The C-Word: Let's talk about cancer – starting with my own.

The following is a lightly edited transcript of the May 1 episode of the 'Say More' podcast.
Shirley Leung:
Welcome to 'Say More' from Boston Globe Opinion. I'm Shirley Leung. This is the first episode of our series, 'The C-Word: Stories of Cancer.'
When I was diagnosed with cancer, it's like I was waiting for it my entire life.
Because when I was 12, my mom's mom, my Wai Po, died of breast cancer. I watched my chubby cheeked grandma waste away after chemotherapy and a double mastectomy.
She, like me, had been diagnosed with breast cancer in her forties, but unlike me, she didn't have the advantage of early detection in the 1970s. There were no annual mammograms. She found the lump herself, and by then, the cancer had spread.
Wai Po was only 55 when she passed away in 1984. She had fled Mao Zedong's communist China, but couldn't outrun cancer.
Back then it was like the Dark Ages. A diagnosis felt like a death sentence.
A 1979 photo of Shirley Leung (l) when she was 7 years old with her grandmother at Longwood Gardens in Pennsylvania.
Handout/Kam-Ken Leung
For the next month on 'Say More,' we'll be sharing stories of cancer, starting with my own. Some of these stories end in tragedy, some lead to new beginnings. When my cancer journey started, I didn't know whether I was headed for death or a new start.
For now, I'm fully cured, but in some ways I'll never quite get over cancer.
I'm in the studio with 'Say More' producer Anna Kusmer.
Anna Kusmer:
I remember the first time you told me you had cancer, we were having dinner together and you mentioned it sort of offhand, and I was really intrigued.
I was like, 'I've known Shirley for a while now and I didn't know this about her.'
I had a million questions, but I didn't know if it was okay to just grill you about it. Over time I did hear more of your story. How long has it been since your cancer diagnosis and what kind did you have?
Leung:
So it's been eight years since my successful treatment.
I had early-stage breast cancer. Mine was caught by an annual mammogram. It was stage one; I had a single side mastectomy. My left breast is gone now, and I have an implant. I had five years of a drug called Tamoxifen. It's a type of hormone therapy that reduces the chances of my cancer coming back.
Kusmer:
So you write a lot about your personal life in your columns but you've never written about your cancer. Why did you wait so long to talk publicly about this?
Leung:
When I was first diagnosed, I thought about writing about it. Between my diagnosis and my first surgery, I was thinking about doing it and I got this really good advice from somebody who said, 'Don't write about it now, you are going to be going through so much surgery and a diagnosis. You need to focus on your treatment.'
That was the best advice I got during that period because I would later learn that it took me probably two years until I stopped thinking about cancer every single day. And to stop thinking about the idea that I might die of cancer.
Kusmer:
Can you take me back to eight years ago when you first found out you had cancer? What were those first couple days like?
Leung:
I was about 45 years old and I just had my annual mammogram. I got a call back saying, 'I think we want to call you back. Can you do another mammogram?'
So I came back and then they said, 'Oh, we want you to have a biopsy now.'
So I went in for a biopsy and they took two biopsies in two different places in my left breast. Then I had to wait. It was actually very excruciating to wait. I think from my first mammogram to my biopsy result, it was probably almost three or four weeks, and I was kind of in limbo.
And I remember, I got a call from the doctor's office.
Kusmer:
You were at work, right?
Leung:
I was at work.
I'm thinking, 'Well, I must not have cancer. Who calls you up and tells you over the phone that you have cancer?' So it was almost a relief that the doctor's office called.
But no, I learned that no, they actually do give you your cancer diagnosis over the phone.
Kusmer:
Oh my God.
Leung:
And I couldn't believe it. So I'm sitting in the office at the Boston Globe. It was literally the week that we were moving from our old headquarters on Morrissey Boulevard in Dorchester into 53 State Street, here. So it was a pretty empty newsroom. I'm unpacking my boxes. I'm trying to file a
It was like my world stopped. It was just like all those movies where you're told you have cancer or, some horrible thing and you know, the world, the room was just like spinning.
Once the nurse on the other line said ,'You have cancer,' I just stopped listening. I couldn't even understand what she was saying. I have no idea what she said after that. I just knew I had to get off the phone and call my husband right away.
Kusmer:
So what kind of breast cancer did you have?
