Many survivors of localized melanoma fear recurrence despite favorable prognosis
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Despite the high cure rate of localized cutaneous melanoma, many patients who undergo successful surgical resection experience severe anxiety and fear about the possibility of recurrence, according to findings published in JAMA Dermatology.
Researchers conducted a qualitative and survey-based study that included 51 patients who underwent surgery for stage 0 to stage IIA melanoma.
Investigators used semistructured interviews and the Fear of Cancer Recurrence Inventory Short Form (FCRI-SF) survey tool to evaluate survivorship experience, including fear of recurrence.
Results showed 38 (74.5%) of the 51 patients had a FCRI-SF score that met the criteria for clinical fear of cancer recurrence.
“When we catch melanoma in the early stages, the 5-year survival rate is almost 100%, and yet I’d been seeing a lot of patients in my clinic who had so much fear of getting another melanoma or of dying from their localized melanoma,” Adewole Adamson, MD, MPP, assistant professor of internal medicine in the division of dermatology at Dell Medical School at The University of Texas at Austin and director of the melanoma and pigmented lesion clinic at Dell Seton Medical Center, told Healio. “The level of fear wasn’t necessarily commensurate with actual survival rates, and — in some cases — patients weren’t getting the support they needed. These interactions with patients are what motivated me to pursue this work.”
Healio spoke with Adamson about the findings and his plans for further research in this area.
Healio: How can fear of melanoma recurrence affect a patient’s psychological well-being?
Adamson: For some patients, it can be crippling to the point that they have major anxiety about coming in for skin exams. Some even might self-medicate before appointments because they find the skin exam so terrifying.
Anxiety also can lead to lifestyle changes — specifically regarding sun exposure. These patients may develop an outsized fear of the sun, where they don’t even want to go outside. They might miss their child’s baseball game because there isn’t enough shade, or they might stop doing other outdoor activities that they used to enjoy. I tell my patients that the risk for developing another melanoma associated with spending recreational time outside may be less than the potential consequences of avoiding the outdoors. The downside of avoiding the sun include social or psychological isolation from friends and family, or not getting cardiovascular exercise, which may be worse for their psychological and physical health compared to any small decrease in cancer risk associated with these lifestyle changes. I encourage these patients to continue their outdoor activities, but just do it with sun safety in mind.
Healio: How did you conduct this study?
Adamson: We recruited adults with early-stage localized melanoma. Generally, these patients only require local excision, meaning there is no need for systemic therapy or radiation. We administered a validated survey about fear of cancer recurrence and also conducted semistructured interviews, which took about 45 minutes. We asked them about their experience in survivorship, how they felt when they received their melanoma diagnosis, and how they felt undergoing skin exams. We wanted to know how their experiences affected their thoughts about life and death.
Healio: What did you find?
Adamson: Four major themes emerged — a lot of emotions around follow-up appointments, a lot of discussion about the intensity of surveillance after melanoma diagnosis, many lifestyle changes related to sun exposure, and a lot of thoughts about life and death. More than 70% of patients had evidence of clinically significant fear of cancer recurrence. This means that a majority of patients had enough fear of the cancer coming back, or getting another cancer, that they might need some kind of support.
Healio: Did anything surprise you?
Adamson: I was surprised at how many patients had high levels of fear of cancer recurrence. I thought it might have been 30%, or half, but not 70% to 75%. That’s why I’m motivated to identify and understand this better. Maybe these individuals need to be connected with a psychologist, or maybe physicians need to do a better job explaining the prognosis to them.
Healio: What can oncologists do to help?
Adamson: Patients with early-stage disease often don’t see an oncologist. However, I hope to expand my work to include patients with stage III or stage IV melanoma, who do see an oncologist. If we’re seeing this level of fear in early disease, the level of fear is probably the same — if not higher — among patients with later-stage disease.
Healio: What is the next step in research?
Adamson: The next step is to try to identify which patients are at highest risk for anxiety and fear of cancer recurrence related to their diagnosis of melanoma. After that, we’re going to see if we can develop an intervention that lowers people’s fear of cancer recurrence and improves their survivorship experience after a melanoma diagnosis.
Healio: Is there anything else you’d like to mention?
Adamson: One thing that is unique about melanoma compared with other solid cancer types is that you can get a second, third or fourth cancer within the same organ system. That drives some of that fear — an initial diagnosis of melanoma might not just be a one-off after successful treatment. Another unique element about melanoma is that the patient participates in their own cancer surveillance. Unlike cancers affecting internal organs, the skin is visible to the patient, and the patient plays a role in looking for changes or abnormalities. This may add to the overall anxiety.
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For more information:
Adewole Adamson, MD, MPP, can be reached at Health Transformation Building, 1601 Trinity St., Suite 704, Austin, TX 78712; email: adewole.adamson@austin.utexas.edu.
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