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Boston Globe
5 days ago
- Politics
- Boston Globe
Trump vs. Harvard. How does it end?
The following is a lightly edited transcript of the June 5 episode of the 'Say More' podcast. Shirley Leung: I'm Shirley Leung. Welcome to 'Say More.' With the moving of tassels and tossing of caps, the school year has come to a close at Harvard University and what a tumultuous year it has been. President Donald Trump has gone to war with the nation's most elite university. The White House has canceled a sweeping array of grants and contracts worth billions of dollars with no plans to let up. Then in late May, Trump moved to prohibit international students from enrolling at Harvard. They make up more than a quarter of its student population. Harvard has filed lawsuit after lawsuit to stop Trump from destroying what makes the university great. As we head into the summer, Harvard is at a crossroads with much of its fate hanging in the courts. Hilary Burns, the higher education reporter for the Boston Globe, is covering it all. So Hilary, we're taping this on Friday, May 30th, a day after Harvard's graduation. How do you think graduation went this year? Hilary Burns: It's really amazing the difference between last year's commencement and this year's. Last year, Alan Garber, president of Harvard, was not popular. He had just succeeded Claudine Gay and had been in the role for a few months. When graduation came, students were really unhappy with the administration's handling of the pro-Palestinian encampment that had been in the Harvard Yard. So, there was a massive walkout of hundreds of graduates. The people were really not happy. Garber sat there stoically with a straight face as the protest happened, and then commencement proceeded. This year, it was very different. Alan Garber is a celebrity at Harvard right now. The community is rallying behind him. He walked through the commencement ceremony towards the stage with the other deans, and there was a standing ovation before he even said a word. He also struck a tone of defiance, which is noteworthy, coming from this soft mannered man. Alan Garber (clip from 2025 graduation speech): Welcome members of the class of 2025, members of the class of 2025 from down the street across the country, and around the world. Around the world, just as it should be. Leung: What I find so remarkable about this year is that we all thought the previous academic year was seismic. With all these campus protests throughout the year, the resignation of Claudine Gay, Harvard's first Black president after only six months at the helm, does that chapter now feel almost quaint compared to the chaos now? Burns: I certainly didn't anticipate the higher education beat becoming this busy when I signed up for the role, I'll tell you that. But I think that I see it as very connected. The current academic year, the issues and the problems and the escalation between the Trump administration and Harvard really started on October 7th, 2023. We heard that the conflagration that erupted on campus after October 7th led to the resignation of Claudine Gay. Those were the tremors that led to this current moment. Harvard became the symbol of everything the Trump administration is against. They say that it's this far-left institution, that it's a hotbed of antisemitism. All of their buzzwords in one is 'Harvard.' It's become the perfect punching bag for them to go after. So a lot of our coverage last year was touching on issues that are now right in front of us. It's very connected. Leung: So, I want to go back to the beginning of the academic year, around September 2024. What was it like when students returned? Were there still protests on campus? Burns: Good question. So last summer, administrators across the country, not just at Harvard, were scrambling to revisit their rules and regulations around protest and speech on campus. There were restrictions across the board when everyone came back to campus in the fall semester. Harvard would probably say they clarified their rules. Other campuses adopted completely new rules and really buckled down. There were not widespread protests in the fall semester. There were very few protests and we saw protestors getting in trouble much more often. There would be people out there writing down their names, filming every protest, and they were trying to follow their own rules, because that was a big criticism that these campuses were letting things get out of hand and they were not enforcing their own rules. So, the fall semester was pretty quiet. It was very different from last spring. We kept talking to the protestors and they kept saying, 'Oh, we're working on something, we're trying to figure something out.' And they did have a few demonstrations here and there, but the election was really the turning point in the semester. The atmosphere shifted at that point. Leung: One of the big themes of this academic year at Harvard, and this is after President Trump returned to the White House, is Harvard leading the higher education resistance. There's something of an irony here, because last year, Harvard decided it would adopt a policy of institutional neutrality, meaning it no longer would comment on public matters that don't relate to their core function. Of course, Trump going after Harvard affects their core function in a big way. So are you surprised how much Harvard is standing up to Trump? Burns: I was a little surprised, because based on what we saw at Columbia, I think Harvard had no interest in being the face of any resistance movement against Trump. That was not on their wishlist, not something they wanted to do. I think everyone at Harvard was kind of relieved when Trump was picking on Columbia so much earlier in the year thinking, 'Okay, maybe we'll just quietly keep working on the reforms that we have going and strengthening our campus, working on civil discourse and how to have difficult conversations with one another.' So they were doing that work quietly and trying to just keep their heads down. And of course, the Trump administration turned their attention to Harvard. That was the big question: Will Harvard stand up? Or will they follow in Columbia's footsteps and try to come to some kind of deal with the Trump administration? And most everyone I spoke to thought that Harvard would follow in Columbia's footsteps and would not stand up to Trump. So when they did receive that demand letter in April from the Trump administration that just had so many egregious demands that they felt infringed on academic freedom, leaders of Harvard decided they could not engage with this. They could not make a deal under these terms, and they resisted. And that, was a surprising moment. Leung: We're seeing and hearing a lot from Harvard President Alan Garber. He was Harvard University's provost up until he got promoted to president. He's a doctor by training. Up until then, he's kind of kept a pretty low profile. But now, he's on the television, he's on the radio. He's getting a standing ovation at graduation. How do you think Garber is navigating this moment? You had a chance to sit down and talk to him, right? Burns: I did, yes. We sat down with him at the end of April in his office, and he was very calm. That was my biggest takeaway, how calm he was despite just the onslaught coming his way. He is a very mellow person from everyone we've talked to. He's mild mannered, and we've talked to some people who say that is really good for this moment. That if