Introduction

DR LOVE: Good afternoon, everyone. I’m Neil Love from Research To Practice, a medical oncologist, and today we have a program for patients, specifically focusing on metastatic triple-negative breast cancer. We’re going to try to address some of the common questions that come up in this situation. We have a great faculty today: Dr Lisa Carey from the University of North Carolina and Dr Rita Nanda, University of Chicago.

We’re really happy to be partnering with the Triple Negative Breast Cancer Foundation, Hayley Dinerman and her team, and also really appreciate the assistance of the CancerCare team in putting this webinar together.

As I mentioned, we have 2 great faculty members here today, but also, we have 4 other experts in breast cancer that we gave a survey to. We do mainly education for medical oncologists, a lot for nurses. This is the first webinar we’ve ever done for patients, and we’re really excited about it. But we typically do surveys, and we’re going to show you the results of a survey of our faculty, as well as these 4 investigators, of their usual treatment practices.

As we mentioned, we are going to focus on metastatic triple-negative breast cancer, not just all of triple-negative breast cancer, specifically triple-negative disease. And as we go through this discussion just be aware of the fact that we will be discussing the use of different agents that may be outside of FDA indications, so for more information please check out the package inserts for the products that we’re going to talk about.

I had the pleasure of actually speaking on Zoom interviews with 8 people with metastatic triple-negative breast cancer, a couple of patients from the faculty, as well as patients of other physicians that we work with. And we’re really going to just make rounds today. We put together some excerpts of these really almost hourlong discussions. We had a lot of things that were brought up, but we pulled out just a few we’re going to show in very short videos here, and just see what our faculty has to say, and also a little bit about what they might say to patients who bring up similar questions.

We’re really grateful to these 8 women with metastatic disease for chatting with us. It was really interesting to me to hear the issues they wanted to hear discussed, hear about their experiences, and you’ll see a little bit of — a little bit of that as we go through today.

So maybe before we get started, I just want to come to the faculty, before I show you this first video, and just ask about the name of triple-negative breast cancer, Lisa, and some of the, I guess, preconceptions that people bring into you when they see you for the first time and how you typically respond.

DR CAREY: You mean for metastatic triple-negative? Yeah. Well, triple-negative is an unfortunate name because it’s kind of named by what it doesn’t have, right? And so it was a practical — it was a practical naming thing back in the day when we had only ER-targeted therapy and HER2-targeted therapy. The truth is we all know that it’s far more heterogeneous than that. It just doesn’t fit in those bins. So it’s called triple negative. I think we all are very much looking forward to the day when we can subcategorize it by things that are targetable and eliminate that name, but we’re not quite there yet.

DR LOVE: Yeah, and I guess we’re also thinking even though we call it triple-negative it’s really kind of double-negative because one is hormone therapy and estrogen and progesterone, and the other is HER2.

DR CAREY: Right.

DR LOVE: Another issue that maybe just to bring up, Rita, before we start looking at these videos is how people get to the point of having metastatic triple-negative breast cancer. We know that some patients actually in the initial time they’re diagnosed with the disease, they may feel a lump in their breast, or it gets picked up. They may have metastatic disease right at diagnosis. A lot of other patients will initially have localized disease, they might get chemotherapy, immunotherapy, surgery, et cetera, and then later on develop recurrence and metastatic disease. Anything you want to elaborate on there, Rita, in terms of how they — people get to the point of having metastatic disease?

DR NANDA: Yeah. I mean, I think that’s a great question, and I would say the vast majority of patients in the United States who present with metastatic disease had early-stage disease first. So it’s generally less than about 10% of patients who present with metastatic disease at the time of initial diagnosis.

I think it has a tendency to be younger women that sometimes present with metastatic disease at the time of first diagnosis because they’re not getting screened, we’re not catching cancers necessarily earlier on mammograms, we’re catching them when people can feel a lump under their arm or in their breast. But again, I think most individuals who are diagnosed with metastatic disease had early-stage breast cancer first.

DR LOVE: So let’s start to take a look at — looking at these videos. We’ve always been interested in media when we’ve done physician education. We actually are known for our audio programs before there was ever a podcast. We were doing it when there were cassette tapes, if you remember that, and then CDs and now, of course, everybody’s doing podcasts. But we’ve always been interested in media as a way to get to people. We’ve done a million webinars since the pandemic, and one of the things we’ve used is short videos, and that’s what you’re going to see here tonight.

Stages of Triple-Negative Breast Cancer (TNBC); Recurrence After Adjuvant Treatment

DR LOVE: So we’re going to start out with these two patients, and actually the first patient we’ll hear from did go through that route of having prior localized therapy and then a few years later was diagnosed with metastatic disease. We’re going to dive right into some of the questions that people have in this situation. So here we go.

PATIENT 1: I had went through chemo for 4 or 5 months and then I had the double mastectomy. And then, it was like, I was done. And they told me I was good and so I really just didn’t think I’d ever get it back. I mean, I really didn’t. So this time was more of a shocker to me really because I had done all this stuff, and it come back. And I just, I still have a hard time with it. I just can’t believe it.

Honestly, I mean I had the impression I would be fine, and I just had no worry in the world for those 3 years.

I've went for the past 2 times to have my scans and it's been no disease found. And so I guess I'm more, like, if you don't see it why do I have to stay on this treatment?

I don't see an end of a tunnel for me. And I guess that's what frustrates me about it is I just don't understand or know why I have to keep on staying on it.

PATIENT 2: I don’t know much about the chemotherapy other than it’s well regarded, sacituzumab govitecan, as far as like the potential of helping people, but is there a likelihood that I’ll become toxic to it and no longer can take it or it’ll just stop working? Because that’s my fear, too, is, like, how long can I be on this medication before it doesn’t do anything anymore?

DR LOVE: So Lisa, again, we’re trying to really find out what are some of the things you say to patients. We’re not going to use a lot of slides here tonight. We just want you to listen to these questions and issues. I’m sure you hear them every day. Any thoughts about what you just heard, Lisa?

