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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 Jane became a little more withdrawn, all intimacy stopped.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
Boston Globe
01-05-2025
- Health
- Boston Globe
The C-Word: Let's talk about cancer – starting with my own.
The following is a lightly edited transcript of the May 1 episode of the 'Say More' podcast. Shirley Leung: Welcome to 'Say More' from Boston Globe Opinion. I'm Shirley Leung. This is the first episode of our series, 'The C-Word: Stories of Cancer.' When I was diagnosed with cancer, it's like I was waiting for it my entire life. Because when I was 12, my mom's mom, my Wai Po, died of breast cancer. I watched my chubby cheeked grandma waste away after chemotherapy and a double mastectomy. She, like me, had been diagnosed with breast cancer in her forties, but unlike me, she didn't have the advantage of early detection in the 1970s. There were no annual mammograms. She found the lump herself, and by then, the cancer had spread. Wai Po was only 55 when she passed away in 1984. She had fled Mao Zedong's communist China, but couldn't outrun cancer. Back then it was like the Dark Ages. A diagnosis felt like a death sentence. A 1979 photo of Shirley Leung (l) when she was 7 years old with her grandmother at Longwood Gardens in Pennsylvania. Handout/Kam-Ken Leung For the next month on 'Say More,' we'll be sharing stories of cancer, starting with my own. Some of these stories end in tragedy, some lead to new beginnings. When my cancer journey started, I didn't know whether I was headed for death or a new start. For now, I'm fully cured, but in some ways I'll never quite get over cancer. I'm in the studio with 'Say More' producer Anna Kusmer. Anna Kusmer: I remember the first time you told me you had cancer, we were having dinner together and you mentioned it sort of offhand, and I was really intrigued. I was like, 'I've known Shirley for a while now and I didn't know this about her.' I had a million questions, but I didn't know if it was okay to just grill you about it. Over time I did hear more of your story. How long has it been since your cancer diagnosis and what kind did you have? Leung: So it's been eight years since my successful treatment. I had early-stage breast cancer. Mine was caught by an annual mammogram. It was stage one; I had a single side mastectomy. My left breast is gone now, and I have an implant. I had five years of a drug called Tamoxifen. It's a type of hormone therapy that reduces the chances of my cancer coming back. Kusmer: So you write a lot about your personal life in your columns but you've never written about your cancer. Why did you wait so long to talk publicly about this? Leung: When I was first diagnosed, I thought about writing about it. Between my diagnosis and my first surgery, I was thinking about doing it and I got this really good advice from somebody who said, 'Don't write about it now, you are going to be going through so much surgery and a diagnosis. You need to focus on your treatment.' That was the best advice I got during that period because I would later learn that it took me probably two years until I stopped thinking about cancer every single day. And to stop thinking about the idea that I might die of cancer. Kusmer: Can you take me back to eight years ago when you first found out you had cancer? What were those first couple days like? Leung: I was about 45 years old and I just had my annual mammogram. I got a call back saying, 'I think we want to call you back. Can you do another mammogram?' So I came back and then they said, 'Oh, we want you to have a biopsy now.' So I went in for a biopsy and they took two biopsies in two different places in my left breast. Then I had to wait. It was actually very excruciating to wait. I think from my first mammogram to my biopsy result, it was probably almost three or four weeks, and I was kind of in limbo. And I remember, I got a call from the doctor's office. Kusmer: You were at work, right? Leung: I was at work. I'm thinking, 'Well, I must not have cancer. Who calls you up and tells you over the phone that you have cancer?' So it was almost a relief that the doctor's office called. But no, I learned that no, they actually do give you your cancer diagnosis over the phone. Kusmer: Oh my God. Leung: And I couldn't believe it. So I'm sitting in the office at the Boston Globe. It was literally the week that we were moving from our old headquarters on Morrissey Boulevard in Dorchester into 53 State Street, here. So it was a pretty empty newsroom. I'm unpacking my boxes. I'm trying to file a It was like my world stopped. It was just like all those movies where you're told you have cancer or, some horrible thing and you know, the world, the room was just like spinning. Once the nurse on the other line said ,'You have cancer,' I just stopped listening. I couldn't even understand what she was saying. I have no idea what she said after that. I just knew I had to get off