The Fear of Cancer Recurrence
Cancer is the name given to a group of diseases that are caused by abnormal cell growth. Cancer is prolific, with roughly 18 million new cases around the world each year, leading to 8.8 million deaths. In the UK, 1 in 2 people will get cancer in their lifetime, and half of that number will die from the disease in under 10 years.
While these are sobering statistics, they also mean that 50% of all people who develop cancer will survive. In fact, as research into cancer continues, people’s chances of survival are getting better and better; in the UK, cancer survival rates have doubled in the last 40 years alone. What this means, though, is that many more people are now living as cancer survivors. These people are aware of the painful symptoms that cancer can cause, as well as the lengthy treatment process it involves.
Many cancer survivors adjust well to life after cancer, but many also experience psychological difficulties. They may experience mood disorders, post-traumatic stress disorder, anxiety, and depression and also fears related to the possible return of cancer after treatment. These symptoms are sometimes referred to as “fear of cancer recurrence.” In the medical literature, this is sometimes abbreviated to FCR (“fear of cancer recurrence”) or FOR (“fear of recurrence”).
In this post, we will outline some of the statistics regarding FOR and consider some of its major symptoms. We will then consider some of the psychiatric interventions that can help patients to deal with it.
How common is cancer recurrence?
It is well documented that cancer can return, sometimes many years after the original treatment.
For this reason, doctors may be reluctant to use the term “cured” when referring to cancer patients, even if their symptoms have entirely disappeared. Even when the signs of cancer have gone away, and no cancer cells can be detected through tests, doctors typically refer to the cancer as being “in remission,” reflecting the fact that there is still a chance that the cancer may come back.
In reality, cancer recurrence rates vary significantly depending on the type of cancer that a patient suffers from. For example, studies have shown that the rate of recurrence of ovarian cancer can be as high as 85%, whereas certain forms of breast cancer have a recurrence rate of between 5% and 9%.
These varying rates of recurrence, coupled with the very difficult treatment processes associated with cancer, mean that many people who are in remission still may fear their cancer will return. This fear can result in a wide range of symptoms.
The symptoms of FOR
As mentioned above, while many cancer survivors are able to adjust well after their treatment, some have ongoing psychological difficulties. Following the long, drawn-out, and often intensive treatment process, many people report feeling alone and abandoned when they are forced to adapt to life after cancer on their own. These people can become very sensitive about their health and hyper-vigilant of physical sensations. They can become very anxious when having to undergo tests for recurrence. These anxieties can cause them to develop FOR.
As with many psychological responses, FOR exists on a sliding scale of severity. Often, cancer survivors will exhibit symptoms of anxiety that are subclinical; that is, they do not meet the clinical criteria for an anxiety disorder or depression. Moreover, medical professionals will sometimes try to avoid diagnosing cancer survivors with psychological disorders because of the stigma attached to mental health terms. Rather, they will refer to patients’ symptoms under the broad term, “distress.”
Typically, for a person to be diagnosed with a psychological disorder, they must exhibit symptoms that last for an extended period and significantly impair functioning. Cancer survivors who experience long-lasting psychological distress may develop specific disorders such as post-traumatic stress disorder (PTSD), anxiety disorder, or depression.
Post-traumatic stress disorder
PTSD is a disorder that typically results from a traumatic experience or injury. As outlined in our previous post, it can also result from invasive or distressing medical procedures that are used to treat life-threatening diseases. As researchers have pointed out, the diagnosis and treatment of cancer can be very traumatic for patients. Cancer has the power to completely alter a person’s life, drastically changing their prospects for the future and their sense of identity.
PTSD causes patients to re-experience the traumatic event, often as flashbacks or nightmares, and studies have shown that ongoing cancer-related procedures can trigger these reactions in cancer survivors. Moreover, PTSD can also cause patients to avoid reminders of the traumatic experience. In cancer survivors, follow-up scans, oncology visits, and even the deaths of public figures who die from cancer can cause fear or avoidance behaviours, thereby suggesting that cancer can lead to PTSD.
Anxiety disorders
PTSD is a specific kind of anxiety disorder, and it is the one that has been most widely studied in cancer survivors. However, several studies have also found that cancer survivors are likely to suffer from other kinds of anxiety disorders. For example, one study found that cancer survivors were 1.5 times more likely to exhibit symptoms of severe psychological distress, and another study found that they were more likely to make use of ongoing psychological services, often for help with anxiety or a sleep disorder.
As with PTSD, all anxiety disorders exist on a continuum. While many cancer survivors experience worries or fears, some experience generalized anxiety disorder (GAD), which is a long-term condition that significantly impairs people’s functioning, causing them to feel excessively worried and suffer from sleep deprivation, heart palpitations, and dizziness. As mentioned above, in cancer survivors, these symptoms may not always reach the threshold of a clinical diagnosis, but studies have shown that cancer survivors are significantly more likely than the general population to display ongoing symptoms of anxiety. A review from 2017, for example, showed that 40% of cancer survivors experienced moderate to high levels of anxiety.