Leung:
So I had something called Ductal carcinoma in Situ (DCIS). It's the kind of breast cancer you wanna have, as my doctor was explaining to me. It's both very treatable and beatable. It's a kind of cancer that's supposed to stay in the breast, which means it's not supposed to break out and spread throughout your body.
But I had very aggressive tumors, and if left untreated, it probably would've become invasive. My prognosis was good, but having cancer, it's like a series of cliffhangers. You get diagnosed, then you meet with a lot of different doctors. Then you go through surgery, there's more biopsies. They're trying to figure out if it spread.
Not only did they take my left breast, but they took the first lymph node to just make sure the cancer had not spread. And then after that, I didn't have to do chemo. I didn't have to do radiation. But I did have to take five years of a drug called Tamoxifen, and that prevents cancer from recurring, because now they're concerned about my right breast. So they're making sure it doesn't come back.
Kusmer:
So you didn't come out publicly about your cancer for understandable reasons, but who did you tell? Did you tell your little kids that you had cancer?
Leung:
It wasn't hard telling my kids. They were only four and six. They had no idea what cancer was or what it could do.
Of course I told friends and colleagues about my diagnosis, but the hardest conversation was with my mom. And that surprised me. I actually think I waited a bit to tell her.
That's because her mom died of breast cancer and I'm a mom now, and if one of my kids called me up and said 'I have cancer,' it would've crushed me. And so I didn't want to break her heart, telling her that her daughter has breast cancer just like her mom.
Leung as a young girl with her grandmother in New York City's Chinatown in an undated photo.
Photo by Lou Chen
Kusmer:
So how did that conversation go with your mom?
Leung:
It was a hard conversation. I remember she had called me about something else. I think we were talking about summer vacation plans and then I blurted out I can't do any of that because I have cancer. And we both just started crying. I have very vivid memories of that call.
When doing this series, I was curious what my mom remembered of that call. We actually never talked about it.
Kusmer:
Your mom who lives in California, we connected with her via Zoom. We wanted to see what she remembered.
Leung (recording of call to mom):
Hello. Ma?
Leung's mom:
Hello. In the office, is it now your home?
Leung:
Yeah, in my office.
She was really nervous, Anna. She must really love me if she was willing to go on my podcast
Kusmer:
She told us a little bit about her memory of the call.
Leung:
Do you remember that day? When I gave you a call?
Leung's Mom:
Yeah. It was morning time. I was shocked, crying. 'Why do you have cancer? You are so young.'
'It's people my age who have cancer, not your age.'
Leung:
I asked my mom if she was scared about me having cancer.
Leung's mom:
Of course. Scared. And sad, very sad.
Leung:
Why were you sad?
Leung's mom (translated by Leung):
Your kids are so young and if they lost their mother, the family would be broken.
Leung:
I asked my mom if she was really nervous for me because her own mother had died of breast cancer, and I was really surprised by her answer.
Leung's mom:
My mom had breast cancer so long ago, 40 years ago, and there are so many advances in medicine and treatment.
Leung as a young girl with her grandmother in front of her home in Jackson Heights, New York in an undated photo.
Photo by Lou Chen
Leung:
My mom knew, I think deep down, that I'm not going to be my grandmother.
Anna, you and I went to Dana-Farber. I hadn't been to Dana-Farber Cancer Institute until I had my cancer. Had you been to Dana-Farber?
Kusmer:
I've definitely heard of Dana-Farber. The Jimmy Fund, a philanthropic wing of Dana-Farber loomed extremely large in my childhood. I remember every time we'd go to the movies, there'd be buckets passed around to raise money for the Jimmy Fund.
So I've always been aware of this world class cancer institution in Boston, but I've never been inside and it was really interesting to go there with you.
Leung (clip from Dana-Farber visit):
All right, so we're outside Dana-Farber. This is the main building, right?
Leung:
I called it the Four Seasons of Hospitals because it's just so welcoming, but also it's very sobering being in there because some of the people there are very sick.
Kusmer:
When you first walk in there, there's really high ceilings. Tons of light coming in through the atrium. It does look like a hotel lobby. And the juxtaposition between that and what you know about it, it's mostly full of cancer patients, those two things together makes you feel like this is a place of great purpose and importance.
