Coping With the Fear of Breast Cancer Recurrence

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here's your host, Breastcancer.org Senior Editor, Jamie DePolo. 

Jamie DePolo: Hello. As always, thanks for listening. After treatment is completed, many people worry about the breast cancer coming back, fear of recurrence. For some people, this fear could be debilitating. They’re anxious about every pain or new sensation they feel in their bodies. I’m joined by Dr. Shelley Johns, a researcher clinician with the Regenstrief Institute, the Indiana University School of Medicine, and the Indiana University Melvin and Bren Simon Comprehensive Cancer Center. Dr. Johns is also a board-certified clinical health psychologist through the Eskenazi Health Palliative Care program. She was senior author of a study on the effect fear of breast cancer recurrence has on people’s lives and how they cope with that fear. She joins us to discuss the research.

Dr. Johns, welcome to the podcast.

Dr. Shelley Johns: Thank you, Jamie. I am so excited to be here, and this is one of my favorite topics to talk about, because it is such a common issue.

Jamie DePolo: Well, you mentioned that. So, that’s my first question. I imagine almost everyone has it, but how common is the fear of recurrence?

Dr. Shelley Johns: Well, and I think you have it right. I think almost everyone who’s been diagnosed with cancer, at some point in their cancer survivorship, you know, from the time of diagnosis for the rest of their lives, is probably going to have some concern about the cancer coming back. And it’s understandable why, because cancer creates so much vulnerability and so much stress. There’s so much expense in someone’s life. So, it’s understandable why people would not ever have to go through it again.

In terms of fear of recurrence, though, we can talk about it in terms of, you know, really mild, occasionally fear, which, almost everybody has that. But then there’s more clinical levels of fear of recurrence, and what I mean by that is a level of fear of recurrence that is really interfering with somebody’s life, causing them a lot of distress. Some of the key characteristics of clinical fear of recurrence would include high levels of preoccupation and worry about cancer coming back, and those preoccupations and worries would need to be persistent, and there’s also what we call hypervigilance to bodily sensations.

So, for instance, like, really, really being in tune with your body, such that, oop, I’ve got a headache today. I wonder if I have brain metastases? Oh, I noticed I get really short of breath, you know, when I just went up that flight of stairs. I wonder if the cancer has spread to my lungs? So, those are some of the clinical features that are thought to be related to clinical fear of recurrence. Approximately 20% of cancer survivors experience what we would consider a clinically significant level of fear of recurrence that warrants treatment, warrants some specified intervention. Beyond that, approximately 59% would experience a level of fear of recurrence that is at least moderate. You know, where it may be a little bit more intermittent, but when it shows up, it is pretty difficult for people to manage.

Jamie DePolo: Okay, and the title of the study, which I thought was quite good, was called Getting Out of a Dark Place. So, could you talk about how you came up with the idea for this study and then explain to us how the study was done?

Dr. Shelley Johns: Sure. So, the report that you’re referring to was the first paper that we published from a large study that we have funded through the National Cancer Institute, where we are comparing three different approaches to care for breast cancer survivors who have clinical fear of cancer recurrence. You know, that higher kind of moderate to severe level that we were talking about.

And so, even though the results of the big study have not been published yet, on our first survey, what we call our baseline survey before anybody received any treatment, we asked three open-ended questions of the breast cancer survivors who were participating, to find out how fear of recurrence was affecting their lives, you know, before they got any intervention in our study. We also asked them what they were doing to cope with their fear of recurrence, because we wanted to see what people were already doing before we worked with them. And we also asked them, you know, why they joined the study, you know, what they were hoping to gain from joining the study. So, those were the main three questions that we asked. And what we discovered is that fear of recurrence was affecting almost every domain of a survivor’s life.

You know, from their emotional status, to their work, to their social and family relationships. It was really affecting just a wide variety of domains of people’s lives. And then, what we also discovered is that people were using a variety of coping skills, you know, to manage their fear of recurrence. Some people were doing some really helpful things, things like making sure that their diet, the foods that they were eating were nutritious, eating lots of fruits and vegetables. Some people had adopted a vegetarian lifestyle. Other people were getting physical activity. And then there were also some other means that people were using to cope that were a little bit more alarming to us.

