Improving Shared Decision-Making in HER2-Low Breast Cancer

William J. Gradishar, MD; Legina Deaver


November 16, 2023

In Collaboration With


This transcript has been edited for clarity.

William J. Gradishar, MD: I'm Dr. Bill Gradishar. I'm a medical oncologist who focuses on the care of patients with breast cancer. And I want to welcome you to this session of Care Cues, which is a conversation on doctor-patient communication. And I'm fortunate enough to have Legina Deaver with me today, who is a patient with breast cancer, who's going to help with this conversation.

Legina Deaver: Thank you for having me.

Gradishar: So, Legina, tell me where you are now in this journey and how you're doing day to day.

Deaver: I'm in a good place right now. I'm on Enhertu. I am handling the side effects well. My tumor markers are going down and my cancer is stable. So right now I'm very happy with what's going on. It seems like the Enhertu is doing just what it's supposed to be doing.

Gradishar: Great. That's fantastic news. And the drug you're on is — the long name, the tongue twister, Enhertu — is known as trastuzumab deruxtecan. And it's one of these drugs that is a chemotherapy compound attached to the antibody, which targets what we now call HER2-low disease. So this is a drug that we use in patients with HER2-positive disease. And then very recently, we identified a significant subset of breast cancer patients who have what's called HER2-low. They would have been previously called HER2-negative. But it was determined that trastuzumab deruxtecan works particularly well in that group of patients, as evidenced by what seems to be going on in your particular case. How long have you been on Enhertu at this point?

Deaver: I've been on Enhertu since May.

Gradishar: And throughout this course with this particular drug, have you experienced any side effects that interfere with your day-to-day activities?

Deaver: Usually the first week after the Enhertu is a really hard week for me. I get tired, I'm always nauseous. But after that first week, my system seems to get regulated again, and then I'm back to my normal diet. I do try to take a walk every day, even if it's a short walk. I do try to get outside, get some exercise, uplift my mood some that I'm actually doing something productive.

Gradishar: And how are they determining — meaning your physicians — that your disease is in a good place and appears to be stable?

Deaver: The tumor markers have gone down so low. They were — originally they were like in the thousands — and now it's down to 180-something. And my CA 15 is down to 44, so I couldn't be happier to see the results. My next scan will be in December.

Gradishar: Great.

Deaver: So hopefully we'll — I'm waiting for that no-evidence-of-disease.

Gradishar: Good, good. So oftentimes when patients are first diagnosed — it doesn't matter who they are — it's a shock. No matter how well-educated, how sophisticated they are, it's all new. So the physician — when he's first describing to you what your situation is, or what the plan is going to be, or how they're going to follow the disease sometimes goes in one ear and out the other. And I'm just curious as you've evolved, because you've been on this path for some time now, how have you changed with respect to interacting with your physician or either asking for or demanding more information perhaps than you did at the outset?

Deaver: Well, now I have a case manager who comes with me to my appointments. She helps me ask questions. Sometimes she asks the hard questions that I might feel intimidated to ask. I'm part of a support group of just strong women who have helped me learn what questions to ask, and helped me to learn about my case, and the terms that are to be used, and things that you hear the doctor. Like you said, sometimes it goes in one ear and out the other; sometimes it just goes right over your head. But they helped me learn the different terms of what was meant.

Gradishar: I'm sure not every patient has access to or an opportunity to use as a case worker, but that could also, I suppose, be viewed as another friend or family member that is another set of ears that comes into the room. But it sounds like this person is also advocating for you as well.

Deaver: Yes, yes. And I would always suggest having someone come with you because, just as you said, all you know is the word "cancer." That's all you hear, that's all you see. So I would say don't be afraid to ask the hard questions of your doctor. Don't feel intimidated by your doctor. This is my life.

Gradishar: Right. So when you say this idea of being intimidated by your doctor, what do you actually mean by that? For you.

Deaver: For me, feeling intimidated by my doctor was — I went in his office, he had a white jacket on, and he knew what cancer was, and I didn't. And I didn't know what to ask him. He has my life in his hands, and he's supposed to tell me what to do to make it better or to make it go away. When I had my surgery, I didn't realize that the cancer could spread. I had never heard of metastatic; I had never heard of metastasis. I just thought the cancer — we had the surgery, the cancer is gone. It's all gone. I have nothing else to worry about. And then it came back. But then I just went with the doctor, what he told me to do. And that's very intimidating.

Gradishar: So when you first were diagnosed — I know you underwent surgery and then afterwards what was your understanding of what would come next and what the reason was that recommendation was made?

Deaver: Some women went through chemo right away after their surgery. And I wasn't given that option, and I didn't understand why. I was put on tamoxifen, and I had really bad side effects, so I stopped. I stopped in February of 2020. I wasn't put on another medication regimen until November 2021. So in between that time I thought, well, everything must be good or else I would have been put on something a lot sooner. But it turned out that the cancer had metastasized by the time I got that report. And at that point, I felt like it was my fault — if I would have done this, or if I would have said this, or if I would have been able to stand up for myself.

