Cancer is a chronic condition that can reoccur after effective treatment. Fear of cancer recurrence (FCR) is common and can negatively affect a person’s daily life.
Although fear of the unknown is a natural experience, people with FCR experience persistent worry about cancer returning. This worry can be intense and may require treatment. Managing the symptoms can help improve a person’s quality of life.
This article includes the personal story of Andrea Berkowitz, an individual with experience of FCR.
A note about sex and gender
Sex and gender exist on spectrums. This article will use the terms “male,” “female,” or both to refer to sex assigned at birth. Click here to learn more.
Cancer treatment is typically life changing and there is usually a
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FCR can also affect people who have yet to undergo or are still undergoing treatment for cancer. The intensity of FCR can vary greatly.
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Cancer resources
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Several factors
A 2022 study that included data from over 13,000 people with cancer found FCR was more common in people experiencing:
- depression and anxiety
- avoidance
- chemotherapy
- psychological distress and intrusive thoughts
- tiredness
- rumination
- neuroticism
They also found some factors were protective against FCR, including being older, having a good social support network, and having higher general well-being.
Another 2022 review highlighted additional potential risk factors for FCR, including:
- being female
- the type and length of cancer treatment
- having physical symptoms
- having lung cancer and melanoma
- the presence of other conditions
- higher illness severity
- having lower levels of education
- having a low level of health literacy, including an incomplete understanding of the particular diagnosis
The most socioeconomically disadvantaged groups in society are most likely to have limited health literacy. Increasing the accessibility of health information can help address these gaps.
Andrea’s story: How FCR affected me
My fear of recurrence took over my mind and caused me to engage in behaviors that reinforced my anxiety.
For example, I would spend hours online and gravitate toward articles or books that claimed a specific extreme diet or lifestyle would significantly reduce my risk of recurrence.
I imposed specific rules on myself, like only eating a vegan diet, and would feel guilty and more fearful if I broke those rules. I now call it “food prison” and realize that it was a form of disordered eating.
I also spent hours in support groups and on websites looking for positive stories, but was often met with stories of recurrence and or death. This added to my anxiety and stress about a cancer recurrence.
It is important to highlight that fear of the unknown is natural and may not always require treatment.
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- recovering from side effects
- uncertainty about moving forward
- tiredness
However, people who experience FCR that significantly affects daily living may require treatment.
FCR is a complex problem that can require different types of treatments, including psychological, medical, and social interventions. Some examples of treatments include:
- Cognitive behavioral therapy (CBT): CBT is a treatment that mental health professionals can adapt to help people with FCR identify and challenge unhelpful thoughts and beliefs related to cancer recurrence. It may also help a person develop coping mechanisms for anxiety.
- Mindfulness-based stress reduction: Mindfulness-based stress reduction programs teach relaxation techniques that may help people with FCR stay present and manage their anxiety. Practitioners offer these programs in person or online, including through mobile apps.
- Support groups: Participating in support groups may provide a sense of community and understanding about cancer and the recovery process.
- Medications: In some cases, healthcare professionals may prescribe medications to treat depression or anxiety symptoms in people with FCR. Anxiety treatments can include medications, such as serotonin reuptake inhibitors (SSRIs).
Andrea’s story: How I manage my FCR
I finally realized that I was not living my life and I was depressed and worried all the time. I slowly started re-introducing “forbidden” foods back into my diet, in moderation. I found creative and educational ways to distract myself from the worries of cancer.
I later enrolled in an integrative health coaching program and spent a year learning about proper nutrition and lifestyle for overall wellness. When my brain started to “go there,” I would remind myself that I have one life to live and I don’t want to ever look back and say, “I am so glad I spent all of that time worrying about the what-ifs.” I did not want those anxious thoughts to live rent-free in my head anymore.
I empowered myself with factual information, not “Dr. Google.” I stopped worrying and started living. I embraced my spiritual side and realized that having a meaningful purpose in life brought me more joy and contentment than ever before. I love to help and inspire others. I don’t sweat the small stuff anymore. If the dishes don’t get done, they will still be there tomorrow!
I wake up every day feeling blessed to be alive and I choose to live that life to the fullest.
While professional treatment is important for severe FCR, several self-help strategies may help with milder symptoms.
The MD Anderson Cancer Center highlights the importance of identifying and recognizing triggers. These will vary from person to person, but they might include upcoming scans or hearing others talk about cancer. Recognizing these triggers can help people avoid or cope with them.
Coping strategies to handle the worry will also depend on the person. People can start by trying to do things they enjoy and find relaxing, such as going for a walk or spending time with loved ones, as often as possible.
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- speaking with others, including the person’s healthcare team, about fears
- knowing that it is typical for aches and pains to trigger fear of a recurrence
- taking notes about symptoms that occur
- asking for a follow-up care plan from doctors
- being aware of support services and counseling
- keeping busy while waiting for test results, if possible
General management strategies for anxiety and stress might also help. The Anxiety & Depression Association of America suggests doing the following:
- limiting alcohol and caffeine intake
- taking deep breaths and counting to 10 when anxiety spikes
- trying to accept the limitations of what a person can control
- regularly taking time to do relaxing activities, such as meditation or listening to music, even if only briefly
It also recommends taking the steps below, if possible:
- exercising daily
- eating healthy, balanced meals
- getting enough sleep
- using humor, as laughter may improve mood and general health
- recognizing unhelpful thoughts when they occur and trying to challenge or replace them with more helpful ones
Research shows that some factors reduce the risk of experiencing FCR, including having a strong social support network. Where possible, spending time with loved ones and attending support groups might help with this.
Mental health resources
Visit our dedicated hub for more research-backed information and resources on mental health and well-being.
Fear of cancer recurrence (FCR) is natural and common among people who have had cancer. A person might experience occasional worry or more severe anxiety about the cancer returning. Some people are more likely to experience FCR, such as females and those experiencing multiple conditions.
A person may require treatment to manage FCR symptoms. Treatments can include CBT, mindfulness-based stress reduction, or support groups. People may also be able to try various practical coping strategies, such as building a strong support network.
Individuals can speak with a doctor about FCR or other concerns after cancer treatment.