke doesn't look that far off from, say, one of the famous beauty influencers like Alix Earle. She does her makeup and get-ready-with-me videos. Her shampoo-commercial hair always looks like she's just had a blowout. She lives alone in a cool apartment. Now she needs around the clock care, thus the difficult decision to move home. Sivertson: How would you describe your mobility right now? Eby: Like a ragdoll? Nothing really works. I can raise my hands, but they're claws now. I'm really not into the way they look. I can still type, especially on my phone. I can still type on the keyboard, a lot more typos these days. I can move my head and talk, but below the screen, it's a mess. Johnson: Before the TikTok band briefly went into effect in January, Brooke made a video about how it felt to go back and watch her own content from the beginning. Eby (clip from TikTok video): It's so surreal the amount that we've had to adapt. Three years ago, I was walking and now I can't do anything. I don't even feel emotions because it doesn't feel real. It feels like I'm playing a role in a movie and then someone's gonna finally yell, 'cut,' and I'm gonna just pop up outta my chair and go be normal again.' Eby: Day to day, I think it's easy for me to just rely on humor and staying busy to cope. But then in that video, I just looked back at all these videos from a year before, two years before, five years before. And I was like, 'Oh my God.' I did not realize, I knew how much it changed, but I don't know, seeing myself just a year ago versus today was startling. I don't think our brains are meant to compute the speed of change that comes with this disease. I made that video and I was thinking, 'This is not a relatable feeling at all.' I just feel like I'm an actress playing a role right now. This doesn't feel real. And people are like, 'No, that's called dissociation. That's very much a psychological term that most people go through.' And I was like, oh, okay. You can tell I'm not actively in therapy all the time. Sivertson: In your videos, you've been documenting all along the way, the progression of the disease and how it's changing your life day by day, implement by implementation that you're adding into your routine. But there will come a time when you can't verbalize anymore, when you can't use your voice and use your humor in the way that you use it now. Do you think you'll still be making videos? Have you thought about what the content creation process might be then? Eby: Yeah, there are some people who go the full progression while still having a voice, and I'm still delusional enough to think I'm gonna be one of them. Even though my voice is clearly getting weaker, I'm still not slurring, which makes me happy because I'm like, people can still understand me. But that said, I have voice banked. I do have my voice saved so I can use it in some sort of text-to-talk thing. That's a big thing in the ALS community. As soon as you get diagnosed, they start saving your voice. But, I think my intention is to keep going really as far as I can. I think the way it looks might be a little different. Rather than me talking a ton, it might be like my parents helping to talk or filming stuff. Or maybe it's just, not talking and I'm just putting music over something I'm doing. I think there's options. My goal is really to show everything, just because that's what I wish someone had done. I would love to see someone who's more progressed than I am, get into bed or stay asleep. Like how the hell do you stay asleep when you can't move and you get uncomfortable or something falls asleep? Those are the things that I don't want to watch a whole sad documentary just to glean insights of how to do things when I could just make a two minute video. It might not work next week, but it's working right now, so that's the goal. Man plans, God laughs. I think people say, but that's the plan for now. Sivertson: Brooke doesn't know exactly how much time she has. Maybe she has five years, maybe she has 10 years. Johnson: What she does know is that curing ALS, it's going to take more resources. Sivertson: Social media, whether it's the Ice Bucket Challenge or a TikTok or raising awareness, can build community around ALS, but it's not going to cure the disease. That takes research, which has a price tag. Eby (clip from TikTok video): Thank you for all of the thoughts and prayers. Now, have you considered money? Sivertson: Right now ALS researchers are facing proposed funding cuts by the Trump administration that could drastically slow down their efforts. So if you're a billionaire, says Brooke, maybe forget about rockets and Mars and take up funding ALS research as your cause. Eby: I feel like the other planets have already made it here, and we just haven't been told about it. So I'm like, why don't we just ask them what it's like before we go waste all our money going there. Johnson: On TikTok, Brooke is a one woman ice bucket challenge, raising awareness of ALS and what it's like to live with it. But going viral prompted her to start another online community, one that's more specific. Eby: So if you think about my last two and a half years after being diagnosed, I put myself in front of an audience, and because of that, I have access to so many more resources because I have 