Gradishar: And was there any further discussion about resuming or some alternative approach?

Deaver: No, no.

Gradishar: So the goal of antihormone therapy, or for that matter chemotherapy, or anti-HER2 therapy, if you were an appropriate patient for those things, is to get rid of microscopic disease that could be there. And particularly with antihormone therapy where you hear these recommendations that therapy should continue for minimum 5 years, some patients all the way up to 10 years — the whole reason is because the disease can show up even 20 years later, so that really highlights the importance of trying to stay on antihormone therapy as prescribed. But, of course, that has to be a message that's repeated many times. It's not unlike the patient, male or female, who has bronchitis or a urinary tract infection; they get a recommendation for 10 days of antibiotics, they feel better after 3 days, and they stop it. Only, this is a much bigger issue.

Deaver: You are absolutely correct. I wish I would have understood that at the time. I have learned a lot from my support group about those kind of things.

Gradishar: Sometimes physicians think they know everything, and they don't know everything. But with respect to interacting with patients, when a patient tells us they're taking their antihormone therapy, as an example, we know because there have been studies done. They may be saying that they're taking it, but we know that a third to 40% of patients may not be fully compliant, and the obvious thing is that if you're not taking the medicine, you're not getting the benefit. If you know you're supposed to be on it and not taking it, that's a big problem that we face.

Deaver: That was something new when we had talked about — when you mentioned that — to stay on for 5 years, a good 5 years. I hadn't heard about that.

Gradishar: Just as the physician should be asking the patient "Are you taking your medication?" and making sure they're doing it every day, they also have to ask are they experiencing side effects.

Deaver: There was a time when I was going through extreme back pain and I was taking over-the-counter medicine like Skittles. I talked to my doctor, they said, "Well, don't take so much of that because it could affect your liver." Okay, then what am I supposed to do? And it wasn't until a case nurse called me — she calls me once a month — I was in my bed crying, I was telling her how much pain I was in, and she was like, "This is ridiculous." She called my doctor's office, intervened on my behalf. Next thing I knew, I had an alternative pain medication. So it wasn't until after she made the call that I felt like then I was taken seriously.

Gradishar: I think it's important, as you already pointed out, to be taken seriously about the symptoms you have because they sometimes, not only result in you being very uncomfortable, but they could represent something changing with the disease itself.

Deaver: Well, when I'm speaking to an oncologist, what are the best things for me to say? What are the best things for me to ask? How is the best way to get my thought across?

Gradishar: One of the key things is to know what the things are ahead of time, even writing them down. And right from the moment the physician walks in the door — because he walks in the door, he's already thinking about how do I get to the next patient — you have to say, "I've got some questions for you, if you have time." And it doesn't matter if he says — winces or whatever — you get your questions answered. When a doctor sees a legal pad coming out, they may grimace in their head a little bit, or a piece of paper with some questions, but you'll get them answered, and you'll get satisfied, hopefully.

I don't proclaim to be the master communicator, but, as you might imagine, physicians take care of a lot of patients. And when you look at the chart, it says stage IV, stage II. It doesn't say anything about the person. I think it's critically important to go beyond the diagnosis and — not that we're sitting and having a chat about their family's long history, but just knowing something I think is important.

Deaver: That would make me feel that you care about me; you want to know that I have children, you want to know where I'm coming from — something other than the cancer. Talk to me about something other than the cancer. Give me one thing that's not about the cancer that you seem to care about. That would make me feel good. That would make me feel strong. That would make me feel like, okay, we're here.

Gradishar: From my standpoint, communication has to do with feeling comfortable that you know the patient understands what you're doing and why you're doing it.

So what's in vogue is this notion of shared decision-making. Earlier you were describing when you were initially diagnosed, you were told: This, this, and this is what we're doing. And you were, at least at the outset, okay, that's what we're doing. And then as time went on and things changed, you also changed.

Deaver: Definitely. Now that I have been able to do some of my own research, now that I've been in support groups, and talked to other women — and heard their stories, and their testing, and their different avenues that they've taken — and worked with my case manager, I have more information for myself. So now when I go talk to my doctor, I can have a shared information session with him because now I have more information for myself, and I'm not just depending on for him to tell me, we can share information and I can go, okay, well, what about this? Well, I don't know if I like that. What about treating this way?" And he can say his piece, I can say my piece, we can come to something together. But that would have only come had I gotten the information. It wouldn't have come had I just left it at "Whatever you say, doctor; my life is in your hands."

Gradishar: At some point you sound like you became empowered with your own knowledge and self-confidence having met some of these other women who have gone through the same thing as you have.

Deaver: Definitely. You become your own advocate.

Gradishar: Yeah. Well, Legina, it was a pleasure talking to you today. I certainly learned something, and I hope our audience got something out of it. Any closing comments?

Deaver: Well, it was a pleasure speaking with you today. I did learn a lot. I just felt more empowered, and I hope that those watching will learn how to empower their patients.

Gradishar: Thank you, Legina.


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