Fear of recurrence in survivorship: ‘Don’t shy away from it — learn from it’
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When David Spiegel, MD, led a session on fear of recurrence at the Cancer Center Survivorship Research Forum, he mentioned a Charlie Brown cartoon panel he’d recently seen.
The cartoon showed Charlie Brown and Snoopy sitting together on a dock, staring at the water.
“We only live once, Snoopy,’” Charlie Brown says to his beloved companion.
“Wrong,” Snoopy replies. “We only die once. We live every day.”
The message is powerful, according to Spiegel, Willson professor and associate chair of psychiatry and behavioral sciences, director of the Center on Stress and Health, and medical director of Center of Integrative Medicine at Stanford University School of Medicine.
“It’s a reminder to make the most of the life you have. Don’t shy away from it — learn from it. You can make your life better as a result.”
Spiegel’s presentation addressed the importance of facing this fear and offered his recommendations for keeping it in check.
Making an action plan
Spiegel noted that for cancer survivors, the time before a patient is due to receive test or scan results is often fraught with fear of recurrence. Although the impulse to avoid this unpleasant feeling may be strong, Spiegel encouraged survivors to look at the fear head on and formulate an action plan.
“Many of my patients have said the time before they get a report, especially one that might show evidence of metastasis, is the worst time in their lives,” Spiegel said, “So I advise them to think through what will happen either way, and make a plan.”
For example, Spiegel said if the test or scan comes back benign, a survivor might plan to go out for a celebration with their partner. If not, Spiegel recommends thinking through the steps they will take, such as meeting with their oncologist, finding any relevant specialists, discussing and formulating a treatment plan, and talking about their prognosis.
“The point is, don’t just be a passive recipient of what’s happening,” he said, “Picture a plan for how you’re going to handle it — what you’re going to do to make your odds as strong as possible. Think about how you’re going to address some of the decisions you might end up facing. It’s helpful to be active in addressing fear of recurrence.”
Value of social support
An essential means of empowerment while facing fear of recurrence is to develop and rely on a social support system or network.
“Social isolation is another way of making fear of recurrence worse,” Spiegel said. “People don’t want to talk about it — and some people don’t even want to hear about it — [because] it scares them. However, we are social creatures, and being disconnected from others can make a person feel like they’re already a little bit dead.”
Spiegel emphasized the importance of being able to share experiences with others who have been through similar situations and support one another through a common struggle.
“If you do things that keep you connected with people, you will feel better and you’ll deal with it better,” Spiegel said. “It can give you perspective and be reassuring. Through these social connections, survivors also can learn how to help others with the issues they’ve been through. You can come to feel like an expert in living — including living with dying.”
Support groups are a great way to meet and connect with fellow survivors who are familiar with fear of recurrence and the other psychosocial issues experienced during cancer survivorship, Spiegel said.
“I’m always struck at how tight the bonds are among people like women with metastatic breast cancer. They instantly recognize their own problems in other people and they can see them from a different perspective,” he said. “You can go to a meeting and take comfort in learning from other women who are handling things well. They’re scared, too, but they’re living with it. Their lives aren’t falling apart.”
Spiegel discussed the “helper therapy principle,” which holds that by learning how to handle problems and helping others, individuals can improve their own self-esteem and help themselves. This is another valuable aspect of community and social interaction, he said.
“We do this in medicine all the time. We feel more confident in our own skills as a physician if we’re teaching other physicians how to do something,” Spiegel said. “If this is true for health care professionals, it’s true for our patients, too. As they learn about coping with illness, they can share this knowledge and help others.”
Facing emotions
Spiegel said it saddens him when patients tell him they held back from crying or expressing emotions in an effort to be “strong.”
“That’s not strength,” Spiegel told Healio. “Being afraid of your own feelings is weakness. Suppressing your feelings isolates you from other people and isolates you from yourself. You don’t allow yourself to even understand how you’re feeling.”
Physicians also can benefit from being more comfortable with emotions — both their patients’ and their own.
“I’ve had surgeons watch me talk to a patient, and the patient starts crying, and these [physicians] react as if we’re letting a patient bleed,” he said. “It’s not bleeding, it’s just crying. It won’t do them harm.
“One of my patients told me how grateful she was to a surgeon who was evaluating her a year after her primary diagnosis had been missed,” Spiegel added. “He looked her in the eyes and said, ‘You must have felt terrible.’ He was validating her understandable feelings, not denying or avoiding them.”
Spiegel said he encourages patients to express emotions rather than suppress them.
“We have evidence — in the form of a randomized clinical trial of women with metastatic breast cancer — that the more expressive these people are about their emotions, the more confident they feel about how they are dealing with those feelings,” Spiegel said. “You’d think it would be the opposite, but it isn’t. People who are more expressive have more normal cortisol responses to stress, and they feel better — not worse — about how they are handling their emotions.”
Cancer survivors should feel comfortable expressing their feelings and “venting” to trusted family members or friends, Spiegel said. Acknowledging the possibility of death often helps mitigate this fear, he added.
“In oncology we often dance around that elephant in the room,” Spiegel said. “We make death a subject that must be avoided, but I think it’s better to be direct about it. It causes people to reorder their lives and understand what’s important to them.”
Some oncologists may not be comfortable discussing fear of recurrence and death with patients, but Spiegel said it is helpful to be receptive to these conversations and offer support to cancer survivors.
“Some [physicians] back away from those conversations and will just send patients to palliative care,” he said. “I am all for palliative care, but you want it to be clear to the patient that you — as their doctor — understand how afraid they are, and that you will be there to help them deal with it.”
Many academic medical centers have departments dedicated to psychological and social support for cancer survivors. Stanford’s Center for Integrative Medicine offers services such as hypnosis, mindfulness training and acupuncture,
“Oncologists can’t do it all. They have specialized, important work to do,” he said. “If they’re open to helping patients access resources that will make them more comfortable and less afraid, that helps to share the burden of caring for the patient. It also helps the patient.”
For more information:
David Spiegel, MD, can be reached at Department of Psychiatry & Behavioral Sciences, Stanford University, 401 Quarry Road, Office 2325, Stanford, CA 94305; email: dspiegel@stanford.edu.
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Spiegel DA. Fear of recurrence, living with cancer & psychological wellbeing. Presented at: Cancer Center Survivorship Research Forum; Sept. 11-12, 2023; Stanford, California.
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