DR CAREY: Yeah, a couple. The first patient, I think, I mean, what a wonderful encapsulation of what our patients go through when they go through early breast cancer therapy and then they enter into the phase where we’re just waiting to see if they relapse or not.

And I think one of the things I always talk to patients about is what is the likelihood of the cancer coming back with the therapy that we’re planning and some sense of the timeframe that we’re — with triple negative one of the blessings is that if you get 5 to 7 years out it becomes very unlikely to come back, but there is — and her 3-year disease interval, the time between diagnosis and when it came back, is about the average for triple negative. But there is a point at which I would say you’re not out — completely out of the woods, but you’re pretty much out of the woods when you get to 5 to 7 years out. But I do think it’s a constant conversation with patients about making sure that they know what the expectations are of their early breast cancer therapy.

The second patient — and the other thing that I think both of them highlighted is once you have metastatic disease what’s the expectation of how long you’re treated. And I think the truth is that it is pretty much continuous therapy, but the goals of therapy are control the cancer and the patient’s quality of life. So we have a lot of ability to adjust drugs, doses, schedule, take holidays. I mean, there’s lots of things we can do because we’re going to be monitoring the disease.

DR LOVE: And I think you’ll see, too, in the survey that we did that you ask 6 different experts, and you might get slightly different answers, and we’re trying to give you more of a flavor of some of that. And one of the issues that I think it was the first patient brought up, Rita, was the fact she had been on therapy, she was on sacituzumab, and her scans became normal, and she wanted to know, why did I have to keep going with treatment? She also wanted to know, well, why weren’t they doing a lot of scans during these 3 years? And she was told, well, it really wouldn’t make a difference in the long run. It wasn’t really worth putting you through that. Again, I’m sure you hear this every day. Any thoughts, Rita?

DR NANDA: Yeah. No, I think, I mean, how frustrating, right? As a patient diagnosed with early-stage triple-negative breast cancer, you do everything right, you have the appropriate therapy, and then unfortunately the cancer comes back, so that is, obviously, very disappointing. And it happens about 20% to 30% of the time despite the advances that we’ve made in treatment.

In regards to why don’t we scan patients continuously after they’ve completed early-stage therapy, that comes up a lot in my practice. Patients will say well, how do you know? What if you catch my recurrence early, maybe I could be cured? And that’s really the reason that we don’t, right?

If we catch a recurrence before there are symptoms, we’re going to start therapy for patients, right? We generally don’t not start therapy. And the problem, when you catch a recurrence based on scans, patients generally feel great, and then we make them feel bad by giving them the therapy, right? That was a little bit about what the second patient talked about, having bad side effects from sacituzumab, right?

So it’s this balance. If we knew that catching a recurrence early and treating it early would improve outcomes then we would be scanning patients, but that’s not actually what happens, right? Patients do equally as well whether we catch their recurrence based on scans or we catch their recurrence-based symptoms. And so catching it based on symptoms and starting therapy, then we have the potential to improve patients’ quality of life by giving them a therapy that can help their cough or their pain or their shortness of breath, as opposed to making them feel bad and having side effects from treatment when they have no symptoms from their recurrence.

And so that comes up an awful lot, and when I explain it to patients that way, they get it, and they understand it. But hopefully we’ll get to the point someday where maybe we can catch a recurrence early and act on it and improve outcomes, but I think in 2024 we’re just not there.

DR CAREY: Could I just add something to that?

DR LOVE: Sure.

DR CAREY: I think when we start it early, I totally agree with Rita and what she said, and moreover I would just say when you start early you give the cancer a lead time on developing resistance.

DR LOVE: That’s a good point.

Long-Term Outcomes with Metastatic TNBC

DR LOVE: Let’s hear a couple other questions from patients. This is one of the most common questions, not only from the patients I talk to but the questions that were sent in, which is kind of what to expect from the future. And actually, you, I think, Lisa, alluded to the possibility that maybe at some point they could stop therapy, and I don’t know. You can tell me whether you ever bring up the possibility of cure. But let’s hear a couple more patients.

PATIENT 2: What’s the best-case scenario? What’s the worst-case scenario?

What’s the longest anyone has ever been able to survive on a metastatic triple-negative breast cancer diagnosis?

It is quite scary to read the numbers and read statistics as far as, like, what’s the median age of people surviving with metastatic triple-negative breast cancer, so I try not to take too much value into what I read because everybody’s different. Some people will sustain longer, will deal with it better, and some people will not.

PATIENT 3: When I found out it was metastatic breast cancer, I really went into a really bad place.

I really honestly thought that it was a death sentence in, like, months.

My husband, he didn’t help as far as my emotional side went, because he would get so upset and then I would get upset.

DR LOVE: We call this kind of a tasting menu because we could probably spend an hour on what each one of these videos bring up. Rita, any thoughts in terms of what you just heard?

DR NANDA: I mean, I think you’re hearing anxiety that a lot of patients have when they find that they’re diagnosed with metastatic disease. And it’s serious, and life threatening, and it means that we’re going to have patients primarily on treatment indefinitely, right? I mean, for the vast majority of patients with metastatic disease we don’t cure them. We can absolutely control disease for many patients, not all, and it’s variable, right? I think that part of the unknown is we don’t have a crystal ball, Lisa and I and other physicians out there, to tell patients you’re going to be on this therapy for a year, for 6 months, or it’s not going to work, and that’s the unknown part of taking care of patients with metastatic disease.

DR LOVE: I will say a couple of the people I talk to have already been on treatment now for 5 years, so to me it was encouraging just to hear about it. I should mention, too, I started out in breast cancer at the University of Miami, but now the last, believe it or not, 40 years I’ve just been doing education, so it’s really interesting to hear these patients talk. Lisa, any thoughts?

DR CAREY: Yeah. There are all these averages that are out there on the internet, and the problem is that an average is like taking the average age at a family reunion, right? It’s not all that useful because there’s such a big variability. And while that’s more true of the other 2 subtypes of metastatic breast cancer, it’s also true of triple-negative. And so the key is treatment and treatment response.

