Shelley Johns, PsyD, ABPP, Associate Professor of Medicine at Indiana University School of Medicine, Board Certified Clinical Health Psychologist, Research Scientist at Regenstrief Institute, talks about acceptance and commitment therapy for combatting overwhelming fear of cancer recurrence.
What’s the difference between a board certified health psychologist and a clinical psychologist?
JOHNS: Most psychologists aren’t board certified. To become certified through the American Board of Clinical Health Psychology, I had to undergo a four-hour oral exam, credential review, and a written examination. A health psychologist is a clinical psychologist with additional supervised training in the application of scientific knowledge of the inter-relationships among behavioral, emotional, cognitive, social, and biological components of health and disease to the promotion and maintenance of health; the prevention, treatment, and rehabilitation of illness and disability; and the improvement of the health care system.
Why is the fear of recurrence a topic that you and your colleagues wanted to look at?
JOHNS: I’ve been in practice for more than 20 years and the number one problem that almost every cancer survivor deals with is the fear that their cancer will come back after they’ve completed successful treatment. After treatment ends, survivors are often left with the lingering fear that their cancer could come back, and it’s understandable why. Oncologists typically never give an ironclad guarantee that cancer will never come back. So, there’s always that sense of vulnerability. Because fear of recurrence is one of the greatest sources of suffering for the people I serve, I wanted to do something about it. My patients were not finding available psychological treatments to be very helpful, so I wanted to try something different.
Tell me how you conducted the trial and how many people were involved?
JOHNS: Our pilot study was funded by Indiana University Health, the largest health care system in the state of Indiana, and the Walther Cancer Foundation. Both funders were excited about our idea because they knew fear of recurrence was a tremendous source of suffering for cancer survivors. We enrolled 91 breast cancer survivors in just 12 weeks of active recruitment, which is uncommon in clinical research. The rapid recruitment speaks to the significance of the problem and survivors were hungry for help. We assessed participants at the beginning of the study and at the end of the 6-week intervention period. We also assessed participants one month and six months later to see if any benefits of the treatments we tested were maintained over time. We compared three different approaches to fear of recurrence. One approach was enhanced usual care where we gave survivors a booklet from the National Cancer Institute about survivorship, which contains great information and resources. They also received a brief coaching session to heighten their awareness of the information in the booklet and ideas on how they could put a program together to meet their needs as survivors. The second approach we tested was a survivorship education group that met once a week for six weeks. In these groups, survivors received information about what they could do to potentially reduce their risk of recurrence, We covered weight management, physical activity, nutrition, and the importance of adhering to surveillance guidelines for breast, colon, and cervical cancers. The third approach was based on a model of psychotherapy known as Acceptance and Commitment Therapy, or ACT. This approach has been around for more than 20 years, but had not been applied specifically to breast cancer survivors with clinically significant fear of recurrence in a randomized controlled trial.
Tell me a little about ACT?
JOHNS: ACT is an approach that is centered on accepting uncomfortable thoughts and feelings without getting hooked by them or letting them interfere with our lives. We offered mindfulness practices designed to support survivors in being fully awake to the present moment of their lives rather than dwelling on uncertainties of the future or the unchangeable past. We also supported survivors in clarifying their values. Figuring out what is important to them in their life, what they want their lives to be about, and what they want to be known for. Once survivors clarified their values, we supported them in developing weekly values-based action goals to live more consistently with their values and just bringing any fear they may be experiencing right along with them for the ride of their lives. We were not trying to ‘get rid of’ the fear. If you are a cancer survivor, you’re going to have concerns, and we hope you do because these concerns about cancer coming back may motivate healthy behaviors that can enhance survivorship. We weren’t trying to erase anybody’s fear. We were just trying to help survivors live better – live larger – so they can really enjoy the moments of their life even when fear is understandably present.
Can you do that in six weeks? Erase some of the fears and have people feeling like they’re living in a more pleasant way?
JOHNS: We didn’t ‘erase’ anybody’s fear. I don’t think any of our participants would say that their fear was gone, as that wasn’t the goal. Our results indicated that ACT was more effective than the other two approaches we tested in helping survivors cope more effectively with their fear of recurrence over time. The fear wasn’t gone, yet how distressed the survivors who received ACT were by their fear decreased over time.
