Anxiety Management for Patients and Caregivers

Why anxiety management is so important for all those affected by cancer, plus actionable coping strategies.

Guest: Kelly Trevino, Ph.D., clinical psychologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital.

Host: John Leonard, M.D., world-renowned hematologist and medical oncologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital
Anxiety Management for Patients and Caregivers
Featured Speaker:
Kelly Trevino, PhD, Clinical psychologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital
Guest Bio
Kelly Trevino, PhD, is a clinical psychologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital with expertise in working with people with cancer and older adults. She is dedicated to helping patients and caregivers utilize their strengths to manage distress, improve relationships and live in a way that is consistent with their values. Dr. Trevino also conducts research on distress in cancer patients and caregivers and designs interventions to improve care in these populations.

Learn more about Dr. Kelly Trevino

Host Bio
John P. Leonard, MD, is a world-renowned expert in the research and treatment of lymphoma and other cancers, and is devoted to providing personalized and compassionate care to people affected by these diseases. As the Associate Dean of Clinical Research at Weill Cornell Medicine and NewYork-Presbyterian Hospital, Dr. Leonard is a leading proponent of the value of clinical trials in delivering novel therapies and cures to patients.

Learn more about Dr. John Leonard
Transcription:
Anxiety Management for Patients and Caregivers

Dr. John Leonard: Welcome to Weill Cornell Medicine Cancer Cast, conversations about new developments in medicine, cancer care, and research. I'm your host, Dr. John Leonard, and today's topic will be anxiety management for patients and caregivers. Today's guest is Dr. Kelly Trevino, a clinical psychologist at Weill Cornell Medicine and New York Presbyterian Hospital, with expertise in working with people with cancer and also with older adults. She is dedicated to helping patients and caregivers utilize their strengths and manage the stress, improve relationships, and live in a way that is consistent with their values. Dr. Trevino also conducts research on distress in cancer patients and caregivers and designs interventions to improve care in these populations. Thank you very much for being here today and joining us. This is a very important topic for our patients, so we’re glad to have your expertise.

Kelly Trevino, Ph.D.: Thank you. It’s a pleasure to be here.

Dr. Leonard: The term “anxiety” which is really our focus today, we all have perceptions or our own definitions, but how in a strictly diagnostic way or scientific way do you define anxiety? Clearly, it’s exacerbated or it’s special in patients with cancer. Give us a sense of the term and the area as you think about it when you approach cancer patients in particular.

Dr. Trevino: Generally, we think about anxiety as a reaction to a threat. Whenever anybody feels threatened in any way be it a physical threat or a threat to your emotional well-being. Anxiety is really a normal reaction to that threat and it can be helpful. It can activate us to protect ourselves from the threat to get away from the thing that is threatening us. The problem is that anxiety, when it gets to very high levels, is no longer helpful and actually can make daily tasks very difficult. When we think about that kind of anxiety, the definition is really around having worries or feelings or nervousness that are difficult to control and start to really bleed into all aspects of a person's life. They're always worried about whatever threat they're dealing with; they're having trouble sleeping because of those worries. It's at that point where the anxiety goes from being a normal helpful response to something that is what we might call abnormal perhaps or maybe more problematic and something that would benefit from treatment. Of course, cancer is a huge threat. It's a threat to physical health, a threat to our daily lives and our relationships and so having anxiety in the context of cancer is certainly normal, but again, when it gets to that point where it's interfering with people's ability to get through the day, that's when we think it's something that really needs treatment.

Dr. Leonard: Given that spectrum, how can people identify when it’s gone from the healthier normal to the abnormal unhealthy state? Are there any clues or tricks or something to say this just isn't the normal cancer worries but it’s now something bigger that needs perhaps some different interventions?

