By Mark Elfers
In May, Blue Note Therapeutics was joined by clinical experts from MSKCC Dr. Allison J. Applebaum, Dr. William S. Breitbart, Dr. Wendy Lichtenthal, and Dr. Hayley Pessin, along with our patient advisors Anne Marie Mercurio and Michael Mancini to discuss the origins and treatments of cancer-related distress.
View a video recording of the panel or read the transcript below.
This transcript has been edited for clarity and accuracy.
MARK ELFERS: We’re going to go ahead and get started. Good morning. My name is Mark Elfers. I’m with Blue Note Therapeutics and we are really grateful for everyone that is joining. We want to give a big thank you to all of the patient advisors who have supported us along the way in this journey. It’s only with their help that we’ll be successful creating digital therapeutics that do, in fact, ease the signs and symptoms of cancer-related distress. We’ve got a handful of our patient advisors in the audience and they are going to help us as we go through today. And first, I want to go ahead and introduce our panelists from Memorial Sloan Kettering. We’ve got a great team here and I’ll hand the mic over, first, to Dr. Allison Applebaum.
DR. ALLISON J. APPLEBAUM: Good morning, everyone. My name is Allison Applebaum. I’m a clinical psychologist from Memorial Sloan Kettering Cancer Center and the Director of the Caregivers Clinic. We know that cancer is a disease that affects the family and my work focuses broadly on addressing the needs of cancer caregivers, the family members and friends who are so intimately involved in the care of patients and who experience incredible distress as a result of their caregiving role. I established the Caregivers Clinic at Memorial in 2011. It’s the first of its kind in the world and we provide targeted psychosocial support to family members and friends of patients with all sites and stages of cancer at any point of their illness journey. I’m looking forward to joining this rich discussion today.
MARK ELFERS: Thanks, Dr. Applebaum. Dr. Breitbart?
DR. WILLIAM S. BREITBART: Good morning. Welcome, everyone. Thank you for attending this. My name is Bill Breitbart. I’m chairman of the Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering Cancer Center and I’ve been at Memorial Sloan Kettering for 37 years. I started out as a clinical fellow, a trainee. I came to Sloan Kettering to work with a woman who basically developed the field of psychiatric oncology or psycho-oncology, a woman named Jimmie Holland who established the first psychiatry service in any Cancer Center at Memorial Sloan Kettering. And I am part of the, I would say, perhaps the pioneering group that developed the field and developed the clinical care standards, the science of our field, and participated a great deal in training psychologists and psychiatrists and other clinicians in all the practices and elements of research related to psycho-oncology. I’ve had a broad range of clinical and research interests, ranging from pain and fatigue to depression in various populations of patients with cancer and HIV disease as well for a while. I’ve also been very involved in the National Comprehensive Cancer Network (NCCN) distress management guidelines. We can talk about that a little bit later, but those were established in about 1997 or 1998. I was an initial member of that panel and still am on that guideline panel. Also, I run two laboratories at Memorial Sloan Kettering, the psychopharmacology and symptom control lab and, more recently for the last 15 years or so, our psychotherapy lab which develops novel unique interventions to improve quality of life and deal with issues of distress, particularly existential distress and focusing on things like meaning at Memorial Sloan Kettering. So I’m really pleased to be here and happy to participate.
MARK ELFERS: Thanks, Dr. Breitbart. Dr. Lichtenthal, good morning.
DR. WENDY LICHTENTHAL: Good morning, so happy to be here as well. I am Wendy Lichtenthal, clinical psychologist, and on the heels of what Dr. Breitbart was just sharing, my interests have been focused on developing interventions for cancer patients and their families. I came to Memorial in 2005 very interested in working with Dr. Breitbart in his meaning-centered psychotherapy work because I have a strong interest in supporting families through the continuum of cancer, which includes bereavement. So knowing that with all the adversity that cancer patients and their families face, meaning challenges come up so widely that we have worked to develop meaning-centered adaptation for bereaved family members. And I also direct our Bereavement Clinics, where I provide support services for grieving patients and families. I also work in our Breast Center at Memorial. Another stream of my research and clinical work has focused on supporting breast cancer patients from the time of diagnosis onward and a large portion of this has focused on challenges to meaning and fear of recurrence. So a big stream of my research has also focused on how we support patients with their fears, as they carry on. I’m very excited to work with you all today and be on this panel. Looking forward to the discussion.
MARK ELFERS: Thank you, Dr. Lichtenthal. And Dr. Pessin?
DR. HAYLEY PESSIN: Good morning. Hi, my name is Hayley Pessin. I’m also a clinical psychologist. I’ve been working with Dr. Breitbart for almost 20 years in this field. My research interests are really the development of empirically-validated interventions and assessments, and then the implementation of them for distress in cancer patients. I’m particularly focused on advanced cancer and end-of-life issues, but I’m interested more broadly and we work in all different ways to help cancer patients in that way.
MARK ELFERS: Thanks, Dr. Pessin. And I do want to introduce our patient advisors who are able to join us this morning, Anne Marie and Mike. Anne Marie, do you want to say good morning?
