Bundle of nerves: insight into fear of cancer recurrence
From the moment of diagnosis and up to treatment, cancer takes a heavy mental toll and incurs a lot of emotional distress on patients and their families. While it is not surprising that problems affecting mental wellbeing are common after diagnosis, it is less well-known that some cancer survivors persist with problems of depression and anxiety even after treatment. People often think the “battle” is over after treatment is done, but for many survivors, it is actually the beginning of another emotional struggle, namely the fear of recurrence. The fear of recurrence is commonly described as the fear or worry that cancer will return and it is considered a specific form of anxiety distinct from others (1, 2). In general, the psychological impact of cancer is under appreciated to the general public but it is a very real problem. This blog will describe some aspects of fear of recurrence.
It should be acknowledged that fear of recurrence is a normal reaction, and consequently researchers have tried to differentiate “normal” fear of recurrence from high levels of fear of recurrence – as in when the fear of recurrence becomes a major problem for the individual, so much that it overwhelms them. Research on fear of recurrence has suggested that between 22% to 87% of cancer survivors will experience moderate to high levels, such a wide range is due to the fact there is no consensus on its definition so each study typically defines it a bit differently (3). Cancer survivors who experience high levels of fear of recurrence tend to have poorer quality of life, are more likely to be depressed and have more difficulty in their daily functioning (4). How this fear of recurrence plays out can vary. Some individuals choose to cope with this fear by avoiding follow-up visits with cancer doctors, while others go the opposite direction and end up with requesting unnecessary testing and doctor’s visits (5). Neither of these behaviours is desirable for patients.
Past research has found that cancer survivors with high levels of fear of recurrence tend to be either newly diagnosed, younger, had more side-effects due to treatment, or had anxiety problems even before their cancer diagnosis.3 However, traditional indicators related to cancer severity such as tumor size and stage have not been found to be associated with fear of recurrence. On the other hand, factors like having received adjuvant treatment, long courses of treatment, or novel personalized treatments were associated with more chances of experiencing fear of recurrence (6, 7). One possible explanation for these findings is that traditional indicators of prognosis are as not easily understood by patients while things like longer duration of treatment and use of novel treatments can be interpreted by patients as having more serious and aggressive disease even if it may not be the case. Additionally, survivors who are less satisfied with their medical care after treatment and who do not understand the information given to them from health professionals are more likely have higher levels of fear of recurrence (8, 9).
The previously mentioned findings are interesting because they suggest that effective communication could alleviate fear of recurrence. As such, all health professionals involved in a patient’s care may benefit from specialized training or resources to clearly communicate information given to the patient about their prognosis, the signs of recurrence and behaviours to reduce risk of recurrence. One last key is to normalize fear of recurrence, in other words, avoid pressuring patients into ignoring their concerns and telling them platitudes such “just be positive” but rather acknowledge their fear and offering help to deal with this. Referral to a psycho-oncologist, who are psychologists with expertise in dealing with cancer survivors, may be appropriate for some patients.
Many researchers are currently studying different interventions to see which can actually help in dealing with fear of recurrence. Interventions being tested range from face-to-face discussions to online discussions to group meetings with different types of psychotherapeutic approaches. Although more research addressing fear of recurrence has been undertaken in recent years, there is still much to learn (10). Fortunately, more and more resources are available to cancer survivors to help them deal with their cancer experience, which includes fear of recurrence. For example, the Cancer Survivorship Program at the McGill University Health Centre offer help by educating patients on what to expect after treatment and filling in on information that may be missing from patients just talking to their doctors (11).
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