This transcript has been edited for clarity.
Kevin R. Fox, MD: Hi. I'm Dr Kevin Fox. Thank you for joining us for this Care Cues conversation. I'm joined today by Erica Kirschner, a patient I have known for about 11 years. Erica has the distinction of having been diagnosed with HER2-positive breast cancer at the age of 27.
Erica Kirschner: Thank you, Dr Fox. It's great to be here with you.
Fox: We're here today so that we can learn more about how clinicians like myself can do a better job of communicating with our patients. I thought it would be helpful if you told the story, as you recall it, from the beginning, because the hardest part is at the beginning.
Kirschner: The radiologist who diagnosed me was incredibly compassionate and I will never forget what she said. She said, "You need to prepare yourself for a saga because the biopsy confirms that it was not just the one lump that I found; there were multiple tumors in both breasts." And at that point, we knew that it was more aggressive, so I wanted to see different specialists, which I did. And I had a whole range of experiences at different institutions. Some were really wonderful, whereas I had other doctors who didn't necessarily have that bedside manner.
Fox: Could you expand on what was done poorly and how you feel, in retrospect, that it could have been done better?
Kirschner: In one of my consultations with a surgeon, I was trying to devise a surgical plan for my mastectomy or a lumpectomy, and how that would work in conjunction with chemotherapy and radiation. And that's a really overwhelming process to navigate. I was asking the surgeon for his thoughts on how I should proceed. He was looking at my chart, at the monitor; he didn't even turn around to look at me when he said, "It makes no difference on survival."
And to this day, almost 12 years later, it's something I always remember because it was just such a cold, cold reaction to a genuine question of concern. It wouldn't have taken much for him to just turn, look at me, and walk me through the options. I understand for him that it's something he does every day and statistically maybe it wouldn't have made a difference on survival, but when you're trying to develop a plan with a patient, you need to be more sensitive and compassionate.
Fox: So which would you say was the worst part of that? Was it the absence of direct visual contact, the brevity of the answer, or both?
Kirschner: I would say it was both.
Fox: The process of going through this up until the point of surgery often requires additional testing, the point of which is to see if the cancer has spread or not before you embark on your surgery. You had a number of those tests, and they were all fine.
Kirschner: They were all fine until an astute oncologist noticed that I had never had any imaging done of my abdomen. When the results came back and we did learn that I had liver metastasis, that changed the treatment plan.
Fox: What, in your opinion, is the best way to convey that information to a patient who is suddenly given something different from what they anticipated?
Kirschner: The way I learned about the mets in the first place was from a CT report that was mailed to my house by the institution that did my imaging. So I didn't have anyone to walk me through the results of that. I read it on a piece of paper, which I opened anticipating that it was a bill. I had no idea that I was going to read a life-changing piece of paper.
I had that experience in contrast to when I came in to see you after that, and we talked about what that meant in terms of my treatment plan. The way that it was delivered in your office was much more helpful to me because I could ask you questions. One of our earliest conversations — I remember pushing you on this, and I wanted a prognosis because I wanted to know how much time I had. At that time you told me that you didn't want to give me a prognosis, if you recall. What was your rationale behind that? I'm curious.
Fox: Your breast cancer at that point that we met was known to be HER2 positive. We had the good fortune of having had developed treatments for that subtype of breast cancer, which, on occasion, would work extraordinarily well. First of all, I would have no idea if it worked, and then, of course, no idea for how long it might work. And therefore, extending this notion of knowing your prognosis would be almost a fool's exercise because I couldn't answer accurately.
Kirschner: It is so refreshing for me as a patient to hear you as a physician say you didn't know and you didn't want to speculate, because so often when I talk to other friends or family members, they have these very clinical, cold conversations with their providers, and they're like, "This is your diagnosis. You have 3-4 months."
Fox: There was a time in your particular treatment, which as we both have recalled many times, required a great deal of shared decision-making. Erica's breast cancer was not only HER2 positive but estrogen receptor positive. And it came time, as it always does, for the chemotherapy to be discontinued, and then presumptively substituted with antiestrogen, or endocrine therapy. So that was put in place. The consequences of it were, I'll say, memorable. I want you to share with us what that experience was like.
Kirschner: With the addition of the tamoxifen, I became a completely different person overnight. It was extreme emotional mood swings, uncontrollable crying, sexual side effects, night sweats. And the hot flashes intensified. I wasn't sleeping. I was in a very dark place. I didn't even recognize myself. It must have been incredibly frightening to everybody around me because I know for me, it was a really scary experience.
Fox: At that point, we are compelled to recommend the withdrawal of a treatment that is making your life what was, at the time, a bit of a living hell. We're withdrawing a treatment that we view as a critical component of your treatment. There are so many ways to do it right, so many ways to do it wrong. I'm wondering, in retrospect, how did it work? Did we do it right?