Depression
Depression is a long-term feeling of sadness or hopelessness. It can cause people to feel persistently low and apathetic, and many people who experience depression also experience symptoms related to anxiety. In cancer survivors, the symptoms of depression and anxiety often occur together, and one study found that 9% of cancer survivors experienced anxiety and depression at intervals of six months and twelve months after treatment.
Furthermore, both depression and anxiety can be particularly prevalent in patients who experience ongoing physical symptoms as a result of their cancer treatment, even if their cancer is “cured” or “in remission.” For example, oral cancer survivors who have ongoing dental health problems or difficulty smelling often report symptoms of depression and anxiety. Relatedly, cancer survivors who experience reduced sexual functioning are also more likely to exhibit depressive symptoms.
All of these disorders are, in varying ways, forms of FOR. They are all caused or exacerbated by the difficulty of adapting to life after cancer. As with all psychosocial disorders, however, certain groups of people seem to be more at risk of these symptoms than others. We cover the risk factors for FOR below.
What makes people at risk of developing FOR?
There are various factors that seem to make some people more likely than others to develop FOR. Studies have shown that FOR is more common in women than men, for example, and other risk factors include being younger than 60 years of age, being between 5 and 7 years after the diagnosis, suffering from social isolation, having fewer than 10 years of education, and being a survivor who has previously experienced a recurrence.
Surprisingly, while general social isolation (in which people are greatly removed from friends and family members) puts people at risk of FOR, researchers have also found that people living alone are less likely to develop FOR than people living with someone. While this may seem counterintuitive, it may be that someone living alone is less able to develop independent coping mechanisms. As such, they may show lower levels of self-efficacy and find it harder to navigate their relationships with other people as a cancer survivor. Moreover, people who live with cancer survivors are often more likely to develop a fear of cancer themselves, thereby creating an anxious environment for the survivor.
It should also be noted that, more recently, the effects of the COVID-19 pandemic have placed an additional burden on cancer patients and survivors. Firstly, screenings for cancer and its recurrence have been delayed in recent years due to the overwhelming pressures placed upon the healthcare system by the pandemic. This means that people have had to wait longer for diagnoses, leading to increased anxiety. Secondly, the treatments used for cancer patients, such as radiotherapy and chemotherapy, often affect the immune system, making them more likely to be severely affected by SARS-CoV-2. As such, cancer survivors may fear the combined effects of both COVID-19 and cancer, thereby also increasing their anxiety.
Psychiatric interventions
As with the spectrum of all psychological disorders, interventions for treating cancer-related anxiety, post-traumatic stress disorder, depression, and FOR will vary on a case-by-case basis. Broadly speaking, the two main approaches to treating FOR are as follows:
Cognitive Behavioural Therapy
Studies have demonstrated that cognitive behavioural therapy (CBT) can be affective at increasing a patient’s perceived control over their FOR. By helping patients to modify dysfunctional behaviour, CBT can help them adjust to life after cancer, making them less fearful that their cancer will return.
Medical Treatments
As with other cases of anxiety, depression, and post-traumatic stress disorder, drugs may sometimes be used in combination with counseling to help cancer survivors deal with their ongoing mental health problems. Anti-anxiety medicines and antidepressants have both been shown to help patients deal with FOR.
Summary
FOR is common among cancer survivors, with almost 80% of patients reporting some level of FOR concern. Given the wide prevalence of cancer, the likelihood of it reappearing, and the significant impact it has on people’s quality of life, it is not surprising that so many cancer survivors feel this way. FOR can result in anxiety, depression, and post-traumatic stress disorder.
In many cases, however, FOR is relatively mild, meaning that cancer survivors experience subclinical levels of these medical disorders. Nevertheless, this still means that it can be difficult for them to adjust to life after cancer. Adjustment seems to be more difficult for women, people under 60, people who are within 5 to 7 years of their diagnosis, and people with fewer years of education. Surprisingly, adjustment is also more difficult for people who live with others than it is for people who live by themselves. While each case is different, successful interventions for cancer patients with FOR include CBT, anti-anxiety medications, and antidepressants.
In many ways, the increasing prevalence of FOR and other psychological problems related to cancer is a symptom of the huge strides that have been made in cancer research and care. As methods of treatment improve, more and more people are surviving cancer. As a result, however, more survivors are having to learn to live with the ongoing fear that their cancer might return, making it more important than ever that we continue to monitor the long-term psychological effects of cancer and integrate psychological treatments as part of cancer care.
This post is provided for general information purposes and is not intended to cover every aspect of the topics with which it deals. It does not constitute medical, legal, or professional advice, nor is it necessarily an endorsement of the views of Professor Elliott, the U.K. Centre for Medico-Legal Studies, its employees, or its affiliates. Though we aim to ensure that all information is accurate at the time of posting, we make no representations, warranties or guarantees, whether express or implied, that the content in the post is complete or up to date.