200,000 people willing to answer a question I have. If I were to post, 'I really need advice on the best toothbrush for weekends.' I could get a thousand messages back. Whereas someone who's not a psycho putting her life online, like a normal person living with this disease, they could go to their support group, and I don't know how fast they'll get a response. There's just not as immediate of answers as I've been able to get. So I kept thinking about that: How do I make it so everyone has this level of access and this level of immediacy? And then I flashed back to when I first got diagnosed, they give you this godforsaken packet, it's like an encyclopedia size, and it's just pamphlet after pamphlet of resources. You've just gotten diagnosed, they tell you you have two to five years, it could be less than that and you're gonna lose every ability until that point. You go home and your brain is just scrambled and you're also like, am I gonna be paralyzed tomorrow? Like you just start thinking in terms of speed, everything moves so fast, and yet the resources they give you are in a folder with paper that none of us has used since elementary school. I'm like, if this disease moves fast, like why are we still treating it like we're in the nineties? We gotta do better than this. Johnson: Brooke's day job is at the tech company, Salesforce. She worked with some of her colleagues there to create a channel on the professional group messaging app Slack. It is specifically for ALS patients and their caregivers, and it's called Brooke says it's really special to her because it's a rare space where people are going through similar challenges. Eby: Even when I'm talking to my best friends in the world, who I've known since we were four years old, I could tell her anything, but right now, she's about to have her second baby at the same time where I'm learning how to use a ceiling lift to get me into the shower. Like we lead two very different lives. I think it's probably the same way that moms feel after they have a baby, where they're like, 'I could complain to my friends, but unless they have a newborn too, they don't get it.' That's probably how everyone feels about something in their life. It's just good to see other people, whether they live near you or look like you going through the same thing. Because you're like, 'Okay, I'm normal in this group.' Johnson: If you have an untold history, an unsolved mystery, or other wild story from the internet that you want us to tell, hit us up at endlessthread@ Leung: Thanks for listening to this episode of 'Endless Thread.' If you want to hear more, follow 'Endless Thread' on Apple Podcasts, Spotify, or wherever you listen. And make sure you're following 'Say More' while you're at it. Kara Mihm of the Globe staff contributed to this report. Shirley Leung is a Business columnist. She can be reached at

Boston Globe

31-05-2025

• Boston Globe

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. Listen to more 'Say More' episodes at We want to hear how cancer has changed you. Email us at saymore@ If you like the show, please follow us and leave us a review. Kara Mihm of the Globe staff contributed to this report. Shirley Leung is a Business columnist. She can be reached at

Boston Globe

23-05-2025

• Boston Globe

He lost his mother, sisters, and brother to cancer. It was in their genes.

Later in life, he understood it was no coincidence: threaded throughout his family's DNA was a hereditary cancer gene, vastly increasing their risk of the deadly disease. In this episode of 'The C-Word' series, 'Say More' host Shirley Leung talks to Ingrassia about the moment he discovered the cause, the difficult choice of getting himself tested, and how greater knowledge of family history can lead to monitoring that saves lives. The following is a lightly edited transcript of the May 22 episode of the 'Say More' podcast. Shirley Leung: Welcome to 'Say More' from Boston Globe Opinion. I'm Shirley Leung. This is episode four of our five-part series 'The C-Word: Stories of Cancer.' For years, His mom died of cancer in her 40s, followed by his two sisters who also died young. And it didn't stop there. Cancer kept popping up in the family, like a horrible game of whack-a-mole. When he got older, he learned it was no coincidence. Threaded through his family tree was a deadly cancer gene. Science on the genetic roots of cancer has come a long way, and a better understanding can help save lives. Larry's recent book is called ' Larry Ingrassia: I was very young when my mother had cancer. She died when I was 15. She was 42 years old. But my memory is that she had breast cancer for eight to 10 years. She survived it initially before she died. My memory is a bit fuzzy, but I do remember these enduring memories of visiting her in the hospital with my three siblings. I'm the second of four with an older brother and two younger sisters. That was always hovering over us, that she was sick. But then, she would be fine. Then it seemed like a couple years later something else would happen and she would go back. It was in the spring of 1968, when I was 15 years old, she was in the hospital and I didn't think much about it because she'd been in and out of the hospital for any number of years. I was a bus boy at a breakfast restaurant