Cristiane Decat Bergerot, PhD, is a psychologist and head of the Department of Supportive Care at Unity – Grupo Oncoclínicas in Brazil. Elected to serve as a director at the International Psycho-Oncology Society (2021–2023), Dr. Bergerot has been working with people with cancer for almost 20 years as a clinician and researcher. She is committed to bettering the lives of people with cancer through obtaining a detailed understanding of their quality of life and addressing their quality of life through novel, targeted interventions. Dr. Bergerot is an advisory panelist on the 2022 Cancer.Net Editorial Board. You can follow Dr. Bergerot on Twitter.
The worry or anxiety a person with cancer or survivor may have about their cancer coming back or getting worse is often called “fear of recurrence.” This is a normal reaction to having cancer, and most people who have had cancer will experience some degree of it at some point.
It is common for adolescent and young adult (AYA) cancer survivors, in particular, to experience the fear of recurrence. In fact, 7 in 10 AYA cancer survivors report some degree of fear of recurrence, which is a higher proportion than in middle-aged or older adult cancer survivors. While there is no clear explanation for this difference, doctors usually attribute it to the unique stress that a cancer diagnosis and treatment can cause for younger people. During adolescence and young adulthood, cancer can disrupt major life transitions, social roles, and life choices, including those around education, relationships, and work. However, it is important to remember that there are many ways to cope with the fear of recurrence, and your health care team is there to help.
How can the fear of recurrence affect AYA cancer survivors?
While we do not know the most common risk factors for fear of recurrence among AYA survivors, female patients tend to consistently report higher levels of fear of recurrence. The intensity of the treatment a person received, especially for those who received radiation therapy or chemotherapy, has also been noted as a factor that may increase the risk of fear of recurrence. In addition, emotional distress, including anxiety and depression, may increase the fear of recurrence, as can physical symptoms and attention, thinking, and memory problems.
The fear of recurrence tends to fluctuate over time. For many survivors, it might be stable over the first 6 months after diagnosis, but it can then either worsen or improve over time.
Sometimes, AYA cancer survivors experience a higher or even severe level of fear of recurrence that starts to impact their quality of life. For example, there are some survivors who frequently check their bodies for signs of cancer, and others who interpret certain bodily sensations as a return or progression of their cancer. Some survivors experience challenges in managing worries about their cancer coming back. The fear of recurrence may stop them from working, disrupt their family and social relationships, or stop them from enjoying life.
If you find that thoughts around fear of recurrence have been persistent or they are interfering with your daily life, it is important to talk with your health care team. Your health care team is there to support you and find ways to help you cope.
“I've now been a cancer survivor for more than 20 years and have realized that fear of recurrence doesn't ever fully go away, especially as the stakes get higher and I have more to lose with each passing year. But what I have also learned is that, with time, fear of recurrence becomes less constant, and I have learned to live with it rather than spend so much energy trying to squash it. It's important to validate those feelings so they don't come back to bite us when we least expect it. Knowing there's a possibility of future cancer—as, really, there is for everyone—drives me to appreciate and enjoy the time that I do have.” – Samantha Watson, 2-time young adult cancer survivor, founder of The Samfund, and patient advocate
Coping with the fear of recurrence
There are several strategies that can help you manage the fear of recurrence. Managing the fear of recurrence is not about overreacting or ignoring symptoms. Rather, it is about finding a balance between appropriate monitoring of your disease and not overly focusing on it.
Communicating with your doctor about how you can watch for the cancer coming back is an important step in managing the fear of recurrence. For example, it is important to clarify what symptom monitoring is recommended by your health care provider, the frequency by which you should check for symptoms, what symptoms you are looking out for, and what you should do if you notice any of these symptoms.
There are also many strategies available that can help AYA survivors manage the mental, emotional, and social impacts of fear of recurrence, including cognitive behavioral therapy, problem-solving interventions, support groups, internet-based interventions, and mindfulness and attention training.
Remember that addressing the fear of recurrence is important to living well beyond cancer and ensuring your quality of life is not affected. Talk with your health care team about ways you can cope with the fear of recurrence.
The author has no relationships relevant to this content to disclose.