Melanoma Survivors Should ‘Talk Through’ Fear of Recurrence

Remaining “vigilant” is important for survivors of localized cutaneous melanoma, but if they experience fear of recurrence, it’s best to “talk through” their feelings, two experts told CURE®.

A combination of lived experiences and the fear of recurrence can affect psychological wellbeing in survivors of localized cutaneous melanoma, according to a recent study from JAMA Dermatology.

“Melanoma is actually not the most common form of skin cancer, but it has the highest risk of spreading to other sites in the body,” Dr. Michael Davies, professor and chairman of the department of melanoma medical oncology at The University of Texas MD Anderson Cancer Center, explained during an interview with CURE®.

“For patients who have a history of cutaneous melanoma, there’s often a fear of the melanoma coming back,” he said. “While that could be coming back in the same site that it was initially, I think the majority of the fear is that it’s going to actually spread to other sites in the body.”

Fear of Recurrence in Melanoma Survivors

Davies emphasized that remaining vigilant is important for melanoma survivors to remember. In other cancers, the risk of recurrence exists after three to five years, he said. However, melanoma is different in that the risk “really never goes away completely.”

“We can see patients who can go five, 10, even 20 years of the disease being disease-free, and then having the melanoma recur,” Davies said. “One of the important things is that the treatments for melanoma have improved dramatically over the last decade. In the past when melanoma had spread, it was a truly lethal disease with very few treatment options.

“Over the last 10 years, the management of melanoma has really been revolutionized, such that melanoma is curable no matter where it comes back, but it’s not curable in everyone. Therefore, it’s why we still recommend regular surveillance by patients working with their health care providers. If melanoma does recur, we can catch it as early as possible, when the chance of cure is highest.”

By “remaining vigilant” regarding active surveillance, Davies stated that “there’s no reason to give up hope,” even if a survivor’s melanoma returns.

READ MORE: Managing Chemo-Related Hand-Foot Syndrome

Although some survivors may fear a recurrence elsewhere in the body, others may be afraid of developing a secondary primary melanoma, said Dr. Kelly Nelson.

Nelson is a professor, dermatologist and associate medical director in the department of dermatology at The University of Texas MD Anderson Cancer Center.

“These patients, in my experience, tend to be younger and they had to advocate to have their melanoma biopsied,” she explained to CURE®. “They have a perception that they’re the only ones that can find their melanoma. Therefore, they view every mole on their body as a ticking time bomb.”

Addressing Fear and Worry of Recurrence

There’s an overlap between medical care and mental health, said Nelson, which is important regarding fear of recurrence.

“I’ve developed this strategy of just asking permission if I can share something that I’ve observed,” Nelson explained. “I say, ‘’I feel like you’re very worried about yourself.’ And I narrate the experience I have heard from other patients with similar worries. Then, I ask if we can develop a plan to take care of them. For most patients, that’s able to help them turn the corner and sort of regain a sense of control.”

Nelson helps patients ease their minds, by having them receive total body photography and have them visit her more every six weeks. She found that this reassurance and taking full measures each step of the way helps “balance their moods.”

“I ask them to let me be responsible for their skin surveillance [and] to take that burden from their shoulders and put it on mine because that’s my job,” she said. “I think that approach has been enormously helpful.”

For survivors who experience fear of recurrence, Nelson assured them that “it’s OK and normal to be worried.”

“They shouldn’t feel that they are weak, or that they are somehow less than if they worry about themselves,” she said. “It’s always better to share [their] feelings and talk through them with someone they trust, whether that’s their dermatologist, oncologist, members of their church family, or a licensed therapist or psychologist. Having the ability to share those feelings and worries with someone who’s not an immediate part of their family or care team can be really helpful.”

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.