This article is sponsored by Virginia Commonwealth University.
Fear of cancer recurrence (FCR) is a commonly-reported phenomenon across cancer populations, but has largely been overlooked among those diagnosed with brain tumors. From what we do know, FCR—which includes both fear of recurrence and/or progression—is present in nearly all individuals diagnosed with brain tumors, often heightened at times leading up to a brain scan and can contribute to maladaptive coping strategies resulting in negative quality-of-life effects. In addition, caregivers and loved ones of patients with brain tumors also experience FCR that can cause significant distress.
Symptoms of FCR include heightened anxiety when encountering cancer-related situations (ex., hearing about a friend who was diagnosed with cancer); negative emotions when thinking about the possibility of recurrence (ex., helplessness, anger); seeking reassurance that cancer has not recurred or progressed (ex., re-reading imaging reports, searching for stories of hope); and/or hypervigilance to indications of recurrence (ex., checking for signs of tumor regrowth).
From our research, we have learned that FCR looks slightly different in brain tumors compared to other cancers. Someone with lymphoma and high FCR might feel certain that swollen lymph nodes are a sign that their cancer has returned—but it may be the case that they’re experiencing a virus or seasonal allergies. On the other hand, someone with brain tumor and high FCR might feel certain that headaches or word-finding difficulties are a sign that their cancer has returned—but it may be the case that these are typical occurrences that anyone might experience from time-to-time. In addition, FCR in many other cancer populations concerns uncertainty about if the cancer will return or progress; whereas for individuals with malignant brain tumors, the uncertainty is more about when the cancer will return or progress and how that will impact their functioning.
Because FCR has not been thoroughly examined among people with brain tumor, we are not certain about the best way to treat it. Our lab, LiveNOW, is working on changing this! In collaboration with patients, caregivers, and professionals within the neuro-oncology discipline, we developed a program called FearLess in Neuro-Oncology that combines elements of mindfulness, cognitive-behavioral therapy, and existential therapy. In our initial test of this program, we received great feedback and encouraging results that led us to continue its development. We are now looking for research volunteers with primary malignant brain tumors (WHO Grade II-IV) and high FCR and/or caregivers of individuals with primary malignant brain tumors (WHO Grade II-IV) who have high FCR themselves. Eligible participants will be randomly assigned to either 1) receive the FearLess intervention immediately; or 2) receive the FearLess intervention after a 12-week delay. All participants will receive the intervention. FearLess consists of ~10 weekly sessions via Zoom led by a trained interventionist to develop skillful coping for fears surrounding tumor growth. Participants can choose whether they want to meet with the interventionist on their own or with their caregiver/loved one.
For more information on FCR in brain tumor and the FearLess study, visit our lab website at: https://livenow.lab.vcu.edu/. To request participation, email or call us at [email protected] / 804-628-6799.