How was that measured?
JOHNS: We used the validated Fear of Cancer Recurrence Inventory. All of the breast cancer survivors who enrolled in our study had clinically significant levels of fear of recurrence on the severity subscale of this measure at the beginning of the study. We only enrolled survivors who scored above the clinically significant cut-point and who were seeking some additional tools to manage their fear of recurrence.
What tips could you give women who are finishing treatment but have that fear that this is going to come back?
JOHNS: The first thing is to compassionately accept the fear because it’s understandable. Given the unpredictability of cancer, it’s hard not to have fear. I think just accepting one’s fear while finding ways to live adaptively with it can be most useful. Re-engage with what you want your life to be about now. Knowing everything that you know and being through everything that you’ve been through, what matters most to you now? What kind of mark do you want to leave on the people you love, in the work you do, and in the world? Then, taking very specific, committed actions every day to move in that direction, even if you have to bring some fear with you on the ride. Recognize that check-ups with your oncologist and having mammograms or other cancer testing can increase the fear for days or weeks. I always invite the survivors I work with to prepare for these times proactively. Connect with friends who inspire you and help you to feel loved and protected. Consider engaging in spiritual practices that may support you during challenging times. Give mindfulness practice a try. Guided recordings are available on a variety of smartphone apps and on the Internet. Mindfulness teaches us to recognize our thoughts, feelings, and bodily sensation and use these experiences as an ally to choose how we’re going to respond.
In dealing with the current COVID pandemic, it’s that fear of the unknown. Does that also apply to what we’re all going through?
JOHNS: I think the world is off its axis right now because of the COVID pandemic. We don’t know what’s going to happen, amid all this uncertainty. So many people are struggling physically, emotionally, and financially right now. Nearly a quarter of a million families in our country are heartsick, grieving the death of somebody they love to COVID. What we learned in our fear of recurrence trial may be applicable to coping with the uncertainties of the pandemic. Learning to recognize our thoughts and feelings and accept these as they are without letting them drive our car may feel supportive right now. We can recognize that we’re feeling scared, sad, angry, confused, frustrated, lonely, or whatever, without letting these feelings interfere with making values-consistent choices and taking actions that will protect ourselves, our family, and our community. Doing so makes our life better in the long run. For me, I have gotten involved in more physical activity during COVID. Maintaining social distance while walking in my neighborhood, I’ve discovered so many beautiful things where I live that I never saw before because I always told myself I was ‘too busy’ to walk. I’m making time for that now, consistent with my value of being healthy, and it feels good.
We talked to a breast cancer survivor who said, I’m going to find the funny in this. As a coping method, as a way to handle it. What do you think about humor? What do you say to people who try to find a lighter side of something that’s really not a funny situation?
JOHNS: I love that idea because it can lighten our mood. Humor is one of the things I’ve been suggesting to the patients I serve who find humor supportive. This is a really good time to get on Netflix or whatever you watch and search for funny movies or an hour with your favorite standup comedian. There are many beneficial health effects of laughter. It’s like a form of exercise because when we have some good belly laughs, we work our core a little bit. We take in more oxygen-rich air and it gets our cardiovascular system moving. Laughter also brings tension relief. I live with chronic pain and sometimes my pain isn’t as bothersome to me when I’m having a good time laughing. It’s not always easy to find humor amid challenging times, yet we can still find pockets of humor within our own homes, with our housemates, and even with our pets. Humor can help us take back our sense of power in a powerless situation and connect with others—two things that may seem lost during this pandemic.
Is there anything you’d like to add that you want people to know?
JOHNS: One of the biggest things is self-compassion. Most of us are not as kind to ourselves as we are to others. When we are going through these really deep challenges that shake us to the core, whether it’s cancer or COVID, we need to be compassionate and gentle toward ourselves How would you treat a distressed child or an injured puppy? Those are some of the things we rarely offer ourselves that can be so helpful right now.
Interview conducted by Ivanhoe Broadcast News.
END OF INTERVIEW
This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc. or any medical professional interviewed. Ivanhoe Broadcast News, Inc. assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters.
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