Coping with fear and anxiety
Living with leukemia often means living with uncertainty: test results, how treatment will work, the family’s future. In this situation fear and anxiety are natural. But when anxiety takes over sleep, appetite and everyday life, it needs to be worked on. This topic explains how anxiety arises in the body, simple methods you can try at home, and when a specialist’s help matters.
01Short answer
02Simple explanation
When fear arises, the body sounds an “alarm”: the heart beats faster, breathing speeds up, muscles tense and the stomach tightens. This is the ancient “fight or flight” response. Even when there is no real danger, the brain can treat it as real.
Anxiety often starts with “what if...?” questions: “What if the test is bad?”, “What if treatment does not work?” Thoughts go round in circles, and with each loop the fear grows a little.
Leukemia has its own moments of anxiety: waiting for a bone marrow result, the start of a treatment course, going home from hospital or the end of treatment. Knowing about them in advance means you can prepare.
Important: a racing heart, breathlessness, shaking and sleeplessness are not always “just nerves”. They can be signs of anemia, fever, infection or the effect of medicines such as steroids. Always tell your team about new or strong symptoms.
Anxiety eases with skills that can be learned: slowing your breathing, bringing attention back to the present, putting thoughts on paper. These may feel hard at first but become easier with practice.
03Scientific explanation
How common is anxiety? According to a 2011 meta-analysis, anxiety disorders confirmed by psychiatric interview were found in about 10% of people in oncology and haematology settings, and individual anxiety symptoms are even more common. According to the American Cancer Society, people who have had cancer are at higher risk of anxiety, and untreated anxiety can make treatment and recovery harder.
Screening and a stepped approach: the 2023 ASCO and 2023 ESMO guidelines recommend regularly checking everyone with cancer for anxiety and depression using simple questionnaires. For mild symptoms, information and support are offered; for moderate and severe symptoms, psychological therapy takes the main place, especially cognitive behavioural therapy (CBT) and mindfulness-based approaches. Medicines are considered for severe symptoms or when therapy is not enough.
Mindfulness: according to a 2019 meta-analysis that combined 29 randomised trials (3,274 participants), mindfulness-based programmes reduced psychological distress, anxiety, depression, fear of recurrence, fatigue and sleep problems in people with cancer; the effect was small but statistically significant. According to NCI, meditation and relaxation can help reduce stress and anxiety.
Fear of recurrence: according to a 2013 systematic review, fear of the illness coming back is one of the most common worries among people who have had cancer, and for some it lasts for years. This fear is normal; when it limits daily life, specialised psychological help is useful. Because anxiety medicines can interact with leukemia drugs, only a doctor should choose them.
04What happens in the body?
When do you need help urgently?
If you have thoughts of harming yourself, call 103 or 112 straight away and tell someone close to you. Chest pain, sudden breathlessness, confusion or a temperature of 38 °C or higher should not be put down to panic: contact your team or emergency services straight away. If panic attacks keep coming back, or anxiety stops you coming to treatment, tell your team the same day.
Slow breathing: a simple method
Sit comfortably and relax your shoulders. Breathe in slowly through your nose, feeling the air fill your belly, counting to five. Then breathe out slowly through your mouth, again counting to five. Repeat for 3–5 minutes. Making the out-breath a little longer than the in-breath sends the body a “no danger” signal.
Bringing attention back to now
When your thoughts race ahead, name five things you can see, four sounds you can hear and three objects you can touch. Feel your feet on the floor. This “grounding” method takes the brain out of the “what if...” loop and brings it back to the present moment.
While waiting for results
Ask in advance when and how you will be told the result. Do not leave the waiting days empty: plan small tasks, a film, a conversation. Avoid searching the internet late at night. Write your worries down and set aside 15–20 minutes a day as “worry time”; at other times, when a worry comes, tell it “I will look at you later”.
Support in everyday life
Go to bed and get up at regular times where you can. Move as much as your team allows; even a short walk helps. Cut down on caffeine. Make time for things you enjoy. Talk with someone you trust. For some people, prayer, worship or a spiritual practice also brings calm.
Questions you can ask your team
Could these symptoms be anxiety, or could they be anemia or a medicine? Do steroids affect my mood and sleep? Can I see a psychologist or psychiatrist? Is there a CBT or mindfulness programme? Is an anxiety medicine compatible with my leukemia treatment?
05The anxiety loop and how to break it
Anxiety goes round in a loop, but it can be stopped at every link.