Leung:
I think purpose is the right word. Often when we talk about cancer, we talk about it as the war on cancer, right? You do feel like this is a place where you are on the front lines of fighting cancer and you have doctors and nurses and staff and researchers helping you battle cancer.
Leung (clip from Dana-Farber visit):
There's this garden, serene garden, and I remember sometimes you can come in here, it's a healing garden. You don't see this in other hospitals.
Kusmer:
One place we went to together was this indoor garden. I've never seen that in a hospital before. Did you go there when you were getting treatment?
Leung:
I did. I did because it's such a special place. Maybe you're waiting in between appointments or before your appointment. After an appointment, you go into this garden and you have these benches and it's warm and it's sunlit and you can just sit there and meditate. As much as cancer is a physical disease, it's also a mind game.
Kusmer:
It seems like this garden is a physical representation of the fact that it's not just the physical biological support you need in this journey. You also need these other supports like spiritual places to contemplate your life.
Leung:
It's something my oncologist, Ann Partridge, seemed to really get.
Kusmer:
Actually right after the garden, we went to see her.
Leung (clip from Dana-Farber visit):
You look good.
Ann Partridge:
Thank you, my friend. How about you? How are you?
Kusmer:
Tell me a bit about Dr. Partridge. Why did you choose her? What did you like about her?
Leung:
Her specialty is dealing with younger women who have breast cancer. I think the average age of a woman who gets breast cancer in the US is in her early sixties, and so her specialty is women in their twenties, thirties, and early forties.
She said she was inspired to work with younger women with breast cancer because of a friend of hers who was diagnosed when she was 30.
Partridge:
She presented with a lump and sure enough, it was breast cancer.
What that did do, at a tender young age for me, was open my eyes to some of the things that the medical community doesn't focus on.
So you're focusing on the disease and what treatment do they need? What surgery do they need? Should we give them chemo or not? And she was also grappling with starting to date a guy. 'When do I tell him?'
'And what kind of camisole do I get if I choose to have a mastectomy? And when can I do the reconstruction?'
And things that, kind of as a doctor, you're like, 'Talk to the nurses. Go to the boutique.'
But when you are either a patient or you're close enough to a patient, when they're sharing those things, you're like, 'Oh, what's she going to do?'
We don't know any of this stuff. And more importantly, how is she going to feel in a couple of years as the dust settles with her decisions, decisions about fertility, decisions about reconstruction. So there's a whole Pandora's box that gets opened for our youngest patients, especially that there wasn't as much research to tell us what to think about her future risks, let alone how to counsel her.
So that's an area that we focused on a lot to try and bring more information to the table as people are making these difficult decisions.
Kusmer:
One thing that I really liked about Dr. Partridge is that it seems like she took listening to her patients and really understanding her patients to be one of her biggest jobs besides the technical work of treating cancer, like understanding what their values were in life, what their fears were, and truly trying to get patients to open up to her about these really deep life or death questions. That doesn't seem like every type of doctor would have to wrestle with that.
Partridge:
I see it as, 'What can I do to make this better for this person?'
That's true for everybody that I take care of. How can I make their journey better? I find that as both an extraordinary privilege and responsibility because in order to help make a person's journey better, whether they have low-risk early-stage breast cancer, or they're living with an advanced disease, you have to get to know that person.
And that's part of what pulled me into cancer, breast cancer specifically, because it's a long haul journey. Even when they're ultimately going to die of the disease, we often can get them on a treatment that contains it for some time. So to me, that was part of the compelling draw, to take care of patients who are dealing with something very serious. Each bring their own unique gifts and baggage to it, so you can help to get to know them and take care of them and hopefully make their journey better.
Leung:
Ann, and other oncologists that we talked to for this series, so much of their focus was on quality of life. It wasn't about, 'We are going to do everything possible to kill the cancer, even if it almost kills the patient.'
I feel like before it was one size fits all for cancer treatment, and now it's like, 'No, we can customize your treatment so you don't lose all your hair or you don't lose both breasts.'
The advances are about allowing people to live better and fuller lives. It's not just about survival.
Kusmer:
Dr. Partridge also talked a lot about the mental health journey of the cancer patient. She said even mental health experts with cancer struggle.