the phone and call my husband right away. Kusmer: So what kind of breast cancer did you have? Leung: So I had something called Ductal carcinoma in Situ (DCIS). It's the kind of breast cancer you wanna have, as my doctor was explaining to me. It's both very treatable and beatable. It's a kind of cancer that's supposed to stay in the breast, which means it's not supposed to break out and spread throughout your body. But I had very aggressive tumors, and if left untreated, it probably would've become invasive. My prognosis was good, but having cancer, it's like a series of cliffhangers. You get diagnosed, then you meet with a lot of different doctors. Then you go through surgery, there's more biopsies. They're trying to figure out if it spread. Not only did they take my left breast, but they took the first lymph node to just make sure the cancer had not spread. And then after that, I didn't have to do chemo. I didn't have to do radiation. But I did have to take five years of a drug called Tamoxifen, and that prevents cancer from recurring, because now they're concerned about my right breast. So they're making sure it doesn't come back. Kusmer: So you didn't come out publicly about your cancer for understandable reasons, but who did you tell? Did you tell your little kids that you had cancer? Leung: It wasn't hard telling my kids. They were only four and six. They had no idea what cancer was or what it could do. Of course I told friends and colleagues about my diagnosis, but the hardest conversation was with my mom. And that surprised me. I actually think I waited a bit to tell her. That's because her mom died of breast cancer and I'm a mom now, and if one of my kids called me up and said 'I have cancer,' it would've crushed me. And so I didn't want to break her heart, telling her that her daughter has breast cancer just like her mom. Leung as a young girl with her grandmother in New York City's Chinatown in an undated photo. Photo by Lou Chen Kusmer: So how did that conversation go with your mom? Leung: It was a hard conversation. I remember she had called me about something else. I think we were talking about summer vacation plans and then I blurted out I can't do any of that because I have cancer. And we both just started crying. I have very vivid memories of that call. When doing this series, I was curious what my mom remembered of that call. We actually never talked about it. Kusmer: Your mom who lives in California, we connected with her via Zoom. We wanted to see what she remembered. Leung (recording of call to mom): Hello. Ma? Leung's mom: Hello. In the office, is it now your home? Leung: Yeah, in my office. She was really nervous, Anna. She must really love me if she was willing to go on my podcast Kusmer: She told us a little bit about her memory of the call. Leung: Do you remember that day? When I gave you a call? Leung's Mom: Yeah. It was morning time. I was shocked, crying. 'Why do you have cancer? You are so young.' 'It's people my age who have cancer, not your age.' Leung: I asked my mom if she was scared about me having cancer. Leung's mom: Of course. Scared. And sad, very sad. Leung: Why were you sad? Leung's mom (translated by Leung): Your kids are so young and if they lost their mother, the family would be broken. Leung: I asked my mom if she was really nervous for me because her own mother had died of breast cancer, and I was really surprised by her answer. Leung's mom: My mom had breast cancer so long ago, 40 years ago, and there are so many advances in medicine and treatment. Leung as a young girl with her grandmother in front of her home in Jackson Heights, New York in an undated photo. Photo by Lou Chen Leung: My mom knew, I think deep down, that I'm not going to be my grandmother. Anna, you and I went to Dana-Farber. I hadn't been to Dana-Farber Cancer Institute until I had my cancer. Had you been to Dana-Farber? Kusmer: I've definitely heard of Dana-Farber. The Jimmy Fund, a philanthropic wing of Dana-Farber loomed extremely large in my childhood. I remember every time we'd go to the movies, there'd be buckets passed around to raise money for the Jimmy Fund. So I've always been aware of this world class cancer institution in Boston, but I've never been inside and it was really interesting to go there with you. Leung (clip from Dana-Farber visit): All right, so we're outside Dana-Farber. This is the main building, right? Leung: I called it the Four Seasons of Hospitals because it's just so welcoming, but also it's very sobering being in there because some of the people there are very sick. Kusmer: When you first walk in there, there's really high ceilings. Tons of light coming in through the atrium. It does look like a hotel lobby. And the juxtaposition between that and what you know about it, it's mostly full of cancer patients, those two things together makes you feel like this is a place of great purpose and importance. Leung: I think purpose is the right word. Often when we talk about cancer, we talk about it as the war on cancer, right? You