Caitlin Flanagan, a patient with HER2+ metastatic breast cancer, shares her initial impression of when she was diagnosed.
Sara A. Hurvitz, M.D.: With that very broad strokes overview—hopefully I haven’t confused everyone—I’ll turn to you, Caitlin, to talk about your own journey, your own path. Can you tell us a little bit about how you felt, first of all, when you were first diagnosed with metastatic breast cancer? That was the time you and I met, when our paths intersected.
Caitlin Flanagan: Yes. Five years earlier, I had been diagnosed with stage 3 HER2 [human epidermal growth factor receptor 2]/neu cancer, and I’d had really difficult treatment. I was just getting to that five-year mark that some say is a myth and some people say it’s true. I had in my mind that if I could make it there, I would maybe be on the cure side of things. Right at that time, I was diagnosed with metastatic breast cancer, and I thought it was the end of the journey. With stage 4, metastatic disease, you think of all the movies you’ve ever seen, or books you’ve ever read. It didn’t seem like something that I could survive. My oncologist at the time, a very reputable oncologist but not necessarily a specialist in the area of breast cancer—he saw different kinds of cancers—didn’t know what to do. I could tell. He didn’t have a clear plan.
One day, he called me and said he had an idea. I said, “Oh, what?” He said, “We could section your liver.” And I thought, “But I also have the cancer in my lung, and I have it in my chest wall.” I didn’t see how that would help. At the time, I was being referred to you, and everything started getting good quickly.
Sara A. Hurvitz, M.D.: I remember the day I met you. I think your sister and your husband were with you. I remember you lying on the examination room table, because you were so overwhelmed by the diagnosis. How old were your sons at the time?
Caitlin Flanagan: They were 10. They’re twins. They were just about 5 when I was diagnosed the first time. I thought, “Well, at least I’d gotten them to 10. They’ll have memories of their mother.” But it still seemed terrible. It was a terrible, terrible situation. We always laugh about how I kind of passed out on the exam table. I have to say, I was so relieved. You had total confidence. You were totally upbeat. You weren’t promising anything. You weren’t saying, “Oh, I’ll cure you,” or, “I’ll have you back in no time.” You obviously recognized that it was a very serious disease. You were drawing with your pen all over the white paper. My sister and husband are somewhat scientific people, and they were looking at it. I just felt like, “OK, we have a shot here, and I’m going to take that shot.”
Sara A. Hurvitz, M.D.: What was your day-to-day life like at that time? You were busy being a mom. Your husband was working full time. What was life like at that moment?
Caitlin Flanagan: I’d known something was wrong, because the year leading up to the diagnosis of the recurrence, I was extremely tired. I kept getting more and more tired. My tumor markers were rising slowly, and they had been really out of whack when I was first diagnosed with the cancer. So I thought, “It’s coming back.” I learned so much along the way about choosing a doctor. My doctor had given me some Herceptin, but he wasn’t up to date with all of the advances. I kept asking, “Could we try some more Herceptin?” Not that I would know, but he said, “No, we don’t treat a number. We treat a scan.” I was tired. I was scared. I’m a writer. I had a big work project due, and I couldn’t get it done. I knew that something wasn’t right. But it was still terrifying to get the actual diagnosis.
Sara A. Hurvitz, M.D.: Can you classify your emotions with words at that time? Do you recall the emotions? Was it fear or sadness?
Caitlin Flanagan: It was sorrow. The first time was just terror. You’re 40 years old. You’ve never been sick a day in your life with anything serious. You have two little boys who are not even 5 years old, and someone gives you the diagnosis. Everything just happened so fast. I went in for my regular mammogram, and by the time I left, the doctor was saying, “You have aggressive breast cancer. We’re going to take these slides, but it’s serious.” You think you know what it would feel like. You can imagine. You read a book, or you meet somebody. Although, the first thing people always say to you when you have cancer is, “I can’t imagine. I can’t imagine what that’s like.” It’s in that area of things that are so bad, people almost superstitiously don’t want to imagine it. That was terror. The second one was a profound sorrow for my children that it looked like this would be the end of the line for that.
Sara A. Hurvitz, M.D.: Right. What sources of support did you tap into?
Caitlin Flanagan: I always need a lot of support, even during times of great health. I have my big sister and my husband. Those are the two giants. I live in Los Angeles. I’ve lived here a long time, so I had all my friends. I didn’t go to support groups. I had tried that the first time. When you go to those groups, there are going to be people who are much worse off than you are or who have a different form of cancer that’s going to respond differently and are having other issues. You become so depleted that I felt like I don’t have any support to offer anyone else. And what they’re saying is making me more frightened. So it was more just my friends and family.
Sara A. Hurvitz, M.D.: Right. I’ve heard that from other patients, that support groups are sometimes overwhelming. They can be powerful for some people, but you have to understand your personality, where you are in your journey, and what your own needs are.
Transcript edited for clarity.