DR LOVE: And of course we should clarify, again, we’re talking about metastatic disease, beyond the breast. Many people with triple-negative breast cancer are cured with localized disease, particularly when systemic therapy is added to local therapy.

Let’s take a look. In a second, we’re going to take a look at the survey, but here are the therapies that we’re going to be talking about here today in trying to provide a little bit more information. We really view this as an experiment. We’re curious what you like or don’t like about how we do things. We kind of have a different way, a more conversational way of approaching it. We won’t talk a lot about chemotherapy. A lot of these patients get chemotherapy and immunotherapy, checkpoint inhibitors like pembrolizumab, when they have localized, and then initially when get metastatic disease.

But what’s more new is kind of what’s beyond that, particularly so-called antibody-drug conjugates. We’ve already mentioned one, sacituzumab govitecan. But Rita, a more recent one is trastuzumab deruxtecan, and this is an antibody-drug conjugate initially just in the other — HER2-positive disease, and now we find a certain number of patients who have some HER2 but not enough to call it positive, where these patients may respond, again, to this antibody-drug conjugate. We’re not going to talk a lot about PARP inhibitors, like olaparib and talazoparib, but those are other options for a minority of the patients.

So what’s really interesting in general, throughout oncology, Rita, are these so-called antibody-drug conjugates. And rather than showing a bunch of slides I just want you to tell us how you explain to a patient why getting an antibody-drug conjugate’s not exactly the same as getting chemotherapy.

DR NANDA: Yeah. I mean, when I talk about antibody-drug conjugates I think — I think of them as chemotherapy, because they do come with those chemotherapy side effects, but I really refer to them as targeted chemotherapies because I think that these chemotherapies a lot of times are targeting things within a cancer cell or on the surface of a cancer cell and really help shuttle that chemotherapy into the tumor. And our antibody-drug conjugates, sacituzumab, trastuzumab deruxtecan, have both been shown to be more effective than traditional chemotherapy.

And I think this whole class of drugs is super exciting. There are so many antibody-drug conjugates targeting different things that cancer cells can express that are in development. So I think that we spent the last 10 years getting immunotherapy to a place where it’s been approved for breast cancer. I think the next 10 years we’re going to be identifying a whole bunch of new antibody-drug conjugates for breast cancer.

DR LOVE: We do education for oncologists in every part of oncology, all cancers. I feel like every day we’re talking about antibody-drug conjugates, almost every solid tumor now is using them. Lisa, I’ve heard the term “Trojan horse” bringing the chemotherapy in. How do you explain to patients this? And also, can you talk a little bit about so-called “HER2-low,” because this is not every patient who has triple-negative breast cancer, just a certain number of them.

DR CAREY: Oh, god. Do I have to? It’s kind of a mess. Yeah. The Trojan horse, that’s actually the analogy that I use because the chemo is attached to the antibody, and the antibody grabs something on the cancer cell, and each of these has a little different something that it’s grabbing. And so it really is a way of delivering the chemotherapy more closely, and I think that’s a good way to think about it. That’s why Rita referred to it as more targeted.

So trastuzumab deruxtecan was developed originally in HER2-positive breast cancer, but then it was developed in what’s called HER2-low. HER2-low means it’s not HER2-positive, meaning it’s like tons of HER2 on the surface of the cell, but it’s got a little bit. And so it’s got something that the antibody-drug conjugate can grab onto, right? You don’t need that much, and it works. The problem is that the test that we use to define HER2-low was never actually designed to do that. It was only designed to identify HER2-lots, but when you get into the low it’s really not very good at that.

And in fact there was a recent trial that went to HER2-ultralow, not in triple negative, but in hormone receptor-positive metastatic disease. And it worked in ultralow too. I mean, I think it all starts to get a little bit — this is the problem of biomarkers is they really have to be like — they have to be proven to differentiate cancers in a meaningful way, and unfortunately, we didn’t really do that groundwork before this. I personally think trastuzumab deruxtecan probably works in pretty much — there’s probably a small number it doesn’t work in on the basis of HER2, but it’s not very many.

DR LOVE: It may be about — at least a third of people with metastatic triple negative are thought to be HER2-low. But as you said, we’ll see whether the definition changes as time goes on.

So I just wanted to show you a little bit, really just so you can look at it later. Again, we could spend a lot of time going through this. Incidentally, we’re talking about sacituzumab, its target, it doesn’t really matter, TROP2, how much you have, it still seems to work. So no, all these — in oncology nowadays we’re always looking for markers in the tumor that’ll predict whether a patient will do better, but here it looks like everybody benefits. PARP inhibitors are specifically a small subset. You’ve heard of BRCA. They’re used there. But you can see there’s a spectrum of different side effects that people talk about, particularly with the antibody-drug conjugates. We’ll get a little bit more into that in a second with the patients as well.

This is just another example of some of the things we ask, and you see differences. One of the reasons we do this with doctors is to show — we can go to 6 national experts, and they might not give us the same exact answer, so you might go to 2 different oncologists and get slightly different viewpoints. Here we asked them what’s the chance that a patient who’s started on one of these drugs is going to have to have the treatment stopped at some point and then maybe hopefully continued because of side effects. And you can see people giving different estimates, but roughly around the same.

Also, another question, I’m curious how you all respond to this. When people all say the same answer, we call that a consensus. When you get 5 different answers we go well, maybe that’s not such a consensus. But Rita, it looks like there’s a consensus to the question of if you reduce the dose of these commonly used drugs does it reduce the benefit, at least the ways it’s been dosed reduced the way we do it. It looks like most people say no. I guess that’s a little counterintuitive, but any comments, Rita?

DR NANDA: I think not necessarily specifically with these agents, but we’ve seen it in oncology in general. One of the major concerns patients have with dose reductions are hey, if you reduce this dose is it going to benefit me to the same degree. I don’t want to go down on the dose.

But Lisa had spoken earlier, in the metastatic setting our goal is to have an effective regimen for patients but also have a reasonable quality of life. And I think the studies we’ve seen done in even early stage or metastatic, when you adjust the dose based on what patients can tolerate it does not appear to compromise the effectiveness of the agent.

