Coping with the fear of cancer recurrence
Fear can often overwhelm a person. You need to keep things in perspective and build your resilience and positive thinking.
BY: Chen Yanni
Fear is a common emotion caused by a ‘perceived threat’ or an impending danger, regardless of whether the threat is real or imagine. Fear often feels like an envelope or shadow of darkness that surrounds us. A sense of suffocation, and a feeling of not knowing where to go and what to do often accompanies the fearful feeling.
Cancer recurrence is the return of cancer after a period when no cancer cells could be detected in the body. There are three types of recurrences. Local recurrence occurs close to or in the same place as the first tumour. Regional recurrence refers to cancer cells, which come back in the lymph nodes near the first tumour, while distant recurrence is also known as metastasis, where the cancer has spread to another organ within the body.
The fear is real
Fear of cancer recurrence is a normal and reasonable emotional response to the real threat of a life-threatening disease. According to statistics from the American Cancer Society, an estimated 70 percent of the population of patients who had cancer fears its recurrence. During the first few years in remission, this response is especially common. Different events such as follow-up visits with the doctor, anniversary events (such as the date of diagnosis and surgery), symptoms which presents itself to be very much like the ones first found when cancer was detected (such as a cough or lump detected) and the death of someone who had cancer serve as reminders or triggers that cancer had happened before.
The following group of patients may fear cancer recurrence more than others:
- Patients who are of a younger age – cancer is perceived as more unexpected and hence there is more anxiety.
- Patients who have younger children – parents are concerned about how their children would adapt to their diagnosis and how the child would cope without the parent.
- Concurrent family stressors – other family problems – a family member having illness or undergoing divorce or a major life change – could increase the level of fear as the mental energy would be drained as well as resources, which would otherwise be available to help them manage the threat of recurrence.
- Patients with cancer recurrence/progression – it is naturally more worrying to fear another recurrence after experiencing one before.
- Physical or somatic symptoms – patients who reported more fatigue may attribute unrelated symptoms to cancer recurrence. These symptoms may trigger beliefs about vulnerability, causing more cancer worry.
- Illness perception – the meaning which is made out of cancer and the perception of more severe consequences may result in greater perceived physical impairments.
- Coping style – patients with low self-esteem, and who cope by denial or avoidance are more fearful.
- Family members or caregivers may have more fear if they do not address their own fears and do not want to burden survivors. Hence, they may be less willing to work through or resolve their own fear of cancer returning.
Perceived vs real fear
Fear affects us emotionally and psychologically, bringing about feelings of worry, anxiety, sadness, anger and tension. All these feelings interfere with our daily life. How we feel often affects how our body responds as well. Anxiety can cause shallow breathing, muscle tension, headache, irritability, disrupted sleep and many others. As such, the immune system can suffer a blow.
Living with ongoing anxiety can be highly exhausting and all consuming. So it is important to differentiate between a perceived vs a real fear, and this can be done by asking the doctor to talk realistically about the chances. Do bear in mind that the risk is different for everyone and no matter what the statistics is, everyone is unique.
Some of the questions to ask the doctor:
- Is it possible that cancer will come back?
- How likely is it to come back?
- How likely will I know if it is back?
After getting the answers to these questions, there are also practical ways to keep the fear level in check.
What you can do:
- Keep your health insurance; keep copies of the treatments and tests.
- Know and keep track of the follow-up visits and tests schedule.
- Keep your follow-up visits and get the tests suggested by the doctor.
- Learn to live with uncertainty.
- Build resilience and think positively. These will be mentioned extensively in the following paragraphs.
Resilience is the ability to recover from misfortune or adapt easily to misfortune or change. There are ways to build resilience, as it is not a trait that people either have or do not have. It can be learned and developed in anyone.
Ways to build resilience:
- Make connections.
– Good relationships with close family members, friends or others are important.
– Accept help and support from those who care about you.
– To be able to assist others also benefits the helper.
- Avoid seeing crises as insurmountable problems.
– We cannot change the fact that highly stressful events happen, but we can change how we interpret and respond to these events.
– It is a matter of perspective and attitudinal change.
- Accept that change is part of living.
– Certain goals may no longer be attainable as a result of adverse situations.
– Accepting circumstances that cannot be changed can help you to focus on circumstances that you can alter.
- Develop some realistic goals.
– Do something regularly, even if it seems like a small accomplishment. This enables you to move towards your goals.
- Look for opportunities for self-discovery.
– People often learn something about themselves and may find that they have grown in some aspect as a result of their struggle with cancer.
– Meanings and self-discovery people make out of their illness could be a wake-up call to re-focus on life, heightened appreciation of life, connecting themselves back to God and having a greater sense of strength even when feeling vulnerable.
– Pay attention to your own needs and feelings.
– Engage in activities that you enjoy and find relaxing.
– Exercise regularly.
– Write about the deepest thoughts and feelings related to your cancer experience.
- Meditation and spiritual practices can help some people to build connections and restore hope.
Optimism is largely a learned trait. Positive thinking can be built in following ways.
- Accept your fears and hope for the best.
- Let yourself experience the strong emotions and also realise that you may need to avoid experiencing them at times, in order to continue functioning.
– We are not very good at not thinking of something. The more we try not to think of something, the more we end up thinking about it.
– Don’t stop worrying.
– Worry only at the right time, i.e when you are not doing something important.
- Do not compare. Compare downwards if you really need to compare.
- Do not just focus on the negatives but also focus on the positives or on what is possible.
- Find a purpose to live.
Facing the fear of recurrence requires stepping forward and taking actions to deal with the problems that arise while meeting the demands of daily living. Stepping back to rest and re-energise yourself can help you keep things in perspective instead of taking your fear out of proportion. Visualising what you want instead of what you fear will enable you to maintain an optimistic outlook. As you journey through this valley of fear, keep in check what is imagined and what is real, keep your doctor follow-ups, and build your resilience and positive thinking.
Chen Yanni is a medical social work in psychosocial oncology at the National Cancer Centre Singapore.