ANNE MARIE MERCURIO: I did want to say good morning, because I feel like I know all of these people, even though I don’t. So I am a breast cancer survivor. I hesitate to use that word because I’ve been wearing two hats—my own cancer, which I am a patient at Memorial and my mom who developed metastatic disease after many years and passed away in October. So I’m listening to all of the things that you guys are doing with end-of-life care with supporting survivors and I also should share that the first thing that I ever did when I decided that I wanted to get into this advocacy space was volunteer at Memorial to make the rounds and speak to patients that were coming out of surgery. And that was one of the most fulfilling things that I had the privilege of being able to do. As part of that, once a month, we would meet and I met Dr. Holland. She came and spoke to a group of about 15 of us at a small little roundtable and I came away from that just so inspired by everything that she was doing. So thank all of you for putting up with the patient advocate side of this and letting me join you for this discussion today. And I’m going to mostly sit on the sidelines, but I just needed to give you all a shout out for everything that you’re doing there.
MARK ELFERS: Thank you, Anne Marie. Good morning. It’s great to see you. And Mr. Mike. How are you doing, sir?
MIKE MANCINI: Good morning. Thanks for having me. I appreciate the opportunity to be here and to listen to the panelists today. I’m a stage IV colon cancer survivor. I’m also currently a patient as I’m on another recurrence going through active chemo. My girlfriend is also a stage IV survivor so I get to play the triple threat role of patient, caregiver, and survivor. And I think getting diagnosed at such a young age—at age 42—and also having a little bit of understanding about how important mental well-being is to health and fitness, we have a lot that we deal with as young cancer patients. It’s not just about the cancer, there’s also financial struggles that we have to deal with in the long term now—sexual issues as well. So it just makes having more of an outlet for us in ways like this thing that we’re developing for technology, etc. to give people those opportunities to try to heal and deal with what they’re going through. So I just can’t thank you enough for all that you have done and continue to do in support of patient mental well-being.
MARK ELFERS: Thanks, Mike, and I appreciate what you’re saying there. So thanks for that. Let’s jump right in guys. Dr. Breitbart, you kind of gave a little bit of intro, but maybe you can, for folks that may be new to this idea that cancer-related distress is, no kidding, a thing, give us a sense of some of the origins real quickly. I know it’s a long story to get there, but maybe just level-set the folks that are attending right now.
DR. WILLIAM S. BREITBART: It’s an interesting story and I’ll try to be brief. So Dr. Holland is a psychiatrist who was particularly interested in the emotional aspects of cancer and it wasn’t a coincidence because she was married to the very famous cancer pioneer James Holland, who was at the National Cancer Institute and the Farber Institute before it became the Dana Farber Institute. His main innovation was introducing combination chemotherapy in the treatment of leukemia, which was game changing. And so, as a duo, they traveled around the country and around the world and one of the things that James Holland did was to develop the first collaborative oncology trials called Cancer and Leukemia Group B (CALGB). So it was a way to do clinical trials now as there are these very large collaborative groups and they all agree on studying a particular new drug or things like that, and they’re able to recruit thousands and thousands of patients. So Dr. Holland is having conversations with James, her husband—her name is Jimmie, it gets confusing—and she says you asked these patients all sorts of questions about their pain and their constipation and things like that, but you never asked them how they feel emotionally as human beings. And so he put it to work. And she was the first Chair of the Quality of Life Committee of CALGB. And that was the beginning of the introduction of addressing the human aspects of interacting and development, responding to cancer and cancer treatment, etc. And so that was the first introduction of outcome measures in clinical trials that looked at things like distress, anxiety, and depression. Then eventually, the cancer centers—the NCI-Designated Cancer Centers—developed an umbrella organization called the National Cancer Center Network and they developed a set of guidelines for various cancers. And one of the things that they tapped Dr. Holland to do was to head up a guidelines panel for psychosocial issues. Now, up until that point, when psychiatrists and psychologists were involved in treating cancer patients in inpatient hospitals and cancer hospital outpatients, the standard was sort of like: Does a patient have a bonafide psychiatric cancer diagnosis? Do they meet criteria for a diagnosis? Are they that distressed? So for instance, in a landmark study done in about ‘78 or ‘79 by a group of collaborators from Sloan Kettering, Hopkins and Mass General, that study revealed that about 50% of cancer patients—a very diverse group of inpatients, outpatients, etc.—met criteria for some psychiatric diagnosis. They met criteria for depression, clinical depression, and they met criteria for an adjustment disorder, and to meet criteria for a psychiatric disorder, the symptoms of anxiety, depression have to reach a level in which they interfere significantly with function and their specific criteria symptoms.
MARK ELFERS: Well, let me interrupt there because I think what I’m hearing is that there may be a difference between cancer-related distress and normal, everyday stress that one would expect or one carries with them prior to diagnosis. So, maybe Dr. Pessin can help us out. With this difference, if I’m not experiencing my normal, everyday stress, what is the difference that Dr. Holland and Dr. Breitbart and the team, kind of back in the day, were trying to say, “Hey, this is different.” Can you help us understand that?