Dr. Trevino: Absolutely. The first thing is if a person is having a hard time stopping the worry. It's just always on their mind, even when they're doing other things, they're still anxious and worried about the cancer, that's a sign that treatment would be helpful. You could also look for more concrete physical signs, so if people are having a hard time sleeping because they're worried about cancer if they're very irritable and it's having a negative impact on their relationships with others, that's a sign that the anxiety has become problematic. There are physical symptoms associated with anxiety, so a lot of people will experience tension headaches, for example, that are the result of the anxiety. Those are important things to talk with your physicians about because sometimes those symptoms can overlap with symptoms of cancer or side effects of treatment, but if people are having symptoms like muscle tension, rapid heart rate, things like that, those are also signs that the anxiety really would benefit from some treatment.

Dr. Leonard: The intersection between quality of life and anxiety seems to be pretty strong and obviously if somebody, as you describe, is having physical symptoms, it’s relatively easy to connect those to quality of life if they can't do things or are feeling pain or other physical symptoms, but in the more typical anxiety, how does that connect with quality of life and how does that affect people in a way that we should identify that anxiety, even if it’s more normal or more natural in line with the situation?

Dr. Trevino: The thing about anxiety is that it can really impact the quality of life across all domains of life. Certainly, we touched on some of the negative physical impacts, but there are negative impacts on social quality of life, so anxiety can make people feel irritable, which can cause them to perhaps be really critical of loved ones or cause problems in relationships. Sometimes people who are anxious will avoid situations that they think might make the anxiety worse and that can be a problem if it leads people to socially isolate, spend more time by themselves, which is not good for the social quality of life but also for other mental health problems like depression. Anxiety is one of those reactions in the context of cancer that can really have a very global negative impact on quality of life and that it can also build on itself. If you're feeling anxious and then you're not sleeping, that makes it harder to get along with other people, which may reduce social support, which makes people more anxious, so you can really create this cycle where the anxiety builds on itself and gets worse over time. We certainly would want to interrupt a cycle like that. 

Dr. Leonard: I find your characterization or your use of the term "threat" very helpful because obviously, a threat is not necessarily in line with reality. If I feel threatened, I may truly be threatened or I may perceive a threat. In the case of cancer, obviously the perception of the cancer and the risk from the cancer versus the reality of the risk for the cancer may be different and we've talked about this in some of our research projects. It strikes me as a corollary to that that understanding the disease and the reality of the disease versus your perception of it is a big part of either avoiding or management anxiety.

Dr. Trevino: Absolutely. One of the unique and good characteristics of humans is that we can project ourselves into the future and worry about things that haven't happened yet. We can in a sense make threats for ourselves in a way that perhaps other animals can't. What that means is that we can generate a lot of anxiety based on something that doesn't actually exist. I think that’s a very easy thing to happen for something who has cancer. It’s very easy to worry about what if the cancer gets worse, what if the treatment doesn't work, what is my life going to look like six months or two years or five years from now? While those are certainly normal questions, sometimes they're based on concerns that are less likely to happen. Having an understanding of what your illness is and what you're saying is understanding the nature of the threat is really important because then you can manage it better, and if your thoughts then start to go to some of these other worries about what if the cancer gets worse, for example, you can check in with yourself to say is that something that my oncologist has told me is likely to happen, and if not, then maybe that's something that is not helpful to worry about right now because it's not a reality at the moment. That's very hard to do and all of these thoughts are very normal in the context of cancer, but it can help to check in with how you're thinking about it to make sure that what you're thinking is based on reality. 

Dr. Leonard: In a minute I going to get into what people can do to cope with anxiety, but before we get there, I want to get to two special categories of people that may be experiencing anxiety in this context. One is older patients because I know one of your areas of expertise is older patients and clearly many patients with cancer are older. What about the aging process or being older either exacerbates it or changes anxiety, and also caregivers are clearly anxious about their loved one, what are the issues that caregivers face in that context?