Partridge:
I had a patient this past year, who is a psychiatrist. During a forum, she said, 'I'm a psychiatrist. I teach people how to cope. And all of my usual coping mechanisms are not working.'
And that's not an uncommon phenomenon.
Kusmer:
So one thing that surprised me, Shirley, is that you mentioned earlier that you weren't exactly relieved when you found out that you were cancer free. Can you explain that?
Leung:
Yeah, I was surprised, too.
After surgery they test the lymph node so that they know if I am definitely going to beat this cancer. And the doctors are eager, actually to declare you cancer free. And as a cancer patient, I mean, those are the magic words you wanna hear. You are waiting for that moment.
And yet I didn't feel cancer free because there's another C-word. Cured. And that can land just as hard.
And, I found out, it's just as complicated. And I remember talking to Dr. Partridge about, 'Why don't I feel better? Why don't I feel relieved? This was supposed to be amazing.'
She was the one that suggested, I see a therapist and Dana-Farber has a therapist who specializes with cancer patients. And so I went to see a therapist for the first time.
Kusmer:
So what did you learn?
Leung:
Well, I learned that it was pretty common for patients to feel this way. I also learned that I still equated cancer with death because of my grandmother's death, and I needed to be reminded that I am not my grandmother. It was hard for me to relax because of cancer.
And it was like having a ticking time bomb inside me. And I mean, how many of us know people who beat cancer only for it to return with a vengeance? And I was like, is that going to be me? And I didn't want to jinx it. I didn't want to think that I'd actually beat cancer.
Kusmer:
So one of the themes of this series is the ways that people who have cancer are treated differently once they do come out and tell people.
How did you feel about the way people talked to you and treated you and kind of talked about your cancer while you were going through it?
Leung:
In the beginning it was awkward. Still to this day, some people still ask me, 'How's your health?' And I'm thinking, 'It's been eight years.'
It comes from a good place, right? That they want to recognize that you had cancer, and it was a tough period for you. So I appreciate it. But you are treated differently. People won't talk to you the same way.
And it can be a little awkward now because so much of the narrative around cancer is like, 'You are a survivor. You are a warrior.' And I didn't feel like either one of those.
I felt lucky, really lucky, that I had a very treatable and beatable cancer. Yes, I had this major surgery, but as cancer goes, it was pretty good. But you can see that cancer has done something to my mind because it's taken me eight years to finally really talk about it.
Kusmer:
So how do you think having cancer changed you as a person?
Leung:
I wish I could say it's made me Mother Theresa.
When I'm having a bad day or if I'm fighting with my kids or they're upsetting me, I do think, 'Hey, I'm just really glad I'm still here and I can live through these moments.'
I also saw, and I think every cancer patient will tell you this, I saw the humanity.
I had so many friends, colleagues, and also, people I barely know who came out of the woodwork to support me, to bring me meals, to babysit my kids. I just saw a side of humanity that made me really hopeful and optimistic. And now when other people have cancer or go through some really tough period, I'm there for them.
Kusmer:
So your little boys from earlier in your story, that 4-year-old and 6-year-old, they aren't so little anymore. I think they're what, 12 and 14 now?
Leung:
They're taller than me!
Kusmer:
So what do you want them to know about cancer now that they're old enough to understand?
Leung:
For them, their first association with cancer, it won't be about death.
It'll be about Mom living. Now, one of my son's friends, their father passed away from cancer last year, so they do know that some people die of cancer, but I think it's important for them and that generation to know that cancer can be treatable, can be beatable, and it's a real testament to the advances of medicine.
They can actually say 'cancer' and not be scared. Maybe in their lifetime, cancer will be more like heart disease or diabetes. It's a disease that can be managed. It's chronic for some people. Cancer won't haunt them like it did me.
Kusmer:
Thank you Shirley, so much for sharing your story. I hope other people will reach out and share their own stories and stick around for the rest of these episodes.
Leung:
Anna, thanks for being on this journey with me. We hope you'll stick around for more episodes on the C-word.