DR. HAYLEY PESSIN: Sure. So I think everybody’s familiar with stress, right? We all have stress in our lives, particularly this year, right? Lots of stressors, in all sorts of ways. That can take the form of anxiety, worrying, and sometimes you feel it physically, right? A lot of times it waxes and wanes. It comes and goes. There are periods that are more intense, things happening in our lives that are affecting us. And then we find a way to cope with them and get past them. Distress related to cancer is just that, right? It really stems from having an illness and centers around that. But it can take a lot of different forms: It can be sadness and depression, it could be anxiety, worry, it could be anger, it could be feeling helpless and hopeless, feeling overwhelmed, not being able to navigate things. So there are a lot of different areas where people run into trouble and feel the impact of cancer in an emotional way and that’s really what we’re talking about. It’s very common in cancer patients. Distress that meets criteria would be about 8–10% in the regular population. In primary care settings, it’s more like 10–15%. And then in cancer patients, depending on what studies we’re talking about, 35–80% of patients are already at some level of distress. So it’s very, very common. And it can come in a lot of different ways during the cancer trajectory: from diagnosis of cancer, learning about your prognosis, treatment failure, treatment side effects, financial concerns, logistical problems, spiritual concerns. I can go on and on the distress thermometer, which we use to screen for distress, it has a list of about 40 items of different sources of distress. And the great thing about that is once we figure out what the problems are, then we can try to address them. That’s the idea.
MARK ELFERS: Ok, great. We’ve got a couple of good questions coming in from the attendees. I’ll just ask the panel to let someone jump on this first one. The question is: Does the treatment of cancer-related distress reduce a patient’s experience of some of those physical pains that are associated with the disease? And then to follow on this: Could psycho-oncology interventions reduce the need for opioid or other types of medications or other types of pain treatment? So over to the panel. Who wants to grab that first one?
DR. WILLIAM S. BREITBART: I’ll take that one.
MARK ELFERS: Alright, thanks.
DR. WILLIAM S. BREITBART: So for the first 10–15 years of my career at Memorial, I was the psychiatrist for the cancer pain service, and a great deal of my initial clinical work and research work were really focused on psychosocial, psychotropic medication, and nonpharmacological psychotherapeutic interventions around cancer pain. And what’s really interesting about pain is that pain is what we call a multi-dimensional symptom, just like fatigue. So there were physical components of pain. There are cognitive components of pain, your thoughts about pain. So, if you’re giving birth, and you have pain related to giving birth, that pain is experienced differently than when you have pain in your pelvis from uterine cancer. That has a different meaning and the pain is experienced differently. And then there are socio-environmental factors that reinforce or don’t reinforce the pain experience. So there are a number of areas in which psychosocial interventions can be used to ameliorate these nonsomatic components of cancer pain. And so the answer is yes. They can help reduce pain levels and help patients cope with pain better.
MARK ELFERS: Oh, thanks for that answer, Dr. Breitbart. And so if people might walk out feeling a little better, I think what you’re saying is it can really help, top to bottom, not just, “Hey, I feel a little less sad at this moment.” So a couple of great questions coming in from Jackie. Back to the panel, have you seen the stress level of cancer patients rise due to compromised immune systems and COVID? So back over to the panel. Dr. Pessin, I see you nodding your head there. You want to take that one first?
DR. HAYLEY PESSIN: Yes. I mean, I think we can all answer that. You can all nod. Yes, we have seen a tremendous need this year from cancer patients in terms of their distress and their unique problems that they face in terms of isolation, in terms of worry about getting COVID. In terms of will the vaccine work as well for me as people are getting back out there? Is that something that I should do? There are all sorts of new challenges presented in that way not being able to see their providers as often. But the good news is we have really worked very hard. And I work with clinicians all over the country, and they are tirelessly working to provide support to people to help them through this. And I think they’ve done an amazing job with that. So if you are struggling now, it’s not too late to seek help. And we are very aware of the unique challenges for everybody in that area, for sure.
MARK ELFERS: Thanks, Dr Pessin. A couple of questions are coming in about the depression that folks may be having, or may have had prior. And they’re kind of walking around with…there’s this phrase called allostatic load. Dr. Applebaum, can you help us talk about or think about that, that burden that folks are carrying, maybe even prior to diagnosis? And how should we be thinking about that?