do feel like this is a place where you are on the front lines of fighting cancer and you have doctors and nurses and staff and researchers helping you battle cancer. Leung (clip from Dana-Farber visit): There's this garden, serene garden, and I remember sometimes you can come in here, it's a healing garden. You don't see this in other hospitals. Kusmer: One place we went to together was this indoor garden. I've never seen that in a hospital before. Did you go there when you were getting treatment? Leung: I did. I did because it's such a special place. Maybe you're waiting in between appointments or before your appointment. After an appointment, you go into this garden and you have these benches and it's warm and it's sunlit and you can just sit there and meditate. As much as cancer is a physical disease, it's also a mind game. Kusmer: It seems like this garden is a physical representation of the fact that it's not just the physical biological support you need in this journey. You also need these other supports like spiritual places to contemplate your life. Leung: It's something my oncologist, Ann Partridge, seemed to really get. Kusmer: Actually right after the garden, we went to see her. Leung (clip from Dana-Farber visit): You look good. Ann Partridge: Thank you, my friend. How about you? How are you? Kusmer: Tell me a bit about Dr. Partridge. Why did you choose her? What did you like about her? Leung: Her specialty is dealing with younger women who have breast cancer. I think the average age of a woman who gets breast cancer in the US is in her early sixties, and so her specialty is women in their twenties, thirties, and early forties. She said she was inspired to work with younger women with breast cancer because of a friend of hers who was diagnosed when she was 30. Partridge: She presented with a lump and sure enough, it was breast cancer. What that did do, at a tender young age for me, was open my eyes to some of the things that the medical community doesn't focus on. So you're focusing on the disease and what treatment do they need? What surgery do they need? Should we give them chemo or not? And she was also grappling with starting to date a guy. 'When do I tell him?' 'And what kind of camisole do I get if I choose to have a mastectomy? And when can I do the reconstruction?' And things that, kind of as a doctor, you're like, 'Talk to the nurses. Go to the boutique.' But when you are either a patient or you're close enough to a patient, when they're sharing those things, you're like, 'Oh, what's she going to do?' We don't know any of this stuff. And more importantly, how is she going to feel in a couple of years as the dust settles with her decisions, decisions about fertility, decisions about reconstruction. So there's a whole Pandora's box that gets opened for our youngest patients, especially that there wasn't as much research to tell us what to think about her future risks, let alone how to counsel her. So that's an area that we focused on a lot to try and bring more information to the table as people are making these difficult decisions. Kusmer: One thing that I really liked about Dr. Partridge is that it seems like she took listening to her patients and really understanding her patients to be one of her biggest jobs besides the technical work of treating cancer, like understanding what their values were in life, what their fears were, and truly trying to get patients to open up to her about these really deep life or death questions. That doesn't seem like every type of doctor would have to wrestle with that. Partridge: I see it as, 'What can I do to make this better for this person?' That's true for everybody that I take care of. How can I make their journey better? I find that as both an extraordinary privilege and responsibility because in order to help make a person's journey better, whether they have low-risk early-stage breast cancer, or they're living with an advanced disease, you have to get to know that person. And that's part of what pulled me into cancer, breast cancer specifically, because it's a long haul journey. Even when they're ultimately going to die of the disease, we often can get them on a treatment that contains it for some time. So to me, that was part of the compelling draw, to take care of patients who are dealing with something very serious. Each bring their own unique gifts and baggage to it, so you can help to get to know them and take care of them and hopefully make their journey better. Leung: Ann, and other oncologists that we talked to for this series, so much of their focus was on quality of life. It wasn't about, 'We are going to do everything possible to kill the cancer, even if it almost kills the patient.' I feel like before it was one size fits all for cancer treatment, and now it's like, 'No, we can customize your treatment so you don't lose all your hair or you don't lose both breasts.' The advances are about allowing people to live better and fuller lives. It's not just about survival. Kusmer: Dr. Partridge also talked a lot about the mental health journey of the cancer patient. She said even mental health experts with cancer struggle. Partridge: I had a patient this past year, who is a psychiatrist. During a forum, she said, 'I'm a psychiatrist. I teach people how to cope. And all of my usual coping mechanisms are not working.' And that's not an uncommon phenomenon. Kusmer: So one thing that surprised me, Shirley, is that you mentioned earlier that you weren't exactly relieved when you found out that you were cancer free. Can you explain that? Leung: Yeah, I was surprised, too. After surgery they test the lymph node so that they know if I am definitely going to beat this cancer. And the doctors are eager, actually to declare you cancer free. And as a cancer patient, I mean, those are the magic words you wanna hear. You are waiting for that moment. And yet I didn't feel cancer free because there's another C-word. Cured. And that can land just as hard. And, I found out, it's just as complicated. And I remember talking to Dr. Partridge about, 'Why don't I feel better? Why don't I feel relieved? This was supposed to be amazing.' She was the one that suggested, I see a therapist and Dana-Farber has a therapist who specializes with cancer patients. And so I went to see a therapist for the first time. Kusmer: So what did you learn? Leung: Well, I learned that it was pretty common for patients to feel this way. I also learned that I still equated cancer with death because of my grandmother's death, and I needed to be reminded that I am not my grandmother. It was hard for me to relax because of cancer. And it was like having a ticking time bomb inside me. And I mean, how many of us know people who beat cancer only for it to return with a vengeance? And I was like, is that going to be me? And I didn't want to jinx it. I didn't want to think that I'd actually beat cancer. Kusmer: So one of the themes of this series is the ways that people who have cancer are treated differently once they do come out and tell people. How did you feel about the way people talked to you and treated you and kind of talked about your cancer while you were going through it? Leung: In the beginning it was awkward. Still to this day, some people still ask me, 'How's your health?' And I'm thinking, 'It's been eight years.' It comes from a good place, right? That they want to recognize that you had cancer, and it was a tough period for you. So I appreciate it. But you are treated differently. People won't talk to you the same way. And it can be a little awkward now because so much of the narrative around cancer is like, 'You are a survivor. You are a warrior.' And I didn't feel like either one of those. I felt lucky, really lucky, that I had a very treatable and beatable cancer. Yes, I had this major surgery, but as cancer goes, it was pretty good. But you can see that cancer has done something to my mind because it's taken me eight years to finally really talk about it. Kusmer: So how do you think having cancer changed you as a person? Leung: I wish I could say it's made me Mother Theresa. When I'm having a bad day or if I'm fighting with my kids or they're upsetting me, I do think, 'Hey, I'm just really glad I'm still here and I can live through these moments.' I also saw, and I think every cancer patient will tell you this, I saw the humanity. I had so many friends, colleagues, and also, people I barely know who came out of the woodwork to support me, to bring me meals, to babysit my kids. I just saw a side of humanity that made me really hopeful and optimistic. And now when other people have cancer or go through some really tough period, I'm there for them. Kusmer: So your little boys from earlier in your story, that 4-year-old and 6-year-old, they aren't so little anymore. I think they're what, 12 and 14 now? Leung: They're taller than me! Kusmer: So what do you want them to know about cancer now that they're old enough to understand? Leung: For them, their first association with cancer, it won't be about death. It'll be about Mom living. Now, one of my son's friends, their father passed away from cancer last year, so they do know that some people die of cancer, but I think it's important for them and that generation to know that cancer can be treatable, can be beatable, and it's a real testament to the advances of medicine. They can actually say 'cancer' and not be scared. Maybe in their lifetime, cancer will be more like heart disease or diabetes. It's a disease that can be managed. It's chronic for some people. Cancer won't haunt them like it did me. Kusmer: Thank you Shirley, so much for sharing your story. I hope other people will reach out and share their own stories and stick around for the rest of these episodes. Leung: Anna, thanks for being on this journey with me. We hope you'll stick around for more episodes on the C-word. Listen to more 'Say More' episodes at Kara Mihm of the Globe staff contributed to this report. Shirley Leung is a Business columnist. She can be reached at