Dr. Trevino: Older adults with cancer and caregivers are two very large and growing populations in the cancer world, and interestingly, there is not as much research on these groups as you might imagine, given how large they are. That being said, generally speaking, when we look at older adult patients versus younger adult patients, older adults tend to have lower levels of distress and there are a lot of hypothesized reasons for that, life experience, for example, sources of coping is one possibility. That being said, many older adults do have elevated anxiety and part of what makes cancer challenging for some older adults is that they're also dealing with other physical comorbidities associated with aging. This has been referred to in the field as the double whammy of cancer and aging. You might already have arthritis or heart disease and on top of that you get cancer, so it just exacerbates the whole intersection with the medical field. You have more appointments now and everything that comes from managing these kinds of illnesses. When we think about treating anxiety for older adults with cancer, we are thinking about that context of aging and how to integrate anxiety treatment in what can be a very complicated health situation.

For caregivers, one of the great advances in cancer care has been that we can provide a lot of treatments on an outpatient basis so people have to spend less time in the hospital. What that has meant is that informal caregivers play a larger role than perhaps in the past in terms of caring for people with cancer, so they're performing more medical tasks for example than they might have in the past. That’s often in the context of jobs and families the caregivers are also managing, so the burden of cancer caregiving is very high for a lot of people and if I was going to say one thing about cancer caregivers, it’s that because there are so many tasks for them to do, often they start to neglect their own self-care. That can just contribute to not only poor health in the caregiver but also greater difficulty caring for the patient, which then just creates additional problems from a cancer care perspective. A theme with cancer caregivers always is working with them to maintain some level of self-care to the degree that they feel able to manage their own health and anxiety. 

Dr. Leonard: How can people cope with anxiety? Obviously, there are pharmacologic ways of doing this, and I think different people, it’s often faster for some people but not the preferred way for many situations, and then strategies that people can use or can help their loved ones employ to try to manage this thing. What are some of the key areas here?

Dr. Trevino: There are certainly medicines that can help with anxiety. Sometimes they are not able to be used in the older adult population because of side effects and so forth, but they can be very helpful and that’s something that people should talk to their providers about. In terms of alternative strategies, we’re really thinking about two categories. The first is behaviors or actions that people can take to manage anxiety, and some of these are really straightforward, which is nice because they're relatively easy to use. For example, deep breathing, focusing on taking deep and controlled breaths is a very effective anxiety management strategy because anxiety can activate the nervous system and deep breathing calms it back down. Deep breathing is something people can do on their own, you can do it anywhere, so it’s really one of the tried and true strategies. A couple of other behavioral techniques are things like muscle relaxation exercises that really work to release muscle tension, which can be helpful with people that are having headaches or shoulder pain, back pain related to anxiety. Other techniques are things like guided imagery where people focus their minds on a relaxing scene to try to first five their mind a break from the worries but also bring down that activation that can come with feeling anxious. You can even go on the Internet and find scripts for things like guided imagery or mindfulness exercises that are really helpful. I’d also say making sure that people have adequate social support is a really effective strategy and there's a lot of research on the benefits of social support for distress management, so we really can't minimize that. 

That’s the first category of these behavioral strategies for anxiety management. The other we've alluded to is how people think about their situation. Our thoughts really influence how we feel about cancer, about our role in cancer, and one thing that we really work with people on is examining those thoughts because at times, there is a tad of untruth in the way we think about things, something that’s not quite consistent with reality. That piece of untruth can really drive anxiety. I remember one time I had a patient who had a lot of anxiety around getting results for a scan and he was in the waiting room waiting for the scan results from his oncologist and the oncologist was running late, so he was waiting a long time. His thought process in the waiting room was my oncologist is late because he knows my scan is bad and he’s trying to figure out a way to tell me. He spent half an hour in the waiting room thinking this and his anxiety was through the roof, and the reality was the scan results were actually great; the oncologist clinic just ran behind. This is very common when people are getting cancer care, so that was a really nice example of how his anxiety was driven by these thoughts that there was a piece of untruth in that. Once he could examine that and challenge it and say I know my oncologist is very busy, I know he’s run late before, then he could manage the anxiety a little bit better.