DR. ALLISON J. APPLEBAUM: Sure, sure. So this phrase allostatic load really refers to the cumulative burden of the stress of daily life and stress of major life events, like a diagnosis of cancer in oneself or one’s loved one, and COVID, and the pandemic and all the stress that Dr. Pessin mentioned earlier. And so allostatic load results when all of this stress surpasses one’s ability to cope. And we know that there are certain behaviors, health-related behaviors, like not exercising, not getting enough sleep, drinking too much alcohol, smoking, all the things that Mike mentioned in terms of health, the “healing and dealing,” and the opposite of “healing and dealing” that increases allostatic load. And these are certainly things that we’ve seen an increase in over the pandemic. The reality is, I wanted to acknowledge that as a psychologist, I’ve never actually written the phrase allostatic load down in the medical record. But instead, I know that it’s present when I hear patients say to me something like, “You know, Dr. Applebaum, I feel like I can’t keep my neck above water.” Or, “I just don’t know how I’m going to get through the next day or week or chemotherapy cycle,” that sort of thing that tells me that they’re struggling. And it really just is the cumulative burden of everything. And the reality is that—put the pandemic aside—a diagnosis of cancer in oneself or a loved one rarely happens in a vacuum. Right? It’s superimposed on other events like job loss or marital stress. And so it’s really the cumulative nature of all of this that contributes to what we call allostatic load that then often increases to the level where we are diagnosing a major depressive disorder or a generalized anxiety disorder.
MARK ELFERS: I think when you say those things about a term one might find in a textbook and what someone is really experiencing, that really resonates. I just want to pause and ask either Anne Marie or Mike to maybe give a little bit of a patient’s view on that thought that, “I just can’t do another thing for another second.”
MIKE MANCINI: Yeah, I mean, really I kind of just went through that personally, between having a recurrence—the chemo I was on stopped working—trying to figure out what the right next plan was, at the same time going through disability reviews through my employer, as well as from the state of Connecticut, and wondering if those were going to be approved. One was denied an increase in the disability pay because when I did return to work, I was still actively treating my cancer. So it was just a lot of stress to say, well, I did all the right stuff that you wanted me to to get better. And we know I’m stage IV, and there’s likely going to be a recurrence, but you want me to come back to work. So I did. In order to stay alive, I had to treat the cancer. But you use that as an excuse to say, we can’t increase your disability. So I feel like I got screwed by the system. And I should have just stayed out of work initially, and never done the weightlifting and the mental well-being and the healing, yoga, and all of that to try to get better to reacclimate into society in the workforce. But I can tell you, the less we focus on the stress and treating it, the more we have to focus on treating the disease. So they do go hand in hand in everything you’re talking about, from not just the disease, but dealing with COVID, being isolated again, it’s kind of like going through chemo the first time when you want to avoid everybody and not get sick. And people like to judge the things you do or don’t do. So yeah, for me, I just went through a lot of things that were very overwhelming. Everything was heating up all at once. It was a lot of stress. How do I cope? How do I deal? So absolutely, I could relate to all of that.
MARK ELFERS: Thanks, Mike. Thanks for sharing that. What I’m hearing is that cancer-related distress on top of the medical diagnosis not only makes the lived experience kind of more miserable and more terrible, but—I’ll ask the panel—is it fair to say that cancer-related distress and untreated cancer-related distress could prevent the best possible medical outcomes? And maybe I’ll start with Dr. Lichtenthal and see if she can help us understand just how to phrase that or how to think about that?
DR. WENDY LICHTENTHAL: Sure. Well, I think we have to be really careful about how we think about that. So often if I meet someone going through what someone like Mike just explained—where they’re having so much going on, above and beyond their diagnosis—is that they’ve heard somewhere or read somewhere that stress is connected to health outcomes. They have heard that stress can increase their risk of a recurrence, increase their risk of disease progression, or onset of a new cancer. And so then they become stressed about being stressed, and that’s not helpful. So when someone comes to us and is carrying that added weight of “my stress is going to hurt me,” we want to help kind of reframe that and re-angle it a bit because the literature is very complicated, and we can’t point to one person’s risk. We instead focus on their mental health, their quality of life, their general well-being, and think about how we help them manage their stress. That said, I think there are things that are directly related to medical care that we as mental health providers can support. If someone is really nervous about starting treatment and perhaps they’re putting things off, or they’re delaying, or not going for regular screenings because they are anxious, and may be avoiding, we can help them with their anxiety. We can help them when they are taking medications that have side effects and so they’re taking them inconsistently. Or when they have heard important medications have side effects, so they don’t start taking them. We can support people with those psychological factors that are impacting behaviors, and help them adhere to medications, help to empower them with coping skills that will help them engage in regular screenings that then can be connected to their ultimate health outcomes. We can help them change health behaviors. If people want to have a healthier lifestyle in terms of fitness, or eating or decreasing smoking or drinking, things like that, we can support them. But what we want to dial down is the idea, “I’m getting stressed and, therefore, something’s going to happen to me with respect to my illness.” I think that’s important.
MARK ELFERS: And I wonder if there’s a potential for the patient kind of beating themselves up and saying, “Hey, not only do I have to be strong and show this really strong front, but now that I’m feeling stressed, am I letting myself down, letting my family down?” Is that a thing? Or am I over-imagining that? Anne Marie, do you want to touch on that idea from the patient and maybe the caregiver perspective?
ANNE MARIE MERCURIO: So 100%. You’re expected to be in fight, fight, fight mode, and you tend to beat yourself up if you’re having a bad day. And I have learned to kind of assess what’s happening, at any given moment, and forgive myself if it’s going to be a Netflix kind of day. Because that’s what I need to do to take it down a notch. But I’m also mindful of the fact that I need to balance that. I can’t make every day an 8-hours-on-the-sofa day. If I see that happening, then I need to reach out for help, because that’s my trigger to understand that something else is happening here, that this isn’t just a bad day. I mean, having walked this path with my mom, from 2013, through her death, at the end of October—which was not directly related to the cancer, but it was the chemotherapy that weakened her. So for so many years, I was walking side-by-side as caregiver to her and taking care of myself. My reconstructive surgery had to be redone, that caused stress. I’m now single because my marriage fell apart in the midst of cancer treatment, because I was married to someone that was like, “What’s the big deal? You got the good cancer.” Which actually makes the top of my head want to explode, because cancer and good don’t go together in any format. So I think the very important part of this is for the person to be able to look inward, and try to figure out, “Hey, what’s going on here? Is it just a bad day? Or is this symptomatic of something else where I need a little more support?” I need to reach out and get help from a professional to help me over the hump that I may be going through. I hope that answered your question.
MARK ELFERS: No, that was great, Anne Marie. Thank you for sharing that. And that perfectly lines up with this question that we have from one of our attendees. And thanks, everyone, for all these questions. I don’t think we’ll be able to get every one of them, but thank you for writing in. So this question is about the reality of yo-yoing. You have some high stress at the onset, then you may be feeling better. And then you get some good news. And then you’re on top of the world and then everything collapses with a little bit of bad news. And then post-treatment, maybe Dr. Applebaum, do you want to lead us off on this roller coaster of everything’s gonna be great and then everything’s gonna be terrible, and where am I going to be tomorrow?
DR. ALLISON J. APPLEBAUM: Absolutely. So first of all, Anne Marie, your experience was quite a journey. And your attitude—we’re going to probably talk about that later—is phenomenal. And I wish everyone was as outspoken as you are. I’m grateful that you’ve gotten to where you are. And you, obviously in your role as patient and as caregiver, were yo-yoing. And I think we certainly see these periods of incredible distress at the time of diagnosis or recurrence. And then these periods of well-being, or so called well-being, when everything is stable, or you go into survivorship. I think what’s interesting is that I haven’t seen anyone who during that period of well-being has no anxiety. And I think we should talk about that and just to acknowledge I was, in answering this, looking at the chat and somebody acknowledged that it’s so validating to say that anxiety is normal. And so it’s normative across this journey in the yo-yoing to have anxiety because anxiety actually provides some protection for us as humans. And so I think that this is normative, so we expect the yo-yoing to happen. I think one of the things from my perspective is capitalizing on the periods of low distress to do what we call relapse prevention, to talk about what was hardest about the last period of that peak. What can we do to prevent you from getting there in the future? We know that we may not have control about what’s going to happen medically. But what are some coping techniques we can teach you so that you can better cope with what’s ahead? I just want to acknowledge this yo-yo is normal and we see it not just in patients, but in caregivers as well. And I think oftentimes what happens is it’s a different yo-yo for patients and caregivers. Whereas for patients there’s a significant distress at the time of diagnosis or recurrence, these are points when caregivers are actually going into fight or flight mode. They are focused on getting care. And when patients enter survivorship, when patients experience a decrease in distress, we actually see caregivers take an exhale for the first moment, and then they go up in distress. And so there’s this sort of opposite experience we see with patients and caregivers on this journey.
MARK ELFERS: So not only the patient is on a yo-yo, but the caregiver is on a different yo-yo which is out of sync, potentially, right? And that idea of, hey, we’re gonna ring this bell, no evidence of disease, you’re cancer-free…I just want to talk about maybe the difference between those fears. Dr. Lichtenthal, you’ve studied and thought a whole lot about this, this difference between my fear of progression of my cancer versus, fast forward, my fear of recurrence. I’m saying those things but, are they really that different? Can you help us understand that a little bit more?