there was someone who was very temperamental and went off, that might escalate things. And Trump is looking for a fight. We talked with an attorney who worked with Trump previously who told us that nothing gets Trump going more than someone picking a fight with him. So, once Harvard stood up and said, 'We cannot acquiesce to these demands that you're giving us.' That just made the Trump administration double down even more. Now every time Alan Garber speaks publicly, I think it creates this deep irritation inside the Trump administration that he has this rallying cry behind him. Our reporting is showing that all of this support behind him is making the Trump administration very annoyed. Leung: When it comes to attacking Harvard, the Trump administration is flooding the zone, right? They're canceling grants. They're revoking the visas of international students. They're threatening to take away Harvard's tax exempt status. Harvard is the richest and most powerful university in the world. So how vulnerable is it really? Burns: That's something we spent most of the week reporting out of. This is the wealthiest university in the country, and they do have vast resources. Of course, Harvard is always quick to remind folks that most of their endowment is restricted and they're legally obligated to use the donations as the donor asked them to when they gave them the gift. So it's not just a rainy day fund that they have, sitting right there. However, they do have vast resources. And if any institution can take on the Trump administration, it is Harvard. That doesn't mean they're going to get through this without pain. They're entering a period of austerity. People inside Harvard are bracing for layoffs. Research projects are being canceled or moved to other universities. This is not what Harvard had in mind when they were doing their five and 10 year strategic planning a few years back. This is going to be really painful for them. But, our reporting shows that it seems like Harvard can outlast the Trump administration. I think they're optimistic that they can outlast him. There is also a last resort we learned about this week. I talked to a Harvard graduate who's a law professor at University of California Los Angeles who was telling me that there is this kind of obscure law that Harvard could go to the Massachusetts Attorney General's office and say to them, 'We are facing an existential crisis. We really need to lift some of the restrictions off our endowment, so we can use it to defend Harvard against the Trump administration.' If the Attorney General's office agreed, they could go with Harvard to court to argue for these restrictions to be lifted. So it's pretty rare for universities to go that route and it's unclear if a judge would agree with Harvard. But, this attorney thought that they would have a really strong case as a last case scenario if they did need more funding. Leung: Last year donors and alumni were upset with Harvard over rising campus antisemitism and Claudine Gay's plagiarism scandal as a scholar that helped ultimately lead to her downfall. Has anger subsided or are tensions still simmering? Burns: There are still donors, some big donors, who are still really upset with Harvard. Bill Ackman is probably the most outspoken of these donors, and he really believes that Harvard should have made a deal with the Trump administration. He says that the Trump administration is asking for reasonable measures. Maybe they're overreaching in their tactics in how they're asking, but Ackman believes these are reforms that Harvard must do to save itself. Even some of the harshest critics of Harvard last year, besides Ackman, have changed their tune. They have said, 'Well, Harvard actually has made a lot of adjustments that we were asking for.' They launched this antisemitism task force that came out with a pretty searing report a few weeks ago. They adopted a definition of antisemitism, even though a lot of scholars said that it went too far to suppress free speech. They've also made a lot of progress in the overall environment for discourse on campus. So even some of the big donors who were really upset last year have told us that they are giving again to Harvard. Leung: Back in April, Garber penned this very defiant letter to the campus community, making it very clear that Harvard would not fold to any of Trump's demands. Basically it sounded like Trump wanted to put the university in receivership, of some sort. Do you think there's any negotiation going on, even privately? The Boston Globe editorial board recently urged conservative Harvard alums like Bill Ackman, Steven Bannon, and Robert F. Kennedy Jr. to try to broker peace or some kind of truce between Harvard and the administration. Do you think any of that is happening behind the scenes? Burns: None that we can tell. Our latest reporting shows that conversations have completely broken down. Trump is out there disparaging Harvard, often in public, in pretty intense statements and remarks about them. He was quoted saying Harvard is 'getting their ass kicked' this week. And he's not wrong. This is really painful. What they're going through right now, they have cut off a critical source of funding. The threat of international enrollment at Harvard is an unthinkable threat to the institution and international enrollment is about a quarter of the student body. Those international scholars contribute so much to the academic vitality of the institution. It's really what makes Harvard Harvard , as Garber said recently. Harvard's enduring a lot of pain, but there's no signs that we can tell that they are talking right now. It's really a question of, can Harvard outlast this administration at this point? Leung: Let's sear in on the status of international students, because that's what makes Harvard a really special place, the ability to draw the best and brightest students and researchers from all over the world. Even if Harvard wins its lawsuit, to stop the administration from preventing international students coming to Harvard, is the damage done? Would international students even want to take the risk of trying to study in the United States, especially because Harvard has a target on its back? Burns: We are hearing a lot of concern about that. I think right now we're hearing people saying, 'What parents would want to send their child to the US based on what has been happening here?' We hear anecdotes of people saying, 'Will my child get a parking ticket and then end up being detained because of something they said on social media?' There's just so much risk that academics I talk to are really worried about. We'll see students opting to go study in Australia or the United Kingdom or any number of countries instead of the United States. So, it's something that we'll be watching closely. We just don't know what kind of chilling effect the actions and rhetoric as of late will have. Leung: What do Harvard's actions this year tell us about the changing shape of elite higher education? Hilary: It is interesting right now. The Trump administration is still working on its vision for higher education. They haven't laid out a concrete vision. It feels like they're throwing a wrecking ball at higher education. Several questions I have are, 'What is the plan? Where will there be growth? Do you really wanna hurt all of American higher education? Where do you want it to change?' Based on conversations I've been having with folks at The Heritage Foundation and others close to the Trump administration, they