Kirschner: It wasn't an easy decision because I was very concerned that by not doing that I would risk recurrence or progression. That was a conversation that we had had, and you explained to me the potential risks of doing that. I believe that we increased my scan frequency just to monitor progression at that point, which was a fair tradeoff for that.
Fox: One of the other compelling parts of your story that we haven't talked about yet is the simple issue of an inherited tendency to develop not only breast cancer but other cancers.
Kirschner: We discovered that I have a TP53 mutation, which is Li-Fraumeni syndrome. And there are some restrictions around treatment with that, specifically with radiation.
Fox: I want you to review how that was conveyed to you. Was it done well? Could it have been done better?
Kirschner: I am a person who believes that knowledge is power. And knowing that I had this helped me make more informed decisions. I will say that there is an excellent genetic counseling department at your institution. I am eternally grateful to everyone there because I did feel that through the entire process, they were very accessible to me. They explained things to me in a very patient-friendly way.
Fox: One of the things we'd like to talk about today is the idea of barriers to care. It's a complex subject. There can be barriers — cultural, educational, financial, language — which are not imagined. They're all there.
Kirschner: I am fortunate that I was a teacher, married to a public school teacher in the state of New Jersey, so we had really great benefits. I have friends and family that are going through this and they haven't had the same experience. So how do you address those concerns in your patients?
Fox: It's a complex enough matter to get to the doctor. Once they get there, the barriers can still exist, or the systems problems. We have ways of getting insurance for people who have none. There are state government–supported systems to resolve that. And we have a mechanism for doing that. Access to diagnostic testing just requires that they have coverage or a way for that to be paid for, which they do.
As a clinician, in terms of breaking down barriers, the best way to do that, in my opinion, has always been just to give people the time they need to do it. If you are abrupt or dismissive, or if the fact that they don't speak the language is going to make you lose your patience, then you've committed a tremendous sin in the practice of medicine by not giving people their time, your time, when they need it.
Because of the nature of your treatment, we meet essentially every month and have for 11 years. If you have a need or a question, what has been your greatest frustration? And do you think we have gotten any better at handling that?
Kirschner: If there's something that's time sensitive, calling the office is a very frustrating experience. And it's a big institution, so I understand that. I personally find that it's easier to reach out through the app and message. I do that with all of my providers and I find that really helpful.
Fox: There are people who don't have access to the devices necessary or don't have the skills to utilize those systems. Do you ever think about how we could improve upon that?
Kirschner: I think [it would be a good idea] to ask patients at intake what their preferred method of communication would be, because for me, using the portal is great, but I certainly get why some people don't feel that way. So I think having more conversations about preferences for communication, and then actually employing those preferences, would be really helpful.
Fox: The uniqueness of your situation requires that we address the issue that we are now finding in our relationship the hardest of all. You have no radiologic evidence of breast cancer, and you haven't for a very long time. It begs the obvious question, which I pose to you too many times: Would you like to stop this for a while?
Kirschner: It is a very — I don't want to get upset. I'm sorry. It's a very complicated decision with my current treatment plan. And as you've said, and I'm sure you could speak to this much better than I can, we are kind of in uncharted territory here. There's no clear guidance on how to proceed at this point. Would you say that's a correct assessment?
Fox: I think when you're in uncharted territory, and there is uncertain risk of benefit and harm in a person who is well, I feel very strongly that the decision should be a shared decision. But you are the one who carries the ball on that decision. If you walked in tomorrow and told me, "I want to take a 6-month break from this," why would I push back? So if you told me you wanted to take a break, you would be given one. If you told me you were unwilling to take a break because of your very rational concerns about doing so, so be it. We'll keep on going. And that's the nature of a shared decision.
Kirschner: I never could have conceived that it would be an 11-plus-year relationship. But I'm so grateful that I've been on this journey, if you will, with you, because I've always felt that you were direct. You didn't sugarcoat anything. You never pandered to me because of my age or treated me like I was a child in your office. I always felt like I was taken seriously and my concerns were valued.
Certainly, in the beginning, I was very hesitant to be optimistic about the future because I didn't feel that I had the luxury of looking forward, because the statistics for metastatic breast cancer were not what they are today. But now, here I am 11 years out with no evidence of disease. And it's so encouraging to me to see all of these new developments here of people with previously untreatable, uncurable conditions, achieving no evidence of disease, all of the exciting therapies that are coming out. So I do think it's a really encouraging time.
Fox: Erica, thank you so much for joining us today. It's been a great pleasure.
Kirschner: Thank you for the opportunity.
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Cite this: Communication Strategies in Breast Cancer (HER2+) - Medscape - Nov 16, 2023.