When Patients Deal With Recurrence Anxiety, Oncology Nurses Can Help
Debi Boyle MSN, RN, AOCNS, FAAN
Oncology nurses must expect some degree of distress from their patients. Here’s how they can make a difference.
My first oncology nursing role was as a chemotherapy research nurse at our regional cancer center during the mid-1970s. Most of our patients had progressive or advanced cancer with limited treatment options, and thus were receiving clinical trial regimens. We saw a lot of malignant melanoma because one of our senior oncologists focused his research on it.
Following my clinic experience, I was in graduate school and went to the student health service to have a mole evaluated. It was on my lower forearm where I wore my watch, so it wasn’t always visible, but I noticed that it had turned maroon and had irregular borders. Yet during this visit, I was told it was nothing to worry about.
My first job after receiving my master’s degree took me 3000 miles from home to live on the opposite coast. A professional portrait was needed. Sensitive about the number of moles on my neck (later I would be told that I had dysplastic nevus syndrome), I made an appointment to have them removed. While there, I said to the dermatologist, “Do me a favor and remove this one from my forearm too. I’ve been told it’s nothing, but I want it taken off.” He acquiesced to my request.
Soon after that minor procedure, I traveled to Alaska to teach a weeklong oncology nursing core course. While there, I received a phone call from my physician telling me that I had malignant melanoma on my forearm and needed to return home immediately to undergo a wide excision and skin graft. Thus, my personal cancer journey began.
After I recovered from surgery, my early phase of survivorship was dominated by intrusive memories of all the patients with melanoma I had cared for who died. One, in particular, was a patient who presented with a small, unusual mole on his earlobe and was dead within 2 months. His gentle, smiling, freckle-laden face now became my constant companion. “Would I end up like him?” I worried. Somehow, I couldn’t recall any patient with melanoma who survived. I searched the literature to determine if this anxiety I was experiencing was common. I found some mention of this distress termed “recurrence anxiety.” However, little research had been done on this topic at that time.
Fast-forward to the present. Characterized as fear, worry, or concern relating to the possibility that cancer will come back or progress, recurrence anxiety is now recognized as the one response nearly all survivors can expect to experience.1,2 A theoretical model published in 1997 by Lee-Jones and colleagues3 suggested that a combination of cues with internal (ie, physical symptoms) and external (ie, physician appointments, media depictions) origins can trigger a range of cognitive and affective responses. These are often exacerbated by the misinterpretation of symptoms with an associated increase in somatic anxiety. Although the fear of cancer returning has received attention in more recent research, many gaps remain in our understanding of this phenomenon.
The majority of research has focused on breast cancer survivors with only isolated, small sample size investigations of other tumor types. The timing of the presentation of recurrence anxiety also requires more study, as it has been noted to occur both early in the treatment trajectory and after treatment cessation. The phenomenon’s association with specific cancers also merits scrutiny. Numerous risk factors have been identified, including younger age, introverted personality style, pre- or comorbid psychologic distress (ie, anxiety, depression neuroticism), fatigue, and unmet sexual needs, according to one study that focused on survivors with head and neck cancer.4
Recent reports outline interventions to mitigate recurrence anxiety, including mindfulness-based stress reduction offered in 6 weekly group sessions, cognitive-behavioral therapy offered in 5 individual face-to-face sessions supplemented by 3 consults over 3 months, and combinations of these approaches.5,6 Smartphone applications have been developed to provide interactive, psychoeducational, phone-based problem-solving psychotherapy.6,7 This approach offers the advantages of brevity and portability. Early results of these interventions suggest considerable benefit.
Oncology nurses must expect some degree of recurrence anxiety in their patients who are navigating life following treatment cessation. Key nursing strategies include assessment, education, and resource identification. Even if patients do not verbalize worries, it is important that nurses ask about their concerns. With this inquiry, their fears are normalized. Patient and family education by the oncology nurse at the completion of cancer therapy should entail sharing information about the prominence of recurrence anxiety.
Talking about how patients will manage this response is critical, especially as family caregivers can experience their own version. Disparate approaches to recognizing a suspicious symptom (ie, a new source of pain, an increase in constitutional symptoms such as lethargy or changes in appetite) increase stress within the family. If the survivor chooses to cope by dismissing a suspicious symptom and the spouse urges immediate reporting of it, conflict can occur. Anticipatory discussion about how coping will prevail in the presence of anxiety about new symptoms fosters optimum decision making within a noncrisis situation.
Lastly, oncology nurses should be aware of the availability of cancer phase-specific support options. Groups addressing the stressors unique to the paradigm of living with a history of cancer offer the ideal platform for discussion about recurrence anxiety. Because of the often intense, long-term relationship oncology nurses have with their patients, their counsel about recurrence anxiety is critical to minimizing the emotional sequelae of living on after cancer.
- Lebel S, Ozakinci G, Humphris G et.al. From normal response to clinical problem: Definition and clinical features of fear of cancer recurrence. Support Care Cancer, 2016. 24(8): 3265-326.
- Boyle DA. Survivorship. In: Psychosocial Nursing Care Along the Cancer Continuum (3rd ed.) 2018. Bush NJ & Gorman L (Eds). Oncology Nursing Society Press: Pittsburgh, pp. 27-41, 2018.
- Lee-Jones C, Humphris G, Dixon R, Hatcher MB. Fear of cancer recurrence: A literature review and proposed cognitive formulation to explain exacerbation of recurrence fears. Psychooncology, 1997. 6(2): 95-105.
- Mirosevic S, Thewes B, van Herpen C et.al. Prevalence and clinical and psychological correlates of high fear of cancer recurrence in patients newly diagnosed with head and neck cancer. Head & Neck, 2019. DOI: 10.1002/hed.25812, 1-14.
- Butow PN, Turner J, Gilchrist J et.al. Randomized trial of ConquerFear: A novel, theoretically based psychosocial intervention for fear of cancer recurrence. J Clin Oncol, 2017. 35: 4066-4077.
- Atechi T, Yamaguchi T, Uchida M et.al. Smartphone problem-solving and behavioral activation therapy to reduce fear of recurrence among patients with breast cancer (Smartphone Intervention to Lessen fear of cancer recurrence: (SMILE project): protocol for a randomized controlled trial. BMJ Open, 2018. DOI: 10.1136?bmjopen-2018-024794.
- Imai F, Momino K, Katsui J et.al. Smartphone problem-solving therapy to reduce fear of cancer recurrence among breast cancer survivors: An open single-arm pilot study. Jap J Clin Oncol, 2019. DOI: 10.1093/jjco/hyz005.