The Fear of Cancer Recurrence is Real, Natural and Nearly Universal

Throughout 15 years as a medical oncologist primarily caring for patients with breast cancer, I have found that fear of recurrence — the fear that cancer will return or advance — is nearly universal among patients with cancer undergoing curative treatment.

My conversations with patients experiencing this fear and associated feelings are among the most challenging and complex.

Much of the survivorship literature has described this fear along a spectrum, ranging from mild to severe symptoms involving feelings of worry, distress or concern that a cancer may recur or persist despite curative treatment. At the mild end, patients may experience occasional thoughts about cancer. But with moderate to severe symptoms, patients may suffer from the inability to control more frequent thoughts of recurrence, causing intrusive distress to daily life and feelings of hopelessness and despair.

Studies have revealed that close to 70% of patients with breast cancer are vulnerable to this type of fear, driven by a range of factors including the predicted risk of recurrence, young age and psychosocial adjustment following treatment completion.

Women initially diagnosed with breast cancer before age 35 may carry significant fear about life expectancy as well as perceived risk of developing recurrent breast cancer throughout their lifetime. Furthermore, a patient’s underlying stress, anxiety and depression at diagnosis can lead to higher levels of fear.

Meet Sally

To bring this younger patient population to life, let me share a story about my patient, Sally*, a 34-year-old mother of three young children, a practicing attorney and an avid athlete who was diagnosed with locally advanced triple-negative breast cancer. During our first meeting, she described feelings of stress related to caring for her young children and older mother through treatment, coupled with uncertainty about family finances, completing treatment, achieving health and ultimately survival.

She also had trouble processing certain information we discussed due to losing a friend to cancer.

To help Sally manage her fear, we openly and thoroughly discussed her treatment, possible side effects and chances of recurrence. We also screened her level of distress through a validated questionnaire. Our care team provided close psychological monitoring via face-to-face interactions and telephone discussions to help alleviate anxiety and distress and to provide coping strategies aimed at maintaining lower levels of stress and addressing fears as they occur.

Upon completing treatment, Sally reported her fear was low. At her first survivorship visit, she expressed distress over development of chemotherapy-induced neuropathy in her feet that required long-term physical therapy with strength and balance rehabilitation. She returned to work but needed acclimation to walking slower and shifting her weight properly when going downstairs to prevent falls.

I reminded Sally that her fear was normal and experienced by many survivors. In fact, upon completion of curative treatment, more than 95% of women with early-stage breast cancer will achieve remission and join the more than 3.9 million survivors (as of 2019) who begin their journey anticipating that life will settle back into normalcy.

Yet, for countless patients, side effects from cancer or its treatment create a new norm with significant challenges — challenges that require developing coping mechanisms to help them achieve greater balance and overcome physical, emotional and psychosocial challenges. Like Sally, numerous patients experience anxiety-inducing side effects driven by reduced quality of life, inability to assimilate back to daily routines and a perpetual fear of cancer recurrence.

A Focus on Empowerment

I believe in partnering with my patients throughout their cancer journeys. With Sally, that meant creating a lineup of empowering strategies and actions in her survivorship. It also meant listening to her questions and ideas.

During subsequent follow-ups, I emphasized addressing versus suppressing feelings of distress and anxiety by connecting with family, friends and her psychologist. We also identified possible fear- and anxiety-invoking triggers such as follow-up visits, imaging scans and the anniversary of her diagnosis.

Through her reading and research, Sally shared with me antioxidants and herbal medicines that may protect her from cancer recurrence. I recognized her diligence and further explained that although supplements such as minerals, vitamins and antioxidants are vital components to our diet, no long-term studies have shown consistent or long-term benefit with any particular supplement.

We discussed what a healthy lifestyle for people who have had breast cancer looks like:

• Be proactive and well-informed.
• Stay on top of cancer screening, which enables greater control in detecting early recurrence.
• Maintain a healthy, balanced diet, which includes dietary fiber and plant-based foods, and reduce processed meats and refined sugars to help lower cancer risk.
• Limit alcohol intake to one to two drinks daily.
• Engage in stress-reducing activities like hobbies and exercise (if possible, a minimum of 150 minutes of exercise per week may help reduce risk of recurrence, reinforced by multiple studies demonstrating beneficial results in breast cancer survivors).

With the support of our follow-ups, conversations and interventions, Sally has been coping well and maintaining a better balance in her quality of life and daily activities.

The fear of recurrence is real. It’s natural. There are ways to manage this fear, so it doesn’t become overwhelming or debilitating. Physicians like me and a network of resources are here to help.

*Name has been changed for anonymity.

This article was written and submitted by Dr. Ajaz M. Khan. Khan is a medical oncologist and chair of the department of medical oncology at Cancer Treatment Centers of America in Chicago.

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