Listen to more 'Say More' episodes at
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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2 days ago

• Boston Globe

Introducing ‘Endless Thread'

Follow 'Endless Thread' wherever you get your podcasts. The following is a lightly edited transcript of the June 19 episode of the 'Endless Thread' podcast. Shirley Leung: Hi, this is Shirley Leung, host of the 'Say More' podcast. I want to share something special with you this week. It's an episode of the podcast 'Endless Thread,' from our friends at WBUR. In this episode, you'll hear the story of Brooke Eby. She was 33 years old when she was diagnosed with amyotrophic lateral sclerosis (ALS), a neurodegenerative condition commonly known as Lou Gehrig's disease. As ALS progresses, you lose the ability to walk, chew, and eventually breathe. Patients are usually given two to five years to live, although younger patients often live for longer. Brooke has been documenting the progression of her disease on TikTok, often with laugh-out-loud humor. Ok, here's the show: Ben Brock Johnson: Brooke. Thank you so much for hanging out with us. Amory Sivertson: This is all prerecorded, so you may hear us stumble over things, questions that we wanna ask you, in which case we'll just do them again. Feel free to do the same if you start an answer and you want to say it differently. Johnson: And you're allowed to swear because it's a podcast. Brooke Eby: Noted. Sivertson: If that's your jam. Eby: It's actually like my New Year's resolution to do it less. So I'm trying not to. But like, I feel like that's such a cliche New Year's resolution that never really sticks, you know? Sivertson: No, I don't know anyone who's trying to swear less. I think in these times people are swearing more. Eby: Yeah, it's the inverse, perhaps. I'm Brooke Eby. I'm currently in Florida. I'm here for the winter, so right now it's like 80 degrees, which sorry if you guys are in the Northeast. I'm in Maryland for the summer, so I used to be in Maryland year round, and now that I live with my parents, I get to just mooch off of their snowbird lifestyle. Sivertson: Brooke Eby is 36 years old. Until recently she was living alone with her dog, Dr. Draymond Green, named for the basketball player Johnson: Last fall, Brooke and Dray moved in with Brooke's parents who mostly live in Maryland, but make like geese in the winter and head south. Brooke did not take the decision, to use her word 'mooch off' her parents, lightly. First, she consulted her over 200,000 followers on TikTok. Eby (clip from TikTok video): I need advice, people. Johnson: In this TikTok video from last summer. Brooke is outside. She's talking into her phone, which is positioned below her face. It has that look of an impromptu FaceTime call from a friend. Eby: I just need reassurance. Maybe I just need someone cheering me on that this is the right thing to do. Or like stories and pep talks of moving back in with your parents at the age of 35 is okay. This is a big regression feeling, so I don't know. I need reinforcement. Help me. Johnson: Brooke sent this message out to her nearly 200,000 followers at the time, more than 1,700 people commented. Sivertson: There was nary a negative response in the bunch. They were all like, 'It's a reconfiguration, not regression, and save money.' Johnson: Brooke has a lot of followers, thanks in no small part to her humor, which can be pretty edgy. Here's her doing a standup set for a crowd. She's joking about people who have Lou Gehrig's disease, also known as ALS. Eby (clip from comedy show): I wanna be clear, Stephen Hawking is an absolute legend, but did he make ALS cool? Johnson: Brooke's standup was a sit down affair because Brooke's in a wheelchair. For the past three years, Brooke has been living with a terminal diagnosis. And through almost all of it, she's been posting on TikTok. Eby (clip from TikTok video): What if I could walk and move again and I just became like an insufferable dance TikToker? My top is Old Navy. My pants are Amazon. My headband is Lily and my Life Alert Necklace is Sky Angels I've been on the exposing-people-faking-diseases-for-attention side of TikTok lately. I gotta say I'm a little offended that no one has accused me yet. Johnson: I'm Ben Brock Johnson. Sivertson: I'm Amory Siverston and you're listening to 'Endless Thread.' Coming to you from WBUR, Boston's NPR. Johnson: And today we talked to Brooke about making jokes through hard times. Brooke was not a naturally inclined social media star. What was your relationship with social media during your twenties? Eby: At the beginning of my twenties, Instagram was much more like, do you remember those extra-filtered pictures that we were all putting up? With the borders? That's what Instagram was. No one had stories. It wasn't very oversharing. And then I think it got more and more advanced later in my twenties, but I was normal on it. 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

Business Insider

14-06-2025

• Business Insider

I got breast cancer at 30. My treatment means I'll need to delay having kids for 5 to 10 years.