not far from our house in suburban Chicago. I was on a shift. It was kind of late in the morning and I remember my father came to the restaurant. One of the workers said, 'Your father's out back, he wants to see you.' And I was like, 'Oh my God. What's that about?' I went out back and he said, 'Mom's dead.' And so I was really shocked. Even though she had been ill, I just didn't have any inkling. Back then, in the 1960s, people didn't talk a lot about cancer, a lot about illness. So it was a real surprise. A family portrait of Larry Ingrassia (third from left) and his siblings in the 1950s. Three would die of cancer. Handout courtesy of Ingrassia family Leung: Your mom gets cancer and then your sisters. One of your sisters first, then another. Ingrassia: It was another decade before there was another cancer in our family, and my youngest sister, Angela, was 23, and she developed abdominal cancer. She died within about six months. She was 24. And again, it was really a shock. About a year later, one of my brother's sons, Charlie, who was two years old, developed a soft tissue cancer in his cheek. Now he survived. Again, it was a totally different kind of cancer. The prognosis was not good, but we were lucky he survived. Another five years after that, in 1987, my sister, Gina, got lung cancer and died about six or seven months later. By that time, we were wondering, 'What is going on?' We weren't sure what was going on. Again, no oncologist said to us, 'Oh, we think that there is something hereditary going on.' Leung: You had theories, right? Ingrassia: Yes, and I think there were some reasons for this. Our father was a research chemist. We thought maybe he brought home chemicals, tiny particles on his clothing after work. He would pick up the kids when he got home, especially when we were young. We thought that maybe we would ingest it, our mom would ingest it, and then years later, you don't know how many years later because cancer can take very long to develop, it would manifest itself in cancers over different parts of the body. And it's a plausible thing because there was this growing understanding of environmental carcinogens and particularly chemicals that could cause cancer. We were puzzling over all the cancers in our family. Doctors were puzzling over, not my family because we weren't studied, but similar families and they were also swimming against the tide because there was not a belief that heredity was a major factor in cancers. And this is where my book begins. In the late 1960s, again my mother died in 1968, which was around the same time, two young doctors at the National Cancer Institute were examining causes of cancer. They were young, they weren't experts at the time. They were looking for interesting cases and they came across a very unusual case. There was a father who was 23 years old and had leukemia, and shortly thereafter, his 10-month-old son developed a soft tissue cancer in his arm. Both of these are rare, especially at those ages. The combination and the odds are considered astronomical. So these doctors said, 'Wow, maybe we should study this family to find out what's going on.' And indeed, when they started looking at that family, they found cancers going back generations. They found many cancers throughout the family, and a lot of young cancers, as well. They found women in their twenties and thirties, but also children having cancers, too. They didn't know exactly what was going on, but they did write a paper published in 1969. They raised the question of whether there was familial syndrome. This was a seminal paper that turned out to be very important. Interestingly, the paper was published and the experts in the field, who of course were mostly focusing their research on viruses, were highly skeptical. They said, 'These cancers that you're talking about, they're all different kinds of cancers. What could they have to do with each other? How could that be hereditary if they're all different kinds of cancers?' To their credit, these doctors, Frederick Li and Joseph Fraumeni, both children of immigrants, persisted. They said, 'Let's keep studying this family and other families.' A 1991 photo of Frederick Li (l.) of Dana-Farber Cancer Institute and Joseph Fraumeni of the National Cancer Institute discovered how some cancers can be inherited in what is known as Li-Fraumeni Syndrome. Handout from National Cancer Institute Leung: And that's what's known as Li-Fraumeni syndrome, right? And how did you learn that your family had Li-Fraumeni? Ingrassia: Okay, so my brother in 1997, when he was 46 years old, developed lung cancer. Again, he was given a low chance of survival. He had a lung removed and he survived. We were again lucky. But then he had another cancer around 2005. He had prostate cancer. Finally, in 2014, one of his doctors said to him, 'Given all the cancers in your family, maybe you should undergo a genetic test, because I think that the history indicates that you may have Leung: This is p53, right? Ingrassia: P53 is the specific gene. The p53 cancer suppressor gene protects cancers from occurring anywhere in the body. It's actually called, since it was discovered, the That's why people who have the inherited p53 mutation can get cancer anywhere in the body. It's not site specific. So the