tell me that there are places around the country that they think are doing better than some of the schools in the Northeast that they believe are just too far left, in their mind. However, they think that higher education in America is not where they need it to be with diversity, equity, and inclusion. It really comes down to DEI. They want to pull out DEI from all academic institutions. It will be really interesting to see how that plays out, because they're clearly using all the levers available to them to push schools to align with their worldview. So, we'll see how schools navigate that space. We are seeing more and more DEI offices being renamed, shut down, or resources are reallocated throughout universities. I expect that will only continue. Leung: Why is the Trump administration still so focused on rolling back diversity, equity, inclusion? Are they just using that to destroy higher education or are they really just going after DEI? Burns: When I ask these folks what this is really about, they really believe that there is an anti-white bias at these institutions. It's illegal in their view and they want these schools to enforce civil rights laws. They believe that DEI offices create this ideology and this mindset of anti-white bias. That's really what it comes down to. Leung: What are you watching going into the summer? Will Alan Garber still be president by the fall? Will Penny Pritzker, the senior fellow at the governing board of Harvard, still be around? It seems like there are a lot of heads rolled in higher education during these times. What are you looking for? Burns: Even before Trump took office, it is pretty remarkable that Republicans have knocked down four Ivy League presidents in 18 months. So will Alan Garber have a job moving forward? The Harvard community is certainly behind him and Harvard makes decisions for Harvard as of right now, so I don't think he'll go anywhere. I think there is a lot of support behind him. We are reporting that the Trump administration is calling for him and Penny Pritzker to resign. I haven't seen any indication that will happen, but I guess anything could happen. I think it's so interesting seeing so much disruption in this sector that really has always done business the same way. So, I'm watching to see how schools are navigating this moment of immense uncertainty. And of course, at Harvard, we're waiting to see what shoe drops next and how they'll continue to navigate this really impossible situation they're in with the Trump administration. Leung: Well, Hilary, I know you are super busy. There's so much going on with Harvard and all of higher education, so thank you for coming on. Hilary Burns covers higher education for the Boston Globe. I hope you get some kind of summer break. Burns: Yeah, maybe. I'll chase my toddler around the beach a couple times, but I think there's much to do right now in higher education, so I'll stay on it. 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
Boston Globe
31-05-2025
- Health
- 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
- Health
- 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
Boston Globe
15-05-2025
- Health
- Boston Globe
The C-Word: She was a cancer doctor. She hid hers for 10 years.
The following is a lightly edited transcript of the May 15 episode of the 'Say More' podcast. Shirley Leung: Welcome to 'Say More' from Boston Globe Opinion. I'm Shirley Leung. This is episode 3 of our series 'The C-Word: Stories of Cancer.' Today we start with a question: How far would you go to keep a secret for someone you love? Would you risk their life? Support their lies until it was too late? Barrett Rollins did that for his wife, Jane. Jane hid her advanced breast cancer until she collapsed at work, unable to breathe. And here's the wrinkle: They're both world class oncologists. Now, what would compel two cancer doctors to keep a secret like that? The reasons are complex — and mystifying — and 10 years after Jane's death, Barrett still wrestles with them. Barrett and Jane worked together at the Dana-Farber Cancer Institute here in Boston. He recounts Jane's tragic story in a recent book called 'In Sickness: A Memoir.' I asked Barrett the question that had been bugging me since I read the book: How? How did Jane hide her illness for so long? Barrett Rollins: That's the critical question, isn't it? How could she have hidden something so prominent from her husband and from everybody else and from all the doctors that she worked with? I think it's important to understand that this book is not just a book about cancer and somebody's cancer journey, it's also a book about a marriage. Barret Rollins and Jane Weeks in a 2013 photo. Courtesy of Barrett Rollins Our marriage, which lasted for 30 years, was complicated. Maybe it was more complicated than some other marriages, but all marriages I think at some level are complicated. We had about 20 years of a really, really great marriage. And then all of a sudden, 20 years in, things changed. Jane became a little more withdrawn, all intimacy stopped. After a while, it just became easier for me to sleep in another room, and I never really understood why. I had to make a decision: Do I stay with her? Do I object? Do I leave? I was just completely in love with her. We had a wonderful relationship in every other domain, so I decided to stick it out. It's a complicated story as you know from reading the book. About five years after that, Jane unwillingly revealed her diagnosis. Leung: This is where she collapsed in the bathroom. Tell that story. Rollins: We had a pretty set routine. We worked really hard during the week. I was still working on the weekends, but Jane just totally shut off on the weekends and she would spend most of the weekends in bed. We were in our own little bubble, very hermetic. I was puttering around on a Saturday morning and I suddenly heard her call out from the bathroom and she said, 'I need you.' I knocked and came in and I was confronted with this sight of my wife lying on the floor of our bathroom. She was dressed in her usual Saturday outfit, which was a long caftan dress, sort of from her neck to her toes, but it had been slightly unzipped and underneath the caftan, on one shoulder, was a towel. I could see that the towel was beginning to be soaked in blood. I said, 'My God, what's happening?' And Jane said, 'I'm dying.' Very matter of fact, 'I'm dying.' And I said, 'What are you talking about, you're dying.' She said, 'I have breast cancer. It's starting to bleed and I'm dying.' I said, 'Well, you know, I gotta call 911,' and she said, 'Don't.' And I said 'Don't be ridiculous.' It ended up being a shouting match. She ultimately said, 'If you call 911, I will never forgive you and I will never speak to you again.' Leung: She would rather die on the bathroom floor? Rollins: Absolutely. And she made it clear. Here's where my accommodating personality accommodated. I sat down, she had brought the newspaper in with her. I said, 'What do you want me to do?' She said, 'Well, just read to me.' I can still remember sitting on the toilet seat with her on the floor. I read most of the first section of the New York Times to her. How pathetic is that? This was while she's telling me that she's dying, but of course she wasn't dying. The bleeding stopped after about 30 to 45 minutes. She checked the wound. She saw she wasn't bleeding, and said, 'Okay, everything's fine. You can go now.' I said, 'Well, I can't go now. We have to talk about this.' 