DR. WENDY LICHTENTHAL: Sure. Well, I’ll start by saying fear is fear—the experience of being threatened, which is what cancer is opening up. It’s opening up a threat that people typically walk around, kind of defended against thoughts of all the bad things that can happen to us. Cancer pulls that curtain back and leaves individuals thinking about their mortality, thinking about their well-being in ways that they just hadn’t before. You asked, “Is there a distinction between fear of progression and fear of recurrence?” Fear of progression would be when someone has a known disease in their body. So they may be in treatment, perhaps, or perhaps they have an advanced disease, but there is a knowledge that cancer is there. And the fear is that it will spread further. Fear of recurrence is among individuals who have no evidence of disease, typically post-active treatment, and they’re fearing that their cancer will come back. But the psychological task in both cases would be tolerating uncertainty: “How do I live with the fact that I don’t know what’s going to happen next?” And that is something that we as human beings do not like. We do not like uncertainty. And so how does someone live with uncertainty? We can think of this at two levels: One would be what are the coping skills you need when a wave, a surge comes? How do I cope with this wave? How do I label it in a way, as Dr. Applebaum was just saying, that reminds me that it’s natural? So the task is understanding and accepting the feelings. So much of what people go through is getting in a fight with the feelings because they don’t want to feel them. Of course, who wants to feel anxious? And they want the anxiety to go away. Or they might be pathologizing themselves, thinking, “What’s wrong with me? I’m going crazy,” particularly for people who never had anxiety before, for whom this is foreign. So having coping skills, which includes how you think about the anxiety, normalizing it, thinking, “This is one of those waves. Of course, I’m thinking like this, who wouldn’t?” This changes your relationship with the anxiety and can help you surf those waves, as can any present focused kind of tactics that help you come back to the here and now. But the bigger picture has to do with how do I live? How do I live with this uncertainty in terms of living authentically, living meaningfully, living the kind of life that I want to have? And that’s where a lot of our work has been on meaning-centered approaches. “How do I make choices in my life that reflect what really matters to me?” And they go hand-in-hand, of course. But I think that then the distinction between fear of recurrence and fear of progression might come into play when someone considers, “What’s next?” or “How do I live?” They need to think about what is realistic for them. So someone who is in active treatment, for example, might not feel as well and so the kinds of things that they do, or as they look ahead, where they’re going to: “I want to move to Bali. But I can’t because I’m in treatment right now, so I can’t go do that.” Because many people get really connected to their institution. So where the coping sometimes is differentiated is, “As I look ahead, what’s realistic for me right now? What kind of life do I want to be living to be living fully as one way of coping with my anxiety?” Like with pain, anxiety, or really any distressing feelings, the more we focus on something else, the less loud the volume is on the anxiety, on the pain. So we want to be engaging in life and to be in the moment as much as possible, but that’s really hard to do. So we teach some ways of doing that.
MARK ELFERS: Thanks for sharing those insights, Dr. Lichtenthal. I do want to ask, as Dr. Lichtenthal was kind of unpacking fear of progression and fear of recurrence—to either Mike or Anne Marie—did anything resonate most acutely there for either of you?
ANNE MARIE MERCURIO: So alright, I’m going to go first as the person with the two hats. I think that there needs to be: What can we control? And what can’t we control? So I know, for example, I can tell a really quick, funny story about the fact that I swore my cancer recurred while my mom was in treatment for metastatic disease. She’s worried about me, I’m worried about her. She goes to the oncologist who happens to be my oncologist as well. I mean it’s kind of sick when you think about the fact that a mother and a daughter are sharing an oncologist. But she goes in there and instead of discussing her problems said, “Anne Marie thinks her cancer is recurring.” And the next day, he’s on the phone with me telling me to get in there immediately. We’re assessing you to make sure and of course, it was nothing. But you know, there was a big lesson learned for me over, “What can I control? And how should I be approaching this?” I should not have been complaining to my mom who was doing her best to stay stable. And in the back of my mind, I’m worrying about how long is her treatment going to work for? And what’s the next scan going to show? And where is this going to lead? And unfortunately, all of that unfolded in April of last year, which as the panelists know, was the most difficult time to try to be treating anyone. You were still trying to start up telehealth in a way that was going to incorporate caregivers into the conversation. So here’s my mom on the phone saying just spell me the name of the drug. COVID made this whole thing like on steroids, going through cancer, whether as a patient or a caregiver or a survivor is hard enough. But this just literally made it go onto steroids. So I would say, to go back to the question, “What can I control?” What can I control if there’s a rogue cell in my body that’s going to seed itself some way somewhere? I can spend every minute of every day worrying about that, or I can choose to stay in the moment. And if a symptom develops, I go get it looked at and addressed. I know that when you first exit active treatment, though, in survivorship mode—I’m going to then defer to Mike because he’s living with disease that’s progressed, and he’s trying to stay ahead of it. But when you first exit active treatment, it’s like you’re flying without a net. You’re used to being followed so closely, and I can still remember the gripping fear of, “Wait a minute. I don’t need to see you for three months. What are you talking about? I’ve been in here every two weeks!” So now Mike, it’s your turn to take the mic from me.
MICHAEL MANCINI: Thanks, Anne Marie. Yeah, I have to agree with the recurrence. So I’m on my second recurrence. Both times it happened after a chemo break. So I see Dr. Saltz—Dr Leonard Saltz at MSK—he consults with my care team here in Connecticut, and right at the end of 2019, I took a three-month chemo holiday, and it was the first time I had taken one since I started chemo in July of ‘17. So my body was getting toxic, the skin toxicity, all of that. And Dr. Saltz just felt like it was a good time to give me a break. And when we rescanned after the three months was over, things had progressed, so we had to change up treatment, etc. We stayed on that for about a year. And then just recently, this year, I had an opportunity to go to Arizona to play in the Pro-Am at the Cologuard Classic. So it was an opportunity to do advocacy work and meet Jerry Kelly, the ambassador for the tournament. He partners with Cologuard and Exact Sciences, bringing awareness to colorectal cancer and screening. So I wanted to go, I wanted to play. I’m an avid golfer and I took about six weeks off from treatment in order to be healthy and make the trip down. And unfortunately, when I came back, things were progressing again and my health significantly declined. So you know, both times it’s, “Was it my fault?” Blaming myself for taking a break, but I think that what I’ve learned a lot through cognitive behavioral behavior therapy is dealing with a lot of the negative self-talk, right? I think that’s, like Anne Marie says, “What’s in my control?” I can’t control the cancer and what it decides to do whether I take a break or not, because it’s even progressed at times when I’ve been on treatment. So what I can control is how I respond to that. And trying not to blame myself when I’m, of course, going to fall into that trap we all do. But I think the more you practice this, the more you can quickly recognize when you’re falling into that trap. And then you can implement the tools that you’ve learned to try to help get you out of that mode that you’re in, and, again, focusing on what can I control versus what’s out of my control.
MARK ELFERS: Thanks for sharing that, Mike. I do want to say there’s a number of questions and I know we’re not going to be able to get to them all. We’ll try to follow up probably in a blog post on our website and try to answer your questions. Let me switch gears. Anyone seeing someone at MSK is probably in the lucky few, maybe 15%, maybe 20%, of those patients that have dedicated psychosocial services on site or on campus. Most American cancer patients do not have anyone that has your training. And I know that the panelists are training every month groups of psycho-oncologists or oncologists that want to know how to deal with this. So how is the community doing? And I’ll just offer this to the panel: What should people expect in the community out there?
DR. WILLIAM S. BREITBART: I’d say that over the last 30–40 years we’ve trained hundreds of psychiatrists and hundreds of psychologists just at Sloan Kettering and many of the other cancer centers have training programs as well. We’ve also done national trainings around specific types of psychotherapies, etc. and we reach, again, hundreds and hundreds of folks. And the field of psycho-oncology has grown so that we now have an American Psychosocial Oncology Society (APOS) for the last 25–30 years with about 2000 members. And we have an International Psycho-Oncology Society (IPOS) that represents about 57 countries with about 10,000–20,000 people. But that is only a sliver of the need that’s out there. And so, obviously, a lot of those people do training in their local settings. They develop standards and guidelines. One of the real advances has been that all NCI-Designated Cancer Centers have to have a psycho-oncology program in their center. They have to do distress screening in order to get certified to be a cancer center. So these are all advances. But we still don’t have enough people to provide help to everyone face-to-face. And that’s why access to these kinds of services is such an important national and international health issue. And in fact, when I was president of the International Psycho-Oncology Society (IPOS), one of the things we were able to get done was called the Lisbon Declaration, which declared that access to psychosocial care for cancer patients is a basic human right. And so digital therapeutics—digital, being able to deliver these therapies in a way that can reach more people in the privacy of their homes in a convenient, evidence-based way—these are a very important development in the field. And I think it’s going to provide access for millions more patients who need it.
MARK ELFERS: Thanks for answering that, Dr. Breitbart. It sounds like we’re making progress, but there’s tons of road ahead if we’re going to really penetrate the 80% of patients that are seen in community clinics and all over the planet, really. But let me just touch on this idea that patients may feel like, I don’t want to ask my oncologist or I don’t want to ask my oncology care team for one more thing. So let me ask the panelists, just how should patients or how should caregivers ask for help? I want to arm people with the most usable phrase that they could use to say, “Hey, I’m struggling?” What should I do now that we know that it’s normal to need it? How do we ask our oncology care teams in these communities for help? And I’ll ask whoever feels like they’ve got the best answer on the panel first.
DR. ALLISON J. APPLEBAUM: I’m happy to start with this. I do a lot of what I call coaching families to be advocates for themselves. I think so many folks don’t receive care simply because they’re not asking for it. And it’s very simple. When you meet with the healthcare team, when you meet with your oncologist, make sure you say, “I am having difficulty coping with my cancer or my loved one’s cancer. Who, here or in the community, can provide support to me?” I think obviously, so frequently, these medical appointments are so filled with high stress, and they’re quick, and there’s so much information that needs to be covered. But this is an important, important question. I think for caregivers, oftentimes, there’s a sense of, “I’m not the patient with cancer, so I’m not deserving of support.” But I encourage all of you who are caregivers, or were caregivers, or will be caregivers in the future - which means all of us as humans, to ask for help as well. You know, I think the other side of this is certainly we want to empower patients and families to ask for help. But I think it is our responsibility as healthcare professionals to be doing the same. And so I encourage all healthcare professionals to ask patients and families, “How are you doing today? This week with this cycle? What can we do to support you better?” I think that oftentimes it’s such a missed opportunity. Especially now that we’re doing so much more care over telehealth and telepsychiatry, patients and families are together. It’s such a great opportunity just to ask, put everything else aside, “How are you doing?” Very simple questions, with such a huge return on investment.
MARK ELFERS: Ok, thanks. What I heard is just trying to find those words in your own language to say, “I’m not doing well. And who here can help?” I just want to make sure we’ve got that for the record. Is that what I’m hearing? Or did I misinterpret that?
DR. ALLISON J. APPLEBAUM: It’s very simple. Sometimes the simplest interventions are the most powerful, and I think there’s this element here, too, of acknowledging that I’m struggling to cope, right? There’s so much messaging, like what I’ve seen in the chat here around, “I have to fight. I have to be positive.” The reality is that when I see patients, if they’re saying everything’s great and dandy, well, I think something’s wrong. I’m going to be much more comfortable hearing about distress. But I think that getting over that hump of acknowledging that I’m experiencing distress, and I could use some support, simply just saying that is exactly what needs to be done.
MIKE MANCINI: Yeah, I agree. I think when I had my most recent recurrence, I wasn’t feeling well. I walked into the facility and said, “I need you to hook me up with the integrated care team.” And my oncologist kind of freaked out. He’s like, “I just want to make sure you know this isn’t the end of life that we’re talking about here.” And I’m like, “No, no, I know, but I need help managing my pain and my medication and everything I’m going through right now.” So I think some doctors, it’s great that up front, they’re thinking about the integrative portion of treating the cancer disease, where others it’s still almost taboo sometimes to talk about it. Like it’s only thought about when you’re ready to enter hospice. And that’s not the fact at all. We really need to bring it more up front at the beginning, because it can be so helpful throughout the whole journey of fighting cancer.
DR. WILLIAM S. BREITBART: Let me add, Mark, that with the advent of distress screening, universal stress screening, in a lot of cancer centers, there are these algorithms, if you check off, a certain level of distress on that distress thermometer, or other questions, you get an automatic referral to social work or psychiatry, depending on the severity of the stress. Because when patients are with their oncologist, they’ve got a whole list of things that are priorities, right? And they want to know, “What chemo am I going to get now that the last chemo has stopped working?” Or, “I have terrible pain.” Or “I’m terribly fatigued.” And then, they don’t know which to prioritize. And very often, the emotional state kind of ends up at the bottom of the list and you have to be focused on that. But hopefully, this distress screening allows your clinician to become aware and it has an automatic system that says, “Okay, we see you scored high on this level of distress. We’re going to refer you to social work or psychiatry.”
MARK ELFERS: Thanks for mentioning that, Dr. Breitbart. And maybe our last question here, I want to ask Anne Marie. When patients are given the screener, is there a bias in a patient to say, “I’m not going to tell these people I’m on full freakout because they’re gonna think I’m weak or lame or whatever?” Is that a thing? Or am I imagining how I would be responding?
ANNE MARIE MERCURIO: I’m so glad that you asked that question because that was going to be what I was going to comment on. I think that so many of us are conditioned to just power through and we tend to minimize what we’re going through emotionally as this is the lowest thing that I need to be worried about. I would argue from where I sit, it’s actually at the highest priority because if you can’t cope, everything else is in a cascading effect downward. And I also think that there’s an element of not wanting to feel like you’re complaining. And when you talk about your feelings or your ability to cope, I’m complaining about something that’s not tangible, but it is tangible. And I think that’s the messaging that needs to get out there to the population at large that when you’re dealing with any kind of serious health condition—and cancer being what we’re talking about today—your ability to cope and get through a day is of prime importance. Because if you can’t care for yourself, you’re not eating well, you’re not exercising, you’re not doing any of the things you need, it becomes a really vicious cycle. So I do think that most patients, and I know I did it, I know I watched my mom do it, we downplay. We downplay even some of the side effects for fear of being like, “Okay, we’re going to have to pause the treatment,” which is terrifying. So I think that on an emotional level, it just doesn’t even, it wasn’t even on my radar. I mean, other than the fact that the thermometer was in front of me, and I think I kind of knew from talking to Dr. Holland in that meeting once you hit a four they’re sending in social work. So I always made sure that I put it under a four so that I wouldn’t be. So to your question, Mark. I do think that there’s a self-selection bias in downplaying.
MARK ELFERS: Yes, okay. Well, thank you very much for saying that. It’s almost on the oncology care team to encourage the patient to speak the truth on those screeners. And then for patients and caregivers to really know, when they’re asked, “How are you doing?” “Fine” is probably not the right answer. They’re asking for a reason. Go ahead and share if you need help. Well, this hour has just flown by and I’m so grateful for everyone for attending and everyone on the panel and for Anne Marie and Mike and all of our patient advisors who helped us think about what questions would be most helpful. I just want to see if our team lead and CEO at Blue Note Geoff Eich wants to say one word to take us off the air.
GEOFF EICH: I just wanted to say thank you very much, all of you, and our patients, our colleagues and co-collaborators at Memorial Sloan. This hour has provided a real sense of meaning and a real sense of purpose, creative meaning in terms of why we’re doing what we’re doing, and who we’re doing it for. And as a recent cancer caregiver, I can tell you that it is a personal and a professional pursuit. We’re going to do this together and take this the last mile. So thank you.
MARK ELFERS: Okay, thanks. Thank you, Geoff. Thank you, everyone. Again, remember the questions that you asked in the QA, we’re going to do our best to get an answer out in our blog, and you’ll see this transcript on our blog as well. So thanks. Thanks again for all your time, and we look forward to seeing you next time.