types of cancers are myriad. There are a handful of major cancers in p53. One of them is breast cancer. Leukemia, soft tissue cancer, skin cancer, colon cancer, brain cancer are a huge variety of cancers that can be linked to the p53 mutation. Leung: Going back to 2014, when your brother Paul calls you and says, 'I have this gene. I think I have Li-Fraumeni syndrome.' Did knowing that he had that genetic mutation help with his treatment of his cancer? Ingrassia: Yeah. So, what do you do if you have this inherited mutation? First of all, the inherited mutation, like any inherited mutation, cannot yet be fixed. But if you have the inherited mutation, you know that the odds of you getting cancer are very high. And, also that the odds are pretty high at a fairly young age. So by age 40, if you have the inherited p53 mutation, 50 percent of people with the mutation have cancer. That's versus 5 percent in the overall population. It's 10 times as high. Often, as I mentioned earlier, it's children. It's really sad. And in a lifetime, if you have the p53 mutation, it's like 95%. So, some doctors who were involved in studying p53 said, 'Given that propensity, can we help people by giving them extensive, regular screening?' The advantage of knowing if you have the inherited mutation is that you can get annual full body MRI scans. You can get blood tests, you can get all sorts of tests. In my brother's case, I think it actually prolonged his life by a couple of years. After he had his testing, it was positive for the p53 mutation and he knew he had Li-Fraumeni syndrome, so he began regular scans. In 2017, the scan detected pancreatic cancer on the tip of the pancreas. Usually you don't find pancreatic cancer until you have symptoms, and it's too late. Pancreatic cancer is one of the deadliest cancers. In his case, it was found early. They were actually able to do an operation and get rid of the tumor on the tip of his pancreas. However, two and a half years after he had that surgery and survived pancreatic cancer, it came back in his lung. He died when he was 69, in 2019. Sadly, it was seven months after his son died of his third cancer. Newsweek cover of the p53 gene that would lead to a better understanding of cancer. Newsweek, 1996 Leung: And Charlie was only how old? Ingrassia: Charlie was 39. This is where I would argue for people who say they don't wanna know because they don't wanna have it over them. 'I know I have this mutation. My children have the mutation. I'm gonna be worried all the time.' Not knowing doesn't change whether you have it or not. I say knowledge is power. And this is why I wish that we had learned earlier in 2010 when Charlie had a second cancer, colorectal cancer. He started having problems at the beginning of the year. It wasn't until the summer that he was diagnosed. I think maybe his guard was down, he'd gone almost three decades after surviving his childhood with cancer. But it took quite some time before they finally said, 'Okay, let's do a colonoscopy.' And by then, he had a later stage of colorectal cancer. Again, he survived amazingly, but he survived in part because they gave him heavy doses of radiation to kill the cancer cells. The problem is, if you have Li-Fraumeni syndrome and you have p53 that can't fight against potentially cancerous cells the way that it normally would, radiation can plant the seeds for future cancers. Sure enough, in 2017, a month or two after my brother was diagnosed with pancreatic cancer, Charlie was diagnosed with his third, and final, cancer. It was bone cancer in his hip, right where he was getting all that radiation to kill the colorectal cancer. The odds of him living a long life given the family history were probably not good. But I do think that it might have made a difference. If he had known in 2010 and he'd been diagnosed right away, it wouldn't have changed whether he'd gotten the cancer, colorectal cancer or not. But the earlier diagnosis might've meant they would've had a lot less radiation to kill it. It might've meant that it wouldn't have come back in his hip. And that was one of the really sad things. It was so hard to watch for this young man. They had to amputate his leg, including his hip, in a desperate attempt to save his life. But the cancer kept spreading after that. About six months later, not long before my brother died, Charlie died. Leung: That was the hardest part of your book. Ingrassia: It was. It was incredibly hard to go through and it was incredibly hard to watch and to write about and talk to his friends. But, I feel more connected to my family because of the research that I did. Obviously I knew a lot about my sisters and their cancers, but I learned more about it in this process. My sister Gina began keeping a diary from the time that she learned that she had lung cancer until just before she died, six or seven months later. It was a combination of wonderful and painful to read about. One of the most painful things, if you go back in the eighties, was that it was a time when there was a lot of belief in mind over matter. If you just had the willpower, you could fight illnesses of all kinds. Of course, the corollary to that is if you're not getting cured, it's your fault because you don't have the right amount of willpower. I sensed that