There were some people who were saying that their fear of recurrence was so devastating for them and it had taken such hold of their lives, that they were trying to numb out. And they were, oftentimes, doing this with alcohol or with other drugs that may not be something that they really wanted to do, but they felt like they had no other alternatives.

So, there was a wide variety of coping, lots of resilient coping, and then there were also some other strategies, you know, that really tugged at my heart, that really made me grateful that we have the funding from the National Cancer Institute to be able to offer some really adaptive coping skills for women in need.

Jamie DePolo: Did you notice, at all, that maybe different groups had different levels of fear or different coping strategies? I guess I’m wondering, say, were younger people more or less fearful? Or did they have certain coping strategies that you could kind of notice, or did that not happen? I’m just curious.

Dr. Shelley Johns: Right. Yeah, I think that’s a really important question. What we discovered is that...well, the other thing that I need to mention about our study is to be eligible for the study that was addressing fear of recurrence, everybody had to have at least a moderate level of fear of recurrence.

Jamie DePolo: So, nobody with mild?

Dr. Shelley Johns: Right. Yeah. Exactly, and there was quite a range. I mean, there were a fair number of people with more of the moderate range, but we had a lot of women, you know, in this study who had more severe levels of fear of recurrence. And what we discovered is that the women who had more of a severe or a higher level of fear or recurrence, they were the ones who were coping with more of that avoidance. They were more likely to be in that group that were, you know, turning to strategies that they probably didn't prefer, but where they just felt like they didn't have any other alternatives.

And so, avoidant coping, like trying not to think about their fear of recurrence, but it kept coming back up. You know, some of that substance use that we talked about. Sometimes some of the women with more severe levels were withdrawing from their friends and family. It was too painful for them to be around their family and wonder, you know, is this the last Christmas or the last Hanukkah that we’re going to share together? Things like that. And I can’t remember all of your questions, but I do think that there was a relationship between some of that challenged coping and the higher levels.

Jamie DePolo: Okay. So, there really wasn’t any, say, younger women had...like, they were more likely to, say, eat a vegetarian diet and exercise, versus women who were older? That’s all I was wondering. So, it was really more related to the level of fear of recurrence than any sort of other sociodemographic?

Dr. Shelley Johns: Based on the way we analyzed it so far.

You know, in the paper that you’re talking about, we really tried to characterize the coping strategies and how fear of recurrence was affecting survivors’ lives, based on their fear of recurrence scores, you know, whether it was a little bit more in the moderate range versus the more severe range. But I think you raise an excellent question that we haven't really dove into yet. But I can tell you, from my review of the literature, that younger women do tend to be more affected by fear of recurrence than older survivors. And there are lots of different reasons why that might be. You know, younger survivors often...not always, but will, oftentimes, still have children at home that are dependent upon them, things like that. They may still be building their careers, where missing work is maybe more of an urgent issue for them than a survivor who may be retired, things like that.

Jamie DePolo: Okay. That makes sense. I am wondering though, a lot of people in our community talk about scanxiety. Is that part of the fear of recurrence, or is that something different? I just wonder if that falls in there anywhere?

Dr. Shelley Johns: Yeah, for sure. Fear of recurrence and scanxiety are very related ideas, constructs, experiences, for sure. What we have discovered, and also what is found in the literature, is that scanxiety is oftentimes a precursor to fear of recurrence. So, for instance, someone who may be listening may be scheduled for their next mammogram, and then there’s a lot of “scanxiety” that comes up around the mammogram or any other type of scan, whether it’s a CT or a PET scan, any type of imaging. And then, while they’re waiting on their results, then that fear of recurrence really gets ignited. So, those two constructs, if you want to call them that, are very related.

Jamie DePolo: Okay, and it sounds like this was the first part of your study. It sounds like, now, you’re going to start working with the women and giving them some coping strategies.

