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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