in reading her diary that she felt that it was on her and if she wasn't getting better, it was not her fault, but certainly that she contributed to it. All I could think of is, 'No, you don't know that you have this mutated gene inside you that basically has doomed you.' So, there were a lot of moments in writing it like that. My sister Angela, who was so young. I talked to a lot of her friends about her struggling with this and how difficult that was. If you could just put yourself in her mind: you're 23 years old and you're the youngest of the siblings. She learned she has cancer, and we learned pretty early on that the outlook is not gonna be great because the doctor said, 'Well, I operated. I did what I could, but it spread throughout her abdomen.' It was about a six month period and it was pretty much downhill. I wanted to talk to as many people who knew my sisters as I could. I wanted to talk to her oncologist and I wasn't sure of his name. My sister-in-law remembered a last name, so I started doing research. I'm a reporter and sure enough, there was a name that popped up. It looked like he had recently retired. I sent a note, and if I might, I'll just read a little bit from the book about this. (Excerpt from book): My eyes welled up the instant I saw the subject line on the email that had just appeared in my inbox. 'I have never forgotten your sister.' Only a few hours earlier, I had sent a LinkedIn message to a retired doctor wondering if by chance he happened to have treated my sister Angela, 40 years earlier. Was he Angela's doctor? And even if he was, what were the chances he might recall? One patient he treated many years earlier out of the thousands he had cared for. 'I realize you may not remember my sister Angela's case as this was decades ago' I wrote. 'But if you do, I'm hoping to speak with you.' I wasn't sure if I'd even hear back, so his quick response floored me. 'The day after your sister died, I received a beautiful flowering plant at home. Not only do I remember her, so does my wife.' I was in tears then and I am now. I just think about my sister, 23 years old for a young woman. Her whole life was ahead of her. This is about a life loss, a stolen life. There was a one word message that came with the flower to all of us: 'forward.' The fact that she was dying, but she wanted us to grasp life, it's pretty profound for a then 24-year-old. That was one of those many moments in writing the book. It stopped me. Leung: Larry, I don't know if you know, but one of the reasons why I'm so interested in cancer is So my entire life I'm like, 'Will breast cancer come from me?' This question of 'Will I get cancer?' My mom didn't get breast cancer, but I did. It was because of early detection, mammograms. I was detected early and so I'm cancer free. I had a mastectomy. I didn't have to go through chemo, so I'm one of the lucky ones. I think reading this book, you're always wondering, 'Why did I get cancer? And why no one else?' And for you, many other members of your family got cancer. That's why you wrote this book. So do you feel like you are satisfied with the answer on why cancer struck your family so many times? Ingrassia: I'm heartbroken and sad that I lost all my family to cancer, especially so many so young. But my brother and I often talked about how blessed we were in many ways. We were the children of poor Italian immigrants and we ended up doing things and achieving things that we never would've imagined growing up. I always say that it's not really right to say 'Why me?' about all the bad stuff in your life if you weren't also asking 'why me' about all the good stuff. I think I decided long ago to try to celebrate our good fortune in life and not dwell on or be angry. It's not a matter of being sad, of course I'm sad. I think often of my family and missing them and not being able to grow old with my siblings. But I try not to dwell on 'why me.' It's part of genetics. There's no control over it. Leung: Now it took you a year to get tested. Why did you wait so long? Ingrassia: I don't know. I was busy, but what happened was my daughter began pestering me. 'I want you to get tested.' It would be very rare, but it's possible to inherit the p53 mutation and not get cancer. There's that tiny 5 percent. Nobody knows why. There's still so much they don't know. They've learned a lot. They still don't know. If I had the mutation, there would've been a 50% chance that I passed it on. So it was really because that's what I wanted to know, if I passed it on to my children. It was only after I realized that, that I got tested. That's why she wanted me to get tested. But that was really the impetus for me. That was why I finally said, 'Okay, I'll do it.' Also, quite frankly back then, getting a genetic test was quite expensive. It was $3,000 to $5,000. So I was lucky my brother, through his oncologist, found a study that was being done at the University of Southern California. I was living in Los Angeles, and I was able to get it in, do it without any cost. Now you can get a genetic test for $250. Often if you have a history of cancer in your family, your insurance company will cover it. The cost is a lot lower. They have these multi-panel tests where they can find out if you have any number of cancer mutations. Some people