So, my last question is kind of a two-parter. What are these things that you’re going to do with them? And could some of those be used by anybody who’s listening if they have fear of recurrence and they’re finding it...you know, it’s affecting multiple areas of their lives, or if you have any other tips that people can do on their own?

Dr. Shelley Johns: Yeah. Absolutely.

So, the thing about our study is that we have finished all the data collection. We are in the middle of data analysis right now. So, we have done everything that we’re going to do with the breast cancer survivors, you know, who joined our study. And what we tested in our study, we compared two different...three different approaches.

One approach is called acceptance and commitment therapy. Another approach is called cognitive behavioral therapy. And then our third approach was just a one-time survivorship coaching class, where we invited survivors to set a goal for their survivorship. Gave them some tools and strategies that they could use to implement on their own in seeking, in pursuing that goal that they had set for their survivorship as a way to manage and navigate their fear of recurrence.

And so, the acceptance and commitment therapy and the cognitive behavioral therapy portions of our study, both of those groups met for six weeks, 90 minutes a week, all via video conferencing. And so, they worked for six weeks in their group to build some coping skills consistent with the type of therapy that they were receiving.

So, we don’t have the results of the study yet, so I can’t talk about that, but what I can tell you is that we had really high retention in the study. Ninety-five percent of the 390 breast cancer survivors who joined our study stuck with the study for a full year of data collection. And so, we’re really excited to be able to report on the results to see, is there one of those programs that was superior to the other, and what those results were.

Jamie DePolo: Could you talk a little bit...you talked about cognitive behavioral therapy and then acceptance, and there was another word there that I’m not remembering right now.

Dr. Shelley Johns: Acceptance and commitment therapy.

Jamie DePolo: Acceptance and commitment. What's the difference or what did each of those entail?

Dr. Shelley Johns: Yeah. So, in general, acceptance and commitment therapy is a mindfulness and acceptance-based approach where we teach women, you know, mindfulness skills to be able to pay attention to this present moment, instead of getting too caught up in fears of the future, thoughts about, you know, the future, which is, you know, uncertain for us all. And then we also, in that program, we supported survivors in clarifying their values, what they want their life to be about, and then setting some specific action steps in order to live more consistently with their values.

And then just bring the fear of recurrence along for the ride of their lives. It’s not about trying to change, you know, any thoughts of feelings, you know, necessarily. It’s more about living in the present moment and then, you know, using values as a guide to action in life. So, that’s acceptance and commitment therapy, or ACT.

Cognitive behavioral therapy also has lots of evidence to support it. That program was more about identifying and changing certain thoughts that may be increasing one’s fear of recurrence, and then engaging in pleasant activities.

Things that, you know, that people enjoy doing. We didn't talk about values in that group. It was just more about, you know, keeping yourself focused on pleasurable activities.

So, they're pretty different approaches. They’re kind of related because they’re all about, you know, thoughts and feelings and behaviors. But they take...you know, one is more acceptance based, accepting what’s here. The other one is a little bit more let’s get in there. Let’s identify, you know, distortions in our thinking. Let’s try to change some of those thoughts.

Jamie DePolo: Okay, and so, if someone’s listening, if they have fear now, do you have tips for them how they might be able to cope on their own in a healthy, productive way?

Dr. Shelley Johns: Right. Yeah. So, just from talking with a lot of the survivors who completed, you know, one of our programs. Survivors across all three of the groups identified really helpful strategies that they learned in each of those three programs. And so, I don't know what the results are going to be, but what we have discovered is that it’s really nice to give survivors a menu, because some people are very attracted to that mindfulness and acceptance and values-based kind of mindset.

Some survivors really want to get in there and identify and change some of their thoughts. And other survivors want more of a do it on your own program. You know, they’re busy. They feel confident that if they just have a little bit of information, that they can implement a program on their own. And so, what I would suggest is, first, if a survivor is feeling troubled by their fear of recurrence...and by troubled, I mean, you know, is it getting in the way of you living the life that you want to live? Is it keeping you up nights? Is it interfering with your relationships, with your work, with your peace of mind, with maintaining your faith?

