Survivors of early-stage melanoma have high rates of fear of recurrence, study finds

A qualitative study found that most survivors of localized cutaneous melanoma report high levels of fear of cancer recurrence, negative feelings around melanoma monitoring and surveillance, negative emotions around lifestyle changes and thoughts about life and death.¹ The findings, which were published in JAMA Dermatologythey emphasize the need to address patients’ psychological well-being and implement supportive interventions when necessary.

In the United States, melanoma is the fifth most common cancer among men and women, and although it is more common in older people, it is also one of the most common cancers diagnosed in younger adults.² Half of all melanomas diagnosed in the US are stage 0, either melanoma in situ (MIS) or stage I early invasive melanoma, which have a relative survival rate of over 100%.¹ This means that the all-cause survival rate among those with MIS or stage I melanoma is higher than among age-, sex-, and race-matched controls without melanoma. The prognosis is good for these patients, but they usually undergo frequent follow-up examinations and tests to check for recurrence or subsequent primary melanomas.

Many studies have documented the psychological and physical repercussions of a melanoma diagnosis. However, despite the increasing incidence and prevalence of lower-stage melanomas, particularly MIS, fewer studies have used qualitative methods to understand how a melanoma diagnosis affects the lived experiences of this patient population, wrote the authors of the study. Notably, few studies have assessed fear of cancer recurrence among survivors of early-stage melanoma, and to our knowledge, no related research has been conducted in the US.

The study aimed to improve understanding of lived experiences and fear of recurrence among survivors of stage 0-IIA localized cutaneous melanoma. The qualitative survey-based study included input from 51 melanoma patients with a mean age of 49.5 years. The population was 67% female and 98% of patients (n = 50) were white, while 1 individual identified as multiracial.

The interview results showed 4 main themes about survival experiences and 10 sub-themes. Four major themes among survivors’ responses were emotions surrounding follow-ups, intensity of melanoma surveillance, lifestyle changes related to sun exposure, and thoughts about life and death.

In terms of emotions surrounding follow-up appointments, respondents reported feeling anxiety before appointments, anxiety around undergoing skin exams due to fear of recurrence being identified, and feeling relief after normal findings on skin examinations.

Intensity of melanoma surveillance was another key issue, with patients reporting a range of emotions regarding biopsy frequency. Some were anxious about the additional biopsies, some reported feelings of stoicism and acceptance, and others were reportedly grateful for the additional biopsies.

In fact, some participants desired more biopsy procedures than their treating dermatologist believed necessary, the authors wrote. Although these participants understood that further biopsy procedures may not be helpful or may cause permanent scarring, they believed that the potential benefits outweighed the potential risks.

Another subtheme related to the intensity of melanoma surveillance was concern about the melanoma risk of family members, especially children and siblings. Several participants mentioned that they needed to seek genetic testing for themselves and family members after their diagnosis, and one participant emphasized the importance of advising family members to see a dermatologist for screening.

An increase in sun protection practices, fear of the sun, and decreased enjoyment of outdoor activities were sub-themes surrounding lifestyle changes. Most respondents reportedly changed their sun protection practices after a localized melanoma diagnosis, such as increased use of sunscreen or wearing protective clothing, to prevent subsequent melanoma.

In general, participants viewed behavioral changes from sun exposure as a balance between having an acceptable quality of life and reducing the risk of melanoma through behavioral changes, the authors wrote. Regarding outdoor activities, some participants reported psychological consequences such as avoiding outdoor activities they had previously enjoyed.

Thoughts about life and death were another main theme, with a subtheme being increased thoughts and guilt about mortality. Some participants reported thinking about their own mortality almost daily, especially when looking at their moles. A total of 38 patients (75%) met the threshold for having a clinical fear of recurrence, or a score of at least 13 points on the Cancer Recurrence Inventory Brief Survey.

For some, the melanoma diagnosis altered their outlook on life and future plans, and these participants said they changed their overall health habits or renewed their commitments to achieving goals.

The study was limited by its use of convenience sampling and the inclusion of mostly white, wealthier-than-average, and well-educated patients treated in an academic medical practice, the authors noted. Responses about follow-up care and sun exposure could also have been affected by recall bias or social desirability bias, they added. A larger and more diverse study population is needed for future research, they noted.

The results of this qualitative, survey-based study suggest that despite having an excellent prognosis, patients with localized cutaneous melanoma, even those with stage 0, have high rates of fear of cancer recurrence and anxiety which produces restrictive behaviors, both of which affect negatively. psychological well-being, the authors concluded. These findings underscore the importance of addressing the psychological well-being of patients with early melanoma and possibly implementing supportive interventions.

References

1. Mahama AN, Haller CN, Labrada J, et al. Lived experiences and fear of cancer recurrence among survivors of localized cutaneous melanoma.JAMA Dermatol. Published online February 14, 2024. doi:10.1001/jamadermatol.2023.6158

2. Melanoma: statistics. Cancer.net. March 2023. Accessed April 29, 2024. https://www.cancer.net/cancer-types/melanoma/statistics