DR CAREY: The most compelling argument I give patients about this, I say do you know how we decide what dose to give patients? They do trials where they keep increasing the dose, increasing the dose until we make people super sick, then we back off by 1. And we know that everybody metabolizes drugs differently, so what your body is experiencing may vary a lot, but we do not have a nuanced approach to deciding doses that you start with.

DR LOVE: So here’s another question we asked, which is what’s the chance that you’re going to actually have to stop a drug because of side effects. And you can see, relatively small, but there in the middle, T-DXd a little bit higher. We’ll talk later on because some side effects are quality of life, but sometimes they can be serious. And one of the things with T-DXd is that it can cause in some patients inflammation in the lung that can be enough of a problem that they’ll have to actually stop it.

I think I’ll just ask — go through a couple other ones. This is the estimate in general of how long people remain on treatment. We’ve already brought up the fact that sometimes people will be on it much longer, sometimes shorter. These are some estimates, if a patient asks, these are the answers that these docs do.

This is another issue that comes up particularly with sacituzumab, which can cause drops in the blood count. We asked these docs do you give preemptive use of growth factors, and you can see a couple people say no, other people say yes. Lisa says she does; doesn’t start out that way but won’t hesitate to do it.

We asked what fraction of patients are eligible to receive T-DXd. I was mentioning maybe around a third, but you can see some people estimate as high as 60% or as low as about 30%. People don’t generally use growth factors with T-DXd. There are other issues that we’ll talk about as it relates to that.

Another thing that comes up a lot in our physician meetings is which — if you’re going to give these antibody-drug conjugates which one comes first. Right now we have these two, and at least in triple-negative metastatic disease a lot of people think that sacituzumab should come first for a lot of reasons. It’s been studied a lot in triple-negative disease.

Side Effects and Complications of Treatment

DR LOVE: But I want to bring this back to the patients very quickly, and the next topic, and you can reflect back a little bit on the survey, too, after you hear this, is side effects and complications. Here’s some thoughts from 3 patients.

PATIENT 4: If I start feeling this particular way, do I need to get in touch with doctor or do I need to go to the ER or what?

Because I had a lot of different kind of side effects with my body during that first several years, and I would panic and have to go to the hospital, and they’d run all these different tests, making sure I wasn’t having a heart attack.

And I think it could have been anxiety related but still, who do I need to contact?

PATIENT 1: The very beginning was rough for me.

But I'd say after, I don't know, about a month or 2, everything started getting better.

I still have diarrhea from time to time. It's not bad. Like I can take 2 of the pills they give me and I'm alright.

PATIENT 5: Biggest thing is possible side effects. What should I experience when I do this? And then things like premeds. Sometimes they don’t tell you what your premeds are. You have to ask. And you know, they’re just hanging bags and giving you things to swallow and they haven’t told you what it is you’re taking. But yeah, what should I expect, because you just don’t know.

DR LOVE: So Lisa, I want to drill down a little bit not just on their questions — and this was the number 1 question that came up in these 8 interviews and the questions we got sent in. Maybe also in addition to addressing these issues some of the things you say to people starting antibody-drug conjugates. What do you say to people getting sacituzumab? What do you typically say to somebody who’s going to get T-DXd?

Lisa, again, we could talk about it for an hour, but maybe just summarize some of your thoughts.

DR CAREY: Yeah. Yeah. So I think it’s crucial in the very beginning to set some expectations of what the most common side effects are so the patient knows what she might expect, what the interventions are. We’re blessed with having a PharmD who does the chemo teaching for all of these drugs, and frankly we have a nurse line that they contact, and MyChart. So we say you should let us know. Here’s how you start, diarrhea being — we use diarrhea as a for example, here’s the drugs that you have to take at home, here’s how you should take them. If this doesn’t work let us know, and here’s plan B. So it’s all about communication and access to the treating team, which is not just us, it’s actually the larger team, and I think that’s a crucial part of it.

DR LOVE: Rita?

DR NANDA: Yeah, no, I would agree with Lisa. I think we are also fortunate to have a pharmacist who does our education, and there’s 3 levels of education for our patients. I generally do a little bit, then my pharmacist will go in, and then my nurse will go in and wrap it up and consent the patient. And so they’ve got all these providers they can contact with issues. They know to page if it’s an emergency or after hours, and they can send a MyChart if it’s not an emergency or during business hours. And so it’s all about setting the expectation for what are the most common side effects. If you’re unsure, don’t hesitate to reach out because there’s always someone available. And then having a written out here’s what you do if you have this.

DR LOVE: We have this idea of having a QR code and handing it to the patient and say, “Take a look at this 2-minute video,” but we’ll see if we ever do that.

Lisa, any thoughts for some of the things you say to people who are about to begin sacituzumab. What are some of the — you saw the spectrum of things from our survey, but what are the things you try to emphasize in the beginning?

DR CAREY: I emphasize the diarrhea. And I emphasize the neutropenia and the fact of the reason for the need for monitoring and the nature of the monitoring that we’re going to be doing in them, and the fact that we may end up using growth factors, and if we need to, we will, et cetera. And I also introduce the idea that we may have to adjust the doses. I think it’s important to introduce that idea, that this is not necessarily your perfect dose, and that’s okay.

DR NANDA: Yeah.

DR LOVE: And we should mention neutropenia is a low white count, and there are growth factors that can stimulate the bone marrow to produce white cells.

Anything you want to add to that, Rita? And also, what are the things you bring up about T-DXd? We talked about it being like chemo. Do you see chemo-like side effects with either one of these ADCs? And what about the interstitial lung problems that we’ve seen with T-DXd?

DR NANDA: Yeah, no, I think that’s a great point. I think I would agree with Lisa. For me, the sacituzumab diarrhea education is really important, and maintaining fluids and the fatigue can be quite profound, as well, so letting patients know hey, if that fatigue’s really bad, well we have that opportunity to reduce the dose with the next — with the next dose that they get.

With T-DXd the big thing that I’ve found in my practice has been nausea. And so I have actually incorporated some changes based on some data looking at low-dose olanzapine continuously for patients with T-DXd nausea. Before the data came out about olanzapine, I would have to bring patients back a week out from their treatment to give them IV fluids and more IV antiemetics. But I feel like with the olanzapine it’s really been very helpful, but again can be associated with fatigue, and that is another challenge for patients, and so just again reminding them that they’re going to experience fatigue but that there are things that we could potentially do moving forward, and they just need to let us know.

Dose Reduction

DR LOVE: So we mentioned dose reduction a couple times, and as I mentioned, this was brought up by several of the patients. Here are some thoughts, and you can respond to this, as well as what we’ve been talking about in general.

PATIENT 2: The beginning few cycles were difficult.

I guess there’s a standard dosage that they start everyone out with, and I was having very bad side effects from it, and so she was able to eventually lower the dosage to where it became tolerable, and I could sustain the side effects.

I know that there’s a level that they want everyone to start with, but if they know that 90% of the people that are on this dosage can’t tolerate it, and they have to lower it, why not start at a lower dosage so that people don’t get discouraged and don’t want to continue on with treatment?

PATIENT 6: I was having diarrhea with the sacituzumab govitecan, which was kind of disheartening because I was hearing all these great things about it, and I was really excited to get on that drug knowing it was something for triple-negative patients.

I think we did reduce the dose at one point.

But I got 2 years out of it, so I can’t complain too terribly.

PATIENT 5: I actually had a tumor on my neck.

And so it was really restricting my ability to do any daily functional business.

And since I’ve started the trastuzumab deruxtecan it’s shrunk like almost completely away, and so I’m getting back to being more me.

DR LOVE: Any side effects from the treatment?

PATIENT 5: I have a lot of nausea with this treatment. and it’s almost the full 3 weeks in between treatment that I’m nauseous, instead of just a few days.

DR LOVE: Lisa, any thoughts?

DR CAREY: Yeah. I mean, I share what Rita said. I mean, I think you just have to keep trying, particularly with nausea, not just dose reductions, but also the supportive meds. We have a lot of supportive meds, and many times it takes multiple drugs to try and manage this.

Working While Receiving Treatment

DR LOVE: So I wanted to also bring up the issue — I know this must be a question that comes up when you start any of these systemic therapies, and you hear these lists of side effects: What am I going to be able to do, lifestyle-wise, and particularly am I going to be able to work? And I heard a lot of very interesting stories. Most of the patients seem like they are working and kind of going back to the same lifestyle.

But I did hear 1 story that really struck me, and I thought — this is actually Rita’s patient, and I think Rita learned a little bit by seeing this video. But I was really amazed by this story because this woman who I think initially was diagnosed more than 4 years ago, just before that she switched her job and has continued to do the job, and I just thought her story in the job was quite interesting. Here it is.

PATIENT 2: So I am a Chicago police officer, and I work specifically with families of fallen officers. So I handle Gold Star families for the last 4 years. I’ve been a police officer for 26, and the last 4 I’ve dealt specifically as a family liaison for Gold Star families and fallen officers, and officers that die by suicide, as well as any officers that happen to pass away at the police job.

I’m currently working through my treatments, but I’m also on call, so if somebody gets injured, then I respond. So I’ll go to the hospital, I’ll meet with the family.

And the families know my situation, and I think it just makes me more sympathetic almost, more so, because I can understand — we all have a loss. I suffer the loss of the life that I no longer will have, and I grieve for that every day, and these families suffer a loss of not having their loved one.

And they reach out to me, and I know that they’re going through, so we have this great relationship built.

DR LOVE: So Rita, we elected not to show the video, but this patient, like a lot of the other patients, has no hair, and when you look at her you see that she’s had a difficult time, and I was like stunned when I heard about her work and the fact that she’s continuing to do it as she gets these treatments. Any thoughts about what it’s like to take care of her, Rita? I sometimes feel there’s like a spiritual flavor that runs through oncology that really makes it fascinating. Any thoughts, Rita?

DR NANDA: Yeah, no, I mean, she’s a really amazing individual. I’ve relatively recently taken over her care after she was diagnosed with metastatic disease. She was cared for out in the community and then came to me for a clinical trial. And I mean it’s just really amazing. Both she and her husband are Chicago Police officers, and I think what I will say is one of the conversations I always with patients, especially patients who are in very high-stress, physically demanding jobs is — especially when they’re diagnosed with metastatic disease, like what do you want to do. Do you want to continue to work, or do you want to have time away from work? And that’s, I think, a really important conversation.

And with this patient, she is so committed to the job that she does, we just needed to find a way to make her quality of life reasonable enough, her side effects good enough so that she could continue to do this work that she’s really driven to do and finds a lot of satisfaction in doing.

So I think that I have other patients who will say no, I need time away. I want to focus on me. But I have other patients who say I don’t know what I’d do sitting at home. I would just be thinking about it, ruminating about my cancer, and I need to get out there, and I want to work. And so I think it’s just an important conversation for physicians to have with their patients and to try to help support them in whatever way they want to move forward.

DR LOVE: Lisa, I was just flashing on a case we had presented in one of our other webinars of a breast cancer surgeon with metastatic disease who continued to go in and do surgery. I can imagine what the colleagues there in the operating room must have been thinking. Any thoughts, Lisa?

DR CAREY: No. I think actually what you said in the very beginning, there’s a spiritual element of these relationships and how these patients face essentially what was unimaginable to them and do so often with incredible grace. It’s one of the great pleasures of being in our field, that we have the chance to help and participate in this. But either only the good get cancer, which I don’t believe, or these kind of trials brings out fundamental goodness in people who have that in them, and it’s our pleasure to be able to actually see it.

DR LOVE: Yeah. We love to ask people, how often do you get asked, isn’t oncology depressing? And most of the people who stay in don’t find it and often feel the reverse.

Support for Minor Children and Grandchildren

DR LOVE: I want to get into some other issues that were brought up by the patients, moving towards some of the other many issues that come up in this situation. This is one we’ve had interest in for a long time. We go to the annual Oncology Nursing Society meeting, we’ve been doing that every year for 15 years, and this always comes up there in cases that we present: so patients who have minor children, also grandchildren. Here’s some questions and thoughts and some experiences. These patients here had children from the age of, I think, 3 up to 19. One of them has 5 children with spectrum of ages. Here are some of their questions and thoughts.

PATIENT 6: I think it’d be good for them to give tips on how to make children feel included in some way, how to talk with them about a diagnosis, especially a diagnosis that isn’t going away.

And we all know children, if you don’t fill in the blanks for them, they will, and they’re never completely unaware of changes that are happening within their family, and so it's just really helpful to not try and hide things from them.

Everyone knows their individual child and what would be helpful or get things through to them.

PATIENT 7: I had some meetings at their schools about it and made sure I talked to them about it regularly, not trying to hide anything from them, but not trying to scare them either.

I was very honest with them, and I told them the truth about the diagnosis and the truth about the treatments. And I took a very positive attitude about it, and I never expressed to them that I was afraid or that I didn’t expect to survive, but I did want them to know what all was going on and why they had to be at certain places when they would normally be with us. I think that they do well when they’re more informed.

PATIENT 5: We’ve been pretty open with them, age appropriately obviously, since we have such a big gap in age range.

But they know everything that’s going on. They’re handling it fairly well, as well as you could. I mean it’s still hard. It’s nice for them because they see me doing better and so that’s encouraging for them.

DR LOVE: So Lisa, such a difficult question. Of course, all of these things you have to individualize it to a specific patient. Any thoughts or experiences you’ve had, Lisa? And how does your center deal with patients in this situation?

DR CAREY: Yeah. A couple of thoughts. The first is we can learn from our pediatric oncology colleagues who have done a fair amount of work in this arena and year ago really established that being frank is much better than trying to obfuscate and hide and not tell the truth. Because what the kids come up with, they see something’s going on, and what they imagine, you want to actually want them to know what’s going on. And it’s much better for everybody for them to be along on the journey.

So I generally tell patients, I ask them, so what do your kids understand about this, and do you want us to talk to them. We have the blessing of having a psycho-oncology group at my institution, and there’s a psychologist with a particular interest in this topic, and he actually has a program called Parenting with Cancer, and so he has a whole program for patients who have cancer and younger children, and he kind of helps them work through it with the kids in terms of what to — how to talk to them about it and how to manage that. I think that’s really a crucial — it’s a crucial conversation to have.

I have to say, I also have patients who just can’t do it, and every time I see them, I’m like, did you tell them yet? And they say I can’t do it. I’m going to do it next month. And at some point, the opportunity to have a good conversation and one where questions can be asked and things is going to get lost, and then I think the children might feel like they wish they had known so that they could understand it better along the journey.

DR LOVE: Such a challenging question, Rita. Any thoughts?

DR NANDA: No, I mean, I think it’s all about resources, right? Providing patients and their families resources to help them figure out how to tell patients or their children what’s going on with them. I engage with social work. Also in the pediatric side we have child life services, where they are seasoned and know how to help patients disclose information like this to their children.

But just last week I have a very young anesthesiologist who has a 1-year-old, a 3-year-old and a 5-year-old and was recently —

DR LOVE: Wow.

DR NANDA: — diagnosed with metastatic triple-negative breast cancer. Her 1-year-old and 3-year-old don’t get it, but her 5-year-old is starting to, and she really needed some advice on how to help her 5-year-old process the information, and so we got her connected with social work and child life services to help with that. I think it’s like Lisa was saying, it’s so important. Kids are smart. They figure it out. And so I think having those conversations.

And then also when — the fact is with metastatic triple-negative breast cancer she’s not going to be here very likely in 20 years, 30 years, and so she’s starting to make videos and books for her kids so that they’ll have those memories for themselves down the road of her. And so there are a lot of ways that patients deal with this, but I think there are a lot of things that we can do to help them as well.

Second Opinions and Self Advocacy

DR LOVE: So next topic: Second opinions and so-called self-advocacy. This comes up in our physician programs all the time because in so many situations in oncology there’s not necessarily 1 answer, and we always say well, does the patient want to be involved in the decision. And it really ties into whether — how patients want to be involved. Here are some thoughts and experiences from these patients.

PATIENT 6: For some people even the idea of advocating for themselves feels like being aggressive. They feel like they shouldn’t say anything. They should just trust the experts and not question them at all. And I think it’d be really helpful and empowering for people to hear from the experts how to talk to them. Like you’re on the same team and level in both are seeking your best interests.

A couple of times throughout these 5 years I’ve gotten a second opinion, and every time they agreed with my team at home so that made me feel better.

PATIENT 5: My very first oncologist that I had was actually, he was always very short, very quick in the room, he never really let me talk. If I started to ask a lot of questions he would speak over me, so my husband and I decided it was time to seek out a second opinion.

I did not have that same experience at Cleveland or with Dr Carey. They listen. They give me time to ask my questions and then they answer them thoroughly.

We have a son who has a medically complex heart defect that he was born with. And that’s the only reason I knew second opinions were a thing because I had to learn that along the way with him. But not everybody knows that they can seek another opinion.

DR LOVE: Anything else that you think maybe fits into the not-everybody-knows type category?

PATIENT 5: It’s okay to say no. Sometimes it’s okay to tell your provider no, I don’t want to do that. Again, not everybody knows that they can say no. That doesn’t mean that you have to not have other options, but maybe you think something’s not right for you and it’s okay to say no.

DR LOVE: Rita, any thoughts? How should patients talk to you?

DR NANDA: Yeah, no, I mean, I think it’s very important as a physician who’s seeing a patient to give them options, right? I always like to do that, right? You have all these different options for treatment. You have clinical trial options, perhaps. You have standard of care options. Here are the pros and the cons. And I think for patients to engage them in their own care is critical and very important because that is how they advocate for themselves, right? This treatment has these side effects. This treatment has these side effects. We don’t know if 1 is better than the other. We don’t know if one will work better than another. And in giving them that agency over their own care I think is really important.

Sometimes I do have patients who want to seek a second opinion. I will say more often than not I’m the second opinion, but sometimes they do, and I encourage that because at the end of the day patients need to know what all of their options are, and they should feel empowered to seek second opinions and make sure that they’ve turned over every rock to know what their options are and what the best option for them is. And so I think any doctor should support patients going out there and seeking other opinions and making sure that they’ve got the best option for treatment for themselves.

DR LOVE: Lisa?

DR CAREY: Yeah. I mean, I totally agree. I usually say to patients, listen, if you — if you have a doctor who tells you that you shouldn’t get a second opinion then it’s probably good to get a different doctor, right? I’m totally comfortable. I mean, I’m usually on the receiving end of them, but I’ve had many patients say listen, I’d like to hear from somebody else, so absolutely. Where do you want to go? I know people in lots of places and then can help facilitate that.

And I think the other point that the patient — one of my patients made in that video was it’s okay to say no. So it’s okay for the patients. I mean, we can come up with a plan of action or several potential plans of actions, and they can say you know what, that doesn’t sound like something I want to do. And I think it’s really important for the patient to feel that their choices are going to be listened to.

And I usually say listen, this is a partnership, but at the end of the day you’re the decider. I just need to make sure that I’ve done a good job giving you the tools to understand the choices, and then I’m here to support whatever you want to do. And hopefully that’s reassuring to patients. I think the other point that was made was when I get a second opinion, and they say the same thing that my doctor did, that’s so reassuring, which that’s — more often than not that’s what happens.

DR LOVE: I’m curious, Rita. When the pandemic started, and we shifted towards a lot of telemedicine, as educators we were doing this, all of a sudden it really changed what we do. What about virtual second opinions? Is that something you ever do, or you have your patients do, Rita?

DR NANDA: Yeah. I do it all the time. I will have to say during the pandemic it was lovely because patients could get second opinions anywhere in the country that they wanted, and I would routinely see patients from different states, and it was easy. Unfortunately, now that the pandemic is under control all of the states have rolled back these laws, and I’m really only able to give virtual second opinions to patients who live in the state of Illinois, which is disappointing. But I do second opinions virtually all the time, because many times you don’t actually need to see a patient to be able to render a good second opinion.

DR LOVE: Absolutely. It’s so frustrating. Anybody in the audience that can do something about it would be great.

Recording Clinic Visits; Complementary Therapies; Nutrition

DR LOVE: Here are a couple of other topics that came up. I actually hadn’t thought about this first thing here, recording the visit. I think I could do that in my own medical care. But also complementary therapies, acupuncture, massage, yoga, meditation and, again, maybe number 1, nutrition. Here are some questions.

PATIENT 3: My oncologist allowed us to tape it on our phone. It's really nice to either have somebody transcribe or write or keep notes. And make sure you get on MyChart so you can keep up with the hospital. And a lot of people, especially elderly people, are afraid of things like MyChart.

PATIENT 5: A lot of times when you bring up alternative therapies, you kind of get your nose snubbed up and nobody wants to talk about it.

I’ve done a lot of those things on my own, just because they’re not readily talked about in the mainstream oncology care model if you will. I do sound therapy. I do yoga as I’m able.

I think those are great resources, even if they just help you to feel better, to navigate the side effects of your chemo.

PATIENT 6: I’ve been at my cancer center for 5 years, I just this year learned that we have a dietician. And so I was like, why wasn’t that part of the welcome wagon? Like it’s the same way. I hear from a lot of people when it comes to like palliative care, and they don’t know they have access to it, and a lot of people also confuse it with like hospice and are encouraged like, no, this is all a part of the package and a part of your team throughout your cancer journey.

Another little shoutout to my cancer center. When I first started, they had massage, Reiki, and some of those things I had never experienced, and then they became part of my routine. When I’d go, I’d make sure that I went early enough before my appointment so that I’d have time to do those things. And they’re so beneficial to the patient, so I think it’d be great to discuss those things.

DR LOVE: And I’ll add a shout to the advocacy groups that a lot of times can provide support to allow patients to get that.

So Lisa, about 30 topics there in a minute, but any thoughts?

DR CAREY: A couple of thoughts. I mean, I think for complementary therapies, including things like yoga, acupuncture, whatnot, I think it is important to talk about them, I mean particularly if there’s some data that they may help a particular symptom, acupuncture in pain for example.

I think we also, as oncologists we have to be very clear with patients when — if they think something has been touted as having anticancer effects when in fact that hasn’t been shown. But I’m very much in favor of anything that makes a patient feel better. And I want them to tell me about it because sometimes it does interfere with the anticancer therapy, so I want to know about it. But I’m very supportive of that.

And I do think the one patient also commented on the importance of palliative care. I mean, this is about quality of life, getting back to as Rita mentioned just a second ago. Palliative care, if I have a symptomatic patient with metastatic cancer, I want palliative care involved with comanaging that patient with me from the beginning because it helps their quality of life, and the existing data suggests it helps survival, right? And there is a real issue with them thinking it means hospice, which it does not. And so I think that’s a message and a narrative that we have to work on because it’s still a common misconception.

DR LOVE: Yeah. When those palliative care studies came out, we’re talking about people who focus on symptom improvement, showing a survival benefit, I heard a lot of oncologists going, if that was a drug we’d be using it. So I want to know, hey, are we using it?

Rita, again, so many things that were brought up, also the issue of recording visits, how you feel about that. And MyChart also sometimes can have a downside.

DR NANDA: Yeah. I have absolutely no problem with patients recording visits. I have some patients who like to do it, and I think it’s really helpful because we throw a lot of information at patients, and it’s hard for them to absorb it all. Sometimes they need to hear it 2, 3, 4 times, and so I absolutely encourage that. Some patients like to have family members on the phone with them, family members who are out of town who couldn’t make the visit, so I encourage that.

And I just wanted to circle back around to supportive oncology just really quickly because I do think nutrition services, supportive oncology. We have acupuncture services for free for patients, and acupuncture has been shown to help mitigate some of the side effects of therapy. So I think that’s very important.

For patients when they’re taking supplements, though, just like Lisa, I ask that they take a picture of it, let me know what they’re taking so that I can have my pharmacist just double check and make sure there are no issues, drug/drug interactions, because the last thing that we want to do is being enhancing side effects or decreasing the effectiveness of the therapies that we give.

And psych-oncology, obviously, is very important for patients, both with early-stage and advanced-stage disease.

So making sure. We give patients a packet when they first are entering the University of Chicago, and they learn about our psych-oncology, our nutrition, our supportive oncology services. And I think it’s really important for patients to feel empowered to seek out those services.

DR LOVE: And I guess we should mention, I think you kind of alluded to this, there are things called complementary therapies that — symptomatic — complement what you’re doing, but there’s also alternative therapies. A couple of the patients brought up places in Mexico that they’d heard about, et cetera. And also, Lisa, we had questions about where — are there departments of integrative medicine? In the larger cancer centers they have these whole departments doing research on this. Any thoughts, Lisa?

DR CAREY: Yeah. And I think like Rita said, I mean, there’s different bins of these things, and as you allude there is a difference between complementary therapy, which can be all about quality of life and improvement in patients — how they’re experiencing this, and then there’s alternatives. We’re providing alternatives, but they’re usually evidence based, and I think the problem is sometimes people get sold a bill of goods because something’s on — someone’s trying to make a buck on the internet. And so I do want them to ask, and frequently they’ll send me something, and I’ll go look it up, because a lot of times I haven’t heard about it.

And I think the — getting back to the complementary part, that’s what integrative medicine is. And many large centers have integrative medicine, including University of North Carolina. I suspect Chicago does also, and most places do. And those are really valuable partners in the care of the patients, just like supportive oncology as palliative care is a part of that umbrella of the team approach to the care of a patient.

Living Wills and Advanced Directives

DR LOVE: So I should mention, too, I mentioned that we partnered with the Triple Negative Breast Cancer Foundation for this webinar. You’re both on the board there. I think, Lisa, you’re on the scientific, and Rita, you’re on the board as well.

This last patient, she referred to the issue of palliative care, and she actually does a lot of volunteer work with the triple negative foundation, and I asked her, like, what do you think we should bring up? And that was another question I was asking these patients, what should we bring up on this conference, which we know people from a variety of backgrounds are going to be seeing. And I asked her, what do you think we should bring up as it relates to what she referred to, which is end-of-life care, it’s been called, or palliative care, hospice care, and specifically the issue of so-called living wills and advanced directives. Here’s what she said.

PATIENT 6: I feel like you absolutely can’t avoid the topic of death and end-of-life planning with this group. And so I think it’d be good even if you just did something that was like toe dipping into the topic.

They certainly need it, and they may just not know where to find it or it’s hard conversations, so they don’t have a lot of support around them from loved ones.

Let someone know what a living will is, what an advanced directive is, how to go about filling one out.

People want to have hope.

I do feel with the death topic, people who are a bit further into their diagnosis have a much easier time with it. Because I think when you’re newly diagnosed that’s when fear is much more heightened. When you’ve got to live a little with it, sometimes — I always tell people like yes, cancer is a part of my life, but a lot of times it’s like it’s on the back burner and just simmering.

DR LOVE: Final thoughts, Lisa?

DR CAREY: Yeah. Such an important point. I think that we do patients a disservice if we don’t talk about hospice and the evolution of the disease and when things might change to going from aggressive anticancer therapy to aggressive symptom management without anticancer therapy.

I usually introduce the concept like in the second line. Because as she alluded, in the very beginning (A) I’ve got a lot of drugs, and I’ve got a lot of things that — this is not really an important time. But over time usually I say to patients listen, if you ever decide you don’t want to do this stuff, and you really don’t want to spend all your time in clinic with me, I will understand that, and I will respect that, and my promise to you is when I feel like I don’t have good choices for you, I’m not going to treat you just because I can. If I think that the choices are not in your best interest, either because I don’t think they’re going to work or I do think they’re going to make you sicker, or I just don’t have good ones, I promise I will tell you that, and we’ll talk about it, but we’re not there yet.

And so the fact that you bring it up before that is a thing it kind of gives people a chance to ask at a time when it’s not so scary. And so I think it’s really important to have very frank conversations.

DR LOVE: Rita?

DR NANDA: I would agree with that. I don’t generally do it the first time I see a patient or even on their first line of therapy. I think it’s very hard, and it’s a balance of giving patients hope and knowing that we can do things to help extend their life, but then also recognizing at the time of disease progression what are your goals, what are your wishes, what do you want to do, and how do you want to move forward.

I have patients who, if you can’t promise me this is going to extend my life, I don’t want to do it. I would rather not spend all my time here at the hospital, and I’d like to be with my family and traveling while I’m still feeling well. And then I have other patients who unfortunately we’ve exhausted a number of lines of therapy, and their status is declining, and I don’t necessarily think they’re going to be able to tolerate too much more.

I think this is also a critical part where a referral to palliative care and supportive oncology helps too, because sometimes it’s a little bit easier for those conversations to be broached by not the doctor who’s driving the care because, I’m not saying that we don’t circle back around and think about that, but if I bring it up it’s perceived as oh, you’re giving up on me. You don’t think I’ve got more therapies to benefit from. And so I think that’s where that strong partnership with palliative care is really important from the get-go.

DR LOVE: So Lisa and Rita, thank you so much for joining us today. I know everyone learned a lot. I particularly want to thank the 8 patients who were nice enough to meet with me and share their thoughts so we could bring this out to you. When we do the work for physicians, we always say there’s no beginning and end here, we could talk about this all day long. What we tried to do with you today is what we do with the docs, we just tried to provide you some practical, useful information, hopefully, and hopefully there will be another time. We’ll be really curious to know what you liked or maybe think could have been better about this. But thank you very much, audience, for attending, and have a great night.

Thanks so much, Lisa. Thanks, Rita. Have a good one.

DR CAREY: Thank you.

DR NANDA: Thank you.

DR CAREY: Bye, everybody.

DR NANDA: Good night.