'We're never gonna talk about this.' That's what she said. And again, 'If you bring this up, I will leave you and I will never forgive you.' So for the next four or five years, I was complicit in her desire to hide what was going on. I was complicit to the extent that I could convince myself there was no problem. I really kind of believed that everything was fine until another medical emergency, about five years after that, revealed her disease to the world. Leung: You spend so much of the book wrestling with Jane's actions and decisions, and you write that denial is too simple of an explanation. Can you talk a little bit about why you think Jane didn't want anyone to know she was sick? Rollins: One thing is, on the sort of personal level for Jane, she had a phobia about medicine. In all the years we were together, I never saw her go to the dentist. She never had a mammogram. She never had a colonoscopy. She never had a primary care physician. There was something in her that was phobic about medicine. There are just ironies upon ironies here, right? Because she decided to go into medicine. And not just anything, she goes into cancer medicine. Leung: And Dana-Farber is known for its research for finding medicines, to cure cancer or treat cancer. Rollins: Absolutely. Not only that, but for screening and prevention, all the other things. She's a first responder that runs to the fire. She runs into the building. There was something in her makeup that made her want to do that, probably because she was disappointed in herself because of her phobia. So that's one thing, put that in one category. The other thing that Jane recognized, which you may resonate with, is that when somebody gets a diagnosis of cancer, all of a sudden it's like flipping a switch. People treat that person differently. Leung: Yep. Rollins: There's this patronizing, 'Oh, are you okay? What can I do for you?' It was very important for Jane to be seen as strong. She saw that when people at Harvard Medical School are perceived as weak, they lose all their advantages. And she was really worried that everyone's attitude would change if anybody knew she had cancer. And then there's this other thing about people with cancer. They're told, not so much by their physicians, but they're told by society in general, now that you have cancer, your job is to be a fighter. You have to fight this thing, fight it day and night. And fighters are winners. There's an aspect of that that is absolutely wonderful. But what Jane objected to, was it creates a false situation in which the person with cancer, because they're now fighters, believe they have agency. And they really don't. But if they believe they have agency over this because they're fighting, and then through no fault of theirs, their treatment doesn't work or the cancer that goes away comes back, what's the implication? The implication is you've lost the fight. You're a loser, you didn't fight hard enough. Which is very, very destructive. I think cancer patients have agency to the extent that they can make choices about whether or not they're gonna get treatment. And in that respect, Jane retained agency, I think she used it incorrectly, but she retained it. And then the final thing is, and I wish it was all about this because this last thing is actually rational whereas I think most of what Jane did was irrational, Jane's research helped to establish the notion that people, not just patients with cancer, care more about the quality of their life than the quantity of their life. Over and over again when you survey people, they care about how they're living. They would trade length for quality over and over again. Even in the last year of her life, while she was bed-bound and unable to do anything, she published a really important paper in the New England Journal of Medicine about this. At that time, 10 or 12 years ago, metastatic breast cancer was not curable. She knew she couldn't be cured and she knew just how toxic chemotherapy was in those days. It's one of the reasons she stopped seeing patients very soon after her training was over. Her patients loved her, and she loved taking care of patients. But this notion that she was going to make somebody deathly ill by writing an order in a chart, she couldn't stand that. She didn't want that for herself. Now that was the most rational thing, but all these other things were also there too, and they were pretty irrational. Leung: When reading the book, I got really mad, at first at Jane and then I got mad at you, really mad at you. Jane collapses, you don't call 911 then you just slowly let her die of breast cancer. How did you do that? How did that happen? Through the process of writing this book, you must have thought about that, right? I don't know if you've thought about how that happened. You wouldn't advise anyone to do that? Rollins: Oh my God, no. You know, you are just the latest in a long line of people who've said they're really mad at me. I've sort of struggled to understand that, because it's complicated. I wrote this book and I hadn't decided to publish it right away, but I just felt it was important to write it so that I could try to understand a little bit better what had happened. But then as I struggled with whether or not to publish it, I began to feel incredibly guilty about even thinking that because here's Jane who spent a decade hiding everything and what right did I have to display it all? It just felt like an incredible betrayal. So I was already mad at myself, but not for the reasons you were mad at me. It took me a while to understand that other people were mad at me because I didn't act the way… Leung: You had a responsibility. Rollins: I absolutely did. I had a duty to act, as her husband. Leung: And you're a doctor. Rollins: Thanks. Can we get some of the reporters to come in and pile on? But you're right, you're absolutely right. And this is what I still feel incredibly terrible about. I haven't resolved this, other than to understand it is in my nature to be accommodating. Not just accommodating for my own good, but I really thought I understood what it took to make this endlessly fascinating, charismatic woman, happy. I had spent decades doing that already. Another way to think about my duty, is my duty was to make her as happy as I could. In a convoluted way, allowing her to die on her own terms, made her happy. So, that's another way to think about this. I was fulfilling that responsibility. Barrett Rollins poses for a portrait at his home in Boston on November 10, 2022. Craig F. Walker/Globe Staff Leung: Right, I did come around. It was like an emotional rollercoaster. First I was mad at Jane, then I was really mad at you. But in the end, it's Jane's life, it was her choice. So I was less mad at you at the end because, right, it was her choice. I also felt like your book laid bare that she made the wrong choice. Rollins: She did. I have talked to people who are, let's say, in the Robert F. Kennedy Jr. camp, and I've heard somebody say, 'This Harvard cancer doctor decided not to get treatment, so nobody should get treatment.' I actually did have a conversation with one person about this and said, 'That's nuts. My book shows you that it was the wrong decision.' Leung: That's what I took away. If you do what Jane did, then you'll suffer more than you have to. She could still be alive today given the advance in medicine. Rollins: That's possible. At the very least, her life would not have been so miserable. I write in some detail about what it took every single day to