have more than one. Leung: So in your book you mark the date July 10th, 2021. Tell me about the significance of that date. Ingrassia: When I was writing the book and researching the book, at some point you're thinking a lot about death and not necessarily in a sad way, sometimes in a sad way, but you're just thinking about life and death and the arc of life. At some point, I realized that the date was going to be the day that I would be one day older than my brother when he died, and that would make me the longest living member of my immediate family. I said, 'You know what? I wanna do something that day.' Celebrate is the wrong word, it's really commemorating that day. It's more of a memory of that day. So, I pondered a lot, 'Okay, what can I do that would be kind of a little bit interesting and a little bit fun? That says I'm glad to be alive. I'm lucky to be alive.' I pondered a bunch of things, maybe go for a long hike and go paragliding. Finally I found a place in Los Angeles that had something that's called a Leung: I had to Google that. I didn't even know what that was. Ingrassia: I had never heard of a gyrocopter either. A gyrocopter is like a tiny helicopter, about the size of a big motorcycle. You can fit two people in. The great thing about it is that you actually kind of almost see even more than a plane. You have this bubble in front of you. You can see everything. It was just like, 'Oh my God, I wanna do that.' So I told my wife. I said, 'Vicki, I'm gonna take this gyrocopter.' And she said, and of course she didn't know what it was, 'Okay, so on the day that you become the longest living member of your family, you're gonna put your life at risk?' And I said, 'You're right.' I thought it was a great line. I said, 'Yeah, but I'm gonna do that anyway.' I just felt that I wanted to do something where I felt really alive. I could be in awe of this kind of human experience. I got on that gyrocopter. It was about an hour. It's like this tiny thing that went up and down the California coast, which is pretty spectacular. I felt alive. Let me see if I have it here in the book. (Excerpt from book): I felt an exhilarating rush of adrenaline and yes, one or two stomach churning ones, too, as the gyrocopter dipped and spinned. I contemplated what my mom and dad and my brother and sisters would've made of my jaunt. I'm pretty sure they would've rolled their eyes and then smiled happy that I was doing something just a little bit wacky on this day for them and for me, for us. Because they couldn't. Regina and Angelo Ingrassia on their wedding day. Regina would pass on a hereditary cancer gene to three of four children. Regina died of breast cancer in her 40s. Three of her children got cancer as adults and died. Handout courtesy of Ingrassia family Leung: You say this book is a love letter to your family. So what do you mean by that? Ingrassia: It's a love letter because, especially my sisters and Charlie, their lives were cut short and I wanted to make sure that these lives that were cut short were never forgotten even though they were short lives. I think it's also a little bit of a love letter to other families like this. One of the things that's been most touching to me has been people who've reached out to me since I wrote this book, those who say 'thank you.' It's so rare when somebody says they have Li-Fraumeni syndrome. So for them to be able to say, 'You've given a little bit of a voice to us. You've helped us have an identity within this community,' I've been really touched by the number of people who have reached out to me. And again, some of these letters… Leung: You got letters from people? Ingrassia: Yeah. Leung: Yeah, that's great. Ingrassia: Yes, most of these kinds of messages I would say I printed out. I cried this week when this book came out, not because I wrote it or had anything to do with it, however, because it is part my story, too. I have Li-Fraumeni syndrome. I'm grateful for this book. Being a call for grace, hope, and continued investment in a fight against all cancers that steal those we love and that steal our own futures. Another message was, 'I just finished 'A Fatal Inheritance.' I don't think I've ever sent an email to an author before, but I wanted to thank you for sharing your family's story. As someone with an inherited mutation that has unknowingly passed it along to two thirds of my kids, I'm always seeking to learn more about my mutation in the latest surveillance and research.' Leung: Did you expect that? Ingrassia: No. This is one of the things I think that was especially moving and especially touching about the book, to hear from total strangers saying the commonality was like, 'Your family is my family.' Those were the moments in writing the book that touched me the most. Leung: Larry Ingrassia is a journalist who has worked with the Wall Street Journal and the New York Times and the Los Angeles Times. His latest book is called 'A Fatal Inheritance: How a Family Misfortune Revealed A Deadly Medical Mystery.' Listen to more 'Say More' episodes at We want to hear how cancer has changed you. Email us at saymore@ If you like the show, please follow us and leave us a review. Kara Mihm of the Globe staff contributed to this report. Shirley Leung is a Business columnist. She can be reached at