Shortly after my 30th birthday, I was diagnosed with hormone-positive breast cancer. I froze my eggs ahead of my partial mastectomy; treatment means I can't get pregnant for five years. I resent that I have to wait to build a family, but grateful for the chance at survival. When I turned 30, it felt like I was stepping into a new chapter. My partner and I had spent most of our 20s together and were finally in a place where planning for the future felt tangible. After a few difficult years, including the sudden loss of my father and several career missteps, I found myself longing for something joyful and grounding. I wanted purpose, direction, and maybe even a little stability. For the first time, I began picturing myself as a mom. Then I was diagnosed with breast cancer. I was shocked when I got my diagnosis I was diagnosed by accident. I had gone years without seeing a gynecologist. During a routine check-up, I casually mentioned this to my primary care physician, who offered to do a quick breast exam"just in case." That's when she felt a lump. I mentioned that I'd recently been laid off and was in between jobs, without insurance. She told me to reach out once I had coverage and she'd write a prescription for a mammogram. On the drive home, I felt a quiet but urgent instinct not to wait. As soon as I got home, I called her back and asked for the prescription. After a mammogram, ultrasound, and biopsy, I received my diagnosis: stage 1 estrogen receptor-positive, progesterone receptor-positive invasive ductal carcinoma. I couldn't make sense of what I was hearing. Nothing about me fit the narrative I'd grown up believing about who gets breast cancer. I have no family history, don't carry the BRCA gene mutation or any other genetic markers linked to increased risk. What was once seen as a medical anomaly is becoming increasingly common among women my age. My treatment plan included a partial mastectomy, four weeks of daily radiation treatments, and a daily hormone therapy regimen of Tamoxifen, prescribed for five to 10 years, depending on how my system responds. Tamoxifen, often prescribed to treat hormone-positive breast cancer, suppresses estrogen and simulates menopause. It comes with a parade of side effects, including hot flashes, weight gain, and unpredictable mood swings. I learned I can't get pregnant during my treatment Then came a very different kind of blow. Pregnancy while on the medication is strongly discouraged due to the risk of serious complications, including birth defects, miscarriage, and stillbirth. Beyond that, the hormonal surge associated with pregnancy before completing treatment could increase the likelihood of a cancer recurrence. I was scheduled for surgery just one month after my diagnosis. And two weeks before the procedure, my oncologist urged me to freeze my eggs. She explained that pregnancy wouldn't be advised until I was at least 35 due to the complications that could be caused by Tamoxifen — an age that, however dated or insulting it sounds, qualifies as a "geriatric pregnancy" by medical standards. I dissociated my way through a blur of hormone injections, blood draws, and invasive procedures that I barely had time to process. Thankfully, I was spared the financial burden, an immense relief amid the mental, emotional, and physical toll. In 2018, my home state of Connecticut became the first in the nation to require insurance coverage for fertility preservation in cancer patients. Delaying motherhood isn't my choice Though my treatment plan gives me the best chance at survival, it comes at a cost. I'm losing the ability to choose when I want to have kids, and now, I won't be able to have them before 35 at the earliest — possibly as late as 40. I resent that, like it or not, I'll have to be an "old mom" before I ever had the chance to be a "young" one. So far, my partner has been supportive. But I know he always pictured himself becoming a dad sooner rather than later. And when I see him play with our friends' kids, I feel a pang of guilt I can't always ignore. Now we're stuck in limbo while our friends move forward — throwing baby showers, assembling cribs, and posting first-day-of-school photos. I picture myself at preschool, the silver-haired mom whose knees crack at circle time. And I hate that I care. But I do. Then, there's navigating the dissonance between medical necessity and personal expectation. By my 30s, I expected to have it all figured out — career, family, identity. But my timeline was taken from me, redrawn by scans and blood tests, follow-ups, and daily pills. There's also no villain here, no one to blame. It's just a sterile, clinical equation guiding huge decisions about my future. I don't know what's next, but I'm still grateful I'm grateful to be here. I know many people diagnosed with breast cancer never get to consider family planning at all. But I also want to be honest about the loss, the uncertainty, and the weird in-between space where you're healthy but still healing, coping but still grieving the version of your life that never got to happen. I don't know what comes next. Maybe the family I envisioned is still on the way, just a little later than I thought. This isn't the path I planned, but it's the one I'm on. And for now, that has to be enough.

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