do the dressing changes; it was so complicated. It was like the invasion of Normandy, every day. She was miserable because this thing was bleeding. It got infected. It smelled bad. If she had gotten treatment, that probably wouldn't have happened. Leung: So how unusual are 'Janes' in the world of oncology? The patients who are in denial and refuse treatment. Rollins: It's not that uncommon. All of us in oncology have, in the back of our minds, a small cadre of patients that we saw who would come in with long, neglected cancers of various sorts because of fear or their own phobias. Once the book was written, I started getting comments and emails from people saying, 'Thank you for writing this. It reminds me of when my mother did the same thing, or reminds me of when my cousin did the same thing.' There is a large population of people out there who are doing this, and I think it's one of the deficiencies that we as oncologists have lived with. We need to think more about how to reach out to people who don't want to be seen and think that their treatment is gonna be worse than their disease. There will be people who are stubborn and delusional like Jane who thought the treatment was worse than her disease, but I'm here to tell you it really wasn't. There are other people who I think can be convinced, if we do it the right way. Leung: So do you think people are more scared of cancer than other diseases and that's why they put off treatment? Rollins: I do. I think it's pretty clear that people are scared of cancer. Leung: And why is it so scary? Rollins: Well, I think there are a couple reasons. One is a historical reason. People are scared of what they don't understand. If you think about Tuberculosis, for example, this was a disease that was the staple of European literature for a couple centuries. If you think about what happens, people just suddenly start losing weight. They become listless. It's kind of just tailor-made for some kind of romantic story in which Tuberculosis is a visitation for some sin this person committed either in this life or a previous life. It wasn't until the discovery of the bacteria that causes Tuberculosis that you had a rational way to think about it. So nobody talks about this anymore. Cancer was the same sort of thing. For centuries, nobody knew what caused cancer. It was this mystery, also of visitation, and it was organ specific. There are all sorts of myths that you can come up with about why someone might have developed cancer. We had no treatment and, again, for which we didn't understand the origin. That is really changing now with discoveries that really show what the cause is, treatments that are directed at that cause, but that's gonna take a while. But I think the other thing that's unique about cancer is the way it distorts the organs that it involves. It directly impacts bodily autonomy. As we go through the world, I think that we imagine ourselves as intact entities that interact with other people. Cancer attacks that intactness. It creates lumps in your breast, it creates broken bones, it creates a stroke-like syndrome if you have brain cancer. There are things that it does that destroy the sort of compactness and wholeness of the body, and I think that's fundamentally terrifying to people. I think a lot of people who either have cancer or have a certain turn of mind, can be scared to death that's gonna happen to them. Leung: You studied medicine for decades before you encountered this experience with Jane. You write in the book about changing the dressings on her chest. It was really difficult for you to be on the other side, to be the caretaker and to be so vulnerable to a disease. How did that experience change your perspective as a doctor? Rollins: The whole experience changed my perspective, but I'm thinking particularly about treating Jane's tumor. I think your listeners who haven't read the book need to know that the right side of Jane's chest was completely replaced by this football-sized mass. It was misshapen, parts of it were dying. It turned black. Other parts were infected and there were parts that were bleeding all the time. These kinds of things always bothered me, even when I was in medical school. Leung: Squeamish to blood? Rollins: Not to blood, not to blood. This is very specific. Blood didn't bother me and people who were very sick didn't bother me, but there was something about big tumors that were decaying and destroying somebody's body that made me sort of reach for the rails because I was afraid I was gonna faint. The first time I saw this was the day Jane had this event. When we were at Dana-Farber, we always had lunch together. We were on our way to lunch and she just collapsed. She'd had a huge clot, traveled from her legs up into her lungs. When we got to the emergency room, they took off her clothes and there was this thing which I had never seen before. I sort of looked at it from a distance and I thought, 'Oh, this is what she's talking about.' My insight into this is that people can ultimately handle anything. There's nothing special about me. I took care of her for a year. I helped the visiting nurses change the dressings for a year. I think people should take heart in knowing that I, a kind of neurotic otherwise normal guy, could eventually step up and do all this stuff when necessary. And I think people are doubting their ability to do that. It should take some strength from the fact that I could do it and other people do it all the time. We should provide support for them, but people are strong enough to do this. Leung: Also, it was an incredible act of love, a final act of love to take care of her the way you did at the end. Rollins: I think there's another lesson here. It's a negative lesson. Jane and I had this hermetic relationship. Jane, she kept her family at a distance. There's all kinds of psychodynamic stuff going on there, but she had a sister and a brother and a mother that she just, long before she got sick, kept at a distance. Leung: She didn't even tell them for a long time that she had cancer. Rollins: No, she forbade me to tell them. She kept my daughter at a distance. We didn't have many friends. I can't speak for her, but from my experience, her last year would've been very different if I had family support. So there's another negative lesson, don't try to do this by yourself. Leung: That was one of the things that is so memorable from my cancer journey. Once I told other people and family that I had cancer, I had this incredible outpouring of support. You didn't experience that during the time Jane had cancer. But, I had meals, I had the newsroom put up a collection meal train. People came over and babysat my kids for me. My mom flew in from California and took care of me and did the laundry and helped me change my dressings. Rollins: That's so great. So that's the way it should be, right? Leung: Yes, that's the way it should be. Now when I know other people have cancer, I pay it forward. I pay it back. I then provide the meals and support. It's actually this incredible experience. You feel incredibly human and alive. It's amazing. I feel bad you didn't get to experience that because if there's a silver lining to cancer, it's to see humanity come out. Rollins: I totally agree. Once you can blow past the patronizing stuff we talked about earlier, what you get is really authentic and caring support. It is this sort of silver lining. If you have to go through this, and you know we are all doomed to go through something, there's that