I mean, any of those areas of your life, if you’re struggling with fear of recurrence in any of those ways, the first thing that I would suggest is talk with your medical team. Talk with them about your fear of recurrence. Ask, if you feel comfortable doing so, ask, you know...the question might be what is my actual risk of recurrence? Like, what am I really up against here? And is there anything I can do to reduce my risk of recurrence? You know, is there anything that I can do with my meal plan? Is there anything that I can do with physical activity? You know, those sorts of things. Is there any strategy that your medical team thinks that might help reduce your risk of recurrence?

And then, from there, think about, you know, do you want to pursue counseling or psychotherapy? If you do, you know, we don’t have the results of our study yet, but there have been many studies that have been conducted that show that either of those approaches that we talked about, acceptance and commitment therapy or cognitive behavioral therapy, have been shown to be helpful for fear of recurrence. So, think about, you know, what is more true for you? I mean, are you more interested in mindfulness and acceptance and values-based action? Are you more interested in identifying and changing, you know, potentially unhelpful thought patterns?

And then find a local therapist, and you can always talk to your oncology social worker. They might be able to provide some of that therapy, or they might be able to refer you to a trusted therapist in your community who can deliver one of those interventions, you know, with very...with skill.

So, those are a couple of strategies, and then some other things that we just drew from, from our study, is that mindfulness can be helpful. You know, identifying and living consistently with your values, defining what you want your life to be about, and then taking specific action steps in that direction can be super helpful.

And then, also, paying attention to your thinking. You know, are there certain thoughts that are sticky for you, thoughts that keep coming back, you know, every time you notice that you have a headache? You know, every time that you notice that you get short of breath, and then the mind automatically, you know, is triggered into fear of recurrence. You know, if those kinds of thoughts come up for you, I invite you to first practice self-compassion. You know, we have to bless our own hearts, you know, when we have some of those natural understandable thoughts and feelings, you know, that can kind of trip us up sometimes.

And then, also, if your faith is important to you, seek support from a trusted clergyperson. You know, seek support from any friend, family member, or even another survivor that you know and admire, who you think is coping really effectively. See if that survivor is willing to maybe share and offer a little bit of support and validation to you.

I think the overarching principle that I always share is, you know, there’s no need to take this journey alone. There’s lots of support that’s available. We just have to pick up the phone and call to ask for it.

Jamie DePolo: All very good advice. I was wondering, you mentioned one of the groups in your study was almost a survivorship class, teaching what the women wanted their survivorship to look like. I imagine that’s not a common thing about the country. Like, somebody couldn't just find one of those classes.

Dr. Shelley Johns: Right. Yeah. Probably not. I would definitely call...you know, call your oncologist or your oncology social worker to see what is available in your local community, because there are lots of breast cancer support groups around. And so, a lot of times, breast cancer support groups kind of offer something similar to that. And so, I wouldn't say that it was a class, per se, but it was a coaching session.

Jamie DePolo: Oh, okay, sorry.

Dr. Shelley Johns: I mean, I can see how some people would definitely think it was a class, because we presented information about quality of life. We presented some information about some of the common challenges of survivorship. So, it was kind of...you know, kind of educational in that way, but we made it pretty experiential, where we invited survivors to think of what was one thing that was kind of...that they wanted their survivorship to be about or something that they wanted to work on in their survivorship. And then we had some forms that they could fill out in the session to identify their survivorship goal. Then we gave them some information about how they could rate their progress with their goals, you know, over time, that kind of thing.

Jamie DePolo: Oh, that all sounds wonderful. Dr. Johns, thank you so much. I think this has been very educational and informative. And I really can’t wait to see the final results of the study. I will keep an eye out for that.

Dr. Shelley Johns: That sounds fantastic. Again, thank you so much for your interest in this topic, because it affects...like we had discussed earlier, it affects so many survivors. And we just want to do everything that we can to make sure that survivors who have worked so hard to complete their treatment, to go through and complete their treatment, that they can live a life that’s meaningful to them unencumbered, you know, by fear of recurrence, if possible.

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