Treating HER2+ Metastatic Breast Cancer: Caitlin’s Story - Episode 3
Caitlin Flanagan, a patient with HER2+ metastatic breast cancer, describes her experience learning about the surplus of treatment options and how she overcame her initial apprehension.
Sara A. Hurvitz, M.D.: Let’s turn to the treatment options, that phase when we began to discuss how we were going to address this problem. Do you remember how we talked about treatment options? Was it too detailed? Was there not enough detail? Were you too overwhelmed to hear it and you needed your family?
Caitlin Flanagan: I was too overwhelmed to hear it, but I was aware that it was happening. I was aware that my husband and my sister were taking all these notes. The other doctor was probably twice your age at the time, and he’s like, “I don’t really know what to do. I don’t really have anything to say.” And, you were like, “There are so many different things we could try, I would recommend....” I remember you did all this stuff, but there wasn’t yet research finished to prove that this was going to be more effective than the other treatment. You’d said you’d seen in your practice a lot of women responding in a good way to this treatment you were recommending. I thought, “Well, that’s another advantage. She’s seen women like me in my situation. They’ve taken it and done well.” So that was really good. But to this day, HER2 [human epidermal growth factor receptor 2]/neu, receptors, blood—I can’t even really picture it, but you can.
Sara A. Hurvitz, M.D.: What advice would you give to other patients to help them be their own advocates and face a moment like that, hearing news like that and knowing that you have a potentially life-threatening illness that needs treatment? What’s your advice?
Caitlin Flanagan: I always say the first thing you want to do is take a really deep breath, then another one, and then another one. Because what you need to do is calm and soothe yourself, which as you know I’m not always very good at. I have been learning that there’s something that wants to override logic or reason, and it’s that deep animal panic and terror. Everything is so heightened that it’s all the worst emotions to have. Your adrenal glands are going. So it’s important to do whatever you can do to be calm and to help yourself be calm.
In terms of being one’s own advocate: of the many tricky things of our health care system in America, I think that is one of the trickiest. We hear that message all the time, “Be your own advocate.” So then people, like my family and I did in the beginning, jump on the internet. You forget that you don’t actually have a [doctor of medicine degree]. You don’t know anything about this. You’re grabbing bits of information, and then you’re wasting your time with your doctor because you’re telling the doctor what you think should happen. It’s very difficult.
As far as being your own advocate: if they give you an appointment that’s a long way off, people will usually work with you on that. If you say you’ve just found out and it’s urgent, or you’re nervous, or you ask to be on their callback list if somebody drops out, they will usually work with you. Getting in as soon as you can is a way to be your own advocate. The information won’t change by waiting. You’re just going to be anxious that much longer. The sooner you start getting experts on board, the better. That’s really the advocacy.
Over the years, I have known so many women from waiting rooms. One will be on a macrobiotic diet. Someone will be doing something else. They’ve read something; they want to believe it. I’ve never seen those women maybe have a great outcome from those sorts of things. That happens when we get too much on the internet. There’s a little bit of trust in your doctor. It’s tricky to be your own advocate. My husband thinks he has an M.D. [degree] now, Sara. It’s like they read enough blogs that they think they do, but they don’t. It’s kind of a difficult passage there of both giving over some control, but keeping the necessary control as well.
Sara A. Hurvitz, M.D.: That hits on an important point, which is seeking other opinions. You left your oncologist to seek another opinion. That’s how we met. I’ve encountered patients who’ve done that, and they’ve been afraid that their treating oncologist will find out, like they cheated on their treating oncologist by coming to see me. They’re wondering how to navigate that my opinion may be different than their oncologist. Now they want to do what I’ve recommended, but they don’t want to tell their oncologist. In the traditional way, the way my parents view physicians, they’re on a pedestal, and you don’t want to upset the ego of the physician caring for you. In more modern times, people are moving away from that model, thankfully, because we are just humans. Can you talk about the thought process in seeking a second opinion and how you went through that? Did you have any anxiety about that or if you were just like, “I’m out of here?” What was your approach?
Caitlin Flanagan: I have a friend who knows a lot about the breast cancer landscape in Los Angeles, and throughout the five years, she had been recommending that I get a second opinion. I don’t think you were in the office yet. It was Linnea Chap, [M.D.]. I did go to see her, and she—God love her—really terrified me. Although, she was totally right. She basically said, “I think you’re going to recur,” and of course I did. So, she was right, and I probably should have stayed with her, but she just frightened me so much.
When I had this recurrence, I knew I had to get to the science. I didn’t know how to pick a doctor. I thought it was like picking a pediatrician. You call your friends, or you meet somebody. You think there’s not that much difference among the different treatments, and you go with it. I just thought, “This guy’s in Beverly Hills. That’s got to be the best of the best, because Beverly Hills is expensive, and people with a lot of money would go there.” But that doesn’t have anything to do with finding a practice, a physician, or ongoing research that can really make the difference for you.
Once I met you, I thought, “Why didn’t I do this sooner?” You had a lot of enthusiasm for solving these problems. My former doctor did not. If someone has the insurance that allows you to get a second opinion, and that you can do it with someone you choose, I do think it’s a good idea, if only because you’ll find out they may have different opinion. It’d be great if they both had the same opinion, that it’s a consensus. If they have really different opinions, then you might want to do some more thinking, or have one of your caregivers help you with that because it’s a big deal. I don’t think I made the right decision the first time out.
Transcript edited for clarity.