aspect of it that you can look for. Leung: What do you want people to take away from reading your memoir about Jane's story? Rollins: Well first, I don't want them to be so mad at me. That's selfish, I know. Leung: I'm not mad at you anymore. Rollins: Okay. Okay. No, I think there are a couple things. One is that people are infinitely diverse. Everybody's different. Everybody's response to what may seem like a common disease is going to be different. We as physicians and also as family members, I hate to use this phrase, have to sort of meet people where they are. I think Jane is an extreme example of this. If I had been more skillful, I might have been able to let her have the autonomy she was seeking, but in a way that didn't make her life worse. So I think that's one lesson. Another lesson is that we are capable of helping. Don't believe that you're not strong enough to take on something that seems to be horrific. I couldn't have had a nightmare worse than what I had seen when Jane finally collapsed. Yet, we got through that. We had a final year. I think those are the main things. And then the last thing is we should also be thinking about those who have survived the deaths of the people they loved. Those survivors have been touched very deeply. They're not the same people they were before this happened. This was really one of the reasons that I ended up publishing this book at all. I felt very guilty about revealing Jane's secret. I talked to Jane's sister, who as it turns out, is an author, and I gave her a copy of the book. She said she was mad at me, but then she said she liked it. I said, 'Well, can I publish this? It just doesn't seem right to be able to do this.' And what she said I think was really important. She said, 'For a long time, this was Jane's story. But now it's your story and you can do whatever you want with your story.' Leung: Barrett Rollins is a professor of medicine at Harvard Medical School and a longtime cancer researcher. His book is called 'In Sickness: A Memoir.' He also has a new book called 'First the Patient,' about another fascinating medical story. 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
Boston Globe
08-05-2025
- Health
- Boston Globe
The C-Word: Dr. Siddhartha Mukherjee wrote the book on cancer
The book shows that if there's one constant in cancer research, it's that it's always changing. On this episode of 'The C-Word: Stories of Cancer,' host Shirley Leung talks to Mukherjee about how his time living and working in Boston changed him as a doctor. They discuss the hopeful progress we've made in curing cancer — and the challenges that persist. The following is a lightly edited transcript of the May 8 episode of the 'Say More' podcast. Shirley Leung: Welcome to 'Say More' from Boston Globe Opinion. I'm Shirley Leung. This is episode 2 of our series, 'The C-Word: Stories of Cancer.' Today we're talking to the man who wrote the book on cancer. Siddhartha Mukherjee is the author of 'The Emperor of All Maladies.' It covers the long history of this disease, why it haunts us, why it's so hard to beat, and why there's hope. Siddhartha, who goes by Sid, learned everything he knows about cancer while working in Boston as a young doctor. I traveled to New York to meet him at his lab at Columbia University Medical Center. I asked him about the title of his book and why, when it comes to disease, cancer is the emperor. Siddhartha Mukherjee: At the end of the book, I realized that this was a disease that had occupied our brains and minds and bodies for centuries in a way that really no disease had. This was the thing that we had battled for so many years and have continued to battle. In the 1950s, people would say, 'What do you wanna be when you grow up?' And people would say, 'I wanna be a rocket scientist.' In the 1960s and 1970s, if you asked the same question to a young man or woman, they would say, 'I want to be a cancer doctor.' There's a spirit in which this has reigned so large over our imagination that it seemed like of all illnesses, this was the emperor, the most important and perhaps the one that we need to defeat. Leung: It's been 15 years since your book has been out, and many of the meaty chapters in the book were about research breakthroughs and lifesaving treatments in the late 1990s and early 2000s. Are those chapters out of date now? Mukherjee: We'll be glad to know that in September we're publishing an evergreen update with five new chapters. I'm writing them as we speak, and directly after this interview, I'm going to my publisher to start putting them down on real paper, editing them and so forth. So the book will become evergreen again in September. There's a new release called 'The Emperor of Maladies: Part 2,' which is, of course, a release of the new chapters with all the updates from that. Leung: When we start to read those five chapters, will it show how fast moving the research is or what will it show? Mukherjee: It'll show a mix of things. It'll show the disappointments. 'The Emperor of All Maladies' was not written as a kind of a triumphalist history. It was written as a kind of process of science. And the process of science involves defeats, it involves disappointments, it involves griefs. It'll show all of that. Leung: When you finished your book 15 years ago, did you foresee laying out these five new chapters? Was that a surprise to you or did you see that coming? Mukherjee: Some of it is a surprise, some of it was in process. Immunological therapy for melanoma and other cancers was in its early infancy. Some of the new chapters on breast cancer are amazing. Some of the new chapters on other cancers are just really different. So it's a mix. Some of these were early in development, some of these were late in development, but all of these are great successes, great surprises, and I think there's no way to describe them aside from the fact that we are fortunate to have them. We are fortunate to have these researchers dedicate their lives, and we're fortunate to have patients enroll in trials to get these treatments into real life. Leung: There's been a lot written about younger people getting cancer. Usually you think of this as a disease of very old people, right? But now people are getting cancer in their 20s, 30s, and 40s. I know people in my own life who had cancer in their 40s that have passed away. At the same time, there are all these new treatments that you've just laid out. I'd never heard this term before, but I love it. This idea of the Red Queen hypothesis. It's this idea about an evolutionary arms race where science has to constantly keep up just to stay in the same place. Talk more about that. Mukherjee: The idea of the Red Queen is that we never conquer a disease. We are always in equilibrium with the disease. It's a kind of game of chess. The disease plays its game, we play a game, and we figure out how to resolve these two games. A lot of the young cancers that we're diagnosing are because of better diagnostic technologies. But that's not all, habits have changed, people have changed, carcinogens may have changed. Overall, if you look at the data, the rate of cancer deaths in the United States has been decreasing pretty consistently overall. The decrease is important and striking. Over the last 15 to 20 years, it's decreased almost from, I'll just give you a kind of rough number, 150 per a 100,000 to 110 per a 100,000. That's a big number. That's a big, big, big, big, big number Some cancers are changing, some are on the rise, some are on the