Dr. Leonard: It strikes me that there are patients where their care is really compromised beyond their quality of life, beyond their coping, where either they’re not getting care because of anxiety or getting too much care, too much monitoring because of anxiety. That seems to be a major issue and takes a lot of time because unless you address the anxiety, you're not going to be able to optimally manage the cancer. 

Dr. Trevino: Absolutely. There's actually more recent data on this that anxiety really can drive cancer treatment decisions in a way that might not be evidence-based, meaning that a decision might be made to initiate treatment, for example, even if that wasn't needed based on what we know about the cancer treatment. The other issue that can happen is the data suggests that if anxiety is not treated, a patient might be a risk for things like interruptions in their cancer treatment, missing doses of chemo for example, and anxiety is very treatable. It doesn't actually take much time or resources to treat, so I absolutely agree that given there could be such a negative impact on the treatment of the cancer, it really makes sense to identify people who have a very high level of anxiety and provide them with some treatment first.  

Dr. Leonard: I want to wrap up in a minute, but first, I know you spend a good part of your time doing research on anxiety and psychosocial support of the stress in cancer patients. What are the key areas of research going on and the key studies or areas of research that you think about promising and important, some of which patients may want to participate in if they have access to it with regard to addressing this really important area?

Dr. Trevino: The really great thing about research and in anxiety treatment is there actually is a lot of really good data on what works. The behavioral strategies that I mentioned, the thought examination, there are lots of studies showing that those techniques are effective in reducing anxiety. I think where the research really is now is examining how we integrate these kinds of treatments into cancer care so that patients can actually get them. It’s what we might call an implementation research question. If we have a treatment that works in a controlled research environment, how do we provide that in a cancer care setting, which is complicated, and also varies. What the cancer clinic looks like at Weill Cornell and New York Presbyterian might be different than in a clinic in upstate New York, which is serving a different population. These are research questions, we can examine what makes it easier to implement these interventions, what makes it harder, what do we need to provide to make sure the patients can get these treatments in a way that is well integrated into their cancer care. One example of this is traditionally a lot of the psychotherapy kinds of anxiety treatments have been in person, but if you are an older adult with cancer, coming in for an additional appointment can be a huge obstacle to care. Thinking about the telephone, for example, as a mechanism or the Internet as a way to deliver these interventions is more where the field is moving because there is this recognition that if we just keep piling on in-person appointments, people eventually just can't keep coming. They don’t want to come and it’s hard for them to come. I think it’s questions like that at this point that the field is really grappling with so that treatments that have been developed are available. 

Dr. Leonard: as we wrap up, the key message that you want to leave people with if they're dealing with cancer or a loved one with cancer and how to tackle or at least consider management of anxiety in that group of people.

Dr. Trevino: I would say maybe a two-part message. The first part being that having some anxiety in the context of cancer is certainly normal, so if you're feeling anxious, it’s not a reason to judge yourself or to feel as if you're weak or not managing well. That being said, there are treatments like what we've been talking about that are effective in helping reduce or manage anxiety. The flip side of saying that it’s normal is also saying that just because it’s okay to feel anxious doesn't mean there's not something that we can do to reduce the impact that has on the quality of your life. This is something that is entirely reasonable to bring up to your oncologist who can maybe help you find resources. I think sometimes people will say to me my oncologist is so busy, I just didn’t want to bother him. No, the oncologists want to know or your nurse or whomever on your team that you're comfortable with want to know if you're having anxiety so that they can find you the resources that you need. I think that’s the dual message. Don’t judge yourself for having anxiety but at the same time ask us. We have resources we can offer. 

Dr. Leonard: Thanks very much for joining us today. This has been a great discussion and I know this issue is a major focus and by many people an appreciated focus on the cancer experience. Thank you for joining us and for your work in this area.

Dr. Trevino: Thanks for the invitation. It was a pleasure.

Dr. Leonard: I want to invite the audience to write to us at cancercast@med.cornell.edu with questions, comments, and topics you'd like to see us cover more in depth in the future. That's it today for Cancer Cast, conversations about new developments in medicine, cancer care, and research. I'm Dr. John Leonard. Thanks for tuning in.