06Ways to ease anxiety (simplified)
| Method | How to do it | When it helps |
|---|---|---|
| Slow breathing | In through the nose for 5 seconds, out through the mouth for 5 seconds, for 3–5 minutes | Panic, tension, before sleep |
| Grounding | See 5 things, hear 4 sounds, touch 3 objects | When thoughts go round in circles |
| Worry time | Write worries down for 15–20 minutes a day | When worry spreads across the whole day |
| Physical activity | Walking or light exercise within what your team allows | Tension, sleeplessness, tiredness |
| Mindfulness, meditation | Turning attention to the present without judging | Long-term stress, fear of recurrence |
| Cognitive behavioural therapy | Working with a specialist on patterns of thinking and behaviour | Moderate and strong anxiety |
| Medicines | Only when prescribed by a doctor | Severe anxiety, or when therapy is not enough |
* This table is general information. Your treatment team and psychologist decide together which method suits you; only a doctor prescribes medicines.
07Key terms
- Fear
- A natural reaction to a specific danger.
- Anxiety
- Tension about a danger that might happen in the future.
- Panic attack
- Sudden intense fear with a racing heart, breathlessness and shaking.
- “Fight or flight” response
- The body’s automatic preparation for danger.
- Grounding
- A way to bring attention back to the present through the senses.
- Cognitive behavioural therapy (CBT)
- Psychological therapy aimed at changing patterns of thinking and behaviour.
- Mindfulness
- The skill of turning attention to the present moment without judging.
- Fear of recurrence
- Fear that the illness will come back.
- Screening
- A simple check to find problems early.
- Psychiatrist
- A doctor specialising in mental health who can prescribe medicines if needed.
08Key points
- Fear and anxiety are natural with leukemia.
- Waiting for results is one of the hardest moments, so prepare for it.
- Slow breathing sends the body a “no danger” signal.
- Grounding brings your thoughts back to the present.
- A racing heart and breathlessness can be signs of anemia or fever.
- CBT and mindfulness are proven methods.
- Only a doctor chooses anxiety medicines.
- Asking for help is part of treatment.
09Frequently asked questions
Does anxiety affect the course of leukemia?
There is no reliable evidence that anxiety makes the leukemia itself worse. But it can worsen sleep, appetite, how well you tolerate treatment and quality of life. That is why easing anxiety is worthwhile.
Why do steroids make me irritable and sleepless?
Steroids such as dexamethasone and prednisolone can cause mood swings, tension and sleeplessness in some people. This usually passes when the medicine is stopped. Tell your team about such changes; there are ways to help.
How can I tell a panic attack from a heart problem?
It is hard to tell them apart reliably at home. With chest pain, sudden breathlessness, fainting or a fever, call emergency services. If symptoms keep coming back, your doctor will check you and explain what to do.
Is it dangerous to take medicine for anxiety?
Well-chosen medicines help many people. But some medicines interact with leukemia treatment. So do not take any sedatives or herbal products on your own; the choice is your doctor’s.
How can I get through waiting for results?
Find out the date of the result, fill the waiting days with small plans and keep someone close nearby. Use breathing and grounding. If you would rather hear the result at an appointment than by phone, say so in advance.
Treatment has ended but I am still afraid. Is that normal?
Yes. The end of treatment is an unexpectedly anxious time for many people, because frequent visits stop. Fear of recurrence is very common. If it is limiting your life, ask for psychological help.
10Questions for your doctor
Take these questions to your appointment. The ones you save are collected on the “My questions” page and stay on this device only.
What can I do if fear and anxiety disturb my sleep and daily life?
How can I be referred for psychological support?
If I need medicine for anxiety, is it compatible with my treatment?
Is there a support group for patients?
12Sources
- National Cancer Institute (NCI). Adjustment to Cancer: Anxiety and Distress (PDQ®) – Patient Version
- National Cancer Institute (NCI). Meditation and Relaxation for Your Mind and Body
- National Cancer Institute (NCI). Psychological Stress and Cancer
- American Cancer Society. What Is Anxiety?
- American Cancer Society. Depression and Cancer
- Macmillan Cancer Support. Support with cancer and anxiety
- NHS (UK). Breathing exercises for stress
- NCCN Guidelines for Patients. Distress During Cancer Care
- Journal of Clinical Oncology, 2023. Management of Anxiety and Depression in Adult Survivors of Cancer: ASCO Guideline Update
- ESMO Open, 2023. Anxiety and depression in adult cancer patients: ESMO Clinical Practice Guideline
- Psycho-Oncology, 2019. Mindfulness-based interventions for psychological and physical health outcomes in cancer patients and survivors: A systematic review and meta-analysis of randomized controlled trials
- Journal of Cancer Survivorship, 2013. Fear of cancer recurrence in adult cancer survivors: a systematic review of quantitative studies
- Lancet Oncology, 2011. Prevalence of depression, anxiety, and adjustment disorder in oncological, haematological, and palliative-care settings: a meta-analysis of 94 interview-based studies