fall. But overall, the effect has been positive, it's been enormous, and it's been underestimated and under-reported. Leung: So would you say we're winning this medical chess game then? Mukherjee: Winning is a complicated word. Your definition of winning might not be my definition of winning. But are we moving in the right direction? Yes, we are moving in the positive direction for many of the common cancers. Some we're still struggling with. Pancreatic cancer, we're struggling with. Some are increasing, and we don't know why. But overall, the direction is not negative, but positive. Leung: So one of the things you're really good at is explaining to non-doctors why cancer is so hard to treat, compared to other diseases. So what makes it so tricky? Mukherjee: One of the things that's very tricky about cancer is that cancer arises from your own cells. It's not an external invader. It's not like a bacterial infection. It's not like a viral infection. All the viruses can cause cancer, but really, ultimately, it's your own cell that's gone wrong. And the differences between a cancer cell and a normal growing cell are pretty subtle. One of the things that we struggled with is, 'How do we kill a cancer cell without killing a normal cell?' Because the differences are so subtle. So what are the distinctions? How do we find the particular vulnerabilities of a cancer cell that are not the same as the other cell? When you think about standard chemotherapy, not modern chemotherapy, it makes you think about killing all growing cells. You lose your hair, you lose your skin, you lose your immune system, things that grow. That's because we are targeting growth in general, but growth is important for every cell. Growth is important for our bodies to maintain ourselves. The real trick in cancer is to be exactly discriminating between the normal and the cancer cell. That's a very hard trick because they're very closely related to each other. One arises from the other because of mutations, but also one arises because of subtle mutations. It's not like the whole cell turns into a monster. It's very particular that cancer cells grow while normal cells don't grow. Leung: I'm so glad you brought that up, because I think that's one of the reasons why it makes cancer so scary is because it comes within ourselves. We are the enemy. So you made a distinction between modern chemotherapy and standard chemotherapy. What does that mean? Mukherjee: More and more standard chemotherapy was directed at saying, 'Let's kill all growing cells.' If there's collateral damage to normal growth, it's just collateral damage. That's why chemotherapy was so toxic. Modern chemotherapy is about trying to find out what is precisely different about cancerous growth versus malignant growth versus normal growth. We found that there are different cancer cells that use different metabolic pathways. They use different ways of growing. That's why with modern chemotherapy, we want to think it's less toxic, it's more directed, it's more targeted, it's more personalized, and has been, generally speaking, less poisonous than the chemotherapy devised in the 1950s and 1960s. Leung: It used to be you think of someone on chemotherapy, they lost their hair, they lost weight. But now people go through chemotherapy and they have their hair. Mukherjee: Hair is just the beginning of it. People with myeloma are living tens of years, twenties of years and surviving. They're going to work, they're being members of society, and they're enjoying their children and grandchildren in a way that they weren't before. And that's, again, because we found these Achilles' heels, and these Achilles' heels are very important because they're exactly that. They are ways in which cancer cells resist the normal controls of growth. They are able to grow despite those normal controls. Leung: It seems like it's huge for quality of life, for patients. Mukherjee: Quality of life, but ultimately survival. Leung: I want to bring our conversation to Boston. You went to Harvard Medical School, you did your residency at Massachusetts General Hospital. I think you did a fellowship at Dana-Farber Cancer Institute, as well. You really spent your formative years in Boston before heading to Columbia. So what do you think about your time back in Boston? And what did you learn about cancer being there? Mukherjee: I learned everything about cancer being there. It was my formative years. Those were the years in which I learned to understand cancer. I learned to understand the mutations. I learned to understand the effects that cancer has on cells. But I think most importantly, I learned to understand the effect that cancers have on people's lives, through the patients I saw. I saw hundreds of patients. I saw patients from every ilk of life. They shared this same drive to live, the same drive to want to live, but they shared a kind of dignity that was very important. My time in Boston taught me that the dignity of a patient is just as important as a patient's life, and the dignity of a patient is something that's negotiated. I often teach my students that cancer therapy is not an absolute, it's a negotiation. You have to ask a patient, 'What do you want out of this? How far do you want to push?' Because you could push very far. 'Where do you want your life to be? What do you want your life to look like? How far are you willing to participate in a clinical trial or in deeper segments of cancer therapy?' All of that I learned in Boston. And I think that idea was really initiated for me in Boston, and for the world in Boston, because Boston's one of the centers of cancer biology and cancer therapy. Leung: Can you share one story about a patient, maybe Carla from Ipswich? Mukherjee: Yeah, Carla. That's a very important story. Carla was an adult with acute lymphoblastic leukemia. I met her early on in my fellowship. She had young children then and she wanted them to go to college. For some reason she wanted them to go to Princeton University. I was like, 'Carla, we'll get your kids to Princeton. I mean, the kids will get in themselves, but Carla, you'll get to see them in college.' We think about cancer therapy in so many different ways. We think of cancer therapy as medicines, but cancer therapy is psychological. Unlike virtually any other discipline, a cardiologist becomes your psychotherapist. They become your colleague, they become your friend. He or she becomes the person you talk the most intimately about your life with. And Carla lived. We cured her. Leung: You didn't think she would live, though. Mukherjee: I didn't think she would live. Leung: What happened? Mukherjee: No one knows what happened. It was some combination of genetics and therapy and her persistence to come to every appointment. Leung: In the horrible Boston traffic, right? Mukherjee: In the horrible Boston traffic , i n the middle of the winter when the snow was terrible. But she lived and she got to see her children go to college. It was an enormous victory. Leung: How did those conversations with Carla or others go? Did any of it surprise you? Did any of it change your perspective as a doctor? Mukherjee: Every conversation is a surprise. Some people say, 'Listen, I'm done. I've had enough.' And you might not expect it. Some people might say in the beginning that they want to be done and they all of a sudden change their mind and say, 'I want to continue.' So in every conversation you have to negotiate it. You can say to them, 'You're so close, are you sure?' And they might say, 'Yes, I'm sure.' And then you say, 'It's your own game. It's a chess match.' You have to be certain, but you can't be too certain because you have to tell the truth. There's a very beautiful line from Emily Dickinson, which says, 'Tell all the truth, but tell it slant.' And that really means that when you encounter a cancer patient, you always tell the truth. You always tell the truth, but sometimes you have to tell it slant. And by slant, Dickinson means tell it in a way that it can be absorbed, in a way that it's not final. Americans deal with finalities. 'Here is a number. Your survival is x percent.' But that's not true. Your survival is a very complex number that depends on your genetics, your environment, your capacity to tolerate a trial. And so telling the truth's slant, it's an incredible piece of wisdom by Dickinson. Leung: My background is in business and finance reporting, so I was really fascinated to learn about the history of cancer philanthropy and fundraising in Boston. It sounds like we probably pioneered it, right? Mukherjee: Boston was certainly one of the places that pioneered it, along with Sidney Farber and Mary Lasker, who would be two famous figures. Leung: I think about our main cancer center, Dana-Farber, named after Dr. Sidney Farber, who's the father of modern chemotherapy. He really invented this idea of cancer philanthropy, which is so fascinating in your book. How important was he and Lasker in the way we think about cancer now? Mukherjee: Crucially important. Farber and Lasker's partnership lasted a lifetime. It was truly important that they figured out that the only way to beat cancer was not just through private engagement with patients, but through a larger public engagement. Leung: And Mary Lasker was the marketer and fundraiser, right? Mukherjee: She was a marketer and fundraiser. She was amazing at it. She went to Congress, she went to patients. She was a patient advocate, she was a political advocate. She was everything rolled into one and I think that she was just a remarkable figure. She moved it from a disease that was in the backdrop. She came out in front and said, 'We need to talk about this disease. We need to talk about it politically. We need to talk about it financially. We need to talk about it as a budget.' To really think about the idea that this was something special, that patients were suffering, they were underserved, and that they would be better served by a special institute for themselves. That was what Mary Lasker did. She really mobilized Congress and ultimately was responsible for the drafting of the idea of the war on cancer. Congress political entities don't declare wars on diseases, they unfortunately declare wars on nations. But it would be so wonderful if we declared wars on diseases and Mary Lasker was the first person to really coalesce on the idea that the job of Congress was to declare war on diseases, war on things that haunted human beings. Leung: Going forward, what would it take for Boston to continue to be an important place for cancer research? Mukherjee: I think the important thing is to attract talent. And talent comes from different places these days. In the United States, talent has almost always come from a mixture of local talent and immigration. Ecosystems form. Ecosystems are really important because you and I talk to each other one day in the common dining space of an institute, and I say to myself, 'Oh my God, that was a really smart idea. How can I apply that to cancer?' These ecosystems are networks. If anything, the last 10 years have demonstrated the importance of networks in all of social sciences. Boston was, and still to some extent is, one of the magnets of world talent. If you are a kid in Kenya and you want to cure cancer, you say to yourself, 'How can I get myself to the Dana-Farber Cancer Institute?' You drive yourself there, and then you meet other people who have the same vision and then you find that there are funds available for you to be able to do that research. That's what magnetism is, and if you lose that magnetism, I think you lose everything. Leung: Your book lays out how important federal funding was to all the treatments we're seeing now with breast cancer and leukemia. Spell it out a little bit more for people who haven't read your book. Mukherjee: Sometimes I'm just writing a piece about Covid vaccines, and it's the Moderna vaccine. But it's not really the Moderna vaccine, it's the National Institute of Health (NIH) vaccine. The NIH is the one that supported years and years of mRNA research by Drew Weissman and Katalin Kariko to create what would eventually become the Moderna vaccine. Over and over again, the idea of science funding translated into human research has turned out to be enormously valuable. Hundreds of thousands, if not millions of people have been saved by just the drug Herceptin. Think of the number of people in your own life. Each of us can name a person, and think of the network effect. A mother who would've died at age 38, who now is alive at age 52. Those years of her life were given to bringing up her child. It's just impossible for me to enumerate. People have done numbers on this and showed that every dollar spent on the NIH converts into tens, if not hundreds of dollars, saved in human capital. I think we underestimate it. Slashing that is just the worst idea on the planet. Leung: Can private philanthropy make up the difference? Mukherjee: No, no, no, it cannot. Private philanthropy is an adjunct. The central forces have to come from federal sources. Leung: Why? Mukherjee: It's just because private philanthropy historically follows the direction of what we are thinking from the center. That's the seed. It's the spark that lights the fire. And without that fire, we're really done for. Leung: So one of the big takeaways of your book is the need to reimagine how we think about cancer. And how that in itself would be a victory, if we could reimagine how we think about cancer. That cancer isn't an imminent death. That it's not about finding a universal cure, but that the disease can be managed. So talk to me more about that. Mukherjee: I think of cancer more and more as a journey. In some cases, the journey's abruptly terminated, which is sad, but in many, many cases, the journey continues. While the journey continues, we've given back people real lives. They're not just obsessed with the journey. It's not like they're in the hospital all the time. They're going back to their homes, they're going back to their real lives and then coming to the hospital for their treatment. So, I think that's a real change. Leung: What do you think people get wrong about cancer in our society and what is the one thing you want people to understand about the disease? Mukherjee: I think they need to understand it's not a death sentence. It is one word in a sentence that continues for a very, very long time. It's one word in a paragraph and that paragraph continues for a very long time for different cancers. I don't want to give people false hope. Some cancers are deadly, but I also want to give people the idea that they continue their lives beyond cancer, and I think that that's what's missing. Leung: Siddhartha Mukherjee is a physician and assistant professor of medicine and researcher at Columbia University. He's also the author of the 'Emperor of All Maladies' and the 'Emperor of All Maladies